not sure what's going on

[SitsThere]

Mum's been in a residential nursing home for over a year now. She has mixed Alzheimer's and vascular dementia and was prescribed Donepezil in September 2014. For much of this year she has seemed to be doing well physically and has seemed much happier and less anxious, but quite suddenly two weeks ago she took to her bed and hasn't got up yet, nor is she showing any wish to do so. At first everyone said it was a seasonal virus that was hitting her hard, but as things have gone on she seems to be getting more poorly and isn't shaking it off. The carers are putting all the accidents with wetting and soiling the bed down to diarrhoea. The doctor has been to see her twice and says she hasn't got anything seriously wrong (apart from the obvious). But what worries me is that not only is she sleeping all the time, not answering the phone, not wanting to get up, but she is only eating a few mouthfuls a day and says that her whole body is aching, to the extent that when I tried to help her to the toilet she was crying out with pain and could scarcely walk. To me this doesn't look like just a seasonal cold. Mum would never choose to stay in bed and sleep if she had an ounce of energy left. She just doesn't do staying in bed even when her hip was broken. This is so unlike her.
We were told at the time the Donepezil was prescribed that it would only be effective for between 6 months and a year. Is it possible that when it wears off it could produce a sudden worsening of the dementia symptoms ? Does anyone have any experience of this ?

 

[100 miles]

Dear Sits There,

Sorry that things are so difficult at the moment. I don't know what is going on either...but it does sound as if you need to get the Dr out again. No-one should be left with undiagnosed pain. Have the home given her any form of pain relief?

Could she be hurt but unable to express the problem. Old people are so frail.


Best wishes.

100 miles

 

[1mindy]

Is her hip OK now ? Just wondering because of the crying out in pain when she tried to walk .

 

[SitsThere]

So, a week on and mum still hasn't got out of bed. She did have a UTI but has been getting antibiotics for that for the past 6 days, and stronger painkillers for the back pain. The carers at the home, and I, have tried very hard to persuade her to get out of bed but she is refusing to do so and seems very poorly, more confused than ever, and is refusing food - and visitors, which is very unusual. The worry is that the longer she stays in bed (it's over three weeks now) the less mobile she will become. Yesterday I tried to joke her out of it, remembering how she has always scorned people who stay in bed. "Have you taken to your bed for good, Mum?" She replied, "Yes".
The carers say that now that the cold/flu bug and UTI are out of the picture this looks like a step down in the dementia and that it's typical of the illness for someone to begin making choices the opposite of what would be normal for them - in this case, staying in bed and not seeing anyone.
Dementia - has to be the worst way for anyone's life to end. And as the carers pointed out to me, there are other people in the home with far more advanced dementia than hers. Sometimes I just thank God that our dad didn't live long enough to see mum in this condition - it would have killed him (if cancer hadn't done that 17 years ago).

 

[chrisdee]

Dear SitsThere,
It seems to me that however long we 'study' dementia, both from the sufferers we love, and reading the forum, we never quite know how an individual is going to progress or put it another way, how things will turn out. Just when we feel we are getting a handle on this horrible disease, it seems to twist and turn as if deliberately tripping us up. All I can suggest is to go with the flow and keep an eye on Mum, to monitor that she is not in pain and her wishes are respected as far as reasonable. You could try asking a senior carer/nurse what they think of this turn of events. Taking to your bed can go one of two ways, some recover, often miraculously, but for some it is the other alternative. My heart goes out to you, keep posting. Yes, I too was glad that Dad was not there to witness . . . I feel quite sick thinking about it and no, its not want anyone would want for their worst enemy, let alone a much loved Mum.

 

[pippop1]

Gosh this is hard.

Is it possible that she has something nasty going on inside that she can't explain. I don't want to worry you but it's a possibility unless she has had scans. How about a blood test to start with? Could it be anaemia from internal bleeding for example?

 

[SitsThere]

Gosh this is hard.

Is it possible that she has something nasty going on inside that she can't explain. I don't want to worry you but it's a possibility unless she has had scans. How about a blood test to start with? Could it be anaemia from internal bleeding for example?

Yes pippop1 I am wondering the same thing. Having seen her again today (she was really struggling to string a sentence together and kept falling asleep) I am going to try to talk to the GP, who has been treating her, tomorrow to ask some questions and see what she thinks is happening.

 

[SitsThere]

Now we know what's going on

So, it was worth speaking to the doctor because it turns out the GPs concluded last week that the back pain was not due to a UTI but to a compression fracture of the vertebrae in her lower spine, which is common with osteoporosis. For some reason this information wasn't passed on to us but it makes perfect sense and at least now we DO know what's going on. Mum having a fractured spine is certainly not good news but at least it explains the sudden changes and means that with good pain relief she can enjoy a better quality of life, even if that is less active than she was before.