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dementia journey - Carers UK Forum

dementia journey

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167 posts
hello. I’m peter and my wife Bridget has been in a care home now since August 2019

She has dementia, doesn’t recognise me as her husband and i’m finding it extremely difficult to come to terms with all i’ve lost. She’s mobile, walks about, generally fit but because of the dementia sees me but soon is distracted. I take flowers, look at her through the window. Covid restrictions allows me nothing so i look and see a woman who was once my darling wife ( she’s 74) who seems content. it’s me left with the memories and how this cruel condition has wrecked our marriage

I’m lonely for her, even though towards the end all she wanted to do was escape the house and i was forced to make care home arrangements. Such an intelligent, bright, forceful woman reduced to a almost childlike personality. The care home is great and i’ve no complaints. At first i wanted her back just to have her company but i know it takes more than me to keep her safe and healthy

I don’t mind admitting that i often cry at the slightest reminder of her or if i see her and i just sit in the homes car park after a visit. I love her so much. It hurts all the time and i lurch from Why us? to Why me? If only this and that and i should have done more. I don’t care for her directly anymore and i miss that caring role ( although it’s nice not being woken up at 2 in the morning). i need to care for her but i can’t so i do all i can by regularly visiting, taking flowers, chocolates, fruit and showing appreciation to the wonderful staff.

Peter
Hi Peter,
welcome to the forum.

So very hard that your wife no longer recognises you. It sounds like you have done your best - found her a good care home where she has team of people to look after her; visiting her (even though due to Covid, the conditions are far from ideal); overseeing her care and taking her gifts. You might not be doing the day to day stuff but you are still her husband and carer.

Demential is very cruel. I don't have experience of caring for someone with dementia but I have followed the stories of others on here.

Sending you cyber support,

Melly1
Hello Peter
I have an understanding of your situation. My husband had vascular dementia along with other health issues. I always felt it was a long goodbye. He was in a nursing home. I was in a better position as I was able to visit regularly.
I wrote about my experiences on my new to dementia journey thread. Probably would be too much for you to read as I joined in March 2016.
I would advise that you take care of yourself. Believe me I know how difficult it may seem. However it's essential.
You have and are doing your very best, in very difficult circumstances.
My heart goes out to you
Thanks everyone for replying so quickly. Just this minute had a phone call from the home to say has fallen and they found her on the floor. She’s ok but this is the second fall in two months. It reminds me everyday of the delicate nature of her existence and I’m in constant fear of the next fall being down the stairs or her breaking something.

And I’m not there to help, comfort, reassure just here with all the imaginings of what might happen. I feel sometimes my heart might break with it all. Every time the home phones me my heart sinks.
Peter
I remember so well the sinking heart when the telephone rang. I can't tell you that it's something you get used to, but somehow you learn to adjust. Have you other family members?
I’m near my daughter but Bridget is her step mum so not the emotional connection in blood. ( not that that always follows!). I’ve a good relationship with my daughter and Bridget’s children but apart from being concerned there’s not much else they can do. And now Covid stops travel to allow emotional mixing and support. Basically I’m on my own with this and I don’t feel I’m that strong a person, just a bloke lurching from one situation to another

I also post on the Alzheimers forum and have counselling once a week. I now have you so please be patient.

Peter
Being on your own allows you to form a support bubble with one other household. Could your daughter be your household support?
I hope I am not coming across as impatient? That is certainly not my intention. I understand only too well the feeling of devastation, watching the person you love deteriorate with this cruel disease.
The forum was, and still is a godsend to me. Gave me strength. Keep posting and vent if you need too. No one judges.
My daughter is my bubble and lives about 30 mins away. But sometimes I want to be alone with this as it’s easier to be miserable and cry in private. I’m going to visit after lunch just so I can see her to reassure myself that she’s ok.

Here’s the thing. Is it so bad and selfish and hard hearted and terrible to want all of this to stop? I’d be in agony if she died but at least.... sorry can’t write more
Definitely NOT selfish!
My husband was not the man I married, and would have been mortified if he had realised the person he became. Occasionally his dry sense of humour shone through, which was was very comforting. I miss him very much, the man he was before the dreaded dementia set in. We had been married for over 50years. A young marriage and we were happy weathering any storms.
Please don't think you are selfish. You are not. You still care and love her.
Thank you for your encouragement and understanding ❤️
167 posts