alzheimer's guilt

M_M

Registered User
Apr 12, 2013
12
Hi, My mum has been diagnosed two years ago with Alzheimer. It has been an incredibly painful journey leading up to her diagnoses. My parents live in Italy, where i am from. My dad is now the main carer and both for him and me it has been a horrible process of loss .. and transformation. I thought we were on the way to cope better with the illness but its evolution, ups and downs are surprising and the pain does not seem to cease. My mum has never been a possessive woman and always respected my choice to move to the UK. Despite having lived here for the past 13 years, since she was diagnosed she has begun asking me constantly "when are you coming back?" It is heart breaking and as much as i would love to go back and be closer, they live in a small (touristy) village where there are no jobs... i feel so guilty being so far awat and so incredibly powerless ... i don't know what to do. :(
 

Christin

Registered User
Jun 29, 2009
5,038
Somerset
Hello M_M, welcome to talking point. I hope you find TP a great source of help and support. There are so many difficult decisions, often we have to take time and consider all options.

Best wishes to you all.
 

andrean

Registered User
Jul 5, 2011
88
hastings
Do you have siblings or are you the only child? I have some understanding of your situation, but from the other side; my mum has dementia (and dad is her main carer), and one of my sisters (I have 2 other siblings) lives in the USA.

The three of us who are here do as much as we can to help, within the limits of our own lives and families. My sister in the USA only visits once a year or less, so clearly cannot do much to help in practical terms. I feel ok about this; she made her decision to live there years ago, whilst mum was still young and fit, and obviously none of us could foresee mum's dementia and what a toll it would take on all of us.

I wouldn't expect my sister to move back; her life and family is there, and I accept that, and I think the rest of my family does too. However, she is really supportive of dad as far as she can be from afar, and is always ready to listen whenever I want to call her and sound off about the awfulness of it all.

I don't think you should feel guilty; your life is here. Your mother might be saying now that she'd like you to be closer to her, but it sounds as if she wouldn't have said that before her dementia came on, when she was obviously more rational than she is now. I know my mum, if asked, would say she'd like my sister to live close by, but she'd never have said that before her dementia; she knew that my sister's life was in the USA. I'm sure you do a lot in terms of being supportive of other family members who are caring for your mum, and are perhaps able to visit reasonably often.

One thing I've learnt in my journey with mum's dementia is that you can always feel guilty. Guilty about not spending enough time, guilty that your other elderly parent is shouldering the bulk of the burden, guilty about getting irritated with the person with dementia, guilty that you find looking after that person boring and frustrating.... In the end, I've just come to accept that whilst I might feel guilty sometimes, most of the time, I'm doing as much as I can within my own limits, and that's all anyone can ask of us. Don't feel bad, and remember that you have your own life to live as well.
 

M_M

Registered User
Apr 12, 2013
12
Thank you andrean

I appreciate it.
Yes i have two brothers who live relatively closer to mum and dad, but as much as they are present their relationship with mum is a bit different...i am the only girl. However, as in your case, my brothers (or dad for that matter) would never expect me to make such a choice, unless i wanted to...
When she was well, she never made an issue about my choice of residence..in fact she would have never asked me to 'go back'... It is something she has developed lately ... since her memory is not good anymore, even if i have left the day before she would ask 'when are coming to visit?'... Obviously she says as she would like to spend time with me, she is my mum....i guess it is only natural...

There is still a lot of work i need to do (within myself) to accept her illness .. and the loss - partly - of my mum.. as she used to be ..
 

end of my rope

Registered User
Feb 22, 2013
146
Hi sending you the warmest of hugs

Hi

everybody's experience of this dreadful disease is different however guilt does seem to be one of the few universal emotions.

I have done everything my mother wanted when she wanted for the last three years, including re-modelling my house so that she could live with me, re-locating her to my home then re-re-locating her back to where she lived and purchasing a private sheltered apartment for her. Yet in the last five days my mother decided that she doesn't want anything to do with me, never wants to see me again and vowed never to speak to me again she is disgusted by me because she had an hallucination in which she thinks that I refused to speak to her when she called me from hospital.

My point is that whatever you do may end up never being/doing enough to satisfy your mum (in her opinion) when she has only the fragile parts of a mind ravaged by dementia.

Take very good care of yourself, you are going to need all your strength and energy to even begin to cope with what is happening to your mum and you relationship with your mum.

best love
eomr
 

M_M

Registered User
Apr 12, 2013
12
Gosh eomr,
I understand what you mean....and you are right about gathering strength...
And energy....thank you for your words, I find sometimes my friends and partner do not really understand (or maybe I just don't express it well enough) my turmoil...
 

steffie60

Registered User
Jan 22, 2013
232
Hampshire
I would have to echo the thoughts of EndOfMyRope.
Hard as it is you have your life here and your parents have their life there.
Just as an opposite thought, how would it be if you moved back to Italy and your mother died a month later. It is possible.
Your mother never minded you moving to the UK when she was well, she gave you wings to fly the nest, if she were still well do you think she would be asking you to come home? Can you find any compromise in your situation? Would a visit back to Italy help?
Your mother will move on from this stage, if her condition is anything like my mother's VD it will change.
A difficult time for you, I hope you can find a path which will give you comfort.
 

M_M

Registered User
Apr 12, 2013
12
Hi steffie60,

I don't think my mum would ask me to go back was she not ill, she never did. I am beginning only now to appreciate how 'unstable' her condition is..that is it changes all the time..I agree that these late requests may not last, and also that me going back to Italy would not really solve the situation...realistically, I may also find a job somewhere that is also quite far from where they live. The rational part of me understands... I think I need to accept the scale of changes occurred...I try and visit at least once a month...I guess it is that feeling of powerlessness ...
Your words are great comfort. Thank you.
 

triumph25

Registered User
Apr 2, 2012
90
Forest of Dean
Guilt

Hi we all feel guilty in our situation. and as Andrean said we can feel guilty over any number of things. It will be with us in some form throughout our journey.

But as long as you love your mum and do the very best you can for her, then you have no need to feel guilty.