Hi, I’m new here, I’m 64, my Partner is 65, we’ve been together for 22 years, he now has Dementia, I became his Carer 9 months ago, how do you come to terms with the fact that after 22 years you are no longer his Partner, but his Carer?
Right now I am feeling very overwhelmed, I’m struggling to switch roles from Partner to Carer, having to constantly repeat myself because he forgets things so quickly, having to be at his beck and call because he can’t remember how to do things for himself, not having time to do the Housework, or see to my own needs, because I am constantly seeing to his needs.
How do you cope with that?
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hi @hybrid1000 , it is hard for anyone to lose someone like that. It always hard to understand that you are just his carer than his partner and that the dam illness. A lot of people talk to other carers via a dementia group either online or like at a soical event like a coffee morning. you are more than welcome to talk to any of us on roll call or like on a thread like this. There are a few carers on her that can help you more than . all the best
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@hybrid1000 Hello from me. It is a huge challenge that you are facing and it is bound to be hard.
Do you have a local Support for Carers? If so please get in contact with them. They may offer meetings or a telephone befriender - the latter have often been carers themselves.
Do you have any local friends? Family? To be a Carer the first and foremost rule is to take care of YOURSELF. You have a right to ‘quality of life’.
I have been a carer officially since Jan 2013 but probably a couple of years before this I was taking on more and more. To me right now I have all the bad things relating to marriage and none of the good ones such as companionship. I do have a few local good friends. Sadly I had to give up Rotary and Cat shows as husband did not like going to the former and I dared not leave him alone to go to the latter.
I am 63 husband 86.
Unfortunately I have to make a huge amount of compromises to get out but I do get out. Even an hour having coffee at the local community cafe helps me through the day. Sometimes it is very hard to work out if he is really feeling ill and is going to phone the GP or just saying this to stop me going out. I do go to evening events but go at 5.30 and leave at 6.45. TBH I really resent having to do this and no longer like my husband yet alone love him. He insists on coming to the Parish Council meetings and the Book Club which I chair with me and can be very ‘disruptive’.
I would really urge you to have a good think about what might work for you to make your life happier. Dementia is progressive so please start to put steps in place now. The Roll Call is a great source of support. Join it and ‘lurk’ if you wish for a while and reveal as little or as much as you feel comfortable doing. We share our ‘ups and downs’ and there is a lot of empathy and support plus a sense of humor (often black) that creeps through.
You bound to be going through a huge period of adjustment so please be kind to yourself. Counselling may be worth looking into if you are able to get out for regular appointments. You are NOT alone.
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Welcome to the forum. I know money can be a touchy subject, but it’s important to know that until your husband reaches official retirement age he is entitled to PIP which includes an element for help getting around. Claiming after pension age Attendance Allowance would be payable, but that is only for personal care. Once either is claimed, he will be entitled to EXEMPTION from Council Tax. As a working man he will have been contributing to these all his working life. Do you have Power of Attorney? If not DWP have an appointee scheme, so you can manage it on his behalf.
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Hi @hybrid1000 I can empathise with your situation. I am 64 and husband is 69. Three years ago he suffered a stroke - fairly mild, but it meant we had to close down our small business and I became, overnight, his f/t carer. He improved a little then a series of other medical issues hit him - heart failure, collapsed lung, prostate cancer, incontinence, multiple UTIs, very limited mobility, some short term memory issues.
To put it simply - it’s a pile of 
isn’t it? There’s no warning, no training and limited help given. Also there’s no ‘manual’ to consult giving the advice you NEED. However, this place is a source of amazing knowledge and support. We have mostly all been in similar situations . Already you are getting responses with advice so I would suggest you keep asking questions as you think of them. Nothing shocks us on here cos we’ve all “got the t-shirt”.
With Graham I find I am in Carer mode most of the time, which means we have no personal life at all. Friends have fallen by the wayside because we can’t just go out to a pub and socialise, it takes planning and checking access; toilets; time constraints or he is exhausted; too much noise and he gets disoriented. Then you get the friends who are the experts and Caresplain things (that’s a wonderful word!) and think THEY know better and have the answer “just do xyz”…“you hold him back all the time, he can manage” (usually as they grab his arm and throw him off balance…)
I get angry at times as I have no life now. I can’t go out to see friends or do things I want to do without planning. Currently trying to organise a week away for myself. That involves getting our paid carer to step up from an hour 3 times a week to three visits a day for a whole week. Also someone to be a “sitter” to ensure he’s safe night and day. THEN, and only then, can I plan what I might do for that week. I know what I WILL be doing and that’s sleeping and eating food I do not have to prepare!!
Not sure how any of us copes with the situation - we just seem to do it. Someone asked on the Forum “what is your superpower”? and got some answers which were great fun. Then “what superpower would LIKE?” That was even better!!!
Just letting you know you are NOT ALONE.
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I am in the process of getting Power of Attorney, and have been told it should be fully formalized by 1st August, and I have been told about Attendance Allowance, which we can apply for next year, but I haven’t applied for PIP for him, because I was told that it takes so long for them to sort it out that I would be better off waiting until next year and getting the Attendance Allowance instead.
That is the worst ever advice! You will miss out on a huge amount of money!
Get the Pip application in as soon as possible, and it continues for the rest of life including the help. For getting around.
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Ok, I will do that, thanks for the advice.
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As soon as the benefit has been granted, he becomes EXEMPT from Council Tax on the grounds of Severe Mental Impairment. A horrible term, but it’s easy to claim.
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