getting up on rainy days

[M_M]

Dear all,
My mum was diagnosed with Alzheimer in 2010 and she is now at a stage where she cannot use words correctly, has problems expressing basic needs, urinating etc... and eating - she starts eating alone and then forgets and has to be helped. She lives at home and since last year my dad was the main carer.. unfortunately he died of cancer last march.. so we now have a live-in carer.. Mum has accepted her but she has also deteriorated. Anyway, the main point of this post is to ask you whether you have experienced problems with Alzheimer sufferers of getting up (leaving the bed) on rainy days.. my mum tells her carer that the doctor told her she needs to stay in bed and if she is confronted, supported to get up etc then she becomes violent.. any suggestions on how to deal with this? thank you

 

[Beate]

Bed is a place of safety. As long as you can make sure she eats and drinks and has no bed sores, what's the harm in leaving her in there for longer than usual?

 

[M_M]

I agree it is not harmful but the problem is that she now at a stage where the doctor actually told us she has to keep moving, in order to avoid then becoming bed bound..

 

[Katrine]

At one stage my mum was doing this. Direct confrontation didn't work because she knew it was her house and got justifiably angry at someone else interfering and trying to tell her what to do.

The following strategy worked most of the time on days where she was not especially tired but had just decided that bed was the nicest place to be. Over the course of an hour the carer would ply her with nice drinks, making suitable pampering comments that fitted with her self view of a poorly person who needed cosseting. Eventually she needed the toilet and would creep out of bed to her en suite. She thought she was being stealthy but of course the carer was listening out.

The carer would then go into the bedroom and strip the bedding off completely and remove it from the room. The excuse was that it either needed airing, or the sheets needed washing. When someone is confronted by a bare mattress and the window is open wide with lots of fresh air billowing in, then bed seems a lot less attractive.

At that point assistance to dress will probably be accepted if it is accompanied by "there's some fresh cake for you in the kitchen" or "lovely cup of tea waiting for you" or "it's nearly time for your favourite TV programme" or whatever will work to make her leave her darkened lair for another room.

Apart from the mobilisation issue, it was vital that she got daylight stimulation. Without that she would get more and more sluggish and confused because she wouldn't be getting wake-up hormone stimulation to the brain.

Taking to her bed is harmful, IMO, and in the opinion of the OTs, nurses and doctors I have spoken to. The consensus was that it would significantly shorten her life. I don't think this is something I could have allowed. Failing to take action is a decision in itself, and I don't think it was my right to let her die early of avoidable causes. By taking to her bed the reduced blood circulation would create fluid build up around her heart and lungs, and increase the risk of DVTs and PEs (blood clots) and also the risk of stroke. She would have rapidly lost the ability to walk. Her personal care would have involved hoisting and commodes, and permanent use of incontinence products. She has now reached that stage, but it took her 6 more years to get there, not 6 months.

I have got furious with some lazy or sentimental carers who said "what's the harm if she enjoys it?" mainly because it gave them free rein to spend their day watching TV without providing my mum with active care. It is not a kindness to leave someone under stimulated and in a passive and sleepy state while they are still capable of benefiting from the alternatives. My mum now spends most of her time asleep but she is still able to be got up for a few hours a day, even though she then mostly naps in her wheelchair.

There comes a time when bed is the place you need to go before the big sleep. In the past people would 'take to their bed'. In modern times we know that this will hasten their end. Should we permit or facilitate this?

 

[M_M]

thank you Katrine!
It is a very good idea and i will pass it on to her carer...