My mum is 91 and has advanced Parkinson’s living with dementia and lives in a carehome , she lives daily with bad hallucinations and is tormented by these, and sleeps most of days between these episodes , she no longer has any meds as she says doesn’t want them anymore ,when she is in a bad way she does not eat or drink so she has lost weight, the dr said to respect her wishes and she is now on palliative care, I work in the carehome as well and most days she shouts at me , I know this is the dementia talking and progressing , I can’t seem to get through to her now, my extended family have not been in to see her much and it’s me mostly who is there, I have spoken to them about her being on palliative care and to see her as much as they can.she has good and not so good days, I do miss her but also know I’m doing all I can for her even at a distance, I’m finding it very hard and not sure being there day in day out is right but know I need to be near as well .I’m an activities assistant so I can move onto another home , these are just thoughts in my head which I feel guilty about. Thank you for reading x
Hi Tjf63,
Firstly, I am sorry to read what you are going through.
I do understand the reaction of your extended family, I do not condone it but do understand it.
It would seem as if they know your mom would not recognize them, if they do come, and they would simply be leaving themselves open to abuse, as are you.
She does seem be lucid at times but those times seem to be becoming more and more infrequent.
It may seem to be cruel but I am glad she has decided to go off her meds, it would seem as if they are simply prolonging her misery and being no help at all.
I hope this helped, if only a little.
Thank you Clive for your honest and thoughtful reply
She is still with us and like you said her good days are becoming less
It’s such a hard journey for us but nothing what I am feeling compares with my mums anguish
I have very good friends at the Carehome where I work who take over when I’m there when My mum becomes distressed
Hello Tjf63
I am sorry that I missed your original post and there is little I can say that will help much, but I wanted to reply given the very difficult circumstances you are facing. It must be heartbreaking to see your mother having such a difficult time with her advanced stage Parkinson’s but I am sure somewhere deep inside she appreciates that you respect her decision to stop her meds which seem only to exacerbate the problems she is having.
I know you were wondering whether it was best for you to continue working in the same care home in which your mother lives, and I am assuming from your reply you have not changed jobs. However hard it is for your mother, you can only do what feels right to you so that at the end of the day, when your mother is at peace and no longer struggling with Parkinson’s, you are able to tell yourself and take comfort from knowing that you did the best you could and that is enough. I also think that the support you have at the care home who will take over from you if needs be, is worth much and so you need to think very carefully before considering a move.
I can appreciate that it is not easy for you to see your extended family stay away, but they can only do what feels right to them, exactly the same as you are doing. You work in a care home, you will be only too well aware how some people struggle with their loved one who is no longer the person they knew, they don’t know what to do with unexpected behaviours or the verbal abuse and more likely can’t handle the one sided conversations that become common in such circumstances and which are so difficult to maintain. You can only hope that they too are comfortable with the decisions they have made and don’t regret it at a later date.
There are I am sure days when it all feels too much and you just want to stop the world and get off, days when you could weep with fatigue and wonder how much longer you can go on; and then there will be days when you catch glimpses of your mum as she was - it is those days that will keep you going and the memories of those days that will bring you comfort when she has passed.
Remember you are doing the best that you can, that is all you can do and it will be enough.
Tot
If she lacks the capacity to make her own decisions about medication I have some concern as to whether a best interests decision should be made for her.