Tuesday, June 7, 2016

We’re in Sunnyvale, CA

Once again I’ve not updated our blog in quite awhile.  Can’t say I have lots of new stuff to report but will write something.

Short story is, Lorraine is basically the same and her therapists are still working with her on the same stuff although she is showing several signs of improvement.  Her mental condition is better although she is still having some  confusion at times and she doesn’t talk with folks too much.  She can talk just fine but for some reason she just doesn’t converse like she used to.  She has trouble keeping her concentration, especially if she is around two or more conversations going on at the same time. 

Her physical condition is about the same, she still can’t stand on her own but her sitting posture is much improved.  The place she is staying doesn’t use a slide board to transfer her, they are still using a sling and machine (Hoyer), not much fun. 

After Lorraine’s stroke last August she had lost all control of her left side even to the point where if I was sitting on her left side, she didn’t know I was there.  She has regained lots of that back, she now knows what’s happening on both sides.  She also lost her ability to swallow, even had a feeding tube for a few days but she has been on an unrestricted diet since a couple of weeks after her stroke. 

Lorraine did get therapy when she was in Washington, a month’s worth when she was at Shuksan then another 6 weeks or so at the place in Lynden.  I have described her therapy treatments there in earlier blogs.  She finished all the therapy she could get from our insurance (Medicare) then she was only getting someone to help keep her joints active by doing range of motion on her legs and arms. 

We moved Lorraine down here to California just before Christmas and she is staying at an assisted living facility.  She has made lots of friends there and likes the place.  They do have a very good dining facility with good food and she can order off a menu for all meals.  She is glad to be down here close to our daughter and grand daughter, that is a big moral boost for her. 

They have a basic plan (price) with extra amounts depending on the level of care the resident needs/requires.  Lorraine needs two aides to assist her whenever they transfer or attend to her needs.  She also is unable to handle her medicine as needed so they take care of that task for her also, she takes lots over a 24 hour period.  They do not have or offer any therapy however. 

After Lorraine’s stroke last March she started going to an outpatient therapy place for speech therapy.  She also had a battery of doctors that she was seeing down here.  This is when they found she had two aneurysms that needed to be repaired, I discussed these in a prior blog, back in May/June of last year I think. 

One of the reasons we decided to come down to California was because of her doctors and to get her some therapy at the same place she got speech therapy last year.  She did get a couple weeks of in-room therapy but that didn’t work well, I didn’t like the therapists plus they didn’t have the equipment they needed.  But we finally got Lorraine into the therapy place as an outpatient. 

Lorraine had trouble sitting upright, she thought she was sitting straight when she was leaning to the left about 45 degrees.  She couldn’t hold that position and would fall over without support or someone holding her.  When she was “forced” to sit in an upright position, she thought she was falling over to her right.  Of course, if she can’t sit, she can’t stand so that is one of the major things all of the therapists worked with her to correct.  There isn’t a magic thing to do, just work with her to sit upright over and over, physical repetition is the best way to build new pathways in her brain I’m told. 

Now Lorraine can sit straight without falling for long periods of time without assistance.  The therapists have her do things while sitting to make it feel more normal.  She reaches for things, bats a balloon, picks up and passes things to different locations and leans to both sides and forward.  The forward leaning is necessary for the next step, using a slide board better.

The therapists have also been working with her to stand in a lift machine.  They put a strap around her, attach it to a machine and lift her into a standing position.  She can’t fall as her knees are held tightly against a pad and the strap keeps her from falling backwards.  The first two times they attempted to use this, Lorraine was VERY scared, crying and telling them to stop as she was falling.  Also her muscles were hurting, they haven’t been used in many months.  

We had a talk later about this later and Lorraine said she was going to stop being afraid and would work with this machine.  Things started getting better thereafter, she wasn’t just not afraid but was actually working better with the therapists.  She has used this machine a dozen times now, her longest standing time has been 25 minutes. 

They also had her attempt to pull herself into a standing position using hand rails or the parallel bars.  It takes two therapists using maximum assistance to pull this off but she has stood upright this way about 8 times too.  She has lost a lot of her strength since her stroke, she hasn’t used lots of these muscles since last August so she can’t stand up without maximum assistance but even that is getting better. 

There are three different disciplines of therapy; speech, physical and occupational.  Lorraine needs all three but we found out her insurance (Medicare) will allow a certain amount of occupational but count speech and physical in the same bucket.  In other words, she was able to get 28 sessions of OT but only 28 sessions of both/either speech and physical.  Therefore, we elected to only have OT and PT work with her to attempt to maximize her physical improvements. 

She has been progressing a bit better, having both PT and OT twice a week but still not getting to where she wants to get to.  The therapy place is associated with a hospital and they have an in-patient therapy group that give acute therapy.  This place only has 15 beds and most people that are there have come directly from the hospital for therapy.  We were working with Lorraine’s therapists to see what it would take to get Lorraine into this program. 

They told us they very seldom accept someone in their program from outside, only one or two a year come in from outside.  The average person only stays for two weeks but due to the amount/type of therapy they mostly go to an assisted living facility or their home when they leave.  This is similar to the program the hospital in Bellingham has so I know a little bit about how it works.  We attempted to get Lorraine into the program in Bellingham but she just wasn’t up to the physical work needed and they didn’t think they could help her that much at that time. 

Anyway, we met with the assistant director who reviewed Lorraine’s records and talked with her therapists; she said Lorraine would probably be a good candidate for their program but we would have to get accepted from the head doctor.  We made an appointment to discuss Lorraine’s possibility of getting accepted.  He didn’t want to accept her as they have a very good record of showing great improvement and wasn’t sure if she would show that much improvement.  In fact, the week after we talked with the head guy, they were notified they were recognized as one of the top 5 in the nation in their treatment for stroke victims. 

Once I heard that, I doubled my attempt to get Lorraine accepted and finally got the head doctor to say if Lorraine could show improvement in her transfer into/out of her wheelchair, he would accept her.  So guess what her therapists were working on 4 times a week, yep, transfer, transfer, transfer.  She was able to help while using a slide board that they only needed one therapist (or me after I was trained) to assist her with her transfer.  Another visit with the head guy and we had a deal, they would accept her and see how much they thought they could help her. 

We moved over there on Monday (she stays there and is actually admitted to the hospital as an in-patient) and have high hopes to see much improvement.  Lorraine still has a long range goal of walking the beach in Hawaii with our grand daughter.  Anyway, they will be giving her all three therapy disciplines 6 days a week.  Lorraine has been getting therapy 4 times a week plus the transfer from her place to the hospital (about 30 minutes each way) so we figure she should be able to handle the work needed pretty well. 

The therapists told her that they will work her hard, won’t stop just because “it hurts”.  She is expected to work hard and she said she is going to do that.  They actually had a meeting about her already and decided to keep her there and give her therapy for three weeks with a possible fourth week depending on her progress. 

Yesterday morning I got her place and was met by her nurse in the hallway.  Lorraine didn’t remember where she was, why she was there and wouldn’t take her medicine.  She was also mad at me for “being in cahoots” with them, ha.  Once we got her up and I pushed her around the hallways, she remembered being there.  She just wasn’t ready to leave her other place (which we are keeping and will go back there after she is discharged). 

She did get her three therapy sessions yesterday and today and they are working on her transfers using a bit of a different technique.  I told them that Lorraine does better when they explain and show her what they are wanting her to do for each therapy session and they are working with her very well. 

They don’t even have a sling and machine lift (Hoyer) so Lorraine has to use the slide board for all transfers.  They are doing lots of transfers (repetition is necessary) in each session and Lorraine is already getting better.  In fact, the PT  today was trying to get Lorraine to stand upright by pulling herself using a handrail.  She didn’t quite get there but the therapist told us if she would have stood up, they would have attempted to get her to take a step or two.  Wow, two days and they are already talking about taking steps. 

I don’t have unrealistic expectations about her recovery but I sure hope she exceeds what I think she can do.  But if she can walk the beach in Hawaii, I’ll gladly buy the tickets for our family to go over there with us!!! 

Short update on Susy and Katie.  Katie is now 11 and was initiated in Rainbow, an organization for young girls that is associated with the Masons.  She finished up her school year yesterday and will be moving to middle school next year.  She had her graduation yesterday, unfortunately we were unable to attend as Lorraine is a patient in the hospital and we didn’t know it takes a couple of days to get permission to go out. 

Susy had shoulder and neck surgery last year and has recovered pretty well.  She still has a numb spot on her neck from the surgery, after a year now I doubt if it ever comes back.  She had a gall bladder attack a month ago and had it removed.  She has just returned to work after that surgery and of course found her desk pilled high with work. 

The wheel chair accessible van we bought has sure come in handy.  Without it, I don’t know how we would have gotten Lorraine down here to California and for sure couldn’t have got her to all the therapy sessions.  Plus she likes to go out somewhere a couple times a week, mostly shopping somewhere. 

The weather down here has been better for Lorraine’s arthritis, we’ve already had two days that got over 100, very unusual for this area, especially this early in the spring.   Most of the time we have sunny days with the high temps getting into the 80s.  We have had some rain, normal amounts but not enough for them to say they 5 year draught is over.  The water reservoirs are still not full but there is an above normal amount of snow in the mountains which should help as it melts. 

I’ve been granted approval to stay at the Elks Lodge’s RV park in Santa Clara.  They have 9 RV sites with power and water to each and a common dump site.  They normally only allow someone to stay here for a maximum of two weeks then they have to move out for at least three days before they can return.  I sure appreciate them allowing me to stay here without having to move, it allows me to spend all my time with Lorraine every day. 

Once again, I will ask for your good thoughts and prayers for Lorraine’s recovery.  She really likes to hear from her friends via phone calls, emails, Facebook or snail mail and I read each and every one to her.  She can’t handle her computer to “do” Facebook by herself and that is one of the things her speech therapist will work on with her. 

I know everyone has ups and downs in their lives and family but right now all my thoughts and actions are focused towards Lorraine.  I don’t necessarily contact our friends and family as much as before but I do think about them, just don’t follow through with contact.  Please don’t think you are forgotten, just ignored, ha. 

I’ll finish this and get it sent out now, without pictures once again. 

I just read this to Lorraine and she wanted me to add a HI from her to everyone. 

Thanks   Lorraine and Chuck

Sunday, January 17, 2016


I know its been a long time since I’ve sent out an updated blog so guess I’ll start one and see if I can get up-to-date on our happenings and Lorraine’s recovery.  Short version is we have moved Lorraine to an assisted living facility here in California, she has not shown much recovery since the last blog. 
Last time I wrote a blog Lorraine was in Lynden, Washington at Christian Health Care Center (CHCC).  She was in a shared room but her room mate wasn’t in the room very often except to sleep.  Sometimes she would be in the room when I wheeled Lorraine into it and she would start yelling at us to get out of her room, even threating to call 911.  Of course, she had dementia pretty bad so one of the nurses would come to get her out of our way. 
CHCC is a skilled nursing facility, has all the different type care folks need, from short term like recovering from surgery to long term to end of life.  They have two different types of therapy there, one is to attempt to help folks regain as much recovery as possible.  This therapy can be pretty intense but due to insurance rules, is usually less than 100 days or until no signs of progress is shown.  After that, they have recovery therapy, basically just move the affected limbs to keep the joints and muscles from getting stiff.
Lorraine didn’t get the 100 days of therapy due to her lack of progress.  The therapist all told us they thought she MIGHT have more recovery with more therapy but they couldn’t do it due to the rules.  I was told I couldn’t even pay for it out of pocket, not allowed either.  But if she could move into an assisted living home or even back into a regular house with care there, our secondary insurance would cover more therapy.  So that was what I was working towards, getting her out of the nursing home and into someplace where she could start getting therapy once again.
I was working on lots of different possibilities, keeping her in Washington State either in an assisted living facility, home health care or into our house which was empty.  I was also looking into moving her out of state into an assisted living facility.  I was looking into moving her to Palm Springs or somewhere in the South San Francisco Bay area to be closer to our daughter, Susy, and grand daughter, Katie. 
All of these options had plus and minus so I spent lots of time and effort to check out each one.  Finally, after talking with Lorraine to make sure she was involved in making the decision, we decided to go to the Bay area.  There are services that help put folks in touch with assisted living places so I contacted one to help.  I was given a list of 4 places and picked out one that said they could give Lorraine all the care/services she needed.   After working with them for about a month, they all of the sudden decided they couldn’t give her the care she needed and told us they could not accept her.  Damn, a lot of time and effort down the tube.  Besides being really hard to move from a care facility in one state to a different state, it’s double hard to do it via phone and email. 
I went back to the service folks and told them what was going on.  By now, it was the first of December and I really wanted to have Lorraine moved in before Christmas.  I really figured that it wasn’t going to happen based on how long it took the first place to make their decision.  I had the service place do some work on their end and find me a place that would be able to give Lorraine the care she needed without question, before I spent any more time on a wild goose chase. 
They finally got back to me with a place in Sunnyvale, Ca. that said they could supply all the care Lorraine needed and they had an opening.  I asked Susy if she would drive by and check this place out for me while I continued with the paperwork from CHCC and Lorraine’s doctors. 
In the mean time, I was still having some issues with the care Lorraine was receiving at CHCC but every time I complained something would happen to Lorraine, either she would get hurt or they would delay checking on her when she pushed her call button.  I was getting fed up with this actions and talked with other folks who had people there and they also were having problems but had the same reactions whenever they complained so most folks didn’t complain. 
Lorraine did make some friends there with some of the residents, their family members, aides, nurses and therapists.  There were only a few that I was having issues with but they were some of the long term folks and firmly in place. 
I was also trying to find and purchase a wheel chair accessible van and finally got one from Woodinville, WA., just outside Seattle.  Once I got that, it was much nicer for Lorraine as I could take her out on outings, see her sister and go to doctors as needed.  She really liked getting out and it helped her to have something to look forward too also. 
The van I got is a 2013 Toyota Sienna that has been converted to carry a person in a wheel chair.  It is a mini-van that has three rows of seats, similar to the Saturn Outlook we used to have.  To convert it, they cut the floor out from in front of the driver’s/passenger's seat all the way back to just in front of the back row of seats.  They put in a new floor that is lowered by about 10”, don’t reinstall the second row of seats because they install anchor spots so the wheel chair can be placed in the driver’s position, front passenger’s position or where the second row of seats would have been.  In our case, Lorraine rides in the front passenger’s position where I wanted her to be. 
The car has a “false” or double floor with a built-in ramp sandwiched between them.  With a push of a button the side door opens, the right side of the car lowers, the ramp extends and I can pull Lorraine’s wheel chair into the van.  With some maneuvering to get it in place and anchored down, we put on her seatbelt and are ready to go.  One thing I have to be aware of is it takes about 8’ of space on the right side of the car to get the ramp out and get Lorraine’s wheelchair out too.  This means the normal handicapped parking sites usually aren’t big enough so sometimes I have to park out in the back or block the isle when we are loading/unloading.  But it’s working out and we don’t have to rely on other folks or the handicapped bus. 
We were able to use this van about 2 to 4 times a week, like I said, Lorraine really liked getting out.  We heard about the senior center in Lynden, they have lunch 5 days a week and would be having a big Thanksgiving dinner for lunch the Friday before Thanksgiving.  We signed up and got there early to make sure we could find a place to park and get a spot at a table for her wheelchair.  We had a good meal and signed up for Christmas dinner in case we were to still be in town, hoping we wouldn’t be.
Lorraine’s sister was very busy being a care giver to her husband who was having some severe medical issues so she couldn’t come by to see Lorraine as much as she would have liked.  We did go by their house to see them a couple of times but their house doesn’t have a ramp so John would come outside and sit on their deck while Lorraine would be down on the patio.  Sometimes, her sister would just come and sit in our car with Lorraine and have a visit.  A couple of times I was able to talk her into meeting us somewhere for lunch, especially if she had to be in town anyway.  They both really enjoyed this visits and I’m really glad they were able to get together as often as they did. 
While Lorraine was at CHCC I was staying in our motor home at our house, about 45 minutes away.  I usually got to her place in time for breakfast and left after she was in bed.  Whenever I had errands to run I would let them know and ask them to spend more time with Lorraine as she was used to me being there. 
I don’t know for sure if that happened or not but the one day I was unable to be there at all, I got a call from the nurse letting me know that Lorraine had been sitting in her wheel chair in her room, alone, when she attempted to stand up so she could find me.  Of course, she can’t stand or walk and immediately fell.  Luckily the nurse happened to be right outside her room and heard her fall and call out for help.  They got her into bed then called me to let me know what happened.  I was driving back from Seattle (about 70 miles away at the time) so I told them to give her some extra pain meds and a strong sleeping pill. 
The next day Lorraine was really hurting, she pretty much did a face plant when she fell.  Her chest was really hurting as well as her left hand (which didn’t have much feeling in it).  I was going to take her to the hospital for x-rays but they have a mobile x-ray tech that can come by and do x-rays there.  I had them schedule him in that day and luckily she didn’t have any broken bones, just some bad bruises and lots of pain. 
I don’t remember for sure but I think it was on December 16th when I got the official word that this place in the Bay area would take Lorraine.  I talked with about 4 different folks there, explained the care Lorraine was getting, had her doctor send some paperwork stating the same and also had CHCC send the same info to them too.  I wanted a firm guarantee that she would have a place there when we got there, otherwise we wouldn’t head down. 
Finally we got everyone to agree everything would work out and we made plans to head out.  I had three days of running to get things in order at our house before we left.  We also were there for the Christmas lunch at Lynden senior center too, Lorraine’s sister was able to meet us there.  
We knew it would be a rough time for Lorraine to ride in the car all the way to California, I figured maybe two overnight stops.  I would have to transfer Lorraine from her wheel chair to her bed and knew it would be really hard, especially as she would be really tired and probably couldn’t help much. 
So I asked Susy if she would be able to come up and ride down with us to help me with Lorraine’s care.  Susy had a big project at work that was due in a week and couldn’t get up there on Friday.  But we worked out a deal where she would fly into Portland, Oregon about the time we would be driving through there.  I was to pick her up at the airport and she would ride with us. 
One the way to CHCC on Saturday morning, I got a call from Susy, she had got notice from the airline that they had cancelled her flight and she wouldn’t be able to get into Portland until 11pm, not something that would work for our schedule.  She was able to get them to put her on an earlier flight, one that would get her in a couple hours before we got there.  Whew, that was pretty close to being a show stopper for sure but she fixed it. 
Anyway, Lorraine and I started out right after breakfast and headed South.  Susy called to let me know she made it to Portland and would meet us at a mall vs the airport.  Well, all righty then, that would work out.  As we got closer, Susy called to let me know the traffic was getting pretty bad at the mall and suggested she meet us at the exit ramp vs the mall.  With a couple phone calls, we managed to get the timing down to where I was going to get there at the same time she would walk over.  But of course, I hit some bad traffic and that threw our timing off a bit.  Susy suggested we meet at a Christmas tree lot instead, she would wait there.  So that’s what happened and it worked out ok. 
We got back on the road after a quick stop for lunch and headed out.  Susy kept checking the weather forecast and it looked like the mountain passes we would be traveling would be ok on Sunday but would have snow on Monday.  We decided to continue on to Medford, Oregon, a bit more than halfway before stopping for the night.  Even though that was a long, hard day for Lorraine, she didn’t complain. 
We got checked into the motel and like I figured, had a difficult time getting Lorraine out of her wheel chair into bed.  She is unable to stand and turn, even with help so I had a slide board with us to do the transfer.  Basically this is a board that bridges the gap between her wheel chair and the bed and we use it to slide her over.  Lorraine was tired and scared and really fought us but finally we got her over and in bed. 
We got Lorraine changed and ready for bed and I figured she would fall asleep quickly but not to be, I think she was too tired to sleep.  Finally I gave her a sleeping pill and even after that it took awhile.  But once she fell asleep, she slept pretty good, I did have to wake her up and give her pills every four hours. 
Next morning Susy and I got Lorraine up and ready for travel in her wheel chair.  Susy checked to forecast for the passes and found it had changed some, snow forecast today.  We decided to head out quickly rather than stop for a good breakfast. 
As we started up the first pass, Siskiyou pass in Oregon, there was the sign I was dreading, chains required.  Susy had suggested we stop to pick up a set of chains before we left Medford so we pulled over at the chain-up area.  I expected to find some kids there who we could pay to put on our chains but no one was there.  There were lots of folks there who had no idea of what they were doing but with Susy’s help, we managed to get our chains on and back on the road in fairly short order. 
A few miles up the pass the rain started changing to snow.  We had lots of folks pass us, mostly they were 4 wheel drive type and pickups.  We did see three vehicles overturned alongside the road, none of which had chains on.  I think we hit about 3” of snow at the worse part but it wasn’t too bad.  As we came down the pass, we started getting more rain than snow and before we got to the inspection station just inside the California border the road was once again bare and wet.  I stopped at the inspection station to remove the chains even though we knew there were more mountain passes on our way but they were lower than the Siskiyou pass. 
Sure enough, on the next pass we started getting snow once again but never did have any chains required area.  I think the worse snowy area had about 4” of snow.  Once again, I was being passed by lots of cars and trucks, even some 18 wheelers going way too fast, I thought.  But we didn’t have to chain up and after about 30 miles of driving in the snow, we got back into the rain.  And rain it did, the whole rest of the way.  Heavy rain that they really need here in California but I would rather it waited one more day. 
We had told the place Lorraine was going that we would be there sometime around 4pm.  Of course, with the snow, heavy rain and heavy traffic we were running late.  We kept the place informed of our timing and the guy that was to check us in said he would be there whenever we got there, even if it meant he had to stay all night.  I assured him there was no way we would be that late, we would stop and get a hotel room before that. 
It was a bit after 6:30 when we got there and sure enough, they were waiting for us.  As we wheeled Lorraine in the front door, we walked into a meeting that was going on and a number of the residents knew who we were and that we had driving down from Washington.  Lorraine was a bit of a celebrity before she even got there, ha. 
I asked for them to attend to Lorraine as soon as possible as we had been traveling all day.  They did that while I signed some papers then they had the kitchen fix us all dinner.  While there, we got lots of our questions answered and I must say, I was favorably impressed with everyone we had contact with that evening. 
They had Lorraine’s room ready and waiting for her as soon as we finished eating.  Once again, it was a very long day for Lorraine and she handled it very well with little complaining.  But she was really tired and fell asleep as they were in the process of transferring her from her wheel chair to her bed.  Of course, they had to get her changed and cleaned, gave her the medicine and pills then she was out for the count. 
Susy was really tired too and I wanted everyone to head home so Lorraine could have a somewhat quiet night.  I got a pillow and blanket and slept in her room, I wanted to be there in case she woke up in a strange place and got scared.  One major difference between the nursing home and this assisted living is, in the nursing home all the doors were opened all the time so the nurses and aides could check out the residents whenever they were walking the hallways while here it’s more like individual apartments, the residents are even issued keys to lock their doors whenever they want.  I tell that to explain why Lorraine may have been scared plus it might be awhile before someone would actually check in on her if she work up and was scared.
Lorraine slept well that night, the nurse and/or aide checked in on her every hour or so, woke her up to change position or take meds.  Next morning I asked her how she slept and she said she slept well.  I asked her if the nurse coming in bothered her and she didn’t remember any of people coming in, she was that tired.  I was impressed with the nighttime nurses and aides, they were careful to introduce themselves and explained to her who they were and why there were there. 
Next morning they got Lorraine cleaned up and ready for breakfast.  We went down to the dining room and again a few of the residents knew who Lorraine was even though they had never seen her before, ha.  The dining room is open seating, you can sit anywhere you like although they warned us some of the residents get upset if someone sits in “their place”.  They gave Lorraine and I a table that was empty then asked her what she wanted for breakfast.  I was surprised to see that you could order anything you liked for breakfast, eggs any style, omelets, pancakes, waffles, hot cereals, cold cereals, fruits, melons, toast, wow. 
Later that day Mark and Katie came by to see Nana.  The look on Lorraine’s face when she saw Susy waiting for us at the Christmas tree lot in Portland was something to see but nothing compared to when she saw Katie in her room.  Katie seemed a little off, I guess she really didn’t know what to expect but that soon wore off and they were soon back to “normal”.  Katie had drawn some pictures for Nana and couldn’t wait to show them to her.
Susy, of course, had to work on Monday, her big project was coming down to the wire and she had to finish a few things but she did come by after work.  Lorraine was sure glad to see everyone, it really made me glad that we had made the decision to come here vs the other options.  
I had a few things that had to be worked out, one big one was to get a hospital bed for Lorraine as soon as possible.  This place furnished Lorraine’s room with a regular twin bed, chest of drawers, night stand, table lamp, sheets and towels but they were charging us $35/day for them.  I wanted to get a hospital bed so Lorraine could adjust it and wanted to get out of the daily charge as soon as possible too.  
Lorraine wanted to do some more shopping before Christmas but I told her I really didn’t want to fight the crowds and traffic.  We aren’t really into buying online yet so didn’t do that either.  I gave Susy the presents that we had bought in Washington and brought with us and asked her if she would wrap them for me.  Of course, Susy didn’t want to wrap her own presents, ha.  
I had made an appointment with Lorraine’s general doctor here so we saw her on the 23rd.  She reviewed all of Lorraine’s records and prescriptions.  Lorraine was in her wheel chair, of course, so she couldn’t really check her out as much as she would have liked but soon had everything under control.  She wanted Lorraine to see her neurologist and heart doctor as soon as we could so they could check her out too.  She express surprised that Lorraine had another stroke as they had done everything they knew of that would keep her from ever having another stroke and really wants to find a cause for these.   
Christmas morning Lorraine got up and had breakfast then I got her into our car and headed over to Susy’s house for Christmas morning.  Boy was Lorraine happy to be there, we had almost given up on the thought that we could pull it off yet here it was happening, yea.  We headed out later to eat then Lorraine had to get back to go to bed and have a nap, she was beat but very happy. 
Lorraine was still tired from the trip down, it took a lot out of her so I tried to make sure she got a nap either in the morning or afternoon, sometimes both.  She was also complaining of pain on her rights side, the nurses were worried about her appendix but she had that removed years ago.  I thought it was a pulled muscle from when we had to transfer her from wheel chair to bed in the hotel room on the way down.  The pain was really bad when she was laying down but mostly subsided when she was in her chair. 
I had a made an appointment with her heart doctor on Monday after Christmas.  He also checked Lorraine as best he could with her in the wheel chair.  He also expressed surprise that she had another stroke as he believed she was getting the proper medical care to insure she should never have had another stroke.  He does want to do do an echo-gram next week to check out her heart and talked about implanting a heart monitor at a later date.  He also wants to get to the bottom of the causes of her strokes. 
Susy was on vacation between Christmas and New Years so I took advantage of that to fly back to Washington, pick up our MH and drive it down here.  I left here on Tuesday morning, our friend Richard picked me up at the airport in Bellingham and drove me over to our MH.  He helped me get a few things taken care of before he had to get to a meeting.  Thanks Richard for picking me up and helping me, sure appreciate you doing that!!
I finished up with the things I had to do at our house, got it closed up then got the MH ready for travel and took off about 1pm, headed South.  I drove until about 7 that night, made it South of Olympia before I pulled over for the night.  I had winterized the water system on the rig and needed to flush the antifreeze out and get it ready for normal living use once again.  Only problem was the RV park I stopped at didn’t have sewer hookups so all I could do was flush the lines into the holding tanks.  But that was enough that I could have drinking water and could take a shower the next morning. 
I was in contact with Susy the next morning to check the weather in the passes, worried about snow once again.  I would have to detour to the coast if they had chains required because I don’t have chains and wouldn’t use them if I had them.  But I was able to get through the passes without any snow although I did have a few places where I had “heavy rain”, ha.  Whew, glad I made it. 
I had to stop one more time for an overnight rest and decided to stop at a casino near Corning, CA. that we have stayed at many times.  They have a nice RV park there and a good buffet, I was planning on taking in both.  But when I got there they told me at check in all the sites were taken.  They have 50 sites and my best guess is there were at least 50 more rigs in the parking lot of the truck stop, I was one of them.  So once again I was unable to dump and finish rinsing the water lines and holding tanks. 
When I got up the next morning, I drove through the RV park and found at least 6 sites were empty, either someone didn’t check in or they left before 6:30.  Anyway, I pulled into one of the empty sites and rinsed the whole water system and holding tanks.  I really needed to do this as I would be parking our MH at the Elks and they don’t have sewer hookups at each site but only have a dump station.  It would have been hard to do this flushing there so I really wanted to get it done before I got there. 
I made it to the Elks about 1, got semi setup then asked Susy to pick me up and went to see Lorraine. I was surprised that she wasn’t mad at me for being gone, she usually is angry whenever I’m not with her.  But we had discussed me being gone and I left her a note so someone could read it too her whenever she wondered where I was. 
Lorraine was still having the pain on her right side plus the nurse told me they had seen a red spot on her lower back.  I asked to see that spot and it sure looked like shingles again.  The nurse said she would have to be quarantined for 48 hours after she started taking anti-virus medicine.  Because of the pain and the shingles, I took her to the hospital that night, New Year’s Eve.  I expected it to be packed but guess it was early enough that it wasn’t too busy. 
They had a nurse call us back into an office to get paperwork started then back to the waiting room.  About 30 minutes later it was into another office to talk to a different nurse who wanted to know more about why we were there, then back to the waiting room.  About 15 minutes later we finally got escorted to a room but they weren’t prepared to transfer her, they didn’t know she couldn’t stand or walk, guess the early discussions didn’t make it back to the real emergency room nurses. 
Finally they found a lift that would work to transfer Lorraine onto the cot in the room.  They were checking her for appendicitis even after I told them she had it removed years ago.  I suggested they check her for a urinary track infection and kidney/gal stones.  They didn’t know how they could do the CT scan without Lorraine being able to stand/walk, I would have thought they had seen folks in wheel chairs before. 
But while they were working out a possible solution the results came back to show she did in fact have a urinary infection.  That would explain the pain in her side, sure glad we found the problem.  So they gave her some anti-virus and some anti-bacteria pills and prescriptions.  We were back in Lorraine’s room about 5 1/2 hours after we left, not too bad. 
Lorraine’s pain was much better that night, she slept well she told me.  I was sure glad to be back with her, I really missed being with her and worried about her while I was not there even though I knew Susy would spend as much time with her as she could and the nurses and aides would take good care of her too. 
I have taken Lorraine to her neurologist and her eye doctor this past week.  Once again, the neurologist said he couldn’t explain why Lorraine had this stroke, he was one that had told us that she was getting the best medical care possible before we left to head North last July.  But he too wants to get to the bottom of the cause and will work with her heart doctor and the brain surgeon that had repaired her two brain aneurysms last April.  
I also took Lorraine to her eye doctor even though she didn’t seem to be having any vision issues after this stroke, unlike the other two.  The doors at this place weren’t wide enough to get Lorraine’s wheel chair through but the doctor did come out to check her as well as he could in the hallway.  He told me that even if we could get her into the exam room she would have to transfer into the attached chair as they couldn’t work with her in the wheel chair, what ever happened to the American with Disability Act anyway. 
Lorraine is taking blood thinning medicines that require her to have a blood test every week and the doses changed as required.  Susy had to take Lorraine out to have this blood test while I was gone and had lots of trouble as Lorraine slid down in her wheel chair and Susy couldn’t get her upright.  I had to take her out for the test twice  and found a place that can do the test with a finger poke vs a blood draw, much better for Lorraine.  We have a standing appointment every Tuesday.  Plus she has follow up appointment with all of her other doctors too so we’ll be going out to the doctors quite a bit. 
But one thing good is happening, Lorraine has started getting some therapy sessions once again.  The physical therapist is working with her to attempt to get some more movement/control on her left leg, the occupational therapist is working with her left arm/hand doing the same.  The speech therapist is working with her to try to get her to converse better, she isn’t having the same issues trying to find the correct word but rather she is just not talking much. 
Lorraine is still having moments of mental confusion, especially when she is tired.  Sometimes she forgets she can’t stand/walk and asks for me to help her stand up so she can walk to wherever.  She wants to talk to folks on the phone but when I hand her the phone, she doesn’t speak much.  She does understand what has and is happening and can make decisions.  She gets tired and needs a nap every day, usually I try to work that in the afternoon.  She gets tired right after dinner and is ready to go to bed by 6:30.  She gets up before 7 every morning.  She gets emotional very easily, in fact, she cries for no reason often.  She likes it when I read her the facebook, email and snail mail notes from friends and family wishing her well. 
Guess I’ll close this by saying she is pretty well settled in here, likes the place and she told the therapists her goal is to be able to walk again.  I ask her what she wants to do and she told me she wants to walk the beach in Hawaii with our son, daughter and grand daughter, sure hope that can happen some day!!  I think it will take a miracle from God as the doctors all tell me that she will probably never be able to stand much less walk.  Please continue your prayers and maybe that miracle will happen. 
I have pictures on Lorraine’s phone but figure I’ll post this without any pictures as I don’t have the proper cable to download them. 
Thanks  Chuck and Lorraine

Saturday, October 10, 2015

We’re in Lynden, Washington

 

10/1015

I have been getting some folks telling me they are wanting an update to hear how Lorraine is doing.  I didn’t realize I haven’t written since the day she moved in here to this care center.  Even though there isn’t too much to report, I’ll do an update anyway.  

Last report I gave the name and address of where Lorraine is now residing, she is able to receive visitors and appreciates all that have stopped by, called, written or commented on Facebook.  I read all the comments and such to her and it makes her glad to know so many folks are wishing her well and praying for her recovery.

This place isn’t the same as Shuksan, nice but its bigger so it doesn’t have the “family” attitude.  Everything is more structured here.  Everyone seems nice although we have had some issues getting to know everyone’s mannerism and such. 

Lorraine starts her day off by getting up before 7am, she’s almost always awake before I get here at 6.  Two nurse’s aides come by to get her ready and in her wheel chair.  After that, I help her brush her teeth and hair, she’s learning how to do more things only using one hand.  Only change to that is when she gets a shower, they get her up a little after 5, give her a shower and lay her back in bed until the normal 7 get up time.  When I get here on those mornings, Lorraine is freezing so I bring her a hot cup of coffee. 

We usually head to the dining room around 7:15 for breakfast.  Lorraine fills out a weekly menu request for her meals but she is always asked when she gets there what she would like.  The food is good and they attempt to give some variables as wanted.  Of course, this being a nursing home, some of the residents need more attention/help to eat so most of the aide are at the tables during mealtimes.  After breakfast, Lorraine is ready to lay down and rest but has to wait until the last wave of breakfast folks are done, usually around 8:45.

Lorraine then rests until they help her get up for her scheduled therapy at 10.  Depending on what therapy they are doing, I am usually asked to leave the room, guess I’m a distraction and try to “help” too much.  They usually have her ride a powered bike for 15 minutes, mostly to keep range of motion in her leg.  Then they move over to the platform where they work on sitting.  She still has trouble sitting upright, she falls to her left still. 

They are working with her to transfer from her wheel chair to the therapy platform or her bed using a slide board.  Basically they position a board under her and bridge the gap between her chair and bed then assist her in sliding over.  If she has a handhold where she can pull herself using her right arm, she does really well but still needs two people to assist.  On these days when the weather is so gray and damp, her arthritis is a limiting factor in how much she can help using her right leg, her knee is so sore from arthritis.  

Then they move over to the parallel bars where they position her wheel chair between them and have her stand.  She can almost pull herself upright using just her right leg and arm but someone has to block her left leg so it doesn’t fold/collapse.  And she also can’t stand straight either, she falls to her left.  

Lorraine is still having some mental issue, sometimes she doesn’t know where she is and gets confused.  The speech therapist is working with her on that and every morning, first thing, I give her a calendar and have her mark off yesterday and we work on what today is.  We also talk about where we are (Lynden) and what building (Christian Health Care Center) and why she’s here (stroke).  That talk seems to help her be more orientated, at least for awhile.   

Lorraine really works hard at therapy and is usually pretty tired after they are finished, usually just over an hour.  She usually just rests in her chair until lunch at 11:30, once again she is in the first shift to eat.  If the weather is nice and it’s warm enough, I’ll usually push her around outside so she can enjoy being out too before lunch. 

After lunch she is once again tired and ready to lay down to rest so we wait for the aides and they help her get into bed.  She likes to get up and get ready to go again around 2:30 or so.  After she’s up and ready, we usually roam the hallways or go outside or check in with the activity room gals to see what’s happening there. 

Dinner is about 4:30 so we head over to the dining room for that.  Lorraine normally likes fish but she’s found the fish here is not very good so she doesn’t order that.  They always have an alternate choice or she can get one of the anytime meals (chef’s salad, grilled cheese, mac salad, hamburger, soup) if she prefers. 

After dinner we usually watch TV and talk for a couple of hours until she wants to lay back down and go to sleep, about 7 pm or so.     I hang around until she is asleep, we have a little routine that we go through when she is ready and she falls asleep pretty quickly after that. 

Lorraine is still getting terrible headaches all day, has lots of pain when as the nerves on her left side start waking up and her joints hurt her most days.  She is on a routine pain management schedule, pills every 4 hours except they give her a long acting one at night.  The aides do come in every two hours at night to change her position and place pillows under one side or the other so she doesn’t have uninterrupted sleep but she manages.  During the daytime she has some rest periods but usually doesn’t sleep much.

Lorraine will probably never be able to move from her bed to a wheel chair to a car by herself again.  Her left side is completely gone although she is able to move her left leg a bit but no strength there.  The therapist were hoping to get her to use a pole by her bedside to move but they don’t think she can do that with the diminished strength in her right side. 

We are still hoping she will be able to graduate to home health care within a few months and I’m going to have one of the therapist go by our house (empty at this time) to check it out with her.  We are also thinking of moving to other places that are drier (Palm Springs comes to mind).  I know I can’t possibly give her 24 hour care like she needs and will have to hire someone to help.  We haven’t even looked into filling that need yet but know these folks are out there. 

Mentally she is all here, she knows and understands what is happening except for a bit of confusion at times.  She is mostly upbeat about her condition although she does have a few down moments.  She is handling this a lot better than I would, that’s for sure.  She really hates being dependent on others, especially for her care but accepts the fact she just can’t do it for herself after the stroke.  And most of the nurses and aides treat the residents with respect and care, I’m glad to see that. 

Lorraine had to go to her regular doctor a few days ago, he checked out her meds, made a few changes and checked her over.  He told her he had heard good things from the therapists here, that she was working hard and showing some signs of recovery.  He told her to just continue on and work hard. 

She also had an appointment with the neurologist who treated her right after her stroke in the emergency room.  This is the guy that worked to send her down to Seattle so they could attempt to harvest the blood clot from her brain.  He called me twice while Lorraine was in the hospital in Seattle, wanted to be kept up-to-date.  Anyway, he checked her meds, made a few adjustments and wished her luck.  

I have been trying to find a wheel chair accessible van to purchase so we can go out on outings.  There are three main models that they do these conversation on, Honda Odysseys, Chrysler and Dodge minivans and regular cargo type vans.  The ramps can be installed in the back (the wheel chair is positioned in the rear row of seats) or the passenger side door (the wheel chair is in the middle row or either front seat area). 

After all my research, I want a converted mini-van with an electric, automatic ramp that goes under the floorboard, not the kind that folds up and blocks the door.  I also want the front passenger seat to be removable so she can ride in that position in her wheel chair.  Of course, this means the middle row of seats have to be out too but the back row of seats remain in position. 

I’ve researched everything I could find between here and South Seattle and found a few but most of them aren’t what I want for her.  I found one a guy in Bellingham was selling but it was in pretty bad shape, the ramp and the sliding door didn’t even work.  Granted, he only wanted $3000 for it but I don’t want something that I have to work on. 

I did find another one near Puyallup, an ‘08 Honda Odyssey, and made a deal with them to have it delivered to me up here.  But when it got here it turned out to be a piece of junk.  The check engine light was one with the associated buzzer going off, the brakes grabbed and stuck, the steering wheel didn’t return to center plus a few other items.  Beside the fact they had problems getting it ready, it was three days late, and didn’t do a good cleaning job on it either.  So once it got here and I took it out for a short drive, I just turned them around and didn’t purchase it.  I called the owner and told him I didn’t want it and explained why, his response was “You do know this is a used car?”  I’m sure I made the right decision on that one but Lorraine was really disappointed, she was really looking forward to being able to get out. 

I also had one that I found in Los Angles, yes, in California.  This was a 2012 Honda Odyssey that a guy had bought for his dad, had it converted but his dad only rode in it 5 times before he passed.  The guy kept this car in the garage until now, it only had 5,400 miles on it.  He listed it on Craig’s list where I spotted it.  We talked on the phone a few times and made a deal to buy the car.  I called and left a message on his phone one evening and he misunderstood what I said, I told him the money from my IRA hadn’t made it to my checking account yet.  He thought I said I wasn’t able to get the money.  Anyway, he sold the car to someone else, a dealer who will just turn around and sell it for a big profit. 

I’ve also been working with a dealer in Minnesota who do these conversation themselves.  They also take used models back, go through them and resell them.  I checked them out pretty well and it looks like a good company and they do a good job of checking out used vehicles.  I’ve talked with them quite a few times and finally decided to buy one from them, a ‘09 Honda.  I called the salesman and made a deal and they were to deliver it to us here. 

When I asked when the driver would head out, figuring a couple of days at the most, he said it would be 5 weeks.  WHAT, I wanted it now, not later.  I didn’t understand they have these used cars in stock but the don’t recondition them until someone purchases one.  The reconditioning process takes 5 weeks, they go through them pretty thoroughly, even to the point of replacing the carpeting and repainting them and they want to make sure they have it optioned out for the new owner. 

Once again, back to the fall back plan but this was my fall back plan.  I spent the night thinking about it and called the guy back in the morning to see if they could do the reconditioning quicker, like two weeks.  He talked with the production manager and said they would attempt to have it done in three weeks then deliver it here.  He also will be taking our car in on trade and the driver will be taking it back to Minnesota.  So we made the deal and they are getting it ready for us.  He won’t give me a firm date of when it will be delivered but we have a “good faith date” of Nov. 3rd. 

If you know of anyone who would like a good deal, I’ll sell our 2014 GMC Terrain for what we are getting on trade-in, $23,500.  It has a 4 cylinders engine and just over 19,000 miles with all recommended services done on time.  It is equipped with a Roadmaster tow bar and Air Force One auxiliary braking system so it can be towed 4 wheels down behind our motor home.   We bought it new in Yuma and it’s been a great car for us for the short time we’ve had it, hate to trade it in but we want a wheel chair van for our needs now. 

Lorraine has really been wanting to go to her sister’s house to see her and her husband, John.  Thelma has been by to see Lorraine a few times but John has some medical and doesn’t get out often so Lorraine wanted to visit with him.  That’s one of the major reasons I’ve been working to get a van as soon as possible.  So one day I signed up with the van driver from the center here to make an outing to her sister’s house.  We were only able to get an hour there but at least she made it to see them. 

I had a talk with the social service gal here, I want them to help me research the idea of Lorraine moving to a nursing home in Palm Springs area.  Lorraine really wants to get out of this area, especially during the cold, damp wintertime.  And if Lorraine graduates to home care, we could always get a place down there and hire help as needed.  I’m sure, with all the winter travelers who head to the area, there are places and people that will fit our needs.  But all of this is down the road, she has to have more/better recovery first.

Guess that brings us up to date. 

 

Thanks   Chuck 

 

425

 

Friday, September 18, 2015

We’re in Lynden, Washington

 

9/18/15

Today was moving day for Lorraine, she was moved from Shuksan in Bellingham to Christian Health Care Center in Lynden.  Basically, this move was because of insurance and therapy coverage, sure wish insurance companies would leave the doctoring to the doctors/therapists.

Last night was pretty emotional for Lorraine, she was doing lots of things for the last time at Shuksan ie, last dinner, last time with her nurse and aide.  Her favorite nurse and favorite aide were both working swing shift, both came by to let her know how sorry they were that she couldn’t stay there. 

When I got there this morning she was angry at me because she had been awake for hours and I got there at my normal time (6 am).  I think most of it had to do with the stress of her having to make this move today. 

We were scheduled to get transferred at 11:00 but they had their monthly pancake breakfast this morning so things were in a bit of turmoil and confusion.  But the breakfast was nice although Lorraine has been getting the early breakfast and was hungry way before they were ready.  They pancakes and eggs were cooked to order and had plenty of fixing to go with them. 

All morning long, people were stopping by to see Lorraine and wish her luck and hoping for a good recovery.  They all said she was a great patient and they hated to see her have to leave.  Sure wish they could have talked to the board or owner or whoever it was that made the decision to force her to leave.  

I think there were four residents leaving this morning so they were busy doing the paperwork for all of them.  There were three moving to different facilities and one moving to her daughter’s home.  But about 10:45 or so, the head nurse came in with the paperwork for Lorraine and we were able to get the 11:00 bus.  There were two ladies going so they dropped the first lady off at a place in Bellingham then headed we North on the Guide. 

I was following the van, had to get our car there with Lorraine’s stuff and if I rode with her, I would have had to just turn around and go back to get the car and I wanted/needed to be to get her through the first few hours in the new nursing home.  And as it turned out, I wouldn’t have left with the van, I needed to be there for sure. 

Lorraine said the ride was really rough, the wheelchairs are all the way in the back of the van and she felt every bump.  We pile pillows under her left arm to keep it in place and they had fallen out so her elbow was hitting the side arm and it hurt. 

Once we got here, there was the usual paperwork hassle, the gal said they didn’t send the right paperwork.  I told them it didn’t really matter, we weren’t leaving and Lorraine was tired and needed to lay down, NOW.  She tried to tell me they had to have the paperwork but I managed to convince her to change her priority to the patient vs the damn paperwork.  Not a good start at this place for sure. 

But once we got to the nurse’s station and they took over from the paper pushers, things started getting better in a hurry.  Her room was ready and waiting, they only had to find the proper lift to transfer her into bed, they use a completely different type here. The nurse said all the paperwork could wait until Lorraine was moved and comfortable.  Now we’re talking. 

The therapists showed up to check her out but decided to return later after she was more settled in.  The nurse and aide stayed with her for awhile to make sure she was doing ok. 

The therapists did come by later and did their initial assessment of Lorraine’s condition.  They were both pleased to see Lorraine had more muscle control than what the notes from Shuksan described.  The did range of motion and found where the movement caused pain, saw how much she could move her leg and arm and were really pleased to see how much muscle control she had over her left knee, very important in order to stand. 

In fact, they wanted to get her to stand before they were done.  Lorraine was able to sit on the side of the bed but still had trouble with falling over to her left.  I explained how they had worked it at the other place, they tried it and it worked again.  From a sitting position on the side of her bed, she was able to stand without a huge amount of help.  The therapist did have to brace her left leg so her knee didn’t fold but she was able to stand and hold her head up.  They had her sit back down then got her to stand again the second time. 

The physical therapist said she was pretty certain they would be able to get Lorraine standing and maybe even taking a few steps soon.  I must admit, I got a bit teary when she said that, luckily I was standing behind Lorraine at the time.  She is working so hard to get better, I haven’t (and don’t want anyone else to either) told her the therapist didn’t think she would ever walk again.  So it was really uplifting to hear a different opinion and this one was better. 

The therapist at Shuksan said one reason they thought it would be a good thing to move was to get a different set of eyes on Lorraine and she what they thought, really glad we did it.  It made the whole moving thing much better, for sure. 

I realize most people don’t know where these nursing homes are located so I will put the address and some directions here.  I think she will be here for quite awhile, months at least I’m guessing, so if you want to visit, here you go.

Christian Health Care Center

855 Aaron Drive

Lynden, WA 98264

Heading North on the Guide Meridian, go past Lynden and turn right on Badger Road (road to Sumas)

Go to the second roundabout and turn right on Bender road (at the mini-mart)

Less than a block later, turn left on Aaron (right after the mini-mart), it’s a small residential road

About 1 1/2 blocks, arrive at Christian Care Center on the left, just before the new senior care apartments.

Lorraine is in room 208B, bed next to the window.  She is, obviously, in a shared room so it may take some getting used to having someone else around but so far, the lady has not been in her room since we’ve been here over the last 5 hours or so. 

I’ll try to write a regular blog next time, really just wanted to let everyone know that Lorraine has moved and all is well, at least as well as can be at this time. 

Thanks  Chuck

270

Sunday, September 13, 2015

We’re in Bellingham, WA

 

9/13/15

Probably time for another update although there isn’t too much progress to report.  There are, however, a couple of road blocks in front of us that I’m working on with/for Lorraine, here’s hoping they work out well. 

Lorraine has improved her swallowing ability to where the speech therapists have upgraded her to a regular diet, no restrictions except to slow down and check her left cheek for pockets of food when she’s finished eating.  She remembers the feeding tube she had at the hospital in Seattle and certainty doesn’t want one of those again.  The speech therapists have actually signed off on her care, she is done with that therapy discipline. 

She works hard at her physical and occupational therapy but isn’t showing much improvement on that front.  Although she has stood up twice, it is only with lots of help and control from the therapists.  Most of her therapy has been trying to sit upright on the side of her bed or on the platform in the therapy room.  She still can’t sit straight, she will fall to her left quickly most of the time.  They are working on getting her to know and control what is straight while she’s sitting before they try going to the standing/walking stage.  Yesterday she was able to sit on the side of her bed, put her right elbow on a pillow and sat up straight for about 10 minutes, yea.  She was also able to lift her elbow without falling completely but she is really unstable and would fall over easily. 

The head therapist has made the decision that her last therapy will be next Friday as she isn’t showing enough signs of recovery.

Now an explanation about that, at least as I understand.  We have Medicare part A plus supplement part B as most retired folks have.  Medicare is good about paying for recovery after surgery or incidents like Lorraine’s stroke.  They will pay for up to 100 days of care as long as the recovery is going per their guidelines.  After Medicare benefits are finished, she will either have to go to private care or Medicaid. 

But to qualify for Medicaid, the family can only have $40,000 left in assets, that is in their savings, checking, IRAs, retirement accounts and such but doesn’t count their house and one car.  They even say you have to cash out any insurance policies that have a cash payout too.  That may effect whether we sell the house or not, if we sell it, they can take that money too.  Boy, the rules are complicated and I get different information from different folks so this is something I have to tread through carefully.  

The money is a big part of this for the nursing homes, I’ll use this nursing home as an example.  They charge $300/day for some one to stay here for long term care if they are paying for it privately.  After the family runs out of money, which doesn’t take too long in most cases, state Medicaid takes over and they get paid $158/day. 

But Medicare pays the nursing homes $600/day for the time the patient is here going through therapy and recovering per their guidelines.  So this place has made a decision to not allow anyone to go into long term care but have them leave after their Medicare benefits has been exhausted.  That means they get $600/day vs $158/day, at that rate, they can afford to have empty beds for a time.  The resident turnover will be much greater here and they will need to have more therapists but they are after the dollars per bed per day. 

So Wednesday we were told Lorraine will be finished with recovery therapy next Friday and just have therapy to maintain her status.  This is because she isn’t showing enough recovery even though she isn’t anywhere near the 100 day maximum allowed.  That means she will not be receiving Medicare benefits but will revert to private pay.  But if we can get her into a different nursing home before she has her last therapy here, she can continue with Medicare therapy and benefits at the new place.  I think these places are working together to get the most Medicare money as possible, it is a business after all but I hate the way they work it.  I would prefer the patient’s care comes first but those days are a thing of the past for sure.  

So, as I see it, not allowing any more long term care patients is just a money/business decision at this place.  Between that and the insurance companies’ rules, the doctors and therapist have to make decisions they don’t really agree with.  Everyone here says they would like for Lorraine to be able to stay but the decision was made “up the ladder” so I can’t talk with them. 

For the last three days, I’ve been checking out new nursing homes.  I’m finding most don’t have an empty bed right now but we are on the waiting list at two places.  I’ve found two places I really liked but they are only long term care, not nursing care and at this time, Lorraine needs round the clock nursing care.  I’ve also found three places that I wouldn’t move into for one or more reasons. 

Lorraine is still having some confusion yet and really doesn’t understand why we have to find a new home for her now.  I’m sort of pissed at this place and probably won’t stay here now if they changed their minds and gave us the OK to stay.  I am working hard to get her a bed at the new place before Friday next week and will update this blog to let folks know where she is when we move. 

The steps Lorraine has to go through is to continue with skilled nursing care until she is able to move from her bed to a wheelchair by herself.  Then she can go to long term care until she is able to go home with a home care nurse coming by once a day for a couple of hours or into a senior living place.  This will be a long process for sure but that’s just the way it is.  The therapist I talked with yesterday said Lorraine may never be able to move into a wheelchair by herself and may end up in skilled nursing home for the rest of her life but I don’t have any plans to give up. 

I sure haven’t given up on Lorraine’s recovery, that’s for sure.  Yesterday morning I was doing her range of motion exercises on her leg, arm and hand when she complained about pain when I moved her fingers.  That was something new, she hasn’t had any pain or feeling in her arm or hand.  I asked the therapists about it, hoping it was a good sign of recovery, being able to fell her hand.  They aren’t sure if that is the case or not but I’m saying it is. 

She is still moving/lifting her leg on command and I say that’s getting better too.  She is trying hard to get better and as long as she has that attitude, I won’t give up on her!  The experts say she isn’t meeting their guidelines but I’m with her much more than they are and I know her better too.  I’ve come to the conclusion she will not recover back to 100% of where she was but that’s what we’ll work towards. 

It’s hard for us to get used to this nursing home care, that’s for sure.  We both take showers every morning but most of the places I’ve checked only have showers for the residents twice a week.  At least that’s for those who are wheelchair restricted.  But this place, and the others that I’ve checked into, have a good kitchen and serve a good meal, not what I expected.  And this place also gives me a free guest meal too.  And all of the ones I’ve checked are clean and didn’t have the bad “hospital” smells. 

The nurses seem a bit overloaded but they take the time to know the residents and show they care.  The aides are busy too but they are also friendly and care.  Lorraine has a call button and when she pushes it someone shows up fairly quick even is they are busy somewhere else.  If they can’t work with her right then, they explain why and let her know they will be back when they can.  This works out pretty well but a few times she has had to wait longer than I liked. 

She has to have two people help her in order to get into/out of a wheelchair using a lift.  She also can’t get dressed by herself and requires assistance from an aide for that. She is still getting regular pain meds every four hours for her terrible headaches.  Items like these are why she needs to stay in a skilled nursing home vs going to a long term care place.  The LTC places don’t have as much help for the residents, they are more mobile and able to care for themselves than what Lorraine can do. 

I have been leaving every night, Lorraine is getting better with that.  One of the therapists explained to her that she can’t be calling me in the middle of the night unless she needs to, not just because she wants to.  But she is really glad to see me when I get here in the mornings.  I still try to be here for all her meals, she gets into her wheelchair before lunch and we go to the dining room for lunch and most of the time for dinner too.  But she still still has her breakfast  in her room. 

We had signed Lorraine up for an outing to the mall yesterday.  This would be her first outing except for a quick visit to see her doctor when we first got here four weeks ago.  She was really looking forward to shopping with her sister there.  But Thelma couldn’t go to the mall so she stopped by to see Lorraine here before she left for her outing.  Her daughter (our niece Kerri) stopped by too.  While they were having a nice visit, Lorraine still wanted to spend the afternoon with them so I asked if it would be possible to have the driver take Lorraine to the casino instead.  Lorraine’s therapist and nurse both said they thought it would be good and the driver said he would just stay until we were ready to return.  Both her sister and our niece agreed to meet us there too, winner. 

So that’s what happened, no mall but she did get to the casino.  Of course she was in her wheelchair but I was there to navigate around the place with her.  She was able to play the slots without any problem, anyone who knows her well would understand that, ha.  They all had a great time, I’m glad that’s the way it ended. 

But more important, she had a good time and when we were riding back, I asked about her pain level and she said she didn’t have any pain, yea.  It was a good outing for her, especially with the pain being gone. 

One thing this place has is a shuttle bus that they use to run the residents around, including wheelchair bound folks and some of the other places don’t have that benefit.  I understand it has an added cost but after yesterday, I’m a believer in getting out and about as therapy.  The city bus system does have specialized transportation available, only $1 one way I understand, but it can take much longer to get a bus and I don’t think you can reserve one. 

Lorraine is still getting lots of facebook comments, emails, phone calls and people stopping by to see her.  These help lift her spirits and when she is having a down moment, I remind her of all the family and friends thinking of and praying for her.  So thanks for all you do, I know how easy it is to forget someone if you aren’t around them often, I am as guilty as the next person on that front.   

I haven’t had any more work on the house, the guy doing the work was on vacation for a week.  Unfortunately, he pulled a hamstring while on vacation and had to take off this week too.  But it is listed for sale and a couple of folks have toured but no one has made an offer or anything yet.  As I said, I may have to rethink the idea of selling the place now but I’ll work on that this week, in my spare time.  And I’m keeping the option open that we may have to move back into our house, it’s a large house and with a little bit more work, it could easily be handicapped/wheelchair accessible on the bottom floor. 

Ok, guess that’s enough for now.  I tried to record how Lorraine’s recovery and prognosis is going so this may blog may not be as upbeat as the others but be aware, she is working hard and I’m here  by her side to help her all I can.  Plus with all the prayers and good thoughts from family and friends, we’ll accept whatever recovery she had get. 

Thanks   Chuck and Lorraine

 

190

Friday, September 4, 2015

We’re in Bellingham, WA

 

9/4/15  

I guess it’s time for another update, at least I’ve had some people ask me for one.  I’ll try to keep this note shorter than the last one.

Lorraine’s condition is almost the same as last time, she still has no control/movement on her left arm and very little on her left leg.  She can sometimes move/lift her left leg on command and we continue to work on that. 

The speech therapists are pleased with her ability to swallow better.  She has a number of exercises she does to work the muscles in her mouth and tongue, say the vowels slowly, click her tongue, purse her cheeks and whistle.   We do these exercises a few times a day and I think her speech is getting better/stronger too. 

The therapists have upgraded her allowed food once again, this time she gets basically ground vs pureed.  She does get some whole foods, they said if it is fork mashable  that she could have it.  Plus she is now able to have bread although it does take much more chewing for her.  

She is learning how to better move food from the left side of her mouth to the right side.  She does still get some food hiding on the left side but has learned how to sweep that out with her finger.  And she has learned to take frequent sips of liquid and swishing it around her mouth, that helps to clear any food hiding in the left side too. 

Her occupational and physical therapist have been working with her every day too.  They are still getting her to sit upright without falling over to her left.  At first, she would lean over so far that she would fall unless held.  Then she was using her right arm to assist but her new normal upright was still leaning way to the left.  So they positioned a mirror in front of her to show her how she was sitting and that seemed to help. 

The last two times she worked with them, they said she is doing much better, using her stomach and back muscles more and not relying on her right arm so much.  She was able to sit upright for about 1/2 hour on Wednesday with less assistance but still not where she wants/needs to be.  The therapist told us she has to master this before they can move on to standing then to walking. 

She is still having a constant head ache on the right side of her head, where the stroke happened.  Her doctor has ordered enough pain medicine that she is able to bear the pain, sometimes she said it’s down to a three.  She has a standing order for the pain meds with the option of getting more anytime she needs it.  Of course, these meds cause other problems so it’s a balancing act to control the pain without causing the other issues. 

Lorraine is still in good spirits most of the time although she does have some bad moments too.  Yesterday she was having a bad time, feeling bad about being here and not out doing things we like.  She was really sad that she missed being with her sister for her 50th wedding anniversary. 

One of the toughest times for her was when our niece got married on Tuesday night.  I explained to her many time that we wouldn’t be going to the wedding but a few minutes later she was doing some sort of planning for us to attend.  She wanted to make sure I had her clothes ready and wanted to make sure mine fit.  She really cried when she asked to call her sister and I told her she was at the wedding and couldn’t talk on the phone while the wedding was going on. 

As I mentioned above, sometimes she gets confused.  I’ve been able to spend most nights in her room since her stroke but I got to where I had to go home and get some uninterrupted sleep.  So Tuesday I kept telling her I was going to leave her at night and would be back in the morning.  She seemed ok with that throughout the day but when it came time for me to leave, she tried getting up to get dressed so she could go also.  Once again I had to explain that she couldn’t walk therefore she had to stay here. 

I did stay around until she was asleep before I left and when I got back in the morning, she was fine.  I attempted to go home on Wednesday night but it was raining really hard and I found the streets downtown were flooded.  I guess after the big windstorm we had, all the leaves were plugging the sewer drains and the water was getting deep.  If it was that bad in town, I didn’t want to see what it might be on the roads back to the house so I turned around and went back to the nursing home and spent the night there once again. 

Last night I was able to go back home once again, I think Lorraine is getting better about me leaving her.  But when I do leave in the daytime, she thinks I’m gone way too long.  The other day she said if I am out gallivanting around, she was going to go to the casino, funny but sad. 

I haven’t been leaving too often during the daytime because I want to be here when she has therapy and I help her at mealtimes.  But we did just get the house listed for sale and I have some work I have to complete before we get prospective buyers through so I need to be leaving more. 

Lorraine does work hard on her therapy and is pretty tired when done.  She can sit in a wheelchair pretty well although she does tend to lean to the left then too.  She likes for me to push her around the place, it’s built in a big U shape with a patio/garden in the center.  It’s been too rainy and/or cold to spend much time out there but she can see the flowers and such through the windows. 

I talked with the activities director and her therapist when I heard they were planning another outing to the casino later this month.  The therapist said she could go if she could increase her stamina in the wheel chair and the activities gal said she could have one of the two spots in the van for wheel chairs. 

You should have seen the smile on her face with I told her I set it up for her to go to the casino.  She immediately started planning on what she wanted to wear and even wanted me to get her cloths out of the closet, even though there aren’t any there at the time.  She wanted to call her sister and ask her to meet her there too and it isn’t even happening for three weeks yet.  I know she will enjoy the outing and sure hope she is able to go, it would be a huge disappointment to her if she couldn’t go for some reason.

Another time she smiles is when she gets visitors.  She does like to have folks stop by for awhile although it does tire her out if there is more than one conversation going on in the room at one time.  So we really try to limit the number of folks in the room at one time. 

We were both surprised to have my brother from Missouri walk into the room the other day.  He had surgery in early August but he’s doing well enough to travel.  His daughter and son-in-law are at Fort Lewis in Tacoma and he drove out to visit with them.  They decided to make a day trip up to Bellingham to see Lorraine, very nice.  It was a complete surprise when he called and told me he was just a couple miles away from our house and wanted to know if I could “do lunch”.  Thanks for the visit Brad, Dude, Rachael and the two little ones. 

Lorraine also gets some emails and facebook notes and I read all the comments/notes to her.  She really appreciates everyone’s contact, it lifts her spirits.  When she is having a down moment I remind her of all her friends and family that have visited or sent comments and she starts to feel a bit better. 

On our house repairs saga, I did part ways with the contractor that was working on restoration after the clean up was complete.  I was unhappy with the painting job they did, the painting was ok but they didn’t even pull the nails left behind or spackle the holes.  When we got here they hadn’t even been to the house for three weeks and when I had the project manager meet me at the house, he told me they hadn’t even ordered the material needed to complete the work.  He said he didn’t have any work scheduled for the next few days.  So we agreed on their payment and they are out of the picture. 

But I did get a call from them yesterday saying they didn’t want to pay me the portion of the check from the insurance that we had agreed on.  I reminded him that we both signed the papers and I expected to get the check for the agreed upon amount.  Just what I need to worry about now, some contractor being an a - -. 

But on a good note, the guy I hired to do some other work at the house has agreed to take on and finish the fire restoration work.  We’ve made a couple pickups at Home Depot to get all the material needed and he is a good worker.  But he did have time off schedule for this week so when he gets back he’ll get going once again.  He is in great demand for others, especially our realtor who told me about him.  But I’m glad he’s getting it done and it’s done correctly too. 

Guess that ‘s enough rambling for now, I’ll close this and get it posted.  Lorraine wants to proofread this so I’ll pass the laptop over to her and see how that goes. 

Thanks   Chuck

100

Wednesday, August 19, 2015

We’re in Bellingham, Washington

8/19/15

Once again I’ve had some folks asking for an update on Lorraine’s condition so here goes.  I just checked and it’s hard to realize its been almost a week since the last blog update and 12 days since her stroke.

Last blog Lorraine was still in Settle at Harborview Medical Center, one of the 60 or so Certified Stroke Centers in the nation.  Lorraine was airlifted from Bellingham down there to have a medical procedure but when she got there it was deemed to be too much of a risk to attempt it so it wasn’t done.  

Lorraine did get excellent care while in that  hospital, the doctors and especially the nurses were very professional and treated her with respect as a person, not just another patient.  I would recommend Harborview to anyone if Lorraine’s treatment was normal, everyday treatment for everyone. 

Lorraine had been making good progress with her swallowing, the speech therapist had even upgraded her to a thinner drink.  This was a biggie as that meant her feeding tube could be removed soon.  She was eating so well that they decided to not even feed her via the the feeding tube on Thursday night but left in place just in case as it isn’t a pleasant experience putting it back in if needed.  The doctors were also wanting her blood pressure under control before she could be released too and had just started her normal blood pressure meds. 

I was trying to get a treatment plan from the doctors at the hospital and basically it was “When she is ready, we will transfer her to an appropriate facility”.  They weren’t sure if it would be to a skilled nursing place or a rehab center, it depended on how much she had recovered.  As I understand the level of care it goes from hospital, skilled nursing, rehab, long term care and assisted living.  In her case we are hoping to go from hospital – skilled nursing – rehab – home. 

I was told they have an excellent skilled nursing facility on the 5th floor at Harborview so that is where they really wanted her to go.  But I had been pushing for her to be transferred back to Bellingham so she would be able to see friends and family and I might be able to get away and work at our house some. 

Lorraine was having her headache pain mostly under control, she was receiving three pain pills every 3 hours on Wednesday.  In fact, I asked if we could reduce it to two pills if she wasn’t in pain as I wanted her more alert if possible.  They agreed to let the nurses, Lorraine and me make that decision, up to three pain pills as needed. 

I believe it was on Thursday that they changed her pain meds to three pills every 4 hours, as needed.  That seemed to be enough to keep her pain under control but she did start telling us that she had a pain on the right side of her abdomen.  They said they would keep an eye on this newly developed symptom. 

Friday they once again changed her pain meds,this time to two pills every 4 hours.  I thought this was just at the edge of not keeping her pain under control but she was more alert.  The doctors and I talked about this dosage and agreed to try it for a day or so and she how it worked although the pain in her side seemed to be getting a bit worse. 

But they did remove the feeding tube from her Friday morning YEA.  They were just coming by with the equipment to do this when Lorraine happened to snag the tube as she was moving about and pulled it out about 5”.  The nurse didn’t hesitate and pulled it out the rest of the way.  Boy was that a good improvement for both of us.  To this day Lorraine explains that it felt like they were using a ball peen hammer to insert the feeding tube into her nostril, it hurt her that bad.  

Our friends, Richard and Sandy, drove down from Bellingham to see Lorraine on Friday also.  His sister had been her for over 2 months last year when she had a brain aneurysm rupture.  She was in critical condition and was also airlifted from Bellingham for treatment so he had spent some time there and know his way around very well.  Lorraine was really happy to see them but was tired so they only stayed for a short visit.  Thanks Richard and Sandy.   

Our son, Rich, flew down from Alaska to see his mom on Friday.  He caught the red eye flight from Anchorage and had a screaming kid in the seat right behind his so he didn’t get any sleep.  He did get into Seattle early but couldn’t get to the hospital to see her right away, he had to have some rest first as he knew it would be tough.  But he did get there early in the afternoon. 

Lorraine’s room was directly across from the nurse’s station and when Rich got there, he just walked into her room.  Lorraine saw him and started crying, of course.  But within 10 seconds or so, the nurse came rushing into the room, I thought there might have been a check in procedure or something that I was unaware of.  But no, the nurse asked if everything was ok with Lorraine.  I told her she was fine, our son had walked in the room just moments before.  She said that explained the different action on her heart monitor, I guess the alarms started going off at the nurse’s station when Lorraine saw Rich, funny.  But everything was fine and seeing him definitely helped her.

The nurses were still putting Lorraine into a chair every afternoon for a couple hours or so.  The did this by lifting her onto a gurney type bed that could be folded into a chair.  She said she liked sitting up vs laying in bed all the time, I believe she actually had her lunch while sitting in the chair and Rich helped feed her. 

Susy was also on her way up, driving up from the Bay area.  She left early on Friday morning and had one overnight stop scheduled.  Every time we talked with her, she was making good time and everything was going good. 

I had been talking with the Social Worker at the hospital about Lorraine’s transfer and she warned me that most facilities in Bellingham might be hard to contact over the weekend due to the administration folks not working.  So it was somewhat of a surprise when I got a call from her on Saturday morning that she had found a skilled nursing facility in Bellingham and we could transfer to it that day.  I hadn’t completed my research on what was available or how they were rated but the one that she told me about wasn’t on my short list. 

In our last blog I had asked for information from anyone in the Bellingham area that might have personal experience about the nursing homes up there.  I had a number of folks reply to that request, some telling me which one was good or bad in their minds.  A special thanks to everyone who replied to that request, it’s nice to have friends who can and will help when asked!!

I got an email from  a good friend up there who was a very valuable source of information as she had worked with some of these facility with her job, before she retired.  She said the one they wanted to send Lorraine to wasn’t very high on her list and suggested that they would attempt to send her to the first one that would accept her, not necessarily the best one.  Based on that suggestion and some info I found online, I called the social worker gal and turned down that offer.  She was fine with that decision but once again told me it would hard to find another one on the weekend.  I said I understood and gave her my list and asked if she could attempt to get her into St. Joe’s Rehab Center.

I had earlier called St. Joe’s based on suggestions/recommendations from others and was highly impressed with my conversation with the gal I talked too.  She told me their goal is to get someone who needs rehab through an intense therapy treatment course and get them back HOME as soon as possible.  She said most folks are out and back HOME in 3 or 4 weeks, wow. 

She also said, based on my assessment of Lorraine’s condition, that they had an open bed and would accept her based on her medical record and information from the doctors at the hospital.  She did say that Lorraine would have to be able to do 3 hours of intense therapy per day, 6 days per week, not necessary three hours in a row but throughout the day.  I told her I didn’t think Lorraine was up to that but she said, don’t sell her short as they have had some show up that were in pretty bad shape and they went HOME within a few weeks.

So anyway, the social worker said she would send Lorraine’s medical records to three places in Bellingham.  I once again told her my ratings of these places and hoped to have something at St. Joe’s. 

As I was working on this, Susy got to the hospital once again Lorraine’s heart monitor took off.  But I had warned the nurse so they didn’t respond like when Rich showed up, forewarning is a good thing.  Susy quickly assessed what was happening and got “up to speed” with everything.  With both Rich and Susy there, I could see that Lorraine had settled down a lot. 

Rich has a friend in the area that wanted him to stay at his place as long as needed and Susy had made a reservation at a hotel so they both headed out that evening.  Once again, I stayed by Lorraine’s side, sleeping in a recliner chair at her bedside.  I sure appreciate the hospital allowing family to stay overnight but the other patient in Lorraine’s room sort of took advantage of that and had three folks stay overnight one night (and the guy snored like a chainsaw). 

That evening I got another call from the social worker and she told me that St. Joe’s had reviewed Lorraine’s record and decided she would be better served if she spent some time in a skilled nursing facility, until she could do the 3 hours of therapy.  They had contacted Shuksan Healthcare Center to have them accept Lorraine, work with her until she regained enough strength, keep them informed of her progress and transfer when she was ready.  Wow, great service and they would also be keeping up with her progress. 

So that’s what happened.  They said Lorraine would have to be transported via ambulance and would be leaving the hospital at 10 am on Sunday morning.  It would be about three hours from bed to bed so I worked with the nurses to get Lorraine’s meds set up on a schedule that would give her max pain meds between 9:30 and 10, hoping it made her trip better. 

Next morning everything went as planned, Lorraine had her breakfast, the nurses cleaned her up, gave her the pain meds then the ambulance guys called and said they had mechanical issues with their rig and would have to get a different one.  They estimated it would take about 1/2 hour and they would try to shorten the time as possible. 

It was about 11 when they actually got to Lorraine’s room to transport her to the ambulance.  They moved her over to a gurney and wheeled her out.  Susy was going to ride with Lorraine in the ambulance, Rick had to stay in Seattle for a short while, Mike and I would drive our cars and follow the ambulance.  Wow, another big step for Lorraine, discharged from the hospital one week after her stroke. 

Although the traffic was heavy, it wasn’t too bad and the ambulance and us arrived at here at Shuksan.  The entry door was closed and locked so I walked around to the normal entrance and got a nurse to walk down and open the door for us.  By the time she found the key and got the door opened, the ambulance guys had already wheeled Lorraine up to the same door I had walked in and got her into her room and in her bed. 

My first impression of this place was pretty good, it looked clean, I didn’t see anyone sitting in chairs in the hallway with no one watching them and Lorraine was put into a private room.  She had a couple nurses show up to check her out, they even called in a off duty therapist to check her too.

Everyone seemed very nice, explained lots of things and answered my many questions.  They said they are used to having folks who haven’t been around care facilities before and pretty much knew what I would ask, funny.  Lorraine was pretty tired although Susy said she did appear to sleep a lot on the drive. 

They asked Lorraine what she would like for dinner and even offered us to have a meal too, nice.  After dinner I had a discussion with the nurse and he told me that Harborview doctors had once again lowered Lorraine’s pain meds, down to one pill every 4 hours.  I asked for the on call doctor to review this with us but was informed that we would have to have Lorraine’s primary doctor here in the area write the change for her.  I called her doctor and, of course it being a Sunday evening, got their answering service.  The gal who answered the phone said I could do one of two things, leave a message for the doctor and they would get it on Monday morning or declare an emergency and she would transfer me to 911.  All I wanted was a prescription, not 911, really disappointed in this service for sure. 

Anyway, the nurse here worked some magic and got an extra pain pill for her which made her feel better.  She had a good meal even though it was once again back to the pureed food but at least it wasn’t formed into some dry patty.  Lorraine was able to eat probably about half of her meal that evening. 

I figured Lorraine would sleep deeply that night but she kept waking up about every 15 minutes or so with a question for me.  Mostly she was worried about her sister’s upcoming 50th wedding anniversary and wanted to make sure I knew how to make the salad she wanted, wanted me to get our clothes out of the closet so she could iron them and couldn’t remember if she had wrapped their presents or not.  She has always been a planner and was really worried that the party wouldn’t be a success if she wasn’t able to do her normal activities for this type party. 

Monday morning I continued to ask lots of questions about this place, wanting to know procedures, policies and whatnot.  I found every one willing to answer any questions I had as best they could.  I have not been exposed to a skilled nursing place before and wanted to know about doctor care (our family doctor is in charge and they have doctors come by on Wednesday and Friday), how many LPN/RN on site (no less than 4 at night and up to 7 during the daytime), how they handle prescriptions (they have a deal with a large pharmacy in town and they will make up and deliver meds any hour of the day/night) and other such questions. 

Once again, they ordered up a meal for Lorraine and offered a meal to us if we wanted.  They said they haven’t heard of another place that does this for family members but they wanted to make it as easy for us as they could. 

I called our family doctor as soon as they were open and explained the issue with Lorraine’s pain meds and they quickly sent new orders her to allow Lorraine up to three pills every 4 hours or reduced as needed.  Just what we wanted to hear.  The doctor had also ordered up a urine test to see if Lorraine may have a urinary track infection.  The preliminary results are that she does in fact have an infection and they’ve started her on an antibiotic series of pills for seven days to knock it out.   

Lorraine really likes this doctor, when we first changed to having him as her primary doctor, on the first visit he set down eye to eye with her and explained that he had spent 4 hours going over her medical file so he know her medical issues but didn’t know her.  He asked her to tell him what she wanted and everything she wanted him to know.  He spent about 45 minutes with her and really made her (and me) feel good about having him as her new doctor.  And they way he handled this situation is just about what I would expect from him, a good doctor.  He also wants Lorraine to see him in his office next Monday so that gives her a goal, being able to get into a wheelchair for at least 3 hours. 

This place has two dining rooms, one for folks who can feed themselves with no problem and one for those who need assistance.  Seeing as how Lorraine has someone with her basically around the clock, they have been bringing her meals to her room and we can assist her.  They also taught us how to make the thick water or juice that she can have, pretty simple once you know how. 

I made a few calls about our on going house repairs on Monday and had the contractor doing the fire repairs and our real estate agent meeting with me at our house on Tuesday morning.  The contractor was first and we sort of agreed on the amount of work completed and they will be paid for that, guess you can say he’s fired.  The remaining work will be completed by the guy I had already hired to do lots of damage repair and upgrades around the house. 

Plus I had to have a glass company come out to replace three broken skylight fixtures and two broken windows.  I still don’t understand how the skylight mechanisms got so badly broken that they can’t even be closed but whatever, they have to be completely replaced.  In fact, on one of them there is a 3/4 x 4” board that was broken width wise, I couldn’t do that if I wanted.  Sure glad the owner of the glass company is a personal friend of ours, I’m sure he will make sure the work is done right. 

While I was at the house, I also removed some more of the flooring that is going to be replaced along with a few other items I needed to do.  I also took a shower while I was there. 

I drove over to the Water and Sewer service folks and got everything changed back to our names and paid a couple months in advance.  They asked me if I had contacted the Tribes Housing folks to see if they had someone on their list that would qualify to buy our home.  Wow, a possible lead to selling the house.  I told them it would be donuts for the whole office staff if something worked out from their lead, ha. 

Rich had been with Lorraine while I was gone, from about 8:30 till 2.  As I was driving back to here, he called and said Lorraine wanted to talk with me.  When she heard my voice she started crying and wanted to know where I was and when I would be back.  Rich said that was the first time she had cried about it but she had wanted to talk with me for awhile before he actually called.  When I got back, she said she was afraid I had left her, really made me sad. 

When I got back, Lorraine had a couple visitors and for the next couple of hours had about 10 folks show up and visit for a short while.  She was really tired and didn’t participate in the discussions too much but did manage to thank everyone who came by. 

While I was out, the therapists had shown up and worked with Lorraine.  They had her sitting up on the side of the bed for awhile and it really tired her out.  Plus she had a good lunch except she couldn’t eat the hot dog even though it was cut up into small pieces reason.  Not sure if she just didn’t like it or what but Rich said she couldn’t/wouldn’t eat it. 

Anyway, once I got back and told here where I was and what I had done, she was fine once again.  I told her I had to run some errands once again on Wednesday morning and would be at our house for awhile too.  I wanted to make sure she knew when and where I was going to be and hoped she wouldn’t become upset again.  I know it’s going to be tough for her when Susy and Rich leave and I have to leave her side, especially overnight.  I plan on making small moves in that directions over the next few days to see how she handles it, don’t want her to get upset and have a major problem with me being gone when I have to be. 

I had asked for the speech therapist to come by and re-evaluate Lorraine with a new swallow test.  I thought she wasn’t having any issues with food/water going down the wrong pipe and wanted them to upgrade her food from pureed to finely chopped.  But after checking her out that evening, the therapist suggested leaving it as is for a few more days, better to error on the side of caution.  She did say that she understood she was seeing Lorraine at the end of the day when she was most tired but that would be when she would be most likely to have problems.  The speech therapist is also the one that works at St. Joe’s, our next medical center once we leave here.  She wants to check on Lorraine at least two or three times a week. 

Wednesday morning I met with the guy doing the repair work at our house at Home Depot.  We wanted to purchase all the material he needed to work on the house for the next two weeks.  We picked up new flooring material for three bedrooms, three baths and a hallway.  We also had to pick up enough wood trim for all these rooms too plus get a new door for the bedroom where the fire was.  And his wife is going to paint inside the garage for me so we had to get enough paint for that.  I was surprised that all this could fit inside his van but he said he does this all the time.  We then drove over to the house and unloaded all this material. 

By now I had been gone for about 4 hours and I was anxious to see how Lorraine was taking my being gone for this amount of time.  When I got back, I just explained what happened and she seemed fine, although once again, Rich was here with her the whole time I was gone. 

And while I was gone, the therapists had shown up again and this time they got her into a wheelchair.  Rich pushed her around and even took her outside to the patio garden area.  I asked him to take some pictures and Lorraine looked to be happy in all of them, even giving the peace sign.  Rich said she was flashing thumbs up to other residents as she passed them.  Too bad I missed that, she had just been returned to her bed just before I got back.  I think she had a couple of folks come by to visit today too. 

Ok, Lorraine’s condition report.  She knows what happened, where she is and what she has to do to get better.  I tell her everyday that she has to do three things, eat well, sleep well and do her therapy.  She can now repeat that phrase very well.  She has shown many small signs of recovery and that gives us all hope.  Of course, we can’t predict how much she will recover but if she doesn’t get back to 100%, it won’t be from lack of trying. 

She is mentally alert and sharp and still in good spirits considering what she’s going through.   She is usually in good spirits, especially if her pain is under control.  She hasn’t lost her sense of humor or her mothering instinct.  She still gets a bit confused at times, asks to go home to our rig often and a couple of times she has asked me why I’m being mean to her and won’t let her get up out of bed.  But her mental state is mostly good and I don’t think she is depressed. 

She is still unable to move her left arm or hand and very little movement on her left leg although we all have seen slight movement on command in her leg and toes every once in a while.  She does curl her left arm to her chest by herself but doesn’t move it on  command.  We can feel the muscles attempt to work in her leg on command when we are doing range of motion exercises with her.  The therapists are pleased to see that and say it is a good sign to see/feel that at this stage. 

Lorraine was suffering from what is called Left Side Neglect, at least she was suffering from it.  This is when someone doesn’t know anything exists on their left side, not just their body but no awareness of anything on their left side.  I mentioned in an earlier blog that some men only shave one side of their face.  Also, when asked to turn to their left, some people turn to their right all the way around.  But anyway, Lorraine is getting better in this regard too.  She now moves her eyes and head to her left, will point to her left arm and when asked to move her left leg, she looks at it and attempts to move.  Another good recovery sign for her. 

Her last two strokes were on the left side of her brain and affected her speech and vision but she didn’t have any lasting physical issues from either of them.  This time, however, the stroke was on the right side of her brain and appears to mostly have affected her physically. 

She is regaining her ability to swallow although like I said, she isn’t back to normal just yet.  Her speaking voice is very soft, I have to get real close in order to hear her.  She doesn’t appear to be grasping for what word she wants to say, she just has trouble saying it.  I think that is because the muscles in her mouth, tongue and lips don’t work right on her left side.  The left side of her face is still drooping and when she smiles its only on the right side.  She has talked on the phone but with the quiet voice and somewhat slurred speech, she is hard to understand. 

She really seems to enjoy getting up out of bed and can’t wait until she gets a full shower vs a sponge bath.  Susy is trying to talk to her about getting her hair cut to make it easier to take care of and she isn’t totally against that idea.  I know that will be a traumatic event for her if that happens and I would like both Rich and Susy to be here if/when that happens for support. 

She does have an appetite, even though the food is like baby food consistency, guess that doesn’t change the taste too much.  We are letting her sleep as much as she wants, that’s a good thing to do to help with the healing.  One of the nurses told me that her brain is now using as much nutrition as the rest of her body as it tries to heal itself and make new pathways for the neurons to flow.  He said he expects to see lots of recovery within the next 10 days, based on what he’s seen for the past three.  Sure hope he’s right!!

Now for my normal closing here.  I ask for everyone to keep her in your prayers and send all the good thoughts you can her way.  She is able to accept visitors here and because she is in a private room, there is no visiting hours to worry about.  The speech therapist told me today that we need to restrict visitors to no more than two at once in the room and try to keep the visits short and upbeat.  She was impressed with Lorraine’s attitude and says that will really be a good asset to her as we continue going down this recovery road.

So with God’s help, your prayers. good thoughts and visits, we will do our best to get her moving towards recovery as best we can.  I do tell her every facebook, email or phone call she gets wishing her well and she appreciates every one.  So please keep them coming!

Well, once again I didn’t finish the blog until late so I waited until this morning to post it, I was too tired to do a good proof read.  Of course, that doesn’t mean you can’t find any mistakes here if you look, so just overlook any you may find. 

Thanks   Chuck

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