How to protect my kids from this experience if I become ill?

[Jayenne]

I wonder what others have put in place or would put in place for themselves after having had the experience of caring for someone with dementia? My mother has early Alzheimers and her personality changes and her sadness that her family won't look after her or even love her in her old age is devastating both to her and to us who love her desperately. She is in a care home which she hates and hopefully will soon be able to move from but she wants to live with one of us or back in her old home.

I really want to protect my own children from this heartache as much as possible and am adamant that I wouldn't ever want to live (and die) with them, have always said I must go into a care home and don't want to die even in my own home. Hospital is fine. But how do I put something like this into a document to ensure that my wishes are carried out and at some stage I don't try and guilt trip my kids into caring for me beyond what is sensible? The POA goes part way and my mother has a living will which deals with end of life, but it's the subtler stuff that so many of us go through, especially in the early stages, that I want to protect my kids from. I thought maybe a letter setting out my wishes if I were to get Alzheimers or any other condition but wondered if others have done anything similar?

Interested to hear your thoughts. Thanks

J

 

[Starting on a journey]

Not done but I am thinking about a
simple personal letter to each child. Explaining what it’s like (although they have a good idea) and telling them what to ignore, even if they want to look after me. Use my money for carers, put me in respite, go on holiday, work, go out to dinner, put me in a home if you can’t cope. That sort of thing really and ask them to read it now and ask questions, so that I can answer them now and not when I am perhaps a little muddled!!

 

[jaymor]

I have spoken to both my children about this. I would want to stay in my own home until things became difficult for me. Once they have concerns, despite what I may be saying, then it’s a home for me. I never want to hear them say they put me in a home. My husband went into a nursing home, I didn’t put him there, he went there to get the level of care he needed and deserved. As long as my two put as much effort into finding the right home for me as we did for their Dad then that’s all I want.

I know I might say differently when the the time comes but this decision has been made whilst I can think straight and I fully understand the need for care at the right time. I have a wonderful relationship with my children and I’d hate that to be tainted by them having to care for me when I’m showing no love or understanding of what I am doing and how it is affecting them. It’s not an easy thing to talk about but if you know what you want should you need care, then it’s best to talk it over.

 

[Alex54]

I look after my wife who has advanced Alzheimer's, against the advice of the professionals who would prefer a nursing home. Would I want my daughter to look after me if I got dementia, definitely not! However, in the same breath, I would not take that decision away from her, it is something that cannot be done until the time actually comes.

 

[Jayenne]

Thank you - belatedly - sorry - for your responses. Generally along the lines I was thinking of. If I can protect my children from what I'm going through now, especially the emotional impact which takes over my whole life, then that's what I'll do.

The stress of listening to Mum's distress, the worry that I'm making the wrong decisions ( I so often have and looking back I can't think how I got it so wrong) and the love I feel for her when there's nothing I can do about things, is constant and pulls me down all the time.

I will have a long hard think and draft a letter. I can't have worries about me take over their lives too. Thanks again

J