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Joined: Fri Jul 16, 2010 4:54 pm
Posts: 8
Post horrors
Well, for 24 hours my LO Jim and I lived through an LOA visit from horrorville. I am stil not able to sleep tonight, tring to process it all.
I had been real sick for 3 weeks in August, so did not see Jim during that time. I had been in contact with the nursing home, including asking how he was doing...they always said "Oh, he's fine"
I had talked with him also by phone during that time, and he was looking forward to his trip to my home this weekend.
I picked him up, and he was having some difficulty walking to the car with his walker.The horrors began during various times he had to walk and change position, and sit, etc. I don't know how many times he nearly fell, and didn't even seem able to "see" where the chair was, to sit down on it. As he had ahold of me, he almost made me fall too ( I have severe ossteoporosis ).Getting him to the car this afternoon, to go back to the Nrsing Home, was excruciating to both of us.He was walking bent way over, arms extended, walker way out in front of him, shuffling very short tiny "steps".I had him stop a couple of times to rest, but he was getting so tired I feared his knees would buckle.
When I got to the Nursing Home, a chaplain saw me struggling to walk him to his hall, and he helped me get him to his room...but he almost fell also, when Jim made a dive for his bed long before he got up to it.
I do know that these are Parkinsonian signs, part of his Lewy Body, but only 30 days ago, he was not nearly this bad off.
The worst of it is, the Nursing Home staff gave me NO CLUE before I took him for the LOA visit.
I even wonder if it is safe for him to walk with the walker there...especially when they seem oblivious to his difficulty...
After I had been home a few hours, I called and made a formal complaint...I have been told they are good about addressing those.
Many thoughts are keeping me awake tonight~~fear for him in walking there, anger at them sending him out like this without warning or knowledge, shock at how quickly he is now progressing, wondering about future LOA visits and how they could be managed (and how important those visits are to both of us!).Sadness at something he told me this weekend (CJ I seem to be having trouble thinking)
There is only me, he has no family involvement...and tonight it feels more heavy than usual.
I know many of you have already been through this, and some of you are going through it now.All I can say is..besides having great empathy for y'all....we need help!


Mon Sep 06, 2010 12:31 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: horrors
Sadly in a facility these things you mention is normal to the staff, they see it x's all their residents, You didn't see him for a few weeks and that's one reason why it seemed so severe to you, it was a shock.

Maybe it is time for a Wheelchair on bigger walks or could someone at least help you get him to the car.

When you mentioned the walker being far out ahead of him, does it have wheels, that was a nightmare for us as my husband couldn't control the wheels even with the brake handle and if he did use them he would use only one which meant he would go off to the side.

Lewy is hard !!

Irene Selak

Mon Sep 06, 2010 7:17 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: horrors
Cindy, Sorry to hear about your weekend. You must still be weak from being sick and must have been so disappointed with your time at home with your LO. I think when we live with our lO day in and day out we don't always notice the decline, but we certainly would notice the difficulty with them not being able to get from point A to point B safely. I'm surprised they didn't mention it with the phone calls and especially when you went to pick him up. When Frank was in rehab, it was a wing at a local nursing home, I saw that the residents never received any stimulation or exercise, they might get wheeled down to the community room if there was going to be entertainment otherwise they just sat in their chairs wasting away. I'll be anxious to hear the explaination you recieve from you phone call. Be careful and take care of yourself, you don't want to find that you need a walker. Gerry

Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.

Mon Sep 06, 2010 7:31 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: horrors
Hi CJ - I can really relate to people in a facility telling you your LO is "fine" or "no changes". I think some of it is that they Do see this kind of behavior and decline all the time (like Irene said), in many of the residents, so it's no big deal to them. It may also be like when you're raising children. You don't notice as much how much they are growing or changing because you see them every day, but when the grandparents come to visit the changes are shocking to them because they live far away and don't see the incremental day to day changes. Perhaps this is why the head nurse where my dad is doesn't think he has anger issues - she's used to it, and every time his friends, other family members or I see him he is worse. We don't see the incremental daily downhill slide so it is more apparent to us.
My dad was the same way with his wheeled walker. His feet would stop or go too slowly and he'd be just about horizontal trying to hold onto it while it was way out in front of him. I decided that he was not safe using it and needed the other walker or his cane at that time.
You may want to reconsider taking your LO out because what will you do if/when he falls? The only way we could take my dad out this summer was to have someone at the ALF pick him up out of his wheelchair and place him in the car. We'd drive him out to get ice cream and he'd have to stay in the car because we couldn't lift him, put him in his wheelchair or lift him back into the car. Now they won't even let us do that because he is too fragile.
One of the things with many of our LOs with LBD is they have sudden, very noticeable declines. That seems to be a pattern for many of them. Yes, there are small daily declines but they can have pretty dramatic declines every once in a while too. My dad has been in this pattern for over a year.
You are a good person for all you do, and there gets to be a point where you can't handle the physical aspects of this. Don't feel guilty, just do what you can to help him be more comfortable. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Mon Sep 06, 2010 8:17 am

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: horrors
CJ, I agree with everything that has been said already. To add to it, if you have access to your LO's medication orders it might be worthwhile to see if there has been a medication change that he is reacting to. My LO had a very bad reaction to Seroquel that made her stiff, bent over and wheelchair-dependent until we took her off the seroquel altogether. Or,he may not be getting a medication that he has been prescribed. It happens in institutions. I do a medication spot-check every few weeks to make sure it is being given properly.

On the "finding the chair" problem, there have been lots of discussion of vision-related problems on this forum. Our Dr. calls it "visual processing". At her worst, my LO can't see the chair right in front of her. Visually she can see it but she doesn't recognize it as a chair. And it isn't quite where she thinks it is. She is quite capable of sitting down on the air right next to the chair (which means she falls). In an unfamiliar environment or even one that is familiar but different from the daily routine, if someone isn't right there anticipating every move she will fall. We keep a wheelchair stored in her shower for times when either her sight is so bad or her balance is so bad that we don't trust her to walk on her own, even with a walker. I think that having the wheelchair around makes it familiar and she doesn't mind when we occasionally grab it to take her out.

Both the vision and the balance problems are much better now that my LO's medications are balanced (particularly the exelon). However, there is one other trick that I still use. Before I take my LO out and try to get her in the car we walk around and around the hallways of the ALF with the walker. Getting her moving and saying "hi" to the other residents and caregivers seems to help her get her mind going too, and she is then able to figure out how to put a leg in the car and sit down on the car seat.

Good luck to you. Annie

Annie, daughter of brave Marie, dx 2007 and in ALF

Mon Sep 06, 2010 10:02 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: horrors
I have seen facilities that keep their residents in wheelchairs all the time to keep them from falling. I think this is wrong. Keeping them safer is not keeping them better. My husband is home and as long as he is able to walk, no matter how feebly, he will be allowed to walk. Yes, he has fallen about a dozen times the past few months--thankfully, without injury. When he is no longer able to walk, I fear he will lose his will to live.

Just my humble opinion, but I don't believe the facility did anything wrong in your case. As others have indicated, the decline is more noticeable to you because you hadn't seen him every day. I know you just want to keep him safe but you might ask yourself what his quality of life would be like confined to a wheelchair. God bless you! Lewy is a tough life with all kinds of conflicting decisions to be made. Just my two cents worth! :-)

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Sep 06, 2010 10:03 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: horrors
I don't know if others of you have experienced this, but when my dad went from Rehab (where he had very intense PT for 3 weeks and was walking pretty well with a walker) to the ALF, he "chose" not to walk anymore. We had to try to force him to keep walking with the walker and he just refused. He'd either truly not be able to walk some days or he pretended that he couldn't - with this disease, who knows what it was, but for all intents and purposes, once he moved to the ALF he was wheelchair bound, despite their best efforts. And I do know they tried to keep him up and walking. He also started refusing to cooperate with the PTs, and he had been cooperative with them in the Rehab place - he was very motivated to get the heck out of there! We changed PTs at the ALF at least 3 times, but he was getting worse in the agitation dept. so he wouldn't do anything they said. At least back then he'd wheel himself to meals, but has been unable to do that since Nov. last year.

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Mon Sep 06, 2010 10:18 am

Joined: Fri Jul 16, 2010 4:54 pm
Posts: 8
Post Re: horrors
Thank you all for your replies.I will try to answer as individually as I can.
After I took Jim back to the NH on Sunday, I chose to make a formal complaint to the staff of his hall, as there were also about half a dozen other issues form the past couple of months that were not being resolved.I had never done this, in the 11 months Jim had been in the NH.Likewise, they had only called one care plan meeting in that amount of time...
The next day (Monday) I spoke with the head nurse. Within about an hour, 2 issues were finally there was an order to have Jim evaluated by Physical Therapy as to his safety walking with the walker, and sitting too.She admitted there had been a sharp decline in his Parkinsonian signs, most particularly ambulating.She had no explanation as to why I had not been informed, especially since I was bringing him home.She attempted to apologize, without being able to explain their "slip" We discussed thier responsibility in reporting various things to me, his POA.She agreed they had that responsibility.
That is my start...and will look to see the other issues resolved.
I do know how much trouble he is having in walking, as I now have been informed that Jim has let up on much of his "activities" and is choosing to stay in bed :(
I believe he should do everything he can, as long as he can, including walking.Jim was dr-ordered to a w/c last fall, for about 6 weeks.It was tough, but with the help of Physical Therapy, he resumed walking.
However, I draw the line on "allowing" potential falls if the threat of them is most obvious.What does it prove if your LO falls, breaks a hip, and is then bed-bound for weeks, with pneumonia being a real threat too? Jim has had one fall at this point, and not recent...but he was coverd in bad bruising,especially his side and back. All these things are why I got the PT eval.
Visits home...are being re-evaluated.Only if measures for safety (his and mine) can be implemented, can I realistically continue them.Since this was such a sharp decline, or rapid progression, we didn't see it coming just yet...either. There may be help to get to and from the car, but his ability to sit safely has to be evaluated also.If there is a w/c, I am not sure yet...I already have a transfer board. Certainly, I will make every attempt to continue them,as Jim tells me that is what he is living for now.
Irene:thank you for your suggestions about getting to the car.I also have to be able to transport Jim to the appointments with his 3 outside docs, 2 of which he sees regularly.
Yes, his walker has wheels with the brake being in effect when he presses down.His doc believed that the type you have to pick up and set down would be too "complicated"~pt may have something to add to that.
Gerry:actually, I have had a walker for 9 years because of my osteoporosis :-)
The staff did see the change, their failure was in reporting it to me, and also getting the eval by PT as to his safety.
There is no perfect answer to everything...I know that someday JIm will have no choice but to use the w/c...and I will watch to see how much he is up in it, or involved...
annette: it is interesting you mentioned Seroquel..Jim is on Clozaril now, we were weaning him to get him on Seroquel.He is on the max dose of Carbidopa/Levidopa for the Parkinsonian signs, the only drug that seemed to aggravate those signs was about 3 years ago, a hospital dr tried Haldol...very negative reactions..and he has been on excelon patch for some time..

Again, thank you all for your responses.Yes, I was shocked, he has had some sharp decline before, but not in 3 weeks...and yes I was angry with teh staff for not telling me.I should be. It is regrettable, that they have 33 dementia patients, and one nurse, 2 CNAs, 1 daytime activity leader.I see that. But, it should not be a reason to make mistakes that can and do adversely affect their patients.That I suppose, is my 2 cents worth. :)
WE shall see what comes of teh eval next.In the meantime, it is time for my evening call to Jim.

Tue Sep 07, 2010 7:17 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: horrors
I see you've updated this post with a new post so I'll reply there.

I'm curious as to why you are weaning your husband off of Clozaril to get him on to Seroquel...? Actually, Clozaril has good data supporting it.

Mon Sep 20, 2010 4:15 pm
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