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 haven’t got any particular advice, but I’m sorry to hear about your situation. From what I’ve experienced, Parkinson’s can really affect the person’s personality as well as affecting them physically.

Why do you have to tell him or your adult children everything that you’re doing?

The whole situation must be incredibly hard but personally I know I would allow myself a lot of leeway with white lies and live my life to please myself. you must have given so much to others. It is not fair on them to expect you to martyr yourself.

My DM has Parkinsons and has had a total personality transplant. Angry, paranoid and jealous of everything, its very hard spending any time with her. Antidepressants have helped slightly, but not enough.
I recommend not telling him everything you do. Its easier when its not a spouse, but it keeps me sane.

How do your daughters feel and see things? Do they support your need to have your own life too? How often do you visit your husband?

After becoming a widow, my perspective on life changed somewhat. My people pleasing days are over. I think that it’s okay to be selfish sometimes and pursue what makes you happy. Life is short and you shouldn’t compromise your own happiness for someone else’s.

I would book a short holiday and just say you couldn’t visit due to illness

Thank you so much. As both my daughters live away, I’ve shielded them from a lot of the behaviour as it won’t help them. I visit him almost every day because if I don’t all hell breaks loose. But I guess I’m trying to navigate doing something for myself without feeling guilty

You are absolutely not the asshole. You have spent a decade enduring emotional and verbal abuse while carrying the weight of caregiver burnout as well.

Illnesses like Parkinson’s can alter a person’s personality so the illness explains his behavior, but it does not negate the impact it has had on you.

You are entirely justified in wanting a life, some joy, and some affection.

Do your daughters help? Does anyone else give you support/a break?

To banana split without being aware I’ve totally put everyone before me as that seems to be my nature, but the support I’ve received within the minutes I’ve posted has overwhelmed me, I’ve never ever received such support, and you’re strangers. I’m already feeling less guilt for reaching out

Lie if you have to. The home wouldn’t allow you to visit if you had a d&v bug for example.

You’re allowed a life too. Nobody else is going to prioritise you so you have to do it for yourself. If you cause some upset along the way then so be it.

No my siblings have distanced themselves with the mantra of everyone has problems. I’m caught in that place of trying to keep dad’s halo in place, as he was a brilliant father, and they genuinely can’t deal with the probability that he could have changed so much. Ugh. I wouldn’t wish this on my worst enemy and I actually don’t have any 🤷‍♀️

I say this kindly but shielding them won't help you and I think you really need it.

It sounds like you've been doing this alone for far too long now and you really do need some respite from it all. Being a caregiver is really hard (speaking from experience!) and you deserve some grace and peace right now.

You are a million percent NOT being unreasonable. Our dad was like this and it was awful; one of the reasons he went into care was that he was so possessive over mum, she wasn’t ‘allowed’ to do anything. You are a person too, you deserve happiness, and to put yourself first sometimes xxx

It is such a cruel disease that it’s like death by a thousand cuts losing the person you loved.

It's awful that you think people will judge you for being 67. Maybe you're right! But an 18 year old doesn't matter any more of less than a 67 year old.

OP you sound very kind. You are your own person and it sounds like you are doing your best to care for your sick DH. I’m the DD in your situation albeit with my dad getting Alzheimer’s, and my mum shielding me did not help at all. I felt like I could only really help if I knew what was actually going on, not the sanitised version…! And the real version was pretty bad.

Be upfront with everyone about how difficult the behaviour changes are and have been. And go for it. Have fun. I’m rooting for you!

I want to hug you all. I’m actually having a little cry, honestly this is the most support I’ve had in over 12 years. Maybe there is hope for me

Well if "all hell breaks loose" when you don't visit him for a day then you might as well not visit for a week - the resultant storm will be much the same.

Reclaim a life for yourself while you still have the energy to, who knows what's round the corner for any us?

You haven't abandoned your husband, he is receiving the level of care he needs, which is unlikely to have been achievable at home anyway. And visit, of course, but only what you can tolerate, your health, mental and physical matter too. You matter too.

You’re soo right!! I tried for 2 years to keep him at home and it was a disaster in every way possible. I am getting to be comfortable with not visiting if he’s being mean, but hearing it from someone independent gives me encouragement to do that so thank you 🙏

You sound kind and caring - and totally burnt out. If it helps, my lovely MIL had to put my FIL in a care home. He is stil kindly- but not always to her (the result of dementia) She is often so upset after seeing him. Yet, she has started to really enjoy life outside. We have advised her to go in less to see him - he is being well looked after, and she deserves to enjoy some time to herself after years of caregiving. So do you. If you were a friend of mine, I'd advise the same. Your daughters either don't need to know - but I'd advise telling them. Blame the illness certainly, but explain how distressing it is to you - and that you need some separation for your own sanity. We feared our MIL would end up in an early grave, such was the depth of her stress over this. I am sure your daughters would not want this for their lovely mum.

OP you must start telling your DDs what is going on. Not in a way that would burden them or make them feel differently about their dad, but in a way that shows you have been dealing with a lot. And if you don’t have some short respite then you simply won’t be able to deal with the situation much longer.
I think you should feel ill next week, then, oh my goodness, you have Covid. So you’re out of the picture for 2 weeks. And do whatever you want to do in that time: sleep, read, go to a spa, to a movie, to a cottage in the middle of nowhere, to Stockholm. Whatever you want to do. Your DDs don’t need to know about everything you do all of the time. DH definitely doesn’t need to know, you’re ill and lost your voice temporarily with Covid, no phone calls, no visits, you’re sleeping and recovering.

Is there any support groups locally? Talking to others in the same situation can help. Lean on the home and your GP for help, hes not going to get better so you need to look after yourself and build a future and a support network. And encourage your DC to help you as much as they can. You are very far from unreasonable.

You are totally not an arsehole at all. You absolutely matter too, as does your sanity.

I think you should open up more to your daughters about what the reality is. Surely they need to know?

I think you should book that short break holiday for yourself. It will revitalise you and help keep you sane. I remember many years ago when my MIL was caring for FIL, who had Motor Neurone Disease. The odd small break really helped her. Sometimes she did it when FIL went into respite care, or sometimes went away for a long weekend if any of us could step in to help for a few days. Nobody begrudged it to her at all. Your DDs shouldn't begrudge it to you.

Unfortunately, these neurological conditions, particularly Parkinson's I believe, can really have an adverse effect on the sufferer's personality.

It all means that you definitely need to ring fence some time for yourself and not feel guilty about it.

You are absolutely worn out by the sounds of it. I'm really so sorry it has come to this for you. Your husband's demands are unreasonable and controlling. This could be his illness or it could just be how he is, but it can't go on like this for you. Look, you can't do everything solo. Have you been in touch with either of these links? They have helplines and you can ring and talk things through. They know all of the challenges of Parkinson's and how it can affect carers like yourself. You don't have to be a member, give them a call and talk things through. Homepage | Parkinson's UK There is also UK | Carers UK.

They will sign post you for additional help or advice if you want it. You absolutely need a break, and a rest, and to learn that your well being is also important. It's absolutely exhausting looking after someone like this, so please don't feel guilty.

Time also to tell the children. They are adults now and you can't shoulder all of this on your own. Even if they can't get over to look after him and give you a break, they need to understand that you need some respite. Sending you a big hug if that's ok. Talk here as much as you want if it's a help. Please know that it's ok to look after yourself, you aren't being selfish or uncaring.

Why why didn’t I reach out before, 12 years of hell. Thinking I’m doing everything wrong, trying to be everyone’s cheerleader, and I’m not worth a blink of an eye. But I wish I could get you all in a room and hug the heck out of you all I cannot explain how the weight is lifting 🙏🙏

As a nurse who works in long term care it is so important that you look after yourself and take some well needed holidays and breaks - i see the strain these situations have on relatives, i also experienced it with my own parents.
Yes your husband may not be happy about it, but it is necessary and your husband will be getting cared for in the nursing home whilst you are away. Carer stress is a serious issue that can affect you mentally and physically (as I'm sure you are aware). I know it must be hard as you don't want to upset your daughters, but frankly they should be supporting you in this too and not be upset by you taking a break you desperately need
So sorry you are dealing with all of this.

Thank you all for your advice, non of you have skin in this game so may I please ask 1 more question. Why do I feel I need my daughter’s approval to do anything for myself? I mean I’m their mother but I feel I need their blessing if I want to do something for myself, why do I feel so guilty?