Dad not accepting

Living with Parkinson's Carers, friends and family
1

HI there, I’m new here. My mum, 73 was diagnosed with PD a couple of years ago and has also got related dementia. She has always been my Dad’s carer and now the tables are turned it’s not going so well.

My mum’s tremors are more obvious in her face and this seems to be a real issue for my Dad.
Things have got worse in terms of tremors and issues with swallowing over the past few months and we have received some good support from the dementia team, speech and language and so on.

Myself and my sisters are there most days, but that still doesn’t seem to be enough. He is constantly talking about her ‘shakes’ being an issue and getting worst (they’re not, they are pretty steady, but yes, they are there)

She gets in to a panic about swallowing and has had lots of input from SLT. The trouble is as soon as she feels like she can’t swallow my dad panics, makes her worst and they call myself or my sister and we have to rush round there. Often mum is in tears when we arrive and Dad is in a flap saying ‘she can’t top shaking, look at her!’

He’s clearly not accepting things and not coping with the changes in mum. But we have tried and tried to explain but it’s just not going in. I actually think he’s in complete denial.

They have recently been assessed by a social worker and things are being put in place to give Dad a break. They have also decided to move to supported living, so that is also in the process of being sorted out.

But I’m just not sure my Dad understands the long term prognosis - or wants to? I’m know it’s really hard for him but it’s hard for us too and I’m at the end of my tether. I live an hour away from them and having to rush over only to explain again that she needs to stay calm, dad needs to stop panicking etc is completely wearing me out. I’m sure my sisters feel the same as I know they get phone calls regularly too.

I’ve just got off the phone in tears as he told me I don’t understand as it’s really hard for him. I appreciate how hard it is, I really do. But I really think it’s time he stopped feeling sorry for himself and start being there for mum.

Any suggestions would be gratefully accepted.

2

Hi @JJ5, :wave:

Welcome to the forum. :slightly_smiling_face:

Parkinson’s can have a profound affect on not just the person with condition, but also family members as well which could explain why your dad is struggling at the moment. This is not uncommon as I’m sure many of our members can attest to and you seem to taking all the right steps in terms of getting a social worker involved to help your dad as your mum’s carer.

We understand the challenges that come along with caring for someone with Parkinson’s and we have a wealth of information that can help you and your family via our website here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons

I’m sure you’ll also hear from some of our members with their own experiences that I’m sure will be helpful to you, however, in the meantime we have a team of advisers via our confidential helpline that would be more than happy to offer you more support on this. Give us a call on 0808 800 0303 or email us at [email protected].

Best wishes,
Reah
Forum Community Manager

3

I understand how scary it is for your dad. It’s different for each of us and you don’t say why she was caring for him. I can only offer my own experience.
Until a few years ago hub was my carer, I’m disabled and can’t easily do cleaning and stuff that needs me on my feet such as cooking etc. Hub took over these and took early retirement. It was ticking over nicely till I noticed he had a tremor in his hand. You know the rest of that story.
We’re now in a situation where he’s got worse and so have I, we’re not old, early 60’s, seems unfair. Is not so amusing now as a couple of years ago that I do the reminding and paperwork and he does the physical work. The latter is do much harder for him now. More symptoms appear on a monthly basis now and it’s very scary for both of us. I’m not able top manage alone and I constantly get reminded that is not long now till he’s not able to cook and clean. I try and hide it from family Adams so desperately want to tell them how hard it is. But I’m a protective mother and my sister prefers to take, my sister in laws told me I’m lying and he’s not like that… I wish that were true.
Carer support is aimed at physically altered carers. I can understand the panic in your dad. Watching someone you love change is bad enough, but when there’s a physical need it’s far worse.
He probably needs to know what’s going to happen when she’s not able to manage. I have promised hubby I’ll keep him at home, but I often wonder how on earth I’ll be able to do that. Specially when he goes off on a temper shout. Massaging his hands ISD no longer enough. It’s like being tortured, you know the person you love needs help, you’re the only one there and you can’t do it.
I think you must include them both in discussions about where to go from here and future plans. It’s the not knowing that’s most scary. Who will care for him when she can’t. The future is less scary when you have plan a and b.

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Hello have had tech probs or would have replied sooner I feel for you and Chrissy come to that both of you have difficult and complex situations with no easy answers. One thing did come to mind though I admit it’s a long shot. You mentioned your parents had agreed to supported living that may well change a lot of things for you all. It may help then to think of the current situation as having an end point and the move the start of a new start. I’m not suggesting the move when it happens will suddenly solve anything it’s more a means to keep you going the care role can be relentless not least because often an end can’t be seen. Accepting respite can help the carer by seeing the role in smaller chunks is 6 weeks or whatever between respite means a small but regular light at the end of the tunnel. For you if you can see it as a situation with an end when they move it may help. Is there a way your sister can take turns at being the emergency call out one week on one off or something so you both get a break. Is there a pattern to your dad’s calls if so perhaps you could call first to check all is ok . Maybe call at mealtimes have him out the phone on speaker so you can chat to both and keep the situation calm. Of course these ideas may not suit or work but will perhaps set off a bit of creative thinking to keep you all going for now. Good luck and best wishes

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5

Thanks Chrissy, sorry I’ve taken an age to reply!
I feel your pain and send love and support virtually. It’s such an awful disease. Mum has got worst over the past few weeks and it’s so hard to watch. Going to try music with her today and see if that helps. Thanks again. Jo
x

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Sorry, I hadn’t seen these replies (thought I’d get notified but should have checked)
Thank you. Things have got worst and we’re there daily between myself and one of my sisters. Going to try some music today just before the episodes usually happen. Thanks again, good to hear some ideas. x