Can’t cope

[Bevhar]

I have days like this. It’s hard to lose a friend and partner. I really don’t recognise my husband any more & I miss him.
However I just try to get through the tough days, especially when I’m feeling ill, and try my best to be kind to myself. Then there are not so bad days when I do feel joy again & refill my cup for when the bad days come.
Sending sumpathy & virtual hugs.

Thanks so much Today has been a better day x

 

[Bevhar]

Hi, I know exactly how you feel. I’ve been coping with my husbands Vascular Dementia, but I caught a flu virus with sinusitis a few weeks ago and it was awful. Despite feeling like hell, I still had to arrange food for him etc, when all I wanted to do was curl up in bed and sleep. I did lie on the bed some afternoons to ease the pounding headache and he would come up and ask me when I was coming downstairs. Just leave me alone! Having no one to even make you a cuppa is hard when you’re poorly. It made me resent him and all the stupid things he does and I got very bad tempered with him and we ended up shouting at each other. I cried a lot.
Now I’ve recovered I don’t feel so angry anymore, but I’m dreading the next time I feel unwell. I have severe osteoarthritis and am disabled myself and I sometimes wish this person who has invaded my husband‘s body woukd just go away. He was my rock and I was his, but I’m crumbling under the pressure of it all. 💗

I’m so sorry to hear this Yes my husband has always been my rock I now need to be his I have bad arthritis I had a knee replacement last year & need the other knee & hip replacing but I really don’t think that will happen As the recovery is quite a few weeks I know my husband would be a lot more patient if it was me with Alzheimer’s I always feel so bad after I’ve be impatient sending you a hug Hope your feeling better now

 

[Bevhar]

Yes @Bevhar the biggest change in life as a carer for a PWD, in my humble opinion , is that I can no longer talk with, debate with, argue with, ask opinions of my OH. It becomes living alone and apart together.
Yes, you miss the person you've lost - this called anticipatory grief. Some years ago I took some sessions I was offered with a counsellor through the Local Authority Adult Social Services team. It didn't clear everything but did help me get to "acceptance" of the situation, the fact that my life virtually ceased, and my life became the life of my OH. V difficult. Hence this little rant.
I found myself listing all the things I missed, like going out together for a meal, or to friends, or to the theatre or concerts. No holidays. No sharing of information, interests, feelings, etc.
Then worse still, the realisation that there is no help for carers.
Sorry if all that is a bit of a downer, but I believe in being straight and saying it as it is. We all wish it wasn't so, but it is as it is, warts and all, or rather toileting problems and all.
My OH can no longer say more than a few words together, as she then goes into just sounds and incoherent talking, she can't handle cutlery through lack of co-ordination and I have to feed her food and drink.
What a life - and that's both of us. In addition the children have lost their wonderful mum, the grandchildren have lost their wonderful grandma, etc, etc.
Best wishes and a virtual hug @Bevhar

That’s it exactly my husband is very early stage so we still get out & about I think maybe acceptance is what I need as there is no other way I’m trying to see if I can find out about counselling for carers x

 

[RM3]

Aww - what a lovely message back Bev. I do care and I feel that I am potentially not too far behind you. You are not wrong, like you, my husband has been the love of my life for 35 years (34 of them married). I am trying to pick out a handful of particularly ‘special’ memories of my husband, so that I can draw on these if and when needed.
We are having a lovely holiday thank you. I am juggling myself between my husband and my dad but managing it ok and managing to feel content.
It’s nice to hear that you have been out with a friend and also enjoyed some family time. You sound blessed in that department - as we are.
I can’t remember who said it (I think in this thread further back) about taking time and doing things to refill your cup. I have taken that on board - I thought that was a really good point.
Take care Bev and always here. Thanks, Rachel x

 

[Bevhar]

Aww - what a lovely message back Bev. I do care and I feel that I am potentially not too far behind you. You are not wrong, like you, my husband has been the love of my life for 35 years (34 of them married). I am trying to pick out a handful of particularly ‘special’ memories of my husband, so that I can draw on these if and when needed.
We are having a lovely holiday thank you. I am juggling myself between my husband and my dad but managing it ok and managing to feel content.
It’s nice to hear that you have been out with a friend and also enjoyed some family time. You sound blessed in that department - as we are.
I can’t remember who said it (I think in this thread further back) about taking time and doing things to refill your cup. I have taken that on board - I thought that was a really good point.
Take care Bev and always here. Thanks, Rachel x

That’s brilliant your having a good time Yes it’s definitely so important to still do nice things together My friend is also called Bev she’s always there for me and I her She sent me a lovely message after I’d seen her Enjoy the rest of the holiday I feel I know you from your messages We will be 45 years in August Don’t think he will remember but I won’t moan as he’s still an amazing husband Just confused & forgetful bless Him sending a big hug xx

 

[Mustang66]

I was just like you. over 10 years down the line I often find myself trying to think of something positive to say, but I can't . At first I went through an angry phase, I wanted to shout from the roof top's help! I could not accept not being able to do normal things together, like holidays, even going shopping etc., so acceptance that none of this was going to happen was key for me. It is hard. I usually try and remember this is an illness, some people get cancer etc., some people get dementia, he now has both.
Find out where the support group is in your area as always helps to talk.
Remember your well being is so important, I know this too well.
My empathy & love for him remains the same.
Stay strong, I wish you well x

 

[sdmhred]

That’s it exactly my husband is very early stage so we still get out & about I think maybe acceptance is what I need as there is no other way I’m trying to see if I can find out about counselling for carers x

Hope you find a good counsellor. Maybe your local carers organisation will have some info. Others have posted that having someone wiht experience of dementia is helpful. If you’re happy with online counselling I know a site where you can browse. Unfortunately counselling is fairly pricey these days 😢😢

 

[Bevhar]

I was just like you. over 10 years down the line I often find myself trying to think of something positive to say, but I can't . At first I went through an angry phase, I wanted to shout from the roof top's help! I could not accept not being able to do normal things together, like holidays, even going shopping etc., so acceptance that none of this was going to happen was key for me. It is hard. I usually try and remember this is an illness, some people get cancer etc., some people get dementia, he now has both.
Find out where the support group is in your area as always helps to talk.
Remember your well being is so important, I know this too well.
My empathy & love for him remains the same.
Stay strong, I wish you well x

Thank you so much So sorry to hear your partner has cancer as well

 

[Bevhar]

Hope you find a good counsellor. Maybe your local carers organisation will have some info. Others have posted that having someone wiht experience of dementia is helpful. If you’re happy with online counselling I know a site where you can browse. Unfortunately counselling is fairly pricey these days 😢😢

Thank you I’m going to a carers group so will see if they can suggest someone