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Did I tell you what I ended up finding out about the assisted living
facility (ALF)?
QUESTION: Hi all - Just wanted to update you on what's been going on the past few
weeks since Mom's stroke. I haven't been posting much as I've been so busy
with Mom and all the past two weeks. My sister came and helped for a week.
It was nice to have her here to help. I slept for two days after she left! I
think Mom has been doing well in the rehab although they put her back in
isolation because of some concern once again about MSRA(
methicillin-resistant Staphylococcus aureus) They think it's colonized in
her and that she's only contagious to the immunosuppressed. It has been
suggested to me that I not visit her.............That's tough. Waiting for
all the cultures to come back for the final word on that. It's always
something and then.....
The social worker at the rehab place called yesterday and told me that they
don't think Mom is progressing well enough to stay there and that we need to
start thinking about moving her into a nursing home full time. They said
that the therapists - Physical, occupational and speech - think that the
cognitive damage from her stroke is too severe to allow her to live on her
own in assisted living again. Her speech is better. At least she can talk
and carry on a conversation. And although her she is getting better
physically like being able to walk with the walker and get in and out of bed
by herself, she can't remember safety measures like locking her wheelchair
and such and therefore would present a danger to herself if she was in
assisted living. She's already fallen again since she was there because she
doesn't remember that she has to call for assistance and tries to do it by
herself. And since the rehab facility she is in is geared to return people
to independent living, if that is no longer a goal then Medicare won't pay
for it and she will have to go to a lesser form of rehab like in a nursing
home where Medicare will pay for it. I know....doesn't make sense to me
either. She has progressed physically much faster than she did in the other
nursing home she was in but apparently it's not what they are looking for
here. Sucks. This is really what she needs but because of the cognitive
damage from her stroke and the resulting memory problems she can't have it.
And in the regular nursing homes they don't concentrate on rehab in the same
way and she just gets left in her room to watch TV and become lazy other
than the one hour of rehab a day.
Did I tell you what I ended up finding out about the assisted living
facility (ALF)? The were not giving her FIVE of her meds for TEN days? One
was for blood pressure and one a blood thinner. And on top of that the
nurses giving the meds lied on the forms and said they were giving the meds.
Unbelievable. Took some detective work to get to the full truth of the
situation. Definitely the cause of this stroke. Looks like we are going to
file a law suit against them. Especially now that we know for a fact that
there is cognitive damage making an ALF out of the question. And there is
some question about whether or not Mom can void on her own. They cath her
every 4-6 hours right now but they are trying something called "bladder
retraining" in the hope that they can get it to work again but after two
weeks, it doesn't look successful yet. It's a mess.
My sister and I moved Mom out of the ALF last week and Mom's stuff is my
garage.We gave a bunch of stuff I had setting out there for a garage sale to
Goodwill and that opened up a bunch of space. Wayne got it all packed in
nicely and we actually have more walking room than we did before. I don't
know what we will do with wherever Mom goes next. Nursing home rooms are
usually shared and Mom's not going to like that. And I don't know if we can
afford a private room or not. She will have to get on Medicaid after a few
months since her money will be all gone. Just Monday I had met with an
Eldercare consultant and had things all worked out for Mom to go to a new
ALF nearby and that she would be getting an additional $854 dollars a month
in VA benefits we didn't know about which would really help her out
financially. Now I'm not sure what to do. The VA money is only for assisted
living. I was thinking of having the new ALF go and evaluate Mom and see if
they think they can accommodate her. They have what's called respite care
where we can try Mom out there for a while and see how it works. It's a
small ALF - only about 23 people. They told me that they have a higher level
of care than most other places and they keep folks there until they are
practically bedridden. I think there is just a weird strict Medicare
definition for this particular rehab place she's in. It's a shame too cause
she is really improving but not fast enough for Medicare guidelines. Leave
it to the gov't to create yet another catch 22. It's what she needs
(Therapy 3-4 hours a day) but she can't have it for 30 days cause she's not
fast enough and her memory is bad. Yet they would pay for her to live in a
nursing home for 100 days to get therapy for 1 hour a day. Go figure.
Actually Mom's already used her 100 days so they actually won't pay for any
more nursing home days and Mom will have to be self pay.
It's been so hard. I've been plugging along just doing whatever I needed to
do but yesterday when the social worker called and said that Mom wasn't
progressing enough and had poor motivation .....I just broke down and
started sobbing. Then my stomach started up and the next thing I know I'm in
the bathroom hanging my head over the toilet trying to figure out if I was
going to throw up or not. In all the years I've taken care of Mom and of
Dad too, that's the first time that ever happened to me. My stomach was
upset the rest of the day and the only thing that settled it down was to put
something in it. Bagel. Starbucks. Go figure. Anyway, ate a healthy dinner
and kept it down. Have a bad headache but the stomach is better.
(wrote the previous part before I saw Mom today, with a face mask of course)
Wayne and I went over today to talk to the therapists and see what we can
do. After speaking with them and sitting with Mom I started to realize that
she's actually going to need a nursing home. Her condition, both mental and
physical, varies from day to day and I think she really needs to have a good
nursing staff looking after her. She was having a difficult time talking
today and just laid in the bed while I was there. She only answers yes and
no questions. I had the PA for the doctor who's on vacation this week run a
urinalysis to make sure all these caths haven't caused a new infection. Her
BP and kidney functions were in an appropriate range for her so that
shouldn't have caused the change in mental status. If she has a UTI, well,
then they will consider keeping her in rehab until it's been treated and see
if there is a change in her progress. Their biggest concern is her inability
to remember safety precautions from one day to the next. She will just get
out of bed and try to walk across the room, not remembering that she is
unable to do so without a walker or assistance. I don't think Mom realizes
how bad she really is.
It's so difficult. And Wayne, my wonderful, wonderful husband, suggested
that we try to bring Mom home and make whatever accommodations we need to
have her here. He already does so much around here without ever complaining.
He picks up all the slack. I can't believe he would say that. And guess
what? Because of the MSRA colonization and my heath issues, the infectious
disease doc said it is not recommended. WoW. My head hurts.
ANSWER: Sorry to hear about the latest updates on your mom. I know it is hard, but
this might be what your mom needs. More care. As far as her coming to live
with you guys that was wonderful of you husband, but let me say from first
had experience. Don't if you can help it.
I have taken care of my dad for five years at home and it will take a toll
on your health. It can also put a strain on family relationships. Anyway
you probably already know that but just wanted to throw that in. You can
visit your mom often at nursing home, but at least you can come home in the
evening and have that time to yourself to relax and care for yourself.
Hope things work out. I know you have some big decisions but you will do
fine. Let us know what you decide. I can relate with my own situation.
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