Daughter is pd sufferer

I am the daughter and carer for my mum who is 86 and has had pd for 14 years.
I know she has done reasonably well until now and has managed to live a good life with my help 7 days a week and with the help of carers.
Her latest pd episode had left her in hospital for 2 weeks but they can see no real reason for the sudden deterioration in her symptoms. I am really worried about her being discharged and that she won’t be able to cope alone even for short periods, and perhaps selfishly I’m worried about having to give up my whole life to caring…. I retired from teaching 2 weeks ago. I know she desperately doesn’t want to go into a care home ….but I’m so afraid and the feeling of guilt is overwhelming if I have to make this decision
I love my mum to bits but I’m torn between caring for her and having a life of my own too with my very patient husband.

Hi alih,
I feel for you on this one because I’m in a similar boat! I am 41 and had to give up work 3 years ago to become a full time carer for my husband who has Parkinsons he is 60 this year…For some reason it sort of crept up on me - Ive ended up caring for my dad too?? It started with taking him to doctors appointments and its snowballed from there!
He has a huge amount of health complications and really cant be on his own in the house he has, but he refuses point blank to go into a home ( which I get) but even so the stress it puts on you is huge.
Have you spoken to social services? If you haven’t this would be my absolute first port of call. Ask for a home assessment and they will come out and totally assess your mom, they can install things like Lifeline so she will have a “panic button” on her at all times that is linked to an operator, you can sort things like a wetroom, adjustable beds, grab rails, stair lifts the whole lot…it doesn’t solve your whole problem but it may buy you some time…
An avenue Ive gone down with my dad is assisted living and thats gone down better than a care home but even so it is so hard because he is sooooooooo stubborn!
Maybe you should try talking to your mom, it certainly helped when I explained that I cannot look after him full time as I have my husband who needs my help and I deserve a life too!
Shes your mom at the end of the day, she loves you as much as you love her so please don’t feel guilty for wanting to guard your own life.
I do hope you can convince your mom that you are trying to do what’s best for her
I wish you all the very best x

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Thank you for your reply…. And all your advice. Fortunately mum already lives in an assisted living flat with an alarm and hospital bed etc. We are even in regular contact with hospice at home as she has an incurable illness. But I’m still wondering if she is going to need full time care….only time will tell it may take some time for her to recover. I feel guilty for neglecting my husband and I also have new baby twin granddaughters in Cornwall who I want to visit more often so I feel torn…. Hopefully she will decide when she feels she can’t cope alone.

Oh wow! That’s a little different then. Hmmm this is a hard one because I do understand completely…
Have you spoken to her current carers at the assisted living place? they may be able to offer some advice?
it sounds to me as though you have everything in place- there is not much more you can do right now…so like you say, all you can do is wait and see exactly how the situation pans out. If she continues to deteriorate or falls again then maybe that’s when you look at a different path.

I hope you can find a solution, I really do x

Hello Alih

Since reading your post I have been pondering how best to reply. I then saw Beth13’s excellent reply and yours to that, which again left me wondering if I could write anything that might help. To be honest, I’m not sure I can but maybe I can offer a view which may help you unpick what seems to me to be several conflicting issues and perhaps be in a position to make some decisions.

  • Your role as a carer. Many carers take on the role of caring without really giving it much thought. Life happens and they find themselves in that position by default. For many the early days aren’t too bad because, for eg, the person can still manage quite well but as time goes on that can change and the relentless and exhausting reality of what caring means and its impact becomes evermore evident. Many find themselves in a situation where they are torn between carrying on caring for someone they love and hating that very same thing.
  • Guilt, as you are recognising, plays a large part in making any decisions about the best way forward extremely difficult if not impossible. It is a powerful voice and comes with a lot of emotion attached.
  • You have been able to do what many can’t and that is acknowledge you want a life that is more than just a carer’s role, that you have a husband and grandchildren that are as much part of your life as your mother is. That is not selfish, it is honest. There are some marvellous people who seem to thrive on being a carer and wouldn’t understand your difficulties at all. There will be many more who will easily identify with you.
  • I understand your concerns about your mother’s future but maybe you can look at it in a slightly different way. If I am reading your post correctly it is not clear how well your mother may recover. It seems to me that the key point will be the discharge process. The hospital should and hopefully will take on board all her circumstances including the help she currently has from yourself and others. If you are of the mind that the help you give your mother now is the maximum you can give - and you shouldn’t feel a need to explain or justify that - you should make sure they are aware of that; there is too often an assumption that families will just pick up the slack. Similarly if you wish to reduce your input they need to know that too.
  • I know your mother has no wish to go into a care home but it is not unknown for someone to be discharged from hospital and move into a residential facility for a few weeks to continue their recovery, regain their skills and so on before returning home. If this is an option it is worth giving it serious consideration because it would give you a breathing space, a bit of time to find out how your mother’s recovery may progress.
  • I would agree with Beth13, assuming your mother is up to it of course, I think you do need to have an honest conversation with your mother about her future and yours. However I think it would be helpful if you can speak to the hospital first to find out how they considering discharge, you can then speak to your mum fully informed.
  • Your mum sounds pretty well set up at home and if that’s where she wants to be and you have said what you can do, it’s for the hospital to manage her safe discharge and arrange an appropriate package.

It won’t necessarily be easy but I think you may need to stand your ground and be clear you can’t do more than you are doing in terms of caring if you are going to have a life too - and just to put that in context, yes you have a husband and grandchildren who you want to spend time with but equally think how lovely it would be to visit your mum as her daughter not her carer sometimes.

As I said I’m not sure this will help much but perhaps you will be able to think about things from a different perspective.

Good luck I hope things work out for you and your mum.

Tot

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Hi I just read this and can not answer right now but will do as soon as i can. I will quickly say you are an amazing person and everything has a way of working out.
Esme x

I was thinking about what you said in your post and hear your distress.
These are of course just my thoughts, and story, and take what you need from them, they are given with love and kindness.
As mothers we bring our children into the world and to the best of our abilities, we guide them and let them fly. And it sounds to me your mum did an excellent job with you.
I’m 61 and have PD, and look at my adult children, I do not want to stop their flight to look after me. I do however wish them to make sure I am well cared for when the time is right.
Condensing a long story…. I was carer for my son who had complex needs. Towards the end of his time on earth, my mother was diagnosed with cancer. I found it challenging to be two places at once. And I also other sons and grandchildren who needed me.
So, I felt guilty if I did and guilty if I did not!
You would not abandoning her or putting your needs first. Your mum knows you love her and knows you will make sure her needs are met.
You have duty of care to yourself first my dear. Because if you stretch yourself to far, everyone will suffer. You must keep the balance. And with balance comes strength and courage. And you will instil this, in those around you, including you mum. I know with what ever you decide to do, your protective wing over your mum will always be there. And that is what she needs more than anything. As I say these just my thoughts and they are with you right now
Esme x

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