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One of our home care nurses implied that we need to get her out of bed more. We feed her breakfast, lunch and dinner at the table during the day. I ask her if she wants to sit in the chair for a bit and she says "no, I want to go to bed." Should I force her to stay up or let her go back to bed? She has Alzheimer's and also had mini strokes over the years.

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If you have a comfortable chair, such as a recliner type or a big upholstered chair, set grandma up there for a couple hours. Elevate her feet and legs and have a window she can look outside or if you must, a TV but that’s not the greatest because Alzheimer’s patient can be frightened by TV.
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One of your home care nurses... What about the others?

Personally, I would say that if you are managing to get your grandmother sitting up at the table three times a day you're doing pretty well; and if you're getting her washed and dressed you're doing fine. And I would also say that if your grandmother is still able to express a preference about what she wants, on what grounds would you overrule her?

When I was quizzed on this issue by an occupational therapist who asked me to describe mother's daily routine*, the OT stood there with her pen poised above her questionnaire until she heard me say the magic word "encourage" so that she could tick that box. The point was that "asking" isn't quite enough, because if you just "ask" someone who is dog-tired if she wants to make an effort with something she is more than likely to say no thanks all the same. But if you encourage, support, assist, facilitate her to do it; and the person is still quite clear and firm about her preference; then you go with her preference. You do NOT force.

You will encounter people who have a highly structured care model in mind and are hell-bent on achieving it. In the perfect care model, your grandmother would be up at seven, washed, dressed, breakfasted by nine, ready for appointments during the morning, lunched at noon, nap for an hour, engaged in singing for the brain, handicrafts or pet visits during the afternoon, rested before supper at six, washed and changed into her nightclothes by nine and then tucked back into bed. In a tightly-run care home this would probably happen, more or less, overlooking the daily mutinies and non-compliance, whether she liked it or not. And for whose benefit, you may well ask? Well, for everybody's, really, because order and routine do tend to make for a quiet life all round. But isn't that partly why your family has chosen to keep your grandmother at home? - so that she doesn't get treated like a battery hen?

Still. The officious nurse does have your grandmother's best interests at heart as she understands them, so do your best not to tell her that she is unhelpful, annoying and falling down on respect for autonomy. There is little hope of correcting someone who's so convinced of the theory that she sees fit to guilt you instead of praising you and making constructive suggestions; but if nodding and smiling and saying "we'll do our best!" doesn't shut her up, perhaps you could ask her to demonstrate what she has in mind and let her see for herself that it doesn't work in practice. And if she really is prepared to overstep the mark and force your poor grandmother into an armchair... it probably wouldn't come to that, but if it did you'd have her kicked off the team.

*routine was a slightly grand word for it. I was just pedalling as fast as I could.
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Just to add one practical thing that might be worth trying. When your grandmother has finished breakfast, you could tell her that you need to change her bedlinen so would she mind sitting quietly with the newspaper or a nice view out of the window while you do that. As long as she agrees in the first place, and then seems comfortable when you check on her periodically, you might be able to spin this out for most of the morning; and it is true that maximising her mobility and changes of position and scene are good news for her wellbeing, all other things being equal.
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Spot on as usual, Countrymouse!
(I particularly liked the bit about being treated  like a battery hen.. lol)
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The nurses are just worried about lack of circulation, loss of strength and skin breakdown which all occurs with too much time in any one position, bed or sitting up. Staying in bed does not allow your grandmother to engage well in her surroundings which is important for anyone especially one with dementia. Does she walk? Can she do some light exercise by watching you demonstrate? These are two things you and she could do together. If she does not have anything to look forward to after meals, why wouldn't she want to just go back to bed? Have the nurse check her for depression as well. Depression is common in people with dementia and should be ruled out or treated if needed. Good Luck to you.
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i have the same problem with my mom she just lays in bed till she has to go to the bathroom ..then she goes back to bed i tried a lot ..she is 82 yrs old been doing this for a year & a month i did try to suplement her diet vitamins & salt she has to have a lot of salt then for a while she stayed up kinda normal until around june 20th then she stayed in bed ..i live in a hood where the blow real loud fireworks & she would get pissed about that but she didnt in 2017 but i give her like vitamin e & b 6 12 & D ..i got some cinnamon capsules so i could empty it out & put salt into it ..so since chx her catheter stop working & so had to send her to the hospital she was to weak for me to take her ..they say she does good on rehab in a skilled nursing home ..by the way dont take stuff there if it is a liking to others i took my mom's sam jacket there & they sayed they had to clean it & now it is gone i think today i am going to tell the big shot people about it tell them find it i told them since wenseday missed tues got stomach bug from there had a 101.2 temp so i am going to get her today ..i bet she goes to bed
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Gosh.

You can fit quite a lot of salt into a cinnamon capsule.

Are you doing this on medical advice?

If you've had one of the really vicious stomach bugs that are doing the rounds this year, I think I'd give it a little bit longer before you bring your mother home. Just to be on the safe side. Hope you're feeling better but I bet you could do with a few more days to get really over it.
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At some point leaving someone in bed, the PROPER bed, is safer.
What your Grandmother needs is to be "repositioned" at least every 2 hours and ideally moved slightly more often.
Moving can be as simple as adjusting the height of the foot or the head. You could also grab the sheet and slide her a bit up, down or over in the bed. This moves her a little.
Re positioning you should roll someone from the back to the side then over, then repeat on the other side. This relieves pressure in the areas the are in contact with the mattress. So head, shoulders, back, buttocks, calves and heels.
Doing this also is a time when you should check these areas for any redness or other skin color change.
A pressure sore can happen in a matter of an hour. It is identifying it when it is small and manageable and not wait until there is a drastic change or worse, an open wound.
If Grandma wants to stay in bed and that is where she is comfortable there should not be a problem. If you do not have a hospital bed ask that one be ordered. (If Grandma is on Hospice you would get it probably within 24 hours)

If the reason Grandma does not want to sit in a chair is because she is afraid of the transfer or if it hurts her that is another thing that can easily be addressed. A Sit-to-Stand or a Hoyer Lift would easily help with that and again they can be ordered.
Sit to stand is for someone that can support their own weight and can follow instruction and hold onto the machine.
Hoyer would be a full sling that you would have to place under her then hook the sling to the lift and she can easily and comfortably be lifted from the bed to a chair.
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My mom is 90 and has moderate Alzheimer's. I let her stay in bed until she feels like getting up. I do think that if it were up to her, she'd be in bed all day, but she still has a feeling that she needs to get up and dressed. That being said, she spends all day on the sofa and has no interest in walking around at all. She was living in assisted living, and we moved her in with us for a variety of reasons. She's very happy here, but she has lost considerable muscle since moving in with us because she doesn't need to walk to her mailbox or to the dining room. I agree that if you can get her into a recliner, that might satisfy your nurses and get your grandmother out of bed. A nice recliner is sometimes more comfortable than a bed!
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In a NH, the patient is taken out of bed and sat in a chair all day. The reason for this is probably to clean the room and change the linens.

This doesn't mean it is better for the patient - it is better for the NH staff.

I agree, if your GM sits at the table 3X daily to have meals - you're doing a fine job! It is typical for up to 20 hours of sleeping daily as they age. My DH is in the 16-20 hour range and I just let him sleep. His preferred position is prone but I get him to sit in his recliner a little every day so I can change the sheets and straighten them. Invariably he reclines to a sleep position. Would you force a baby to sit up all day? Well, as they age, our elderly revert to being like bigger babies and they want to sleep. It's nature and natural.

Don't let "one of the nurses" upset you - you're doing a fine job!

Besides, sitting in the wrong position will make "pressure sores" and you really don't want to mess with them if you can avoid them.  My DH only gets them in his Lift-Sleep Chair so I don't make him sit there very long.
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It is correct that moving around does stimulate circulation and that is very important to preventing blood clots and helping breathing But this requires actually moving not being dumped in a chair.
In one hospital I was sat in a chair and not allowed up alone from 5am till dinner time. i was urged to stay till after dinner. i said "I have been sitting in this bloody chair since 5 am so i am going back to bed NOW.
In rehab I was forced into the battery hen brigade but was non compliant. They did not have bed or chair alarms there
As we reach the end of life we simply want to be left alone and not stimulated. There really is nothing to be interested in if we have dementia or have spent our lives being solitary. I would be far more upset . If you feel there is something missing in someones life try and find an activity that they used to enjoy doing and present that ready to go. They will either do it or set it aside but it is their choice. For example if someone had been skilled knitter get them some heavy yarn and big needles and start the first few rows. They can make smallish squares which won't be too cumbersome to handle and they might actually enjoy doing that. The squares can be sewn into a lap robe and either used by the knitter or given as a gift. No offence to cat lovers but there is more than one way of killing a cat!
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I loved reading all these answers. Caring for an aging loved one is definitely a balance of encouraging, helping and listening to what grandma/grandpa wants to do as well. When I was in college, I worked as a CNA in a nursing home (dementia wing). I learned so much in that job. I was responsible for the daily care of 9 people each day from breakfast to just before dinner. It was very challenging, but ultimately rewarding. Anyway, we got every single resident up, dressed, washed, and fed each morning, and most of them in their wheelchairs and parked in the common room or hallway. Some were ambulatory, but many just leaned back and slept in their uncomfortable wheelchairs. I asked why they couldn't just go back to bed for a nap, and I remember another staff member telling me that if the family came to visit, and grandma was still in bed, they would be very angry. That really stuck with me. I remember thinking, "if this was my mom, I'd let her sleep in a bit". SO, now that I AM caring for my mom, I do listen to her. I let her sleep in, but I also strongly encourage her to get up at a certain point because it is good for her and she can interact with the family. I don't have a certain time of day that I force her to get up. As long as she is comfortable, has eaten, etc. and she wants to sleep in a bit, then I say she has earned the right to do that! God bless all the caregivers out there...it is not an easy job.
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Everyone has made good points on this post. The problem is, the less you move around and get up and out of bed, the more muscle mass you lose and then lose the ability to be mobile when you want to. I think you are doing a wonderful job to get your grandmother up and out of bed for all meals. this is a huge accomplishment. Sometimes, one has to be pushed a little bit but it is a difficult battle. We know that 'if you don't use it, you'll lose it' when it comes to muscles. My mother would allow my sister to get her up three times a day to use the bathroom but always resented me suggesting she sit up at a table for a few minutes to eat. Now she refuses when anyone offers to get her up to the bathroom (in a rehab facility) even but then is delusional into thinking that 'one day I will walk again'. It is a sad state of affairs, really. I guess there is really no one right answer. People have the right to refuse care (or being sat up in a chair) but need to know there could be consequences fo progressive debility and muscle atrophy.
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My mom is 81retired RN and still a nurse at heart ..she loves getting up with me when I,am,preparing to go to work at the hospital..I’m a RN BSN and I get up very early I have to,be on the unit I work on 1/2hour before the shift starts ..I get up at 0445 and she gets up gets in her wheelchair and climbs in her lazy boy recliner watches tv ..her caregiver comes about then ,,she kisses me goodbye and she watches tv most of the day ,,she loves matlock ..then she goes to bed early the caregiver puts her in early ..now yesterday she wouldn’t go to bed until I got home and I put her to bed , she has Alzehemiers and dementia and I think it makes her feel apart of working again ..I’ve been a nurse since 1986 ,,and she loves to comment on my scrubs she says “where ‘s Your nursing cap and pin? “ I say I don’t wear them ,,she is soo funny ,,,now on my days off ,,we sleep in watch movies in her bed ..and she can sleep all day if she wants ,,she’s home she can do what she wants ,,I fix her supper bring it to her in bed and we talk and she gets up and drinks ensure enlive and eats whatever she wants ,,she loves cottage cheese and fruit ,,she is not a big eater but she drinks all the ensure enlive she wants ..so yes it’s important to get up if not it’s putting her at risk for pneumonia and blood clots in her legs..but your gram is elderly and I think maybe encourage her to get up ..for a little bit each day for meals , linen changes , dr appointments ..I take my mom out for a ride in the car for a milk shake ,,when I can get her to go ..usually after a dr appointment..I think you should play it by ear ..I try not to stress Mom because she gets scared and the she will not do anything I ask ,,I don’t poke that bear ..lol.. just encourage her to get out of bed ...I take my mom outside in my yard when it’s nice ..listen to the birds get out in the sun,,
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The answer depends on a variety of factors, such as her age. Plus sitting at a table for a meal 3  times daily for an Alzheimer's patient, in and of itself, is quite remarkable! Kudos to you!
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i have the same problem with the FIL his dream world is more interesting then his real life and in his dreams he can do more with less pain, he is happy there . I don't bother him about it all part of the illness
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