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Not coping with caring - Carers UK Forum

Not coping with caring

Tell us a bit about yourself here.

My name is Leni. My husband is ill thought it's taking months and months to get a diagnosis. He was told last week by a neurologist that he might have Parkinson's but this is not confirmed. For several months he has been nauseous and practically unable to eat; to date all tests have been negative.

Today I just want to thank this forum for being there. I've been on other online support forums and I hope this will be as good. My life has been turned upside down. I'm an active member of U3A. I play the violin, edit a newsletter, am in a choir, go to several classes, but as he becomes more and more helpless, I feel that I may have to give things up, and I also feel that this would be bad for both of us. More and more he expects me to stay at home; this just makes me resentful. He used to do all of the cooking; now his hands shake so he can't cook at all and is too weak to stand up. He also used to do all of the shopping. Guess I was lucky. Now, every day, I have to do more and more. I feel alone and isolated.

If only they could sort out a diagnosis and begin some treatment, but as it is, we're at the mercy of the medical profession, which is suffering from serious financial cuts.

I don't know what else to say. I'm happy with online contact; I just need some support. Thanks for listening.
Hi Animal lover (plenty of those on here too!)
I think it's worth asking yourself why he wants you to stay home. Is it because of things you need to do for him, or just because he wants company? If you can analyse his actual needs (as opposed to wants) then you can start to figure out what can be provided by outside help. That help might for example be as simple as cleaner to take over some of the domestic tasks, or the need might be for company in which case you could look into sitting services, or perhaps some kind of day centre for him to attend.
If you can start to introduce some kind of outside help now it is easier to add more later whereas if he gets used to you and only you then it gets very difficult to change.

It's clear from your post that you are a carer who cares best if caring is balanced with some other interests too, and it is important for your emotional well being that you keep at least some of your outside interests going.

Hope this helps
Regardless of the cuts the medical services they are legally required to supply treatment and continued treatment and the best possible.

Your doing great dealing with things and don't think other wise.
You can get a lot of support here at the forum
through your local carers centre
Carers UK advice and help line which is 08088087777 and free number
You can also get advice from the carers UK Web Page

Your not alone in feeling this way most carers feel that way and we all support each other, Talking with other carers at a local carers support group run in the carers centre is useful but the one thing I would suggest is as for down time from social work so that someone can be there to allow you to go do what you want for a few hours maybe once a week to give you a break is useful. Make use of the Carers Holiday break and short break funding which you can get from the carers centre or social works and if you need to talk you love one with you asked for an assisted break so that you get a least a few days were you get to do stuff you want to do.
I highly recommend the breaks and I used the assisted breaks and it worked for me I was there for the person I care for but for three days I had someone there to allow me to go do what I wanted, and for the week they just helped out. They said it was like a break for them on a wage. so everyone benefits from it.
In caring, there can be something like "Survivor Guilt" when looking after a loved one, especially a spouse.
In addition, there is also a sort of "mourning process" when you realise that many of your dreams are never going to happen.

As a widow of 12 years, I know just how much I miss my husband every day, I would rather have a poorly husband than no husband. On the other hand, I know how frustrated he would have been had he survived his heart attack but it left him unable to do any of the things he loved.

I cannot change what happened, and I know he would be unhappy if he knew I'd wasted the rest of my life because he wasn't there.

Your relationship is at a crossroads, and I would suggest that individual counselling to talk about his illness and the effect it is having on your entire lives would be helpful, so you can face things better, together.

As a fellow carer, I know how important it is for you to "escape" your caring role for a few hours, but does your husband ever "escape" from the house and you?!
Does he have a mobility scooter so he can go to buy the paper, for example?
Does he belong to any clubs or societies?
Does he just sit and mope at home? Is he too ill at the moment, or do you think he is depressed?

Has he applied for Personal Independence Payment, both Care and Mobility, or is he not ready to see himself as disabled?
(Just realised you haven't said how old he is PIP is payable up to the age of 65, otherwise Disability Living Allowance.
Hi Leni. I have just read your post.
You say that 'your husband used to do the shopping' (as well as other things). Well have you considered doing online shopping? It's easy to do and the delivery cost is very reasonable.Or could your husband sit at the computer and do online shopping? This would give him a sense of purpose and it would be one thing less for you to have to do.
I recently had to give up driving due to health problems (even though I'm only in my 50's) and to be able to buy all mine and Mum's food shopping online has been extremely helpful.
I really hope that a diagnosis is found soon for your husband. How old is he?
Online shopping can actually work out cheaper than going shopping, as there are lots of offers. I've used both Tesco and Ocado. Preferred Ocado's system to use. Wonderful choice of things I never see in my local Waitrose too. Especially the Magnum Hazelnut and Praline flavour, and the coconut Magnums!! (My treats).
I do online shop. Mostly because I can't carry the weekly shop.It actually makes me stop and think whether I need the items, can check the cupboards fridge etc as I am ordering. Does keep me in check!! Still go to Aldi, as I get hubbies toiletries. The shower help is exactly the same ingredients as Sanex and less than half the price. There equivalent of lynx spray is the same, except not a strong. As the home use it as though it's going out of fashion I'm glad I found it. Also I take him little cakes, like the French fancies, etc. Much cheaper. However, I m so pleased to do online shop. Especially in bad weather.
I didn't realise anyone had answered my post. Thank you.

My husband is 68. He has had to apply for PIP, having been on DLA for a long time. Yes, he's over retirement age, but the rules are the rules, they say. I pointed this out to the DWP - the fact that he's over retirement age - but they didn't know what I was talking about.

He's just been diagnosed with Parkinson's, (think I said this) but that's not his only issue. He is weak and spends the day, as someone said, lying down and moping. He suffers from nausea, as yet undiagnosed despite all the tests in the world. The Parkinson's medication (started a week ago) seems to have awful side-effects that make his primary symptoms worse. He also has heart problems (atrial fibrillation), type 2 diabetes (recent diagnosis), psoriatic arthritis. Because he wasn't eating for a long time (because of the nausea), he's lost a lot of weight. But now he does eat a bit and even gets hungry at times.

He wants me to be there because he wants me to be there, if that makes sense. He doesn't want to be alone, so I've had to make compromises with various activities that I don't want to give up. However, this evening I wanted to go to the cinema for a live theatre broadcast, and he begged me not to do. I feel really upset and angry. Am I being selfish? As for needs vs wants - he says 'I can't do this'; I reply 'yes you can'; and very often he does it.

He's depressed and anxious. The GP booked him a counselling session but he cancelled it. He won't invite friends over, just depends on me - I hate playing a game of 'yes, but', but it seems that I've already thought of things others suggest and he shoots them down.

I think online shopping is a brilliant idea. Do most people use Ocado? Does anyone use Sainsbury's? He's vegetarian (I'm vegan) so we have to shop somewhere that caters for us. I only say Sainsbury's because my cats are used to their kitty litter.

Thank you for being there.
I thought that if you were over retirement age when PIP was introduced in your area, that you wouldn't be reassessed. Has he lost any money as a result? If so, email our Carers UK advice service.

There seem to be a growing number of cases where DWP staff are giving incorrect information. They've made experienced staff redundant in favour of 6 weeks training and a computer system that was out of date before they started using it! (My closest friend used to work for them).
Over state retirement age ?

Am I eligible to claim PIP ?

You may be eligible for PIP if you’re aged between 16 and 64 and need help with daily living activities or getting around, or both.

If you’re awarded PIP before you’re 65, you’ll continue to receive it after age 65. You can still make a claim if you’re working.

PIP isn’t based on your National Insurance contributions and isn’t means-tested, which means it doesn’t matter how much income or savings you have.

If you're 65 or over and have care needs, you should claim Attendance Allowance instead.

AA instead of PIP ?

Best to seek advice from the Carers UK Advice Team :

https://www.carersuk.org/forum/support- ... line-24147