Is this normal?

Suzy C

Registered User
Sep 16, 2019
63
0
Hi everyone, perhaps you lovely people can let me have your experiences of loved ones with dementia taking to their beds and refusing to eat or drink or accept personal care. My view is that this is the beginning of the end though that could take some time, am I right? My lovely mum is 90 and has also recently become incontinent.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
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Hi everyone, perhaps you lovely people can let me have your experiences of loved ones with dementia taking to their beds and refusing to eat or drink or accept personal care. My view is that this is the beginning of the end though that could take some time, am I right? My lovely mum is 90 and has also recently become incontinent.

yes my mum did this it was a UTI low grade infection, might be worth getting that checked out even if just to rule it out.
 

Suzy C

Registered User
Sep 16, 2019
63
0
yes my mum did this it was a UTI low grade infection, might be worth getting that checked out even if just to rule it out.
Thank you but all come back clear. I guess we have just got to the stage where she has become incontinent. I sometimes think this is the most exhausting of all as I went through it with my husband.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
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Thank you but all come back clear. I guess we have just got to the stage where she has become incontinent. I sometimes think this is the most exhausting of all as I went through it with my husband.

I persisted with getting mum put on a prophylactic antibiotic & it has improved her urine incontinence
 

Fullticket

Registered User
Apr 19, 2016
486
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Chard, Somerset
Mum took to her bed more and more as time went on. Weekdays she had clubs and day care to go to so getting her up and washed was a challenge but during the week and eventually with the help of carers we managed OK. Weekends I initially would try to get her up by tennish but she was clearly unhappy about this (carers were angels of course, I was the devil incarnate - I think we have all been there!). Eventually we left her to it and she would spend either one or two days in bed - mainly asleep - and was, frankly, none the wiser about the passing of days and seemed quite content. Obviously we kept her hydrated and she did accept small amounts of food (yogurt, ice cream and cake mainly). Yes, I suppose we could have insisted she got up but then she would have been unhappy and cross, and so would I. Guilt? Yes but after a while I just thought you have to go with the flow.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
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Mum took to her bed more and more as time went on. Weekdays she had clubs and day care to go to so getting her up and washed was a challenge but during the week and eventually with the help of carers we managed OK. Weekends I initially would try to get her up by tennish but she was clearly unhappy about this (carers were angels of course, I was the devil incarnate - I think we have all been there!). Eventually we left her to it and she would spend either one or two days in bed - mainly asleep - and was, frankly, none the wiser about the passing of days and seemed quite content. Obviously we kept her hydrated and she did accept small amounts of food (yogurt, ice cream and cake mainly). Yes, I suppose we could have insisted she got up but then she would have been unhappy and cross, and so would I. Guilt? Yes but after a while I just thought you have to go with the flow.

actually I believe that this is the natural progression of end of life. I expect many will disagree with me , but we don’t make cancer patients repeatedly do what they don’t want to do ; why then do that with another terminal illness?

yes welfare plays a part but extending a life at any cost because the home is paid to care seems wrong. If this was seen from the same perspective as palliative care for cancer the treatment would be different.

in both diseases it’s a terminal diagnosis & the outcome is the same.
 

Duggies-girl

Registered User
Sep 6, 2017
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Dad has alzheimers and cancer but I still get him up whether it be 10 am or 2 pm, he still eats so he's not on his way out yet, he just likes his bed.

He commented the other day that I could nag the dead out of their beds.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
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Dad has alzheimers and cancer but I still get him up whether it be 10 am or 2 pm, he still eats so he's not on his way out yet, he just likes his bed.

He commented the other day that I could nag the dead out of their beds.
NIce!;)
Glad to know that you are appreciated o_O
 

Fullticket

Registered User
Apr 19, 2016
486
0
Chard, Somerset
actually I believe that this is the natural progression of end of life. I expect many will disagree with me , but we don’t make cancer patients repeatedly do what they don’t want to do ; why then do that with another terminal illness?

yes welfare plays a part but extending a life at any cost because the home is paid to care seems wrong. If this was seen from the same perspective as palliative care for cancer the treatment would be different.

in both diseases it’s a terminal diagnosis & the outcome is the same.

I don't disagree at all Desperateof Devon, I too think it is a natural progression although I know many people will disagree. If she had been on her own I am sure mum would have taken to her bed and died three years before she did. Fortunately I had a GP who was realistic. The first visit, after we had moved from London, mum had taken to her bed and I was asked if this staying in bed was normal and what did I want to do (and what did I think mum wanted). Initially I was shocked as I didn't think she was nearly ready to go but after thinking about it it did help me to weigh up mum's feelings against my feelings and her quality of life. Several hospital admissions for rehydration later she did succumb to a physical problem that the Alzheimer's was masking. At about that time I think mum was ready anyway; there was nothing behind her eyes and she had lost her dignity, so we chose not to agree to an operation and just let her go. Yes, I feel guilty that I missed the seriousness of the physical illness, but then so did the GP and the hospital for four days. Then she had a stroke while in hospital and her body just gave up and she slipped away after two weeks. I could have wished that her life had not ended quite so quickly but I think that is a normal reaction to sudden change and the 'what ifs' we all succumb to. There was a lot more I felt I could have said to her but with the dementia she would not have remembered anyway.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
I don't disagree at all Desperateof Devon, I too think it is a natural progression although I know many people will disagree. If she had been on her own I am sure mum would have taken to her bed and died three years before she did. Fortunately I had a GP who was realistic. The first visit, after we had moved from London, mum had taken to her bed and I was asked if this staying in bed was normal and what did I want to do (and what did I think mum wanted). Initially I was shocked as I didn't think she was nearly ready to go but after thinking about it it did help me to weigh up mum's feelings against my feelings and her quality of life. Several hospital admissions for rehydration later she did succumb to a physical problem that the Alzheimer's was masking. At about that time I think mum was ready anyway; there was nothing behind her eyes and she had lost her dignity, so we chose not to agree to an operation and just let her go. Yes, I feel guilty that I missed the seriousness of the physical illness, but then so did the GP and the hospital for four days. Then she had a stroke while in hospital and her body just gave up and she slipped away after two weeks. I could have wished that her life had not ended quite so quickly but I think that is a normal reaction to sudden change and the 'what ifs' we all succumb to. There was a lot more I felt I could have said to her but with the dementia she would not have remembered anyway.
Bless you - No what ifs allowed ! xxx