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Confused, you may well be! - Carers UK Forum

Confused, you may well be!

Tell us a bit about yourself here.
New here, yes, although my official carer is a member already. So why am I here? True, I am wheelchair bound and in pain most of the time, have OA, RA, Fybromyalgia and my surviving kidney is on borrowed time, DLA high rate everything. My partner is my carer, and my daughter lives here too, so life should be OK really, or so you would think.

It was. Carer is an alcoholic, OK to a point, but now has early onset alzheimers according to my GP without seeing him, has tia mini strokes necessitating ambulance and hospital aid to little resolution, and him in total denial so no help from outside sources.

Then there is my long stay daughter, breath of fresh air on good days. On other days a 25 year surviving heroin addict with schizophrenia and other mental and emotional problems can be a handful of trouble for me to navigate. Thankfully she has all that the caring services can throw her way, although none of these good folk come near me, not their remit it seems.

Any way being both cared for and caring, what I need to know is where can I fit into someone's realm of expertise, given I have no transport of my own to go far, and have to hide my DLA status to even attend my hospital appointments and am almost a prisoner in my own home.

If you have managed to read thus far no, this isn't made up, it is just a basic descriptive of life at 61, with a genuine plea for help, direction, before I get completely swamped in the mire.

Have a care(?!!), I am real, and I am sitting here near to tears.
I'm not in the least surprised your near to tears. I'd be howling in anguish in your situation. WHAT a lot to cope with......

Sometimes life really does seem to kick us in the teeth, and hard - and it's certainly done that to you.

I'm not sure what to say right now - but there must be SOME way to 'improve' the grim situation all round, for all of you. Let's see what collectively the forum members might come up with?

If nothing else in terms of 'practical suggestions', I do know, hand on heart, you will find here a shed load of sympathy, understanding and emotional support. We all 'vent' here from time to time, and we all know the 'impossibility' so to speak of the care situation, whichever side of the 'equation' we are on - you, are a caree AND a carer, and that is very hard indeed.

If nothing else, hang on to the thought that here, on the forum, you are 'among friends'.....

Kindest wishes, if nothing else more helpful right now alas, Jenny
Hello Jan
What a difficult emotional time you are having. I feel so much for you.
Has your husband had a scan to actually establish he has suffered TIAs? It would be very helpful to know as a starting point. Do you supect an onset of dementia, because of memory loss, odd behaviour etc from your husband? Im asking this as I'm thinking you could telephone the Alzheimer's and/ or the stroke society's. They are very supportive usually, and you do need support! It's very hard, but you do need to consider your own needs.
I'm sorry this may not seem to be very much practical advice and others on the forum may have different advice.
Please keep posting.
Aw, not confused, you have described your difficult situation very well. You have a lot on your plate and need some help.

It sounds as though you don't have any outside help a the moment for yourself? Perhaps now then is the time to have a Local Authority needs assessment for yourself AND your partner? I know this may be difficult with your partner if he is in denial, but you could at least get one for yourself?

You mention being trapped at home? I wonder if there are any charities in your area that provide transport for those with mobility needs? There is a fantastic one where my parents live that provide the service for a small fee (much less than a private taxi) and have trained drivers to help with wheelchairs etc. They help get people to medical appointments and also social activities. Perhaps see if there is something similar near you? Maybe ask social service or your GP? Perhaps then you could access some support groups for your own conditions or for Alzheimer's?

I really feel for you and I hope that you get some help with your difficult situation soon. xx
In our area we have something called "Dial a Ride" it is a scheme that provides transport for old or disabled people, it is like a Taxi service.
Have you something similar to that in your area?
Welcome to the forum. Frankly, the only person you can rely on, in your situation, is yourself. Either you bury your head in the sand until the crises overwhelm you, or you start to make your own situation as firm as you possibly can. I'd strongly recommend some good counselling for yourself, to work out if you want to stay with your partner, and whether you can cope with your daughter living there.
I don't understand why you have to hide your DLA status in order to attend hospital