New to the group, my mum has advanced PD

Hello, my mum (85) has had PD diagnosed 15 years ago, she has now moved into the advanced stage and has had to move to a nursing home. She is completely disabled and has to be hoisted in and out of bed, commode etc. Her mind is fairly sharp but she is extremely angry and anxious and very depressed, we lost my dad last year and she is really struggling mentally without him. She tells
Me every day that she just wants to die and pleads with me to help her.
The nursing home staff are good with all the practical things but don’t seem to have the time or resources to give mum the mental attention and comfort she craves.
I am still
Trying to work part time, also helping my family with young grandchildren, as well as being in to see mum every day.
How do I manage when she begs me to help her die.?
Any comments would be really helpful, thank you.

Hello Valerie,
and welcome to the forum.
I’m really sorry to hear that you and your mum are having such a rough time at the moment. It is often understated how difficult it is to support people with Parkinson’s.
I hope other forum members can support you by sharing their experience and advice, but remember that the helpline is also there for you, not only to give information and advice, but also for emotional support and to get things off your chest. our helpline is available to you on 0808 800 0303, Monday-Friday: 9am-7pm or you can email [email protected].

Best wishes,
Federica
(Moderation Team)

.Hello valerie1
What a heartbreaking situation you find yourself in and I can only imagine how hard it is to visit your mother knowing that she will again be asking you to help her die

I am no expert in such matters and I am certainly no doctor but I can try and offer a perspective which could perhaps change your thinking a little bit and allow you to cope with an awful situation where there is no light at the end of the tunnel.

The first thing that stands out from your post is that your mother has lost an awful lot in maybe a very short space of time - her husband, her home and now she has what probably feels like the final indignity, her independence. It would be enough to make anybody depressed and when a person is depressed it is very difficult to see any light or any hope and all too easy to get caught up in a downward spiral. Has she been seen by her GP to maybe get help in managing her depression. I know people worry about becoming addicted but a short course can be enough to sufficiently raise the individual’s mood and allow them to begin to consider their situation and things may not seem so bleak. Or perhaps there is someone in the home or can they get someone to come and talk to her?

It’s not easy to know what to say when someone is asking you to help them die every time you visit, and it will probably be a pressure on you because you are probably waiting for it to come up again. I think you have to try and box clever and the sort of approach you take depends on the relationship you have and the type of people you are and obviously I don’t know that, but the basic premise is to try and get her to talk and acknowledge what has happened to her - my feeling is she is going through what is effectively a bereavement process for all she has lost and needs help to see an alternative to her wish to die.

For you that means making a judgement call on the best way forward given your relationship and what you can manage. The bottom line is that she is putting you in an impossible situation, it’s awful for you to see her so unhappy
but you can’t actually do what she says she wants. Somehow she needs to understand that and perhaps it is best just said, gently but to the point, but that would be for you to decide.

Finally, don’t beat yourself up. You are juggling a lot of balls and doing the best you can, that’s all you can do.

I’m not sure any of this will help much and it may seem way off the mark to you, but maybe a little piece of something I’ve written will help a bit. It is only my view based on your post but hope it makes some sort of sense to you.
Best wishes
Tot

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Thank you so much Tot, it’s very comforting to read your reply. I do have a very close and honest relationship with mum, or I always have done until recently, I often feel these days that mum is not the same person she was so it’s hard to judge it. I am going to try your suggestion to talk openly about me not being able to help her die and try and talk more about the losses she is coping with.
I have contacted her PD specialist nurse to ask about meds to help, I know the nursing home staff and GP won’t give anything without consulting re her PD meds, i understand it’s a difficult balance.
Thank you so much for taking the time to read and reply.
I really appreciate that x

Thank you so much, it’s a great comfort to feel part of this forum and not so alone.
Best wishes to all on here
Valerie
X

Hello Valerie1
I’m glad you found my reply helpful and in some ways you are right your mother has changed but grief, if that is at least part of the problem can be addressed with time an care. I am conscious it may be very hard and upsetting for you to initiate such conversations and it may be easier for you to write a letter for her to read or for you to read to her. That way you can take your time and get the words right.
Please do let us know how you are getting on.
Tot

1 Like

Hello Valerie1
I just wondered how you were getting on.
Thinking of you.
Tot