An empty chair and being bedridden

Judi57

My DH has to be in bed because he can't pull himself out of his lift recliner in late afternoon.  And I am so frustrated because of this  In this case, I don't think it is the end stages.   

He has been immobile for over 3 years.   He can still feed himself, knows when he has to go to the bathroom, can laugh with me, understands when I'm upset, enjoys television, can pull himself into his sit to stand every morning 5 times--we call that his exercises. Yet, in the afternoon, he can't pull himself up once from his lift chair. This has happened two days in a row with my calling 911 yesterday. He is only spending about four and a half hours in the recliner anyway; the rest of the time is in bed.  He enjoys lying in bed and watching television.  

So, now he may be bedridden because of this because I have failed to get him up.  He can't guarantee that he can get himself up, and I can't guarantee that I can lift him without some help from him.  He was already on palliative care through hospice, so I called them last night.  They will come out to assess him this afternoon.  But with his other behaviors, I don't think he will qualify for full hospice yet.  I am concerned that keeping him in bed all the time is just going to make his muscles weaker.  My plan is to still have him do his 5 exercises in the morning, wheel him around in his sit to stand device, and then back to bed.  I ordered a camera so that he can see the outside from his bed since the bedroom arrangement doesn't allow him to see out any windows.

I thought about hiring someone to come to the house to help get him up--a fifteen minute job--a few times a week just to get him out of the bed for a change.  But I doubt if there are many people who would want to do this, if any.  

We talked about it last night, and he understood.  He said "we are a team.  We will get through this together."  But, of course, this morning he probably won't remember that I called EMS.  

At this point, I just feel so helpless. I sit her and cry as I look at his empty chair believing he may never sit in it again.   I know I can take care of him if he's in the bed, I just hate to see him there. 

Ed1937

Judi, I'm so sorry. I know it is really hard for you, but please don't try to get him up by yourself. That could be disastrous for both of you. I know this is a longshot, but when they come to assess him, ask if they can run a test for UTI. With his history, that likely isn't the problem, but that possibility does exist. It's better than doing nothing. I wish you luck.

Judi57

Thanks, Ed. I appreciate your response, so few respond to me for some reason. 

I did check for a UTI with a home kit.  All is okay.  I know it's not one with a culture, but I think he is safe.

MaryG123

I’m so sorry this is happening Judi.  Please remember that his deterioration isn’t your fault, and you can’t change it.  I think your idea of getting an aide to help get him up is a good one, and the hospice team may know of someone who can help.  Do they have a counselor you can talk to about your loss and grief?

jmlarue

Something as simple as encouraging him to begin doing exercises for both arms and legs while sitting and watching TV would help. When he gets up to toilet, walking in in the house for 15 minutes before sitting again also might help. Perhaps the Palliative care nurse can set up a physical therapist to work with him on preventing his muscles from further deterioration just from lack of use. Putting him to bed permanently should be the absolute last resort. That can bring on a whole host of other problems including bed sores, constipation, incontinence, or pneumonia. It sure sounds to me like it's a case of "use it or lose it." It's good that you have a Palliative care team to assess and advise you.

Fairyland

Sorry about the struggles- just wanted to add, it might be better to have him do hard things like chair transfers in the morning.   Afternoons are my worst part of the day, personally.

Marie58

Judi, I think you are correct to keep him moving as much as you can. But don't hurt yourself in the process. Maybe your pallative/hospice team will have some suggestions.

Judi57

Mary,

I do have someone I can talk too.  It's just hard describing what I go through since some counselors don't have the experience of being a caregiver.  The deterioration is hard to watch.  I guess because I know the end result.

Judi57

jmlarue.  He is already immobile.  He hasn't walked in over three years.  He just had PT about a month ago.  His therapist who has been with him the entire time says the strength in his legs and arms haven't deteriorated.  But I've been working them.  I don't want him there permanently; that is what is bothering me. 

Judi57

Fairyland, 

I think you are right about the mornings.  I will continue to do his morning exercises while he is more alert.

Judi57

Marie.  Keeping him moving is my goal.  He is already spending nineteen hours in bed.  And he enjoys it.  I think the exercises we do help him roll over better.  And maybe we will get someone to help me help him stand.  It was his gait and walking that was the first clue something was wrong.  The memory problems came a little later.  And even though he wants to walk and his legs are strong, his mind just won't let him.  Which from what I understand, the ability to walk usually isn't one of the first things that happens in an ALZ patient.

ImMaggieMae

Your idea to get a hospice nurse over to assess the situation sounds like a good one. Maybe they will have an idea of a different way to get him up or some other sort of device or exercise to strengthen the muscles he needs to get up. A caregiver also sounds like it might be a good idea. You could specify that you need someone mainly for helping him to move. It’s also another face and someone else to talk with. 

We hired a caregiver through an agency a few months ago, just to give us a small break for errands or just cleaning projects. I was resistant at first, but it has worked out very well. I can spend as much time as I need grocery shopping. The only downside is the cost. The going rate around here is $35 per hour with a minimum 4 hours per day, 12 hours per week. My DH is physically in good shape, but I found that it was a positive thing for him to have another friendly face a few times per week to talk with and often just to watch tv with him and get him snacks. We were lucky to find a lady who works through an agency, who is very nice, low key, and can handle incontinence issues. He was not resistant to having her here. We don’t have family nearby that can help. 

 The idea of having him try the chair at a different time of day also sounds good. We all have different energy levels at different times of day.

Let us know if any of these ideas work.  

Josie in Podunk

Oh…I am so sorry.  That has to be very worrisome for you.  Not to mention dangerous for you to be trying to life him.

The nurse is definitely a good idea.  Maybe, you two can come up with a reasonable method to help him help himself.

Caregiving is certainly not an easy task even so we love them so very much.

Judi57

Maggie,

Thanks for commenting.  The caregiving services here are about $26 an hour with a two hour minimum.  One agency isn't particular about how many hours per week, but another wants no less that 20 hours per week.  That's a large amount of money.  

Judi57

The nurse just left, having no new ideas.  She's not sure if he is eligible for the full hospice service, but he will still have his palliative care.  She will confer with hospice doctor and let me know.   Most people not working with PWD have no clue.

Judi57

Bull Dog.   I have a Hoyer lift but have no clue how to use it.  I don't think he would like it.  When he was in a SNF to rehab for his walking 4 years ago, they used that for him.  I'm sure he likes sitting up in the bed much better.

Lills

My  DH had a hoyer lift--but I never, ever used it alone.  

Can you look into a "lift-assist" piece of equipment to help him up?  (Google it)

Good luck. 

Judi57

Lills,

We have two manual sit to stand devices which he has been able to use every late afternoon until Wednesday.  And now he can't.  We also have an electric one, but it probably will not work with the lift recliner.  I've got almost everything, but he still can't pull himself up.    I'm just so frustrated and at the same time scared to try again.   He may fall.  I wish there were an easy answer.

M1

Judi, just have to say that this is NOT your fault.  Seems like you want to blame yourself--but it was a matter of time, it's whatever disease he has, it is not some failure--moral or otherwise--on your part.  So discouraging though, for sure.  I wonder if it would be worth asking another agency to evaluate him; sounds like one way or another, you're going to have to have more physical help to manage him.  I can only imagine how you're feeling.  Glad you posted.

Judi57

M1.   I appreciate your comment about it not being my fault.  At times he seems content to be in his bed watching tv with me waiting on him.  But he will, of course, forget he can't walk or get up and asks when I'm getting him up.  My angst and anxiety starts all over again as I have to explain to him we can't do it anymore.

I'm going to post on our community FB page for help, talk to the chief of the ENTs of the local fire department, and a retired male RN to see if I can find help for an hour a day when it's time to get him out of his chair.  I'd rather he not be confined to his bed yet.

This morning around 2 a.m. when I was turning him over and getting him dry again, he sensed something was wrong and asked me.  I said I was just sad about the entire situation.  He said "It's not your fault; it's mine."  Although I know it's not his either, in his lucid moments he doesn't blame me, and that helps.

His PCP diagnosed him with AD, but I believe it is vascular dementia.  His CT scan 4 years ago showed mild small vessel disease.  His abnormal gait and later inability to walk early in the disease lead me to that conclusion.  With AD, I always believed that the inability to walk came later.  It really doesn't matter what it is, it is still horrible.

MaryG123

That sounds like a good plan Judi, and I'll bet those folks will find someone to help you.  It's a sad situation for both of you, that's for sure.

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