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People have always said that there is no such thing as a stupid question… I disagree... My husband asks them all the time. 😊… With that being said, this one is probably a stupid question, but I am going to ask it anyway because I have never been through this before.

When do you know that someone should be bedridden? Is it when the person, themselves, makes the decision to not get out of bed anymore? Or is it when the person can no longer walk without major assistance and the caregiver/healthcare provider decides?

Mom has needed assistance walking for several months now. She refuses to use a walker, which really wouldn’t help anyway because her balance is so bad. Plus, she can’t get it in the bathroom (and refuses to use the bedside commode).

Up until now, I have been able to handle supporting her when she walks. At times, I have had to forcibly walk her to where I wanted her to go. She is pretty headstrong, though. If she didn’t want to go wherever that was, she would put her breaks on and you could not move her. Or she would grab hold of a door frame and you could not pry her hands off. (Even my brothers have experienced that.) Too bad her leg strength is not as good as her hand strength… Plus, when you want her to do something that she doesn’t want to do, she will “cry.”

The past few days have been hard. She can hardly walk, even with major assistance. We do have a transport wheelchair; but even when transferring her to and from that is hard. She is dead weight. (Again, the wheelchair won’t fit in the bathroom, so someone would have to walk her in and out of there, which has become increasingly difficult.)

Yesterday, my brother brought her to my house for a visit. (I got a short break from caregiving.) She was insistent on going inside. (I was outside painting.) It took two of us with a lot of physical effort to help her up and down the stairs.

When I got her home at 5:30 last night, I had to forcibly walk her to her bed, where I had to leave her all night. That was before she was insistent on going to the bathroom, where I had a hard time getting her off the toilet and to her room. Then, she started to cry (no tears). I felt bad about putting her in bed so early, but I was afraid she would get in her chair and I would not be able to get her out. She slept all night.

This morning, I changed her and fed her breakfast, but left her in bed because she didn’t seem too anxious to get out. She can’t tell me she wants to get out, but she will put her legs over the rails, which indicates to me that she does. (She is not strong enough to do any more than that, so I am not worried about her falling.)

I hate the thought of her being bedridden, but I am getting to the point where I physically cannot handle her (even though she has lost weight). Who makes the determination that the person should be confined to bed? How do you tell someone that they have to stay in bed because they can no longer walk, but their cognitive state is such that they cannot be reasoned with?

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Countrymouse, Mom cannot tell anyone where she wants to go, though sometimes she will have a lucid moment and say she has to go to the bathroom. She lets you know where she wants to go by walking there with me supporting her under her arm.

Last week, she wanted to go outside (where she was walking, not her words). There are steps to go down. So, if she is too weak to walk the steps with assistance, for her safety, I cannot take her outside. She was insistent on going outside last week, and it was 95 degrees. She just stood in the driveway. It was too hot for both of us. I had to coax her back inside. She did not understand that it was too hot. So, when I say I have to forcibly walk her to where I need her to go, it is really coaxing her and it is for her own safety. It doesn't matter what I verbally say to her. It doesn't register.

I don't "want" to confine her to bed. But, how will I know that is where she needs to be all/most of the time? The majority of the day, she is either sleeping in bed (her choice) or sleeping in her chair. If she was in a nursing home, it wouldn't be any different. I have kept her walking and will continue to do so as long as I can. But, I also don't want her getting hurt if she can no longer help me by supporting herself, leaving me to pick her up. I don't always have help, and have not needed help thus far. Her not walking very well even with assistance is new as of a few days ago. Maybe it will pass. The hospice nurse said that it will get to a point where she will only be able to get out of bed and pivot to the commode and back. Maybe we are getting to that point.
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Reply to Mapotter
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Call her doctor and tell him what is going on. Maybe Dr. will give you an order for physical therapy in the home. The therapist will evaluate Mom. While they are there u may be able to have an aide. If the therapist feels exercising will not help, it may be time for Hospice care. No, you don't have to be dying in 6 months. New criteria.

Your Mom is not being fair to you. She needs to use a walker with you assisting. You could really hurt your back. My Mom was sitting in her lounge chair when I gave her a "hand up". Instead of the usual pushing up to help me, she pulled back so I had all her weight. I let her go. I have no upper body strength and think because of the all the helping up I did do, caused my bulging disk. Can't do anything when u hurt ur back. If you get therapy, ask the therapist the safe way to lift Mom and walk her around. Also, to have a talk with Mom about helping you to help her. If her legs give out, you may not be able to care for her anymore. In NHs it takes 2 CNAs to transfer a person that is dead weight.
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Reply to JoAnn29
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My mother was literally dead weight following her stroke. She couldn’t sit up, roll over, or help in moving her. She lived this way for four years but was never bedridden. She was several times a day moved from bed to wheelchair and back. She was repositioned frequently and never had any issue with bedsores. This was possible through good nursing home care, we could never have accomplished it in home.
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Reply to Daughterof1930
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My DH was not bedridden until his last 3 days. When he was no longer able to stand up because his legs would no longer hold him, he became bedridden. He was only in "adult briefs" for 2 days because he could no longer stand to go to the bathroom. His last day we had to catheterize him.

I had no problem being a 24/7 caregiver and walking with him everywhere he went - supporting him when needed. I encouraged his mobility until it became impossible for him. I kept him ambulatory until that last 3 days. I allowed him to pass with dignity. And I sorely miss him.
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Reply to RayLinStephens
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My wife was bed and chair bound for 12 months. She was physically aggressive (hit, bite, pinched, pulled hair, etc.), and fought me when I transferred her to wheelchair, toilet, kitchen chair, sofa, lounge chairs, auto, etc. It is difficult dealing with a non-compliant dementia loved one. Eventually I found an experienced Home Health Aide and spent the children’s inheritance. Good luck, Tom.
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Reply to thomas0612
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It's not a silly question.

There aren't any very attractive answers, though. Sorry.

Um. If your mother indicates to you that she wishes to get out of bed, the "correct" thing to do is to assist her to get out of bed. It is, further, "correct" to allow her to go where she wants and to accompany her there.

If you are the kind of saint employed by Methodist Homes for the Aged, now known better as MHA, an organisation specialising in particular in dementia care, you will smilingly and patiently accompany your charge(s) all around the mulberry bush, deftly redirecting and intercepting all the other residents who come your way while you are on your travels with your main patient.

I wouldn't be mentioning this if I hadn't seen it done. *How* they did it, and didn't go insane themselves, or give in to the urge to take the resident's arm firmly but gently and frogmarch her back to the lounge (like I was itching to)... well, that's what vocation and training can do, I suppose.

Are you getting any help?

I'm just wondering if there might be a compromise like - thinking while typing, here - setting aside an "exercise" session when there are two people available, so that mother gets a good toddle about to get it out of her system, but your back isn't at risk and she can be safely supported. If you aren't physically able to handle her then you mustn't anyway - it's dangerous for both of you.

*Just* confining her to bed is not ethical, though. But I don't think you'd have bothered posting if you hadn't already known that, no?
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Reply to Countrymouse
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Ugh, I really feel for you, as with her dementia, you cannot communicate with her very well, and Not knowing if she is in pain, is increasingly difficult!

I know that when My FIL fell in his Assisted Living apartment, he fell at night, but was not found until Noon the next day, so approximately 12-16 hours on the floor.

He was rushed to the hospital where it was found that he had Rhabdomyalysis, dehydration, hypothermia and Pneumonia, and upon further investigation a mass in his lung, which had metastasized to his rib bones, though no biopsy was done, via xray and CT, it was presumed Cancerous.

We brought him home to our house on Hospice care, and we soon found out he was So weak and in pain, he was bedridden, as even with two of us, we were unable to so much as manage him safely to the bedside commode, he was 170#s of dead weight, and both my husband and I with bad backs. Hospice did offer us a Hoyer Lift, but with the small sized bedroom, and carpeted floors, plus him having the severe rib pain upon movement, it was decided he best remain in bed.

He never complained about getting out of bed, he was too weak to care by this point. Then it became a struggle on how to toilet him, so our Hospice Nurse put in a Catheter, and he began wearing adult diapers 24/7 for BM's.

Slowly over the next 9 weeks (that he lived), he became weaker and weaker, unable to turn over in bed without assistance.

I think the decision to keep them in bed is twofold, one, are they too weak to ambulate even with assistance, and two, is the Caregiver able to manage the patient, without injury to themselves.

When it gets to this point, most often the patient is admitted to a Nursing home, but in our case, we knew that the end was near, and we were doing our best to keep him home to die, as was his desire. Thankfully, we were able to accomplish this. Good luck to you, on how you manage your situation with your Mom, it's so very hard!
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Reply to staceyb
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Countrymouse, the hospice aide comes 5 days per week now to get Mom bathed and out of bed. The aide is supposed to be here for an hour. I come right before she leaves. This morning, she had finished washing Mom and was starting to get her out of bed. Mom was crying. She said that when she told Mom she was going to get her shirt on her, Mom started crying. Mom did indicate (as best I could tell) that she wanted to get out of bed. So, we got her in the wheelchair. I have since gotten her in her chair (after I cut her hair). I hope I can get her out of it...

The hospice social worker called first thing this morning since she had heard about my call to the 24/7 number yesterday. She is coming out with the nurse this afternoon. I will see what they say.

I felt so bad last night...:-/ I tried twice to get Mom out of her wheelchair and into bed... I figured she was fighting me.... Then I realized I forgot to unhook the belt on the wheelchair... :-/ Well, it was good for a laugh... (though Mom wasn't laughing! :-))

But then, when used the transfer sheet to slide her up the bed a little more, she started crying like I was tearing out her heart. I didn't even touch her. So, I don't know what it is. I keep wondering if her joints hurt, but she has said several times when she is asked that she isn't in pain. I don't know if she is scared, or what.... Who knows what her brain is doing.....

Since this is such a new thing, I haven't thought of who I can get to help if my brother can't. I can't see paying for someone to come when I don't know when I will really need them. We can't afford to have someone here all day on the outside chance I may need help.

One problem with my brother, other than is health, is that he won't listen to me. When I first got her in bed, I asked him to help me slide her up (before I used the sheet myself). I told him to grab under her left shoulder and leg (I will grab the right side). Then, together, we will slide her up. He can't seem to get the concept. He put his arm completely under her back and both legs (as someone would do when they were picking up someone by themselves). Then he had to go sit and use his oxygen. I can't get through to him that he is making it harder on himself... Eventually, you learn with him that he will take everything as criticism (no matter how you say it). Then he will get p.o.'d.
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Just thought. Maybe Mom doesn't feel secure with a regular walker. Here is a link to a walker they use in NHs. The person can sit and scoot around or stand to walk. If they tire, they can sit down. I know, expensive but it gives some mobility.

https://www.phc-online.com/PVC_Adult_Walker_p/MIL418A4.htm?click=102243&gclid=CjwKCAjw7IbaBRBqEiwA6AyZghUWLDXh8xL9bbNBpCYUVAtsXl-_nStdKfPqZAKBGuQG1L9OZ3R0PhoCtJIQAvD_BwE
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Reply to JoAnn29
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Countrymouse, Mom is sometimes compliant with getting in the wheelchair. On Thursday, she wanted to go "to the store" (which one, I don't know...). So, I got the wheelchair. She said, "We don't need that." 99% of what she says is gibberish. But, occasionally, she will say something coherent.

Friday night, she was asleep in her chair. It was 7:00 and I wanted to go home, but my brother cannot get her in bed. So, I stick around until she gets in bed. That can be anywhere from 6:30 until 9:00. I tried to get her up, but she fought me. I asked my brother for help (he has pulmonary fibrosis, so he can't do much that requires excursion). She fought both of us, yet she was "asleep." I wanted to put her in the wheelchair, but she stiffened up and her legs straightened and slid under the wheelchair. All I could do was turn her around and sit her down, even with her legs twisted. So, that is how she can be at times. I didn't want that to happen last night while I was by myself.

I can occasionally distract her when she is crying -- like with a video of my granddaughter. She doesn't respond to music (tried that, too).

This morning, she is still in bed asleep. It is 11:00. After I fed her this morning (I had to feed her), I took the tray back to the kitchen and when I got back, Mom was acting like she was feeding herself -- grabbed hold of her top and was trying to get it to her mouth. Her eyes were closed. I am afraid we are in the downhill spiral...

As always, thank you. I enjoy "chatting" with you.
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