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.

The main thing I’m learning through this is that there is so much compassion out here and we’re all warriors fighting our own battles, but letting it out and being vulnerable with honesty is I know, going to help me and I so wish I had done this years ago. Maybe there is life out there for me

My DH has Parkinson’s. Was diagnosed before 50
now nearly 10’years ago. He is still working and you cannot really tell he is ill unless you know what to look for maybe, so our lives have not changed much. I think everyone’s Parkinson’s journey is different. I feel like I have had a long time to prepare for what might come so definitely have decided that if his personality changes so he is no longer nice to me, I want an escape route. I don’t want to live with someone who is abusive or unkind to me. Ofc I would look after him, but I also want to look after me and be happy.

I strongly encourage you to prepare for your future, don’t get lost in a battle you can’t win. Of course the love and support will be there, but please from experience please heed my advice and take care of yourself and it’s ok to put yourself first, which I never did and now I’m reaping the repercussions.

I suspect that your husband has always been the dominant person in your family, he’s perhaps encouraged your daughters too to see him as the ‘head of the family’ and you in a more subsidiary role. That’s why you feel you need their permission, and that’s why it wasn’t possible for you to stand up when he didn’t choose to engage with or fight the Parkinson’s. But it doesn’t have to be that way.
Be honest as you can with your daughters, perhaps arrange for them to come and visit and tell them some of what you have told us. Because you’ve been shielding them, they probably don’t appreciate how bad things have got.
My dad had Parkinson’s, he was already a grumpy old bugger but he became very difficult to deal with. We didn’t realise how bad it was, until my mum collapsed. She was worn out, and died a few months later; no doubt the heart disease would have happened anyway, but I regret very much that we didn’t insist on him going into care before this.

We can only give you virtual hugs, I recommend you book a massage for yourself. Not the same as a hug but there’s something about the physical contact that can be very soothing. I also think you need to start building a life on your own, one that doesn’t revolve around daily visits to the nursing home. You haven’t said if you have friends, but join a local group, U3A, WI, Arts Society or something so that you have some regular activities of your own.

I work in a dementia care home and one of the first things people tell us when a loved one becomes resident is how much they are able to now relax, knowing they don't have to do the day to day care. It's ok to step back and figure out your new normal.

It doesn't mean you love your DH any less, or that you are a bad wife. You need time to rest and recuperate from the years of being the carer.

I really hope you take some time for yourself, you sound like you need it. You cannot pour from an empty cup and all that.

Because he’s in a nursing home, you can be economical with the truth. Not only to protect your own sanity, but to protect him too. I can only imagine how it must feel to be diagnosed with this condition. It’s bound to affect someone mentally - maybe make them bitter, robbed of a life they once had, feeling your wife/partner slowly checking out, as you seem to be doing. Not saying that that’s wrong, because it must be hard for you too. But I would cut him a bit of slack. He’s not going to get better, but continue to decline. It must be horrific. Just go on holiday or trips out and about but don’t rub it in his face.

Oh OP, I hear you. So many of us are in similar positions. I know exactly what you mean, never to be cuddled or hugged again. What a sadness.

My advice is to just do what you want and don't tell him or your daughters. What can they do? You've still got a life, live it.

I can totally empathise. My dad suffered with Parkinson's and also Lewy Body Dementia for around 7yrs. The first 4 weren't too bad but the last 3 were horrendous. My DM was determined to give him 5* care at home and expected both siblings to do the same when she needed to get out of the house. I found it physically exhausting/back breaking and never really wanted to get to the point of toileting him as he could barely get up and down and I had to bear his weight with my own back pain and then clean him up. Not once did she ask how I felt about it. We did have carers in for a few months overnight as he slept during the day and then started sundowning on the evening just when everyone else gets tired. My mum jad a breakdown at one point as her called out for her to help 12 times during the night and it could be every two minutes during the day as the only way he could relieve the 'aches' in his legs (restless leg syndrome) was to stand up, but he was too weak to do this himself so a fall risk; so whoever was caring was literally helping him up and down almost constantly. Mum did have to be harsh at times and tell him to wait but he called out for her a lot. She could nearly make a meal in peace. Luckily he was an easy patient mentally - it was his physical health that was the worst for us. We had a falls call line 24/7 who came out more times than I can remember to get him back up when he did fall - he wore a falls watch and they could speak to him and ask him if he was ok. He was never alone though-the care was full on 24/7. You must learn to put in boundaries- white lies etc.. to keep yourself sane. You can look into respite care also, and Age UK were fantastic as a source of info. Claim attendance allowance if you are not already. It's pitiful but you are entitled to it. I'm sorry you are going through this as such a young age. The guilt is never ending and in the end I got compassion fatigue. I adored my dad but the resentment was real-more regarding my mother and her high expectations. I'll actually be really honest - I fucking hated it and it has changed our whole family dynamic. Put your children first if you can. Also, everyone's experience is different - just be kind to yourself. Sending empathetic hugs and love ❤️ X

As someone whose partner has just been diagnosed I feel very emotional reading this. I just cannot imagine putting him in a care home but reading your post makes me feel frightened for the future