Advice for wife of Parkinson’s patient

[Tess2459]

Am I the asshole? At the age of 55 my husband aged 60 was diagnosed with Parkinson’s. He didn’t accept the diagnosis and was devastated. for the next 10 years the anger he felt he took out on me. I got him into different kinds of therapies to help him accept but nothing worked. With our children (adult girls) he played the poor me card, and of course all their focus was on him. Back story. I absolutely adored my husband we had had 28 years of the perfect marriage and I felt beyond blessed. I truly adored him. But he turned so vicious on me. So now I’ll cut to the chase. He has mentally and emotionally destroyed me. He is now in a nursing home, but I am trapped in this prison. If I try and do something for myself, he accuses me of being selfish, I tried having a little holiday and he accused me of being selfish and abandoning him. I feel that I have to get approval from him and my girls before I even attempt to do anything. To most of you I’m assuming you’ll think it doesn’t matter because I’m 67, but that’s just a number. I’m young at heart, I love to laugh, I take care of myself and am often told I look 10 years younger than I am. To lose your husband at the age of 55 but still married is just mental. I feel invisible I’m so desperately lonely but I always have to put the act on that all is good, any advice? I mean is this it? Living alone never feeling a hug or being cuddled ever again.

I think you need to be firmer about doing things for yourself. State your plans, carry them out. Don’t seek permission - or show any interest in others’ permission.

Caring is hard. Carers need breaks.

Sorry you are going through this. On a practical level, do you have powers of attorney? If not, try and get them arranged whilst he still has capacity. If you have joint assets, you will be stuck if he is alive and cannot consent, eg, selling a house etc.

OP,

Have a look at a charity called Carefree if you fancy a little break for yourself. It's a charity that donates unsold hotel rooms to unpaid (i.e. not a paid job) carers. There is a small admin fee- about £40 from memory and you can have up to 2x 2 night stays a year

Why do you? Perhaps because you feel you’re acting on the family’s behalf looking after him.

You’ve also been acting as a buffer, a shield, between his illness and them, trying to make everyone as ok as possible. You need them to feel ok about any inconvenience to him, for them not to be worried. Because you’re still mothering them, as well as him.

They don’t need you to do that, they’re adults. They need to be freed to regard you as an autonomous adult with needs.

You are putting yourself in prison. You feel you need permission. You don’t.

Maybe because you're a people pleaser? This is no bad thing but you need to put yourself first. Your daughters are adults and can cope with the reality of the situation.

Smart, my daughters put all that in place for me. But 1 last thing I want to admit too and I’ve never told anyone this but I’m sooo angry with him. Why didn’t he fight to have the best life possible, face up to the challenge and refuse to let Parkinson take over, 12 years I fought for him I was right there for him and he folded like a cheap suit so I guess I am the asshole.

It's not an easy thing to do as we don't know your family dynamic. I'm guessing that you've always had to seek approval from being very young? That you think somehow everyone is more important than you are? You could do with some proper counselling to work your way through this perhaps.

Your DDs sound distant in person as well as place. You need to work on yourself and realise that it is time to TELL them what you are doing and why. If they aren't happy about that, then that says more about them than it does about you. They should long ago have realised that you need a break and to share the load a bit. Part of it is because you have hidden the worst bits from them. They aren't little kids any longer. Time to stand up for yourself, you really aren't asking for the moon, just some consideration and understanding. And DH is just going to have to accept it. Don't let his selfishness continue to cloud your view of what is happening here.

No, you're not the asshole. I don't have experience of Parkinson's but from what other posters have described, someone with Parkinsons experiences mood and cognitive changes.
And from my experiences of other health issues with family members, there is often a large element of apathy or disbelief that it's actually happening to them with a long term health condition. Hence why he might not have wanted to fight or challenge anything- because the Parkinsons made things such that he didn't see the worth in doing so.

Its a neurological condition. He has no more control of it anymore than you do. You aren't wrong to be angry though, its a huge impact on your life and your plans for a future which is now gone.
Do you have a therapist for you? On the carers of elderly parents thread the theme of mourning them before they are dead comes up alot. Its a similar situation you are in.

You’ve hit the nail on the head. I just want everyone to be happy, you’ve all got so much insight, and even through these threads I’m learning

Please talk to the CH manager about your situation. I'm sure they will reassure you that DH is being cared for, whether you visit or not and that you really don't need to visit every day.
Parkinsons is a horrible disease, the patient becomes unrecognisable as the pleasant lo ing person they were.
But I do think thatyou should talk honestly to your DD, they are adults and will cope.

You don't need anyone's permission to do anything. You can give yourself permission to have some joy. Time to reach out to your daughters and ask for some support. They are adults and being honest may well bring you closer. I think that sometimes people become angry and bitter when dealing with chronic illness because of the reality of their loss. It's also possible it makes their situation more tolerable. However you don't have to put up with this treatment. You certainly don't need anyone's permission. It's within your own gift to decide to live a happier and fuller life. Reach out, make a plan.

@Tess2459 are you in the UK or another part of the world? Just so we can be sure any links are relevant to you.

Because you're used to putting everyone else's wants and needs above your own so look to others for their approval when it something just for you.

Still not an AH. It's okay to be angry and deep down your provably angrier that something beyond your control caused this and basically took your husband from you.

All I see is someone deserving of kindness 💐

I just want a hug 😔

I’m in the uk

🫂 virtual one from me.

Try and do something just for you over the next few days.

Thank you ☺️

Hey you are doing ok. You've posted on AIBU and everyone has rallied round here. That's pretty unusual. People do care and are letting you know.💜

There are few things worse than becoming a carer to your partner and losing your husband and the marriage you had. To be a carer to someone who is abusive must be horrific. You need to live too. The man he was would have wanted that. Don't set yourself on firs to keep someone else warm. You have all my respect for doing that for so long. Start by cutting down your visits to once every two days. He's going to be a dick anyway. He possible can't help it.

My husband has Parkinsons too and his personality has definitely changed over the last few years. I am lucky indeed some ways because he makes more effort with me but he doesn't even try with his children. Therefore life can be very difficult. I have to try and protect them from his moods whilst still being his carer. The truth is our marriage was just ticking along before the Parkinsons. We got on well but more like friends. I think that is why he tries harder with me now, he needs me to be his carer. Think it is starting to look like he has Parkinsons dementia too.

The other posters are right don't tell husband everything and have a life outside all this he doesn't know about. We have to try and look after ourselves and find a little mean time, I know this can be so difficult. In a way I got lucky even though this will sound terrible to most posters. My husband was diagnosed with cancer a couple of years ago. Which means he has been in hospital for weeks at a time over the last couple of years. This has given me time to adjust myself to our new life with Parkinsons without him around.

You have obviously be strong for years dealing with this. Please give yourself some grace to feel darkly about what has happened to your life. One thing I have learnt to do in the past few years is allow myself grace to feel not OK and breathing time away from our situation.

I’m genuinely blown away, I’ve had a good cry, which was probably long overdue, but the kindness I’ve been shown has been awesome and saying thank you seems so inadequate.

I’m not sure it’s that easy to just ‘fight it’. It sounds like he’s suffering too.