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