How to help my parents

Hi - my Mum is 75 years old and was diagnosed with Parkinson’s over 10 years ago.

My Dad is her registered carer. My sister and I unfortunately don’t live local. We live about 25 miles away and we are both still working so it’s difficult to just bob in and see them both as regular as we would like.

They have been coping really well but this last 18 months my Mum has been in and out of hospital for various reasons. Some Parkinson’s related, some not. My sister and I can see that her Parkinson’s is advancing but we aren’t sure that our Dad is or will acknowledge that it is. He says things like she is giving up or she won’t try. He gets frustrated and depressed about it. Consequently, they appear to be having arguments. It’s hard for us to speak to them separately to get a better idea of how they are coping.

Any advice as to how my sister and I should approach this situation would be greatly appreciated. We don’t want to appear to be taking sides about it all. We just want to try and help them both get through this.

Thank you

Good evening Clair … How lucky your parents are to have two such caring children as you obviously are.

I have Parkinson’s & I know that it is a slow progressive disease. I am not going to get better than I am now as I’m sure you realise is the case with your Mum.

What you don’t say is what you want to happen. Is it just to stop your parents arguing?

I bet you are thinking of their future. How do you see that going?
Where do they live? A house? Bungalow? Flat? Assisted living accommodation?

It might be that it is their home that is the problem? Do they need to move?

I am single & live in a one bedroom downstairs flat & I have a cleaner in once a week. I have Asda deliver my groceries once a week & I have a blue disability badge for my car. So all ideal for me really & I have far few worries than I might have if I lived elsewhere.

I also had my Gp refer me to the PCN network who have helped me a great deal with practical non medical things, like making my flat disabled Parkinson’s friendly, all free of charge.

Any questions or more information to give me, please ask.

Best wishes
Steve2

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Hello ClairBats

Steve2 is quite right in that your parents are lucky to have two such caring daughters but you are facing, as you know, a very delicate not to say difficult situation - to which if I am honest, there is no easy answer.

The first thing that occurred to me on reading your post was the reaction of your Dad saying your Mum is giving up or won’t try. That me be because he doesn’t know that her Parkinson’s will progress or perhaps more likely that he doesn’t really know or understand what that may mean and so can’t see that your Mum is not being deliberately obstructive rather than she can no longer do what she used to be able to do. It might also be that he does know that and his reaction in saying his wife has given up etc is because he is plain scared of what the future may hold; that may be a fear of what your Mum is potentially facing or perhaps a fear that he himself won’t cope with whatever is going to happen.

It may help if they had some time apart, I’m guessing they have no support that your Dad does it all, although of course that may not be right, but for now I will assume they have no outside help. Do you think they would be agreeable to an assessment by Adult Care Services (a referral can be made through their local council). They may suggest, for example, some home care to relieve your Dad os some of the routine things such as having to help her wash and dress, or perhaps your Mum could go to a day centre - that would give your Mum and Dad a bit of time apart; your Mum will be out of the house and mixing with other people with things to do and your Dad can have the day to himself. They can also, as Steve2 has intimated, have a look at their home and make sure it is set up so they can both manage more easily. Your Dad incidentally, would be eligible for a Carers Assessment in his own right, totally separate from his wife, if he will agree to that.

How you manage this situation is hard to judge, so much depends on the nature of your relationship and how close you are, how much you talk about the future and so on. I appreciate you and your sister don’t want to take sides, but instinct says to me that it is your Dad that needs to accept for whatever reason, things are changing, will change as time goes on and that will be normal for their lives from hereonin. That it won’t be like it was before - suggesting maybe they need some help may give you the opening you need to broaden the conversation but in one way or another I think it is a conversation that needs to be had. Whether that is done with both of them together separately would be something you need to decide. I know not everyone agrees with this but it can work when conversation is hard, there is likely to be a knee jerk reaction and the needed conversation falls apart and that is to write a letter. By doing this you can take your time to set out what you really want to say, get the words right and make sure that it is only out of concern for both of them You may write one letter to both of them or, if you feel it appropriate, a letter to each. Again you will need to decide whether you leave them to read the letter/s or stay in the room while you do. However you choose to do it, it will be hard on you both but unless some honest discussion is started somehow, you won’t get very far and their situation may get worse as your Mum’s Parkinson’s progresses. It may be possible to open the conversation with your Dad in a low key way ie next time he says your Mum has given up or is not trying ask him why he thinks that, it may give you the chance to explain it’’s progression of the Parkinson’s not her being difficult. It might be easier if both of you were visiting - a bit of moral support.

Incidentally I am assuming from how you wrote your Mum has no cognitive problems as that could put a different complexion on things. Even if she is cognitively well she may not see the changes in herself or understand why her husband is getting so frustrated with her, to her how she is may just seem normal and not see that it’s changed. I know that sounds ridiculous but because progression tends to be slow it can take time to realise that you are not doing as well as you were 6 or 12 months ago and that can be hard. There may be an element of denial which will only add to your dad’s frustration.

I’m sorry I can’t offer anything concrete, I’m doing a lot of second guessing here but can only say it as I see it based on what you have written. Hopefully something in this will resonate or maybe change your perception a bit and I hope it is not too inaccurate. - however I always try to write an honest reply and trust you will read this with that in mind.

Let us know how you are getting on and if you have any questions please do not hesitate to come back to the forum.

Best wishes
Tot

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Thank you Steve and Tot for your replies and kind words. You have both given us some helpful advice.

Since I wrote this yesterday our Dad has set up a Facebook messenger group to discuss how he is feeling without upsetting Mum. He is starting to open up and listen to us too.

Our Mum is in hospital at the moment after a fall on Thursday. She has a cracked rib and a bruised cheek. We are hoping she will be home soon though. My sister has had a couple of chats with her so we are getting a better picture of how they coping.

They live in a bungalow with an option of a warden service in the future (orange triangle). They have had quite a few adaptions to the house now and they do have regular visits from a Parkinson’s nurse. They are also involved with their local Parkinson’s uk group. Dad recently changed his car for one that can accommodate a wheel chair for the future and they have had a blue badge for a while.

I think we just wish they lived closer so we could help more but they moved away from where we live just before Mum was diagnosed. It was to down size to bungalow and be near my Dad’s Mum who is still going at nearly 97!

You have given us a few things to think about and discuss further. My sister and I feel a lot better about it all today. I will check in again as we progress.

Thanks
ClairBats

First of all, I want to say that I hope your parents recover quickly. I pray for them from the bottom of my heart. Your parents are very lucky to have a child like you. I don’t know much, but I will say this—my uncle also went through a similar situation. When everyone lost hope and became disappointed, someone, maybe his friend, suggested reciting the Quran five times a day. Soon, results started to show, and now, by the grace of Allah, my uncle is healthy. It’s a surprising miracle or maybe someone’s prayer was answered.