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dementia journey - Page 14 - Carers UK Forum

dementia journey

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167 posts
Here’s a brand news emotion brought upon by a conversation i’ve just had with an Admiral Nurse. Just put the phone down and feel i’ve gone back several steps. I was talking to her about how i felt today and trying to help me she suggested that as dementia sufferers are better managed, in some cases, they can return home. How would i feel about that?

God, my heart missed a beat, as i’m only just adjusting to life without Bridget. To have her return here would be heaven if she was cured of dementia ( as if it was some condition that was curable) and we would pick up our lives again. But to take the chance of caring for her now she’s in the later stages of dementia and what else would develop and to lose her wonderful care home, well, it’s out of the question. My life would be in turmoil again. But, of course, i’d love her back in an ideal world. So i ask myself “ am i that desperate enough to have her back under any circumstances?” So i’m put in a quandary that will stay with me for the time being and upset me.

When Bridget began to display symptoms we lived with it, coped day on day and gradually I got used to it, then it built up to the point where she needed to go to the home. I guess the nurse, knowing my distress at losing Bridget, was suggesting something that could be an option. But it’s an option that very troubling.

Wish i’d never phoned now!

peter
I bet you do Peter! Does the admiral nurse realise it's not an option. That you had no choice? It wouldn't be fair on Bridget. She is in the home now, and from what I gather is content in her own way. How confusing for her to be moved back to you now. Then how would you cope, really? You wouldn't have your Bridget back as you want her. Your sentence, " needed to go in a home" tells you all. Not what you wanted, what Bridget NEEDED.
For what it's worth, many a time I walked round my house, thinking how can I get hubby home, but just wasn't possible. Don't think I would have been encouraged to anyway.
I really feel for you about this.
Thank you for your advice on this and I love you all for the support given to me. Many times over the past 3 years I’ve felt it’s all hopeless and truly I’ve felt little point in continuing. But there’s been, and still are, so many people willing to give their time to just be there for me. So thank you.

I’ve not always been there for other people though, in as much that I don’t always follow posts. I believe as things get better ( when !!) I’ll have more emotional space to support others.

I believe I’ll be here for all the foreseeable future and I’ve been at the coal face of this dementia enough now to experience most things so there is plenty of time to help where I can.
Peter
That nurse should never have said that!! Incredibly stupid.

Have you bought a copy of Starting Again yet?
Moving on is not an overnight thing, but tiny baby steps.
Develop a post lockdown plan, and insist to yourself that you'll do it, not chicken out at the last minute.
Now the days are getting longer, and the weather milder, challenge yourself to do one new thing every day. A different walk, a different recipe, a different shopping centre.
You can't change things by sitting feel guilty for something that you never caused, or feeling sorry for yourself for a future you have been robbed of.
I'm sure there were some things you liked and Bridget didn't, now is your time to revisit those ideas.
Book a couple of nights B&B somewhere new, walk somewhere new, talk to new people. If you don't like eating alone in a cafe or restaurant, take a book. Try eating out in garden centres.
I thought I’d really turned a corner this morning but it’s not to be. C S Lewis said that “sorrow is like a long valley, a winding valley where any bend may reveal a totally new landscape “ The good weather here has highlighted the fact that you I’m on my own and when we used to sit together just enjoying the sun. You know what I miss most? It the noise of someone else being here, moving around, their body being here and there, asking and answering questions.

I have distractions, sure, but not enough. I almost wish I had a bad cold to suffer with so at least that would keep me occupied. I so longed for peace when she was here in those last days and now it’s peaceful here I hate it. Is loneliness like this for everyone? How can some say they enjoy their own company?
I must find something to do otherwise I’ll just sit here feeling sad.

Peter
Peter, the first step is the hardest one. Get out and enjoy the sunshine. I'm taking a break from a job in the house that's easier when the sun is shining, but I really want to be out in my garden.
Do you have a bird table? A cat or dog for company?
A cat or dog would be good. It’s just a matter of finding one these days. I had a cat who was a little darling and extremely friendly and he died one week after Bridget went into the home. I think he hung on for me🐈
Peter,

Brilliant you are coming round to the idea of a pet! The RSPCA are rehoming pets again now. Have a look at their website.

Melly1
Here we go again. Same old feelings when I leave after a visit. You must be sick and tired of it as much as I am.

This time I was a few feet away from Bridget while she was have her tea and biscuits looking at her through the window of the sun room. I’m just trying to get inside her world, her old familiarity if you like, to somehow be with her more intimately. So I linger longer outside the window just looking and eventually I can’t stand it anymore and say to her “ I’m leaving now, I’ll be back tomorrow “ and she says “ lovely “ and I wave and she waves. By this time I holding back the tears and I walk away.
I’ve sort of realised that there is nothing anyone can do to radically change anything for me. We talk on the Forum, I have my counsellor, friends are genuine but limited in comfort. So I’m left just with myself to fall back on and I’m struggling all the time. It’s so impossibly hard.

I really believe once Bridget goes and I won’t have to care for her like this then my life won’t have much meaning. But I’m a coward so I don’t even have the comfort of escape.

Peter
Don't allow yourself to get in this state any more. Promise yourself you are going to do one new thing every day. YOU are making yourself miserable, so sad when it's such a beautiful day outside and you have so many blessings to count.
167 posts