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