Carer really struggling

Hi all,
My husband was diagnosed 8 years ago, but has had PD at least 10 years. I found the forum at the time of diagnosis, but I’ve never been brave enough (or sad enough) to post.
I have been trying to ring the helpline since Saturday, but it’s either busy or closed.
My husband’s physical symptoms are becoming much worse, especially his mobility. However, this is not a problem for me, I am happy to do all housework and physical caring. The problem is his low moods, which are becoming more frequent and extreme. I am constantly on egg-shells to avoid triggering him. He will start to rant and it can go on for hours, just a constant stream of negative statements. He says very mean things, aimed mainly at me but also about all our family and friends. He will refer to things from over 30 years ago. I usually just listen, but if I try to argue back he says I’m shouting (I’m not). If I cry or show distress, he doesn’t react. I could go on, but it feels disloyal. We’ve been married over 30 yrs.
To the outside world he presents as pleasant. He uses this to say ‘everyone else likes me’ if I try to discuss his behaviour. I feel we are at a crisis point.
Thank you.

Hello Tawnyowl, sorry to hear you are having such a difficult time with your husband. My husband has had Parkinson’s for roughly the same amount of time. He was diagnosed aged 65. He was quite good for the first few years but in the last 18months, not so good. He’s still able to walk about and climb out stairs easily enough and we do get out and about as often as we can.
When his meds are working properly he isn’t too bad, but everything has to be timed around his meds schedule. But there are times when he struggles to get out a chair or into the car and bed. He also has problems with severe constipation and bladder urgency and has just undergone a cystoscopy re the latter. I’d also noticed he didn’t seem as ‘sharp’ so I mentioned this to the PD nurse. The upshot of which is he had a visit from the memory clinic nurse who did some tests etc in our home. He didn’t do very well. They have diagnosed a form of PD dementia which seems to differ from Alzheimer’s. He gets confused but his memory isn’t too bad. It’s mainly things he says that sometimes don’t make sense or he has difficulty keeping up with a conversation as he can easily ‘lose the thread’, and sometimes doesn’t seem to be able to follow instructions. So far he hasn’t displayed the symptoms you describe, and I must say it sounds very unpleasant and extremely stressful for you. They are going to try him on Rivastigmine to see if this may help slow the dementia process down. I really hope so, as this is a major worry for me. May I ask if he’s had any tests done on his cognivity? Parkinson’s is the most insidious of diseases. It presents such complex challenges for both the sufferer and carer. It’s heartbreaking to see our husbands/wives and partners change so much over the course of often quite a short time. As it appears that no two people experience the exact set of symptoms, it’s just so difficult to offer much in the way of constructive advice to your post. But from one very stressed out carer to another, my heart simply goes out to you. Take care Jean

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Hello Tawnyowl
I’m glad you found the courage to post on the forum. It doesn’t matter that you haven’t done so before, the forum is here for when you need it and that, for you is now. I was sorry to hear you are having such a difficult time. I have Parkinson’s myself and for me developing a challenging behaviour is just about the worst thing that can happen, even though I know it is not something I will have much control over, because I am only too well aware how hard that will be for everyone around me.
Jean1 has written an excellent reply to your post and can clearly relate to what you are going through but sadly there are no easy answers. However I will make a few comments if I may that may not make much difference in the grand scheme of things but may perhaps give you a slightly different perspective.
The first thing to say is do keep trying to get through to the helpline as they will be able to advise you on support and other resources that may be of help and just talking to someone can of itself make a difference. I appreciate that you may need t pick your time to ring the helpline as your husband seems volatile, but please do keep trying.
I also think you should consider bringing your husband’s behaviour to the notice of his medical team to make sure his medication doesn’t need tweaking and to be sure you are offered the help medically that he needs. Sometimes this can make a difference and it is always worth getting it checked out.
Whenever I mention this I get critical comments and people say I don’t understand the nature of long term relationships etc. Not true but I will continue to say it because you have a right to know and so at the risk of being controversial (again) I will say two things. You do not have to tolerate what amounts to abusive behaviour from anyone, including your husband nor do you have to continue to take the caring role unless you choose to. I am not saying they are easy decisions or that we have a perfect system that would make this easy and nor do I underestimate the huge feelings of guilt that go with these sorts of thoughts. But you do have a right to be treated with respect and there is no law that says a family member must take on the caring role or take it on for ever and a day. Sometimes it just gets too hard and I needed you to be aware of this even if you choose never to do anything about it.
It is important that you consider your own health too, the sort of situation you are describing can be very stressful and you already recognise that you are walking on eggshells - which probably means you spend at least some of the time waiting for the next storm to hit and therefore hardly ever truly relax. Both your physical and mental health can be at risk in these sorts of circumstances and if your health breaks, where would your husband be then. So when you speak to the helpdesk ask about support for you yourself. You are entitled to a Carers Assessment in your own right (contact your local council) and if you don’t know or haven’t contacted them before Carers UK and Age UK can be good starting points. I give links for both below

Parkinson’s as you are only too well aware is a very complex condition and as I have said more than once here on the forum, there are no winners. What I am going to say now will be difficult for you to do, if not impossible, but if you can do it, it may help you see things with a new eye which can be enough to keep you going at least in the short term. In a nutshell Parkinson’s has changed your husband. He may be living and breathing, he may look the same, he may even appear the same as he always has in certain situations (social norms and behaving as one is expected to behave in any given circumstance often stays in tact so much so it can feel like you’re living with a Jekyll and Hyde) but the man you fell in love with and married all those years ago has, it seems, been lost to Parkinson’'s and sadly is not something he can see in himself. He would probably be mortified by his behaviour towards you if he did. It is often said that in many neurological conditions anybody involved with the person effectively goes through the grief process twice. Once when, as now, the person is still physically here and living and breathing but is not the person you know and caring for that person is like caring for a stranger and a second time when death finally takes them. Understanding that and trying to see it with some objectivity may help.
I am aware this will have not been an easy read but I have always tried to be honest in my replies and the fact is you are in a very difficult position and I do wish I could tell you that if you do x y and z it will all work out alright. Being a carer for anyone can be extremely difficult, people often don’t realise when they first take it on and it’s not too bad, just how relentless, exhausting and yes lonely it can be nor do they consider that it can go on for years. The situation is often compounded by a huge mix of emtions especially guilt which can be very destructive. It is also true that not everyone is cut out to be a carer but there is often an unspoken view that the family member will take on this role and that is a very hard view to challenge. So it is very important that you think about yourself, your own health, and if the carer role is one you want to continue or continue on your own at any rate. Your life matters every bit as much as your husband’s and your needs are as great as his, that’s not being selfish that is the truth and if you can find a way to be true to yourself however that may pan out, then in my opinion that’s the best way to help your husband and make sure he gets the help he needs be that from you or someone else.
I really do wish I could do more to help and although I accept this has probably been a hard read for you, I hope with a bit of time when you’ve given it some thought you can see there are possible options to consider albeit none of them easy and if nothing else you can maybe see
things from a slightly different perspective that may make your situation a little easier to bear at least for a bit.
Do take care, you are important too.

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Thank you for your advice and support Jean, it means a lot to hear from a fellow carer.

Thank you so much for taking the time to reply with such a thoughtful response. It means the world. Thanks also for saying I should be treated with respect, I needed to hear that. I will keep trying to ring the helpline.

I am aware that I have been upsetting my wife due to feeling that she doesn’t care. She does care very much of course, but I have been treating her poorly because I am insecure at times and was convinced that she wanted out of our relationship, which I do know is not true.

I know that Parkinson’s sufferers can experience things like this as if they are real and they can accuse their spouse or partners by making hurtful accusations. I have it under control most of the time. On occasion these feelings rise up and I over react to her spending some time on her own or with friends.

I have spoken to my neurologist who was able to provide some help. Do you have any tips or recommendations that would help. My insecurities are not helping.

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Hi and welcome to the forum, @Moooray. You’ll find our members very friendly and supportive and this is a topic that many of them will likely find familiar.

You’re both going through so many emotions and it’s no wonder you’re doubting yourself and feeling vulnerable. You actually sound sensitive and insightful and that’s a really good start. Are you able to talk to her honestly about this and see what she really thinks? She may even have some ideas about it herself. It might be helpful to read this page for carers: I’m sure you already know, but it’s a very healthy thing for carers to take time out for themselves so that they’re able to be stronger in their role. You can even consider respite care or time off as a way of creating predictable space that you’re both on board with.

I’m sure others will let you know how they have managed it but it could also be helpful to speak to our Helpline advisers who can point you towards resources. You can reach them on 0808 800 0303.

Take care of each other,
Forum Moderation Team

Hello Moooray
I think JaniceP is absolutely right. You are clearly very aware and from what you say it seems to me that despite your saying you treated your wife poorly you and she have a strong relationship. If you can keep the lines of communication open and speak honestly to each other you will come through the storms that Parkinson’s can throw in your path.

Parkinson’s is a strange and complex condition that can affect just about any area of your life but I think managing the sort of scenario you describe is both common and difficult. I think there’s a lot of truth in the saying “you always hurt the one you love.” Sometimes I know that I am being irrational at the time but don’t seem to be able to stop myself. It is the nature of the beast. I suspect it is much the same for you, you are aware you are being unreasonable but can’t stop yourself. You also say you feel insecure at times and at the risk of sounding very sexist, I think many men would find it hard to admit they feel vulnerable and insecure. So when you talk to your wife that is what she needs to understand and you have to listen properly to her and believe her when she tells you she doesn’t want ‘out’ of your relationship. You also need to
accept she is a person in her own right and perfectly entitled to spend time with her friends and shouldn’t need to justify why she wants some time to herself. She is your wife not some hired help available to you 24/7. That is very blunt but sometimes if you spell it out it can help to see things a little differently. My friends had similar problems few years ago and they set aside some for a heart to heart and out of that came custard chicken legs. I don’t recall now how they came to settle on custard chicken legs but basically it’s a nonsense term that they use when one or other is being ridiculous or hurtful or whatever. It is used sparingly when it can be applied to recognise vulnerability or insecurity or irrational behaviours and not for anything else.
They both recognise the term and they will say it stops the one being irrational or whatever and allows the other
person to explain how it makes them feel or why there is no basis or truth in the view being expressed It may seem silly, but it works for them maybe something similar would help you ……… I will leave custard chicken legs with you as something to maybe think about. If nothing else it’s so silly you can’t help but smile
Don’t beat yourself up, JaniceP has offered some advice that I would encourage you to follow up, and when the time is right take some time for you and your wife to talk openly and honestly about how Parkinson’s is making you both feel your fears and insecurities obout your unknown future or anything else. And you never know she might think your own version of custard chicken legs will work for you - stranger things have happened lol.
I wish you well