Advanced Dementia and Personal Awareness

[CathT]

My mum was diagnosed with Vas Dem/Az two years ago but was showing symptoms for a couple of years before. A few months after diagnos she had a steep mental decline which resulted in her not recognising my dad her husband of 45 years. She became agressive when her attempts to "go home" were thwarted and was sectioned six months later to an assessment unit. Within months her physical health declined dramatically and she became incontinent and developed a really bad stoop which makes it difficult for her to get into bed and sit comfortably. She can still walk ok but has developed a recurring pressure sore on her coccyx which is proving difficult to treat. With all this in mind it was decided mum's care needs could be better met in residential care. However, dad and I feel very guilty about this but accept that we would find it difficult to cope with her at home.

Anyhow, over recent weeks mum has shown signs of being aware of her condition and has said "I wish I could go back to my old life" and "I would give anything to be normal again". These sentiments are expressed succinctly and not the usual muddle of words which make up her usual sentences. She also shows signs of sadness when trying to express herself and I think she realises that things are not the way they should be. I dont think she recognises dad and me most of the time but is comfortable in our presence and talks about me to me but not realising I am in fact her daughter.

The thing that worries me is mum being scared and recognising her plight. It breaks my heart to think of this and feel terribly guilty about leaving her at the care home. The only thing I have taken comfort with in dealing with dementia is thinking that whatever horrible things happen to and around mum is that she very quickly forgets them.

I wonder if others have had experience of their loved ones wishing "to be normal again".

My poor mum's quality of life is so poor and I just wish she was oblivious to what is happening to her.

I just hate this terrible disease and the torment it creates.

 

[bunnies]

I'm not sure if my aunt felt she wanted to be normal again, but I recognise some of the things you are describing in your post. I am sure that even in the advanced stages she had moments of semi-lucidity - there were odd occasions when she reacted to things just as she would have done before the illness. The other thing that I have always wondered about was - she was always a very practical and independent person, and lived in the same house for 50 years, and so when we felt it was necessary for her to go into residential care of course we felt really bad and worried how she would react. As it turned out, she reacted wholly positively. By this stage she was barely talking, but I kind of had the feeling almost that she knew that she needed some other kind of help, as if moving to the care home she was aware of at some level, and was almost relieved we had made the decision. I can't be sure of this - it was just a feeling I had.
So I understand your fear that your mother is aware, but it might have a positive side as well...

 

[linpin]

i do understand were you are coming from as i have the same with my father in law he was diagnosed five years ago and just before Christmas things hit an all time low, he was sectioned in January and has rapidly gone down since then. Both myself and my husband are feeling extremely guilty having to watch this but we both feel he is in the right place for his own safety. My father in law is the same as you describe and said to me the other day that he was uncomfortable having to wear these pads which shocked me as i thought he did not know what was happening! he also does not know his own son at times but at the same time he does have awareness at times to what is going on, i am sure once you have your mum in a care home she will settle and you can both enjoy life again.

 

[catbells]

I too am going thro a similar thing. Mum now in latter stages of cardio vascular dementia and has been in the dementia unit now for alsmot 4 months now declining rapidly, but occasionally when she talks it is quite profound. Today she said "she was waiting fo time to pass and it was difficult". She sees people outside and people going out and sometimes talks of going to Grandma, which is strange because she was not brought up with her family. She is 83yrs old and it gives me a jolt when these sensible words come out, not in her usual muddled way. I visit her daily for about an hour depends how she is. She is very quite, calm and smiley -double intcontinent, looks awful without her teeth, and her hair is straight as she won`t allow the hairdresser to do her hair, she has lost 2 stone since moving because she walks and not eating and getting her to drink can be difficult, but through this time, I have kept reassuring her "only the best for Mum", apologising for moving her "because heather needed help to look after you", she nods, when walking she thinks I`m going to take her out so leaving her sometimes has to be planned with the help of the carers to distract her. I have learned to accept her comments and I can only reassure her that she is safe, well cared for. Although she seemed clear with her speech today, she has now taken to humming as if talking , but I wonder if this is a little aggitation/inpatience on her behalf not being in control.
It does upset me because I can`t control what is happening and feel a little guilty but I talk to myself reassuring myself I couldn`t have coped with her at home at this stage.
I`m with you friend on this When she is clear I think ONG she`s come back - then within mins she is blank again - what a rollercoaster, but we find ways to cope.
Love Heather xx