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Mum with Alzheimers - I'm feeling very detached and guilty

(11 Posts)
sadaboutmum Sun 29-Jul-12 11:26:36

OP I think your reaction is incredibly normal. My mum has vascular dementia. I loved her dearly and she was a fabulous Mum but I now find it almost impossible to be in the same room as her. Every day I wake up and hope that this is the day that she is going to die. I deal with it by talking about it - a lot - and I am very honest with others (not her!) about how I feel. People are quite often very shocked but I believe passionately that we should not hide from the horror of dementia. I am lucky in that I am able to share a lot of the emotion with my sister who feels the same as I do.

amillionyears Sun 22-Jul-12 20:44:04

My dad had a long drawn out illness,not alzheimers,and a family member also said that she had done her grieving 5 years before he actually died.
So when he did die,she did not grieve as much as the rest of us,because she said she had already done it.
There is no need to feel guilty about how you feel.

Heartstart Tue 17-Jul-12 23:21:14

Hi my dad is at earlier stages and it still hurts like mad. Today my mum who cares was admitted to hospital with more heart problems and so I am at their house staying over because dad can't be left's all so sad and cruel.. There is no right way to deal with it.

Emphaticmaybe Sun 15-Jul-12 14:19:21

Thank you for all your responses.

Pinkappleby - I really identify with the anger you mentioned - I know it is completely irrational but I am angry at mum for having this disease.

CMOTDibbler- I also have no close friends going through this and as my mum has the disease fairly young I'm still in the middle of life with dependent children which increases my guilt as I feel i'm not doing enough.

CleopatrasAsp - ' the long goodbye' is so true and the guilt of wishing it could just end is hard.

Tartyflette - yes when my mum has been physically ill I have often thought it would be better if this was the end, instead of the long drawn-out nightmare that Alzheimers is, and again this doubles the guilt.

Thank you again - it helps to know others feel the same.

tartyflette Sat 14-Jul-12 01:04:38

My mum has had dementia for eight years now. The person she was has all but gone, apart from brief flashes of her old personality from time to time, And even they are getting fewer and fewer. She has other complex medical needs too and is in a nursing home but the dramas just go on and on. Sometimes I think it would have been far better for her to have had a stroke or heart attack before she got to this stage. She is just a husk. She has very little quality of life apart from still enjoying food (sometimes) and even that is diminishing.
I feel guilty about her most of the time.

CleopatrasAsp Sat 14-Jul-12 00:14:20

I think the way you are feeling is very natural Emphatic, they call Alzheimers 'the long goodbye' and I think that description is so true. It's such an awful disease.

CMOTDibbler Sun 08-Jul-12 21:25:09

I once said to someone that it felt like everyday my mum died a little more, and when her body gives up, everything that was her will have long gone.

My mums dementia first affected her speech and language, so I can't even talk to her about the distant past which is very hard.

I try to remember the good parts, and talking to ds (who has never known her 'normal') has been good for that. I tell him stories of my childhood, and family, and that helps me reconnect.

Coming to this area helps me too- I feel very alone in RL as none of my friends have parents who have dementia or are frail, and they'd rather not think about that either !

pinkappleby Fri 06-Jul-12 16:39:26

I recognise your feelings but I can remember mum if I try to recreate scenes from when I was younger e.g. remember time at uni then I can remember what she was like when I talked to her on the phone. Objects help too. The other day I was looking through her cupboards for something and found 2 new blankets that were obviously meant for my DS and DD packed in with her camping stuff and that made me remember how much she was excited when they were born and all the things she planned to do with them. I found her spider vein cream in my drawer the other day and remembered her telling me how she was concerned about my veins when I was pregnant and lent me the cream (saying she wanted it back).

Sometimes I feel angry at her for what is happening with my dad's life but I realise this is unfair.

I don't think I will grieve 'properly' when she dies, I have done that already and my grief will be at the unfairness and loss of what might have been, particuarly my kids not having the nan they should have.

Emphaticmaybe Fri 06-Jul-12 16:29:58

Thank you so much for your post neversaydie, sorry for the delay in response - I've been away for a couple of days.

It's reassuring to know I'm not alone in feeling like this. The grieving little by little strikes a cord and in some respects I said goodbye to my mum 5 years ago.

How lovely for you that on your trip to Asia you were able to reconnect to your father through your shared interests. I hope when mum passes away I will be able to do the same.

Thanks again for sharing your thoughts.

neversaydie Wed 04-Jul-12 20:36:43

Yes, I understand. My father had vascular dementia and was also physically very frail - he had to be moved using a hoist for the last 4 years of his life. He died this January, having been ill for 9 years. When he first collapsed, I was devastated and in floods of tears. Over the years we had crisis after crisis. My mother looked after him (with help from carers) right to the end, but I remember driving South after the last crisis but one shouting to the world 'Let the poor old devil go!' But no - they patched him up and he struggled on for another 2 and a half years. His needs completely took over my mother's life.

By the end I was numb. For his final hospital admission, I was able to go straight to the hospital to support my Mum. We sat in A&E, waiting for someone to tell us what had happened this time (it was his second pulmonary embolism). We were chatting and calm - quite unlike the stressed families all around us. I did wonder at the time what the staff made of us.

Dad finally went out in style, with Mum, me and my two sisters sharing a 24 hour a day vigil by his hospital bed for the last 10 days of his life. (He was in a coma, and oblivious, but it was what Mum wanted.) By the end, I was too strung out to cry, or even to grieve very much.

But last month I was travelling in Asia, and went up into the hills. It was my first visit to the area, and I was fascinated by the land use and plant species I could see - an interest I got from him, along with our shared love of Asia. And I realised how much he would have enjoyed the day.

I think with these long drawn out terminal conditions, you do your grieving little by little as the illness develops and gets worse. Add to that the continual low grade stress you are under, and it seems to me that pretty much any reaction will be completely normal.

Emphaticmaybe Wed 04-Jul-12 11:06:49

My mum has been diagnosed for 3 years now but has been ill for 8 years in total (realised in retrospect.)

I feel so sad about the whole situation and it's heart wrenching to watch my dad trying to cope, but I feel very little for my mum. The person she was has been so completely worn away that apart from not wanting her to be in any distress, all my feelings of love and sympathy are directed at my dad. Do other people feel like this? Does it change and will I be able to remember her as the person she was and grieve properly when she passes away?

She was a great mum for 60 years and a lovely person but I just can't seem to recreate how I felt about her.

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