Falling through the cracks

Living with Parkinson's Carers, friends and family
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I’m an exhausted carer for my husband who was diagnosed with YOPD 10 years ago.

To cut a long story short, we would separate if finances would allow it. It’s not just the physical symptoms which are hard, but I can no longer take the emotional and verbal abuse. The house is a prison and he’s so paranoid he has been known to hire private investigators to check up on me if I ever go out, which is rarely. He constantly checks my phone and computer, and last time I went for a night out (nearly a year ago) I got called a ‘tart’ and got so much flak for it it just isn’t worth it. If I’m gone for more than a few hours he will most likely call an ambulance. He’s called the police before to tell them I’ve been neglecting him, which is untrue.
He becomes abusive if I don’t help him enough. It feels like his mental capacity is impaired because he is so unreasonable but of course no-one else sees this apart from me. Financially I am trapped - all of our joint debts are in my sole name because his credit rating is so bad and of course I am unable to work because I’m stuck at home looking after him. I’m younger than him and everything is in his name.
He didn’t qualify for Personal Independent Payments, and therefore I don’t qualify for a carer’s allowance. He receives money from an insurance policy, however, he’s in the middle of a very long and expensive legal case so all the spare money goes towards that.
I feel like I’ve fallen through the cracks in the system. Apparently he can live independently but I can’t leave the house for more than a few hours, so a strange definition of independence. It would be nice to have some money for myself that I can put towards easing the financial burden that’s all in my name, and it might make me more able to leave in the future.
Lawyers have told me I would get pretty much nothing in a divorce because his needs are greater than mine and I haven’t had kids. No consideration for the fact that my life and earning capacity is diminished because I’ve been looking after him for so long.
The council were supposed to be providing me with some money for respite care, but it’s been months now and they’ve stopped talking to me even though it was all agreed.

I’m not sure how much longer I can carry on like this for, or if anyone knows of any other benefits I might be entitled to for care or respite care.

Thanks x

2 Likes
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Dear Piggle I’m sorry to hear what you are having to endure and it can’t be easy. Get in touch with citizens advice or Age UK as I think you need help before you “break”.and COVID19 restrictions don’t help. They should be able to direct you to the right agencies/organisations.
I think it would be good for you to talk to somebody as I find it helps to get things off your chest now and then. I wish you well

Poppy x

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Hi @Piggle and a warm welcome back to the forum community.

Thank you for sharing your experience - I am sorry to hear you are struggling at the moment - that sounds like such a difficult situation to be in.

I am sure some of what you have said will strike a chord with some of our members who may have been through similar experiences. I see Poppyseed123 has already offered some great advice and hopefully others will be along soon to say hello and offer some support.

In the meantime we do have a lot of information on our website for family members and carers that covers things like relationships and looks at a lot of the common issues people experience in the years following diagnosis. It might be worth a look, if you haven’t already.

https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons

https://www.parkinsons.org.uk/information-and-support/being-relationship

I note what you have mentioned about your husband’s paranoia and behaviour. Although some people do report similar issues, where it is causing serious issues it might be worth having a chat with your husband’s health professionals, if you haven’t already, to make them aware of the situation and see if there is anything they can suggest to try to improve things.

In terms of practical support - I know you’ve said you have spoken to the council about some funding for respite. As an alternative you might want to look at whether there are any other respite schemes locally? Sometimes local charities or voluntary organisations run their own respite schemes that you might not have heard about.

You could also consider seeking support from your local hospice? Although the word hospice might stir up negative associations for some, many hospices do offer services, such as respite, to people with neurological conditions like Parkinson’s - often this can be free of charge or available for a small donation so it might be worth investigating if you continue to have difficulty contacting the council.

Your Parkinsons Local Adviser should be able to tell you if there are any suitable respite schemes in your area. They can also help you look into benefits and entitlements and support you in trying to contact the council if you wish.

If you feel you might benefit from support you can contact our helpline. Our trained advisers are there to provide free, confidential information and support on all aspects of life with Parkinson’s. If needed they can also put you in touch with a Parkinson’s specialist nurse or the Parkinson’s Local Adviser for your area.

Our helpline is available 9am-7pm Monday to Friday and 10am-2pm on Saturday (closed Sundays and Bank Holidays) You can contact us on 0808 800 0303 or [email protected]

I hope that helps a little, please keep in touch and let us know how you get on and please feel free to keep using the forum as a source of information and support as often as you need to.

Take care

Corinne
Forum moderation team

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Hello Piggle
There are times and this is one, when you wonder how life can treat two people so cruelly and I wish I could do more than offer words of support with little to back it up. However at the risk of pointing out the obvious and knowing how difficult it will be for you to action anything I will say it anyway. Sometimes when you’re in the middle of a quagmire it is hard to see anything clearly so here goes. First please understand I am not holding myself up as expert here im not nor do I pretend to be. It is my view based on some professional experience with reading between the lines that if not wholly accurate may make you think a bit differently about your situation because I think you will need to be creative to get anything past your husband without it causing more grief. If you continue to read please bear this in mind, you are clearly fragile and at a danger point, so stop here and come back later if its too much. OK then.

  1. Your situation cannot carry on as is and you clearly and totally understandbly feel disempowered. From your description I would consider you are in an abusive relationship exactly the same as any victim of domestic violence. That it stems from your husband’s Parkinson’s and he may not be in a position to recognise that does not alter the fact that he is using controlling behaviours and that is not acceptable.
  2. Although you don’t say so, I also wonder if you are also experiencing a lot of guilt on the basis he has Parkinson’s and doesn’t know what he is doing, it hasn’t always been like this maybe even deep down it may not always be this bad. I’m guessing here of course but a lot can be buried in order to survive and it has a habit of leaking in all sorts of ways you may not even notice,
  3. I don’t know how you can do this but there are as has already been suggested several ways and organisations that should be able to help. To that I would add first just to make it stand out are you aware you are entitled to a carers assessment in your own right. You need to contact your local council. If you’ve had one and nothing has happened contact them again and ask for an urgent review telling them exactly what you have said here. Make it clear you are at breaking point and are seriously concerned that one other or both of you are at risk of harm. That is not something i say lightly but when people get desperate behaviour can become unpredictable.
    Contacting citizens advice is a good idea also carers uk. They and the local housing department would be able to tell you your rights should you walk away. They should also be able to check you are getting all monies you are entitled too. You may also want to think about reporting - and I am well aware you may find this shocking - your husband’s abuse towards you see https://www.gov.uk/report-domestic-abuse
    You may feel disempowered and helpless but you do have rights.

I hope I haven’t come across as too brutal or making it sound easy but I do think you need to think more broadly than you have been doing because the ongoing situation is doing neither of you any favours since neither of you are getting the support you need. I urge you to be brave take a first step to establish your rights and/or starting shouting loudly at anyone who will listen. Finally if you’ve never done it before contact your local cllr and or MP. They are your elected representatives and you may be surprised what can happen when they get involved.

I do hope this has helped and not made you feel less able. You posted to the forum that was brave and to have survived so much suggests to me you are stronger than you realise. Whatever you choose to do or not do in as a consequence of the replies to your post, the forum will always be here for you.
Do take care and I send much love and a big virtual hug.

1 Like
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Hiya Piggle, that is sound good advice from Tot, I should do your best and get some advice and don’t sit back and wallow in your depressed state, its always been known we all have to fight for what we want these days, only for some it is harder, but don’t give up and don’t let them (the officials) drag you down, you are as good as they are if not better!

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I don’t have a lot to add to the above except that all PD drugs are psycho-active, or nearly all. The paranoia could be aggravated or even caused by a medication – perhaps a dopamine agonist? It might be worth getting in touch with your husband’s consultant – he may not like this but you’re doing it for the best reasons – to discuss whether the meds are one of the causes of this situation. I have heard incredible but true stories about dopamine agonists changing behaviour from PD sufferers. Of course, you may see this as closing the door after the horse has bolted. But it may be worth a try,
I hope things get a little easier for you soon, you are in a very tough situation. You deserve better.

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Dear Piggle

How are you and did you manage to get some help and advice with regard to your situation. I hope you are getting the help you need.
Poppy x

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Can I ask you if you have been together before his PD diagnosis?
Maybe that’s not too important because your profile says that you are 29-years old and therefore you must change the situation and live a more rewarding life.
If all the good advice above comes to nothing, move on. And I say this as a PD sufferer with a much younger partner.
You may not get your fair share of your assets but I’d be very surprised if you also have to pick-up all your debts if you divorce. The combined balance (assets minus debts) will be divided between you.