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Just started my journey - Carers UK Forum

Just started my journey

Tell us a bit about yourself here.
Hi, I'm posting for the first time, and am new to caring. My husband was diagnosed with minor cognitive impairment 18 months ago, and then with bowel cancer a year ago. He has undergone major surgery, chemotherapy radiotherapy and is on chemo again for another few months. Its been a tough time, he's lost so much weight and yet manages to keep relatively up beat. We are optimistic about the cancer, but his cognitive ability seems to have deteriated rapidly. His memory is now so poor that the gp has referred him back to the memory clinic, query dementia.
The awful thing is, that I am finding it almost impossible to adjust or accept the changes in our relationship. We are coping, just, but the harder it gets, the more guilty I feel for how I am. I know that he will not get better, but my head just can't get round it. Plus of course the stress of becoming the main, only, home manager, factotum, communicator.
Thank you for letting me join you all, perhaps I will learn acceptance from wiser more experienced carers.
Hiya and welcome. I cant really offer much advice as I'm new to this as well, about a year now but just wanted to say hi and let you know, you are far from alone. Love and hugs from me to you x
Stella, my situation is different to yours (it's my son I look after rather than a partner) but I still find I have trouble getting my head around it all and it's been ten years now! It's a rocky road, lots of ups and downs, emotions, my goodness, I think you go through them all and back again. I find it helps me to focus on small chunks rather than the whole big picture, which scares the bejesus out of me, and I've had to try to learn to let go of what I think I ought to be doing/feeling/experiencing and try and get on with what's actually happening. I found the change from what I expected life to be like and what it actually is so hard to get to grips with and I can't say I'm deliriously happy but I'm managing to find other small ways to make life more like living again, if that makes sense, even if it's just really enjoying a latte in a nice café when my dream was to travel the world. I think the biggest thing is to be really kind and supportive to yourself and not to feel bad if you want to scream, shout, call people names, cry or just hide under the duvet. It's all very normal and I think we give ourselves too much pressure thinking we 'ought' to be miraculously coping with incredibly difficult situations.

I find there is always someone on the forum that has been in whichever shoes you are experiencing at any given time so it's always worth posting, even if it just makes you feel like you're not the only one :) xx
Hi Stella, welcome to the forum. Acceptance is a long road!!! Has your husband had any help from Health or Social Services? Have you had a Carers Assessment? Any hospice/MacMillan support?
Hi to all who took the trouble to respond to my cry. Sorry I've not been back on here since and I'm shocked to discover its been well over a year. Mum who cares, you seem to have covered everything feeling I have and nothing has changed this year. Except my husband now has a definitive diagnosis of vascular dementia and alzheimers. I feel further down the road regarding understanding the limitations on my life, but no nearer acceptance. If you folks are still about I'd love to hear how you are getting on.
Stella, what support, if any, are you getting at the moment?
Has your husband had a Needs Assessment from Social Services, and you, a Carers Assessment? Have you claimed Attendance Allowance (assuming he's over pension age?)
Has anyone told you that he is now exempt from Council Tax as he has "severe mental impairment" (contact your local Council who issue the CT bills for more information).
Are you in touch with the Alzheimer's Society, who actually deal with all sorts of dementia type illnesses.

It's very easy to fall into the "I'll carry on as usual" but that only lasts for so long, before you get tired, exhausted, lonely and irritable. Furthermore, there's only one of you doing things around the house, not two. And the other one may be creating even more work than ever!?

In the next few weeks, gradually write a list of everything you are doing. Work out what can be scrapped totally - remove garden borders which are job creation schemes; work out what someone else can do - a gardener to mow the lawn perhaps; a domestic help to do the jobs you hate most; giving up ironing by getting your husband to wear polo shirts rather than woven shirts; and use a washer dryer or tumble dryer and a dishwasher.

The aim is to find some "me" time to relax in, have a bath, chill out, or go for a walk.