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dementia journey - Page 11 - Carers UK Forum

dementia journey

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167 posts
’ve just spent an evening with family watching a movie and for a while I forget Bridget. But they’ve gone home now and my thoughts of Bridget crowd back in and I remind myself with photos of her taken in her care home

My feelings, right at this moment, is seeing someone who I used to know . I don’t remember her touch, her voice, the feel of her hand and the longer this lockdown continues she’ll become a stranger to me and I’ll only have memories to cling to. It’s becoming like she was never here in this house but I have all her clothes and personal stuff to remind me.

I can’t continue for ever like this because every time I visit it’s either she’s asleep or she has little concern for me being there. So what do I do? Any suggestions because I don’t want to lose her but I can’t keep her. She lives in a different world now which is driven by dementia and one where she has forgotten me as her husband.

When we have someone around each day we take for granted their presence, sound and they become us. And when we love we are one.

That’s why I’m a miserable. I do my best to hide it but it festers under the surface constantly.
It’s 22.00, nearly bedtime so at least I know she’ll be in bed and , if asleep , calm and anxiety free.
So Peter, did you actually talk to your family about Bridget?
Oh dear, I’m all over the place this afternoon. The only comfort I can get now is writing it down. I’m balling my eyes out and I’m so tired of it all. I went to see Bridget this morning and as usual she finds it impossible to relate to me and mirrors a wave and walks away.

what have we done so wrong that we deserve this misery every day? Dementia has taken everything . I just touched a souvenir from our past holiday and it was like an electric current of remembrance when life was good and we just had each other.

And then that leads me on then to other memories of Bridget trying her best to write a card with very limited vocabulary. Such a sad memory of struggling but she still managed to write “you are the lovely man”.
What do we do when we are lonely with our memories and regrets and need immediate comfort? I understand why some just can’t go on anymore but I’m not sure if I’ve got it in me to end it. I still need to be here for her otherwise I’m abandoning her. Who knows what I will do when she dies?

All my Love to you all from misery guts
Hello everyone

Again, for some random reason, I was very upset this morning. Just the absolute stillness and quiet of the house reminds me how on my own I am. I took the car into get its service this morning. I have to have it otherwise I can’t get to Bridget easily. Buses are rubbish down here. I’m quite good friends with the manager there and he asked after Bridget.

It only takes the smallest of innocent remarks to tip the balance between I’m ok and I’m upset. I was asked “how long has it been now” and I reply 2 years this August. And then he said “ will she be coming home” and my heart dropped, and I said no, not now. So when I drove up to my house I imagined bringing her back , saying “ you’re back home“ walking up the path together and we can start again. But I look to the empty passenger seat where, for so many miles, she would keep me company.

This is a minefield where you never know if you going to step on something that will ruin your day. Trouble is we never know where these minefields are otherwise they could be avoided.

Part of the course I'm afraid.
People either avoid you altoghther, which I personally think is worse. The mechanic asking you about Bridget means she isn't forgotten. It's very difficult for others to know what to say, I'm sure you have been there yourself? Others, no doubt have suffered some sort of emotional pain in their lives. I always used to say thank you for asking, I was grateful for that .
Try to end things in a more positive way.
Have some "stock phrases" which you use repeatedly.
For example:
"Is she coming home?"
"I'm afraid she needs too much care for me to manage now, but it's a very good home and they look after her really well."
You can't complain that no one talks about Bridget if you go to pieces every time someone mentions her!

When I was asked how we were managing after my husband died, I would reply "muddling along as best we can".

With the family, try to remember the good times, the funny times, the good days out. Keep the happy years with her alive.
I know how tough it is, but we often involve my husband in conversations, and give ourselves happy memories. Being married to a man obsessed with machinery was very unconventional. I could write a book on "scrapyards I have known"!
Have you thought about writing a life history for your family? It might help you, and give them something to remember of a life well lived.
Finally, try putting on the TV, radio, or music so the house isn't always quiet. There are all sorts of interesting programmes on TV, especially if you have Sky or similar.

Just sending a ((hug)). The issue with dementia is that you grieve for the person long before they die. You are going through a grieving process and tragically dementia gradually takes away the person while they are still alive. That may sound harsh but I went through it with my mum. I know that I felt that I had no place left in the world; everyone else seemed to be getting on with their lives while mine was shattered.

I think counselling would help. In my own case anti-depressants also took the edge of my grief and enabled me to deal with the situation on a day-to-day basis. A small thing that helped me was sudoku. Sounds ridiculous but I had to concentrate and forget about mum while doing it.

You ask how you would cope after she dies. You cope the best you can, one day at a time. I too dreaded the day but in fact in the last years of my mum's life, I was already alone in many respects. You act along with everyone else and you forget the pain maybe for 10 mins, next it is one hour and maybe the next time it is two hours. You never forget but even now, five years later, I know that the best way I can honour my mum's memory is to be happy. You too will be happy again.

Keep talking to us. We have all different caring situations but we all feel guilt, despair etc whatever the situation.
I echo what Anne says above. I spent most of last year grieving for my Mum as she deteriorated from Alzheimers and finally died at Christmas. When that happened of course I was sad but I also felt relief that she no longer had to suffer. The times I would drive home from her care home and cry and had to pull over in the car. The nights I hardly slept because one ear was always cocked for the phone. The last couple of months I used to sit with her and every 10 minutes had to go and have a cry in her ensuite as I didn’t want to cry in front of her. It was really awful so I do understand how Peter is feeling.

I still think of her every day. Just this morning I was doing a supermarket shop and remembered I always bought her nice squash, fruit jellies, steradent, body spray etc.

Peter, if you don’t mind me saying you are never very forthcoming about whether you talk to your family about how you are feeling because I have asked you several times.
My grief keeps me awake at all hours so I’m tired

Bridget’s home is 15 minutes away so I’m fortunate in that respect. But it wasn’t a choice, I didn’t choose the home, it was forced on me by circumstances on that last day she was here. No other nearby home had a room and I was desperate so our Social Services said try this one and it all turned out Okay. Bridget was trying to break the windows in the end wanting to escape to live with her parents.

It was awful and she left this house on the afternoon of 24th August 2019 tamely getting in their car and being driving away and suddenly I was made lonely and distraught. How I got through the first months I don’t know because our local river looked very inviting. I felt I just couldn’t exist without her.

Now it’s not as raw. Funny thing is that I don’t want any rawness to subside as it’s the glue that keeps me to her. I don’t want to “get better” as others want as I don’t think I deserve it. Does this make sense?

I evade or steer clear of stuff . Cupboards full of nice clothes, expensive underwear I bought to try and encourage her to get herself clean and change her
clothes ( never worked) , jewellery, perfume, oh the list goes on. I don’t go into “our bedroom “ but sleep in another one. She has ample change of clothes at the home because they can’t manage too many dresses. Dementia means she’s dressed in pull up pants now, another indignity brought on by this cruel condition. But she still has her style and she’s the only woman there that has dresses and wears red tights. My beautiful Bridget brought down to this.
One day I’ll do something with her belongings but I’m in no rush

Take care, always here.
Penny, that sounds very familiar.

It took me over a year after my mum's death not to panic when the phone rang. Previously it was always bad news. Even now in M&S I can't buy the jellies with real fruit in them as that is what I fed her in her last weeks when she was refusing to eat.

Peter, I agree with Penny that your family must too be going through some of this even if they put a brave face on it. They may be able to help you now.

I do understand the feeling about not wanting to "get better" but you do need to be the best you can be for her sake. Your job now is to ensure that she gets the best care she can do in the care home and keep them on their toes. You are her advocate and you will notice things they don't as you are the expert. No-one can take Bridget away from you.
167 posts