MIL bedbound with Alzheimers - risks of immobility?

[Knitmyshickers10]

Sadly my lovely MIL is around 10 years into her journey with alzheimers and after an infection at Christmas is now confined to bed permanently in her care home. She is on an air mattress and the lovely carers check her regularly for pressure marking etc. She is doubly incontinent and is fed pureed foods. Some days she can manage un-thickened juices but others we visit and her drinks are thickened.

My concern is now this immobility. The nurses are reluctant to get her up from bed as she get s very dizzy and distressed and hates being hoisted. She seems happy enough in herself and will smile if you smile at her and will occasionally laugh if DH does something silly.

My question is - is she now more at risk of a chest / Urine infection due to laying in bed all the time or will the air mattress help? I'm not sure whether we should be asking them to get her up and into a chair - I get the impression that as we don't question anything or demand anything then shes left in the easiest place for them (which is bed)

No-one seems to say much about whether she is at 'late stage' or 'end of life'. She has had all her medication withdrawn now since her infection at Christmas and a DNAR was put in place by the hospital as they said they didnt think it was a good idea to admit her again if she got another infection.

Anyone been in this situation? Should we be insisting they move her around?

I worked in a care home and would push for her to be put in a chair from time to time as sadly from my experience a lot will just go with the easiest option. Did she used to like going to the communal area as it may be nice for her to be surrounded by others for a bit if she did. I used to feel like it was so sad for people just being kept in their room when they where always so sociable.

Is she being turned regularly as that's always a problem with people who are bed bound. Sorry if I can't be anymore help but just some ideas.

I would suggest you ask to speak to a senior nurse, the Manager
or the GP to establish what stage they feel she is at. If she gets distressed getting her out of bed then I don't think you should push for that without good reason. Is there a proper plan around the pureed foods? She possibly needs a Speech and Language assessment to establish if she has swallowing issues. Feeding her in bed may cause more problems if so. Ask to make an appointment to see someone and have a list of questions, and you can ask to see the Care plans.
She is lucky to have such a caring dil

Thanks both, this horrible disease has made every decision along the way a guilt ridden one. We constantly ask ourselves whether we are doing the right thing.

Fastingmum, thanks, I do think she is being turned regularly as she can sometimes be propped from the right or the left with pillows - to be fair she always looks very comfortable with her legs supported on sheepskin pillows too. In her previous care home (that wasn't nursing) she was still being medicated for aggression so would almost always be asleep whilst in the communal areas. She only moved to this new nursing home in December as they couldn't manage her needs in the old one. Now that all her medication is withdrawn shes awake all day long. I do often wonder if she gets lonely but we visit almost every day and she doesn't even 'see' us at times - its like shes in a world of her own and we have to clap or wave our hands around in front of her face to make ourselves seen.

Old Podge, thanks too - I know they referred her for a SALT assessment and there are plans in place around the feeding but I think they see how she is on the day - some days she can manage the un-thickened drinks, if she starts to cough then they put the thickener in.

Good idea to make a list of questions - they all seem so busy when we visit. If i ask how shes eating or how shes been I just get a airy smile and 'oh yes, shes fine' shes no trouble. Its as though we can't ever get a straight answer out of anyone. We are due a review meeting soon so I expect we'll get a better feel for how she is from that. We asked for a CHC assessment to be carried out as she had deteriorated so quickly and her needs had changed significantly. I dont think she'll get it though as her dementia is so bad now shes no longer aggressive. The whole CHC system stinks but thats another thread altogether!