Fabulous but frustrating - how can I support PWP through imminent move?

I am child-free, employed, single, middle-aged with parent who’s coped alone with PD for over 10 yrs.

A close friend/paid carer visited 2 mornings pw, + 1 hr a wk from an agency.

My PWP is funny, independent, sociable and skilled at concealment. This has enabled me to avoid taking responsibility e.g. learning about PD, finance, housing etc. Long-term discussions about moving to care home have suddenly accelerated and we have fallen out. 2 wks ago we agreed move late July to coincide with my work leave. I explained I’d strongly prefer this as it allows me as only child to show that I love PWP in what may be one of the last practical ways. PWP’s now admitted that was just to suit me and needs to move June as tired and unsafe. Care home can do but I am very sad because they can’t do weekends and weekdays so it will be someone else who takes PWP from home to be among strangers.

I suggested we could manage with more agency care, me at weekends and friends have offered to bring meals up until July date, but it’s a ‘no’ from PWP.

Not much anyone can advise on this but before it happens, surely I should be consulting various agencies? E.g. GP, Parkinson’s Nurse, social services, financial advisor…

Am feeling thoroughly incompetent, neglectful, selfish with a goodly helping of whinging self-pity today!

I love them so much and want to help but am not allowed time off work and it’s a 60 hr wk. Not so good to read on the forum that PWPs do better at home than in care… Getting more care at home has been rejected, as has setting up home together with carers coming in during day. I thought I had it all sorted with my ‘clever summer break plan’ but it blew up in my face!

Not firing on all cylinders as I am a poor organiser (dyspraxia) of my own stuff, long-term depression and lost only sib in accident early this year, not sorted the probate yet…

Is there any advice on how to organise thoughts and actions and above all put parent first and stop thinking of self?!

Hi @onwater and welcome to the forum. I’m so sorry to hear how frustrated and stressed you are about this situation. You’ll find the members here very helpful and friendly and I’m sure they will want to share their viewpoints and experiences with you soon.

I hear you saying that you’re feeling like you’re not coping and that you feel you are doing less than you should, among other things. In fact, you are doing a lot and trying your hardest to deal with a huge challenge, but your parent has their own ideas too. Taking care of someone with Parkinson’s is an intensely physical and emotional task and that means that you do need to take care of yourself too. Please explore our website and this page especially. It will be helpful to learn about self care during this difficult time.

Don’t forget that our helpline can be a great source of support, even if it’s just to listen. You can reach them on 0808 800 0303.

Do take care,
Forum Moderation Team

Hello onwater, I see your post was written some days ago and I have only just picked it up so hopefully things have settled down a bit. I can only really echo Janice’s words. You’re doing the best you can in difficult circumstances and no-one can expect or ask any more of you nor can you ask any more of yourself.
If I may say so I don’t see it as your avoiding taking responsibility for learning about PD etc rather I think you gave your PWP the opportunity to live with it exactly as they wanted for over ten years and didn’t desert your PWP when the situation changed. I know you tried to plan it so that you were there for the move and this hasn’t worked out. It is not however the end of the world that someone else has to take PWP from home to be ‘among strangers.’ Care homes are skilled and experienced in settling in new residents so they won’t be strangers for long. Also just because you read PWP do better at home than in care homes doesn’t mean this is a given. It can work very well especially if you establish good relationships with the home.
I hope you are feeling a little less frazzled today and can see that things will or have sorted themselves out even if not quite as you would have preferred.
I wish you and your PWP all the best as this new chapter in your relationship starts

thank you Janice and Tot. I haven’t got back on the forum for a while but I am grateful for your reassurance and encouragement. Good news - I plucked up my courage and asked for cover for the move day, since I realised ‘don’t ask, don’t get’ and also that family life is so much more important than work, this is a major event I’ll live with forever now after all work pressures are forgotten!
So I was able to stay over with PWP, deliver them along with friends’ help to care home on this very hot day, I think we were both glad of that. Of course a few scratchy moments, but they’re comfortable and although mentally much more alert that any of the other very elderly residents, may find friends and at least will be more SAFE and monitored. I have reiterated that if they don’t like it, other solutions are possible, but I think the strain of running a house and living in fear of falls have left their mark. So nice to hear them ordering breakfast and being told, ‘just ring the call button for the night staff, they will help you any time, that’s what they’re for!’. Looking on the bright side, we have some time before selling/letting PWP’s home to sort out and talk about stuff, and PWP can pop back with me to do this, have a drink in garden, and gradually detach and deepen roots in new place.

So who knows, we may have another couple of healthy years ahead when we can enjoy each others’ company without the carer aspect being so prominent. We are a very fortunate family in this regard and thought it’s easy for me to say this who doesn’t have to live with this crushing disease myself, I think we both feel the same.

Thanks for your support.

Hello onwater, it was lovely to wake up to your post this morning and hear that things had gone better than you probably dared hope when you wrote your original post. Well done to you too for being pro active and asking for cover for move day.
Best wishes to you and your PWP, I hope the move proves to be positive and successful for you both.

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Hello onwater
Just wondered how things were going now that it’s been a few weeks since the move. I do hope that things are settling down a bit and there haven’t been too many teething problems. It would have meant big changes for you all and emotions can run wild at such times so do hope you are not finding it too hard

Thank you Tot.
I’ve been over every weekend to see how she’s doing. It’s v exhausting because although she is lovely and seems incapable of complaining about a thing, she is a busy person and that’s now all done by proxy (me or others!). The staff seem great and have made efforts to team her up with co-residents who are more mentally alert. The sad thing is that there’s no specialist care homes - so a person with a physical disability (admittedly elderly) is living in a household with people who are mainly unresponsive and sleepy.

However, on the bright side - she’s had umpteen visitors from her friendship group, and of course out with me and others. There are more than one social spaces she can sit in as well as her room, and she has her laptop up and running.

Seeing her old home without her caused me a few tearful hours. So many family events, good and bad, took place there. Her own mother died there, and my dad had his final illness there. But as we prune out unwanted objects and decide where others will go, it becomes less of a personal space and so we are detatching. I’ve said many times that if she doesn’t like the new place, she can move ‘home’ and we will seek another solution to the safety and ability issues. She doesn’t seem that bothered and it’s all for the best if she adapts. I am very happy that if she doesn’t answer her mobile it’s because she’s busy, not on the floor!

I think we all have to face stepping up in late middle age to the next in line for decline and mortality, but it is healthy to think about it and adjust, not to brush it under the carpet. Events have made me dwell on what I need to develop in my life so I have some emotional support when she is gone, I think it’s been a wake-up call.

I hope your situation is at least stable and you are not alone. Thanks for your interest.

Hello onwater
I would call that a very positive start and given how you were feeling when you wrote your original post, I think much has changed and is changing for you but that you are managing it all more positively with guilt no longer the dominant emotion.

I think you make a very valid point that there comes a time in your life when realisation dawns that mortality is part of life but it is not an area most like to think about. Although Parkinson’s is not in itself life shortening it brings with it, as do many other conditions, an uncertain future except for the fact that it will progress over time. The other side of the coin however, is that for many with Parkinson’s living in the present becomes the important thing, valuing today makes one much more appreciative of life - stopping to smell the roses if you like instead of always planning ahead and missing today. That is very much in keeping with how I manage my own Parkinson’s, being positive is very important to me, not always easy, but as I have said numerous times on the forum it is the strongest tool I have at my disposal. I was diagnosed in 2009 and obviously I have had some deterioration in that time but I am still able to live happily on my own with minimal help, I have fantastic neighbours and very supportive family and friends and I am fortunate to be happy with my own company. I fill my time with a variety of hobbies and am quite a regular contributor to the forum not only to offer support where I think I might be of some small help but also because it makes me feel useful, that I have something to offer if only in a small way. Some time ago I wrote a poem that included the line ‘I have Parkinson’s, it doesn’t have me’ and it is what I think. I would obviously prefer not to have it but since I do I never give it top billing - that’s always I am Tot first and foremost and I happen to have Parkinson’s. I can honestly say to you that even with Parkinson’s throwing what it will at me, I am actually quite content with my life at the present time; that may not always be so but I’ll cross that bridge when I come to it. I hope you are able to find some peace and contentment both for yourself and your PWP as you both adapt to a new way of living.

Thank you for sharing your experiences, Tot. I now know more about your situation and can really appreciate how you have been able to put yourself in my shoes and not shriek, ‘It’s not about you, it’s about them!!!’ down the wire at me!

Wise words about living in the present. We can’t know how others are feeling on the inside, and my PWP does genuinely get a lot out of her life, playing Scrabble, church meetings, supporting others, sewing etc. So I shouldn’t assume she is not enjoying life at all.

Footnote - she now has COVID as of today! Having had 4 jabs, she is hopefully going to be alright. I may not be able to visit this weekend but maybe that will allow us to do different things. She has phone, TV and a laptop, and a very nice room.

Life could be so much worse.

Thanks for all your support and I wish you well.

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