I am Simon. I care for my partner who has alcohol related dementia. He is in his late 70s and has some health issues.
I am in my 50s and have some health issues of my own but (aftermy triple heart op last year) am pretty much fighting fit.
I believe my biggest problem is simply that i have lost, or am loosing, my partner to Dementia and although i have some friends who are kind i am mourning my lost relationship with Andre. I feel more like a butler or staff to him than a lover and partner and it can just be lonely at times.
I am sure i am not alone.
I am however grateful that after my op i am well enough to care for Andre without being constantly tired. I hope i can stay healthy as i do worry what might happen if i am ill again.
I hope to make friends and share experiences on here. After all, we have a shared need to feel we are more than just a cleaner, cook and bottle-washer. We are important, and what we do, we do out of love.
I am in a similar situation to you as my husband is much older than me - he is 82. He was an alcoholic for many years, and at his worst drank a litre of vodka a day. He has not been diagnosed with dementia but has a lot of other issues and when he had the heamatoma, I was told his brain had shrunk due to the alcohol issues.
You sound as if you still love your partner. I guess my issue is that my husband is non medically compliant and I feel quite bitter because to a degree, he has caused a lot of his medical issues such as the incontinence by not taking the lactulose as instructed for many years.
Struggling to give advice but for me Chairing a Book Club has helped as I do get to have adult company once a month, although he insists on coming too. All you can do is try and claw little bits of ‘quality of life’ back. Do you get any outside help? If he goes downhill and/or your health suffers, you do need some kind of structure in place. I also found having a Carer befriender helps as they have often been carers themselves. I also get a huge amount of pleasure from my cats. I think you have to consider the future very carefully and decide if you wish to go on being a carer, and if you do, what could make your life easier. Maybe help with cleaning?
Hello Simon
I lost my husband in May 2019 to dementia and other health issues. It really was the long good-bye that is spoken of .
Have you heard of ambiguous grief? It’s worth looking up as it gives an insight into the strange loss that’s felt. Sadly he needed to go into a nursing home, I had no choice.
Do you get any respite as it really is needed to enable you to cope.? Been in touch with the Alzheimer’s society?. They advise on all sorts of dementia.
My heart goes out to you as I have a very good idea of the pain and loss you feel.
Thank you both for your replies. It is good to hear from people who know what we are all going through.
Oh yes, I know Andre’s brain has shrunk, his short term memory is shot and he is very repetitive, bless him. He cannot help it but it can be difficult when you have to explain what covid is every day for two years. And making it sound as if it is the first time you have ever explained it.
I feel for you too. Thank you for sharing your experiences, both of you. I do appreciate it.
I have also applied (via my council) to do some voluntary work. Just to get a broader range of people to interact with.
Good Luck with the vol work. If you can meet people and start to feel like a person again Simon, it will help you cope. Isolation is a total nightmare for carers as most do not understand the challenges and limitations we face, unless they have gone through it.
I became an Admin of a Facebook local group back in September and ended up Chairing meetings but now thankfully have another 4 Admins to help me out with social events, as very limited to how much I can get out, with medical app/phone calls and District Nurses. It has really helped put my problems int o perspective by trying to help others feeling isolated and lost and hopefully I can get support at some stage too. Thankfully two of the Admins have both been Carers and hopefully once I get to know and trust them we can offer support. One totally gets the worry of going out and wondering if husband is going to use the grill and leave it on. Thankfully he cooks less and less now and usually late afternoon.
I agree with BB - get a reduction in Council Tax if you can. The money can be used to pay for help in the house maybe?
Please think about a Carer Befriender there may be a waiting list. I got mine through my local Carers organisation but the local Hospice is also offering some sort of telephone support. They do vary and I have had several since 2013, but most have been Carers and can help you ‘think outside the box’ as one does get terribly dragged down by day to day issues.
One last thing, this Forum taught me that one cannot be a long term carer without looking after yourself and I would literally beg you to take this on board.
Thank you bowlingbun. I must look into Attendance Allowance, although i did apply once before but it was turned down. I would have objected and taken it further but it was when i was ill before the triple heart bypass and it was another battle that i just didnt have the energy to fight. I will look into it though.
Thanks for saying i should look after myself helena. I will give that advice right back again, it sounds like you have taken on an awful lot and i hope you are caring for yourself too.
But here we go. New year and new opportunities, thats what i say. I am starting my Welsh lessons again and giving the house an early spring clean. After all, if i am stuck in the house a lot i might as well make it tidy!! Hehe.
A positive mental attitude isnt always easy but it does help. I know i am lucky to have a partner that loves me, a home and friends. There are many people who have a lot less.
Plus being a carer is akin to a super power in my mind. I have coped with more than i ever thought i couldand got through it. Maybe we should all start wearing capes! I think you are all magnificent anyway. Xxxxx
Beware the idea that caring is like a super power. Don’t try to be Superman when what you really need to be doing is yelling help! The more help you accept the longer you can care. Think about jobs others can do, like gardening, domestic chores. Think about avoiding other jobs altogether, by having a dishwasher and tumble dryer. Is the house disabled friendly? Walk in shower? Downstairs toilet? I was nearly killed in a car accident in 2006, unable to walk properly for years. It’s tough admitting there are some things I’ll never do again, but flattening all the borders in the garden has made everything so much easier.