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New to dementia journey - Page 28 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
941 posts
(((Hugs))) to you Pet my personal opinion is i don't think you ever get used to this journey so all things that come along at different times is yes just like starting that new Dementia journey again and again probably not what we are wanting and hoping but i do think if we can possibly get used to this happening we can cope in a way fingers crossed however as bb says try to be kind to yourself :) Take care lol xx
850000 living with dementia in UK. And the future Stats for younger diagnoses increasing. Yet we feel alone.....because our carees are as unique as we are.
I opened a new thread this morning, mostly about dementia care. Maybe between us we can add ideas on how to soothe the way. Btw, I might come across as arrogant in it.....don't mean to. I think I called it The Charlston. A bit of offloading on my part plus general tips.

If I can offer any suggestions any time just ask. I am NOT an expert by any means. Don't think there any experts really. Caring for our loves ones takes a lot of thinking on our feet. What works one day will be totally inappropriate another. Likewise, changes by the hour. And we also need physical strength to survive. All I offer is a Hindsight view. Which may have value. Xx
Thank-you DR. As you say everyday is different. Today, hubby had it in his head that the car was in the river?! I said it's not your car darling. Yours is safe, it has the alarm on . Then I chanced saying I think youve been dreaming. Reply " I wondered that". Then I changed the subject. Another day, he may not have let it go. So, I try to be one step ahead. Not always easy. Unfortunately, he just doesn't want to go out of his room. In his mind, he's been all over the place. I get some comfort in him thinking that.
By the way, I had to sell his beloved car.
Pet66 wrote:Thank-you DR. As you say everyday is different. Today, hubby had it in his head that the car was in the river?! I said it's not your car darling. Yours is safe, it has the alarm on . Then I chanced saying I think youve been dreaming. Reply " I wondered that". Then I changed the subject...
By the way, I had to sell his beloved car.
Pet, my Dad was the same about his car - would sometimes fret about where it was so I said it was safe in the garage, ready for if he gets well enough to drive it again. That seemed to pacify him.

Sometimes he would say he wanted to buy a new car and I'd ask him what make/model he had in mind, then just generally discuss cars for a while until I could change the subject. Obviously I couldn't tell him the horrible truth, that he'd lost his licence years ago and would never drive again. There aren't many situations where lying is the right thing to do, but when dealing with someone who has dementia it seems to be essential, for everyone involved.

Oh, and referring to Jenny's recent post to the person caring for her elderly mother AND her sister's children for 3 days a week - totally agree with the advice given. Sister seems to be getting off rather light - time to take a firm stance and set priorities I think.
Visits of late have been manageable. Usual confabultings. I feel maybe Im learning to manage? Some one asked me if I'm coming to terms with hubby's situation. I won't ever come to terms with it. Still that feeling of ' can't wait to see him'. Then after a couple of hours or more I want to run from seeing him the way he is now. Im sure lots of visitors feel the same way.
This ever revolving door.
Just having a woe is me moment.
Today has been a weepy day for me. Felt down yesterday as hubby seemed in decline. Overwhelmed me today. Luckily my older and younger grandsons turned up unexpectedly whilst mom and dad took middle one to play football. I couldn't remain in the sad mood. Wouldn't be fair. Deep down it was hard. Thank God for my grandchildren! Too be expected. The feelings of grief. I do understand that, but it's difficult whilst in the thick of it again.
At least I can put my feelings on the forum.
When I lost my OH it felt like a toddler learnung to walk. Going on OK until I "tripped". Just have to pick yourself up, dust yourself down and start all over again, to use the words of a song. Just learn to recognise a bad day and make allowances for yourself. Hot bath, cocoa and an early night might help you get a better night's sleep and hopefully tomorrow will be a better day.
Thank-you BB. Helps that you understand. I've been having cocoa each night ( never used to). Am sure it helps.
Pet66 wrote:Visits of late have been manageable. Usual confabultings. I feel maybe Im learning to manage? Some one asked me if I'm coming to terms with hubby's situation. I won't ever come to terms with it. Still that feeling of ' can't wait to see him'. Then after a couple of hours or more I want to run from seeing him the way he is now. Im sure lots of visitors feel the same way.
This ever revolving door.
Just having a woe is me moment.
Pet - our situations are slightly different as it's my mum with the dementia. She's 90 and I'm trying to hang on to her at home for as long as I can, but I very much relate to your sentiments. I will never come to terms, I don't think, with what happened so suddenly just over a year ago, even though she was 89 and I was wondering what route her life would take, was sure that something serious was 'about to happen', but never expected this.

But, I am in a different place now. She is no better of course, but I think I have just got used to it. Not sure it has made it any easier, but I have definitely 'adapted'. I too long for a break and then am so happy to see her when I return home, sad as it is. Mum still knows who I am, but not sure for how long. I guess with VaD there will be another rapid decline. I don't look forward to that.

It's tough, it's a vile disease.
Upset today. Hubby gave me a grumpy greeting, but that was soon sorted. But.... my friend, who I've met at the nursing home, well her husband hasn't long to live. I'm so very fond of my friend, and her daughter. Fond of her husband too. I went to see if we were sharing a taxi as normal, to find all the family round his bed. He's had a chest infection that won't clear. They invited me in, and I saw him, obviously at a late stage. Yes, I know, it's probably a blessing, he's had dementia for 5 years ( diagnosed) and enough is enough.Hes been struggling to swallow etc. Still very much upset me. Things to come?? Staff found me crying as I got out of the lift. Gave me a hug. They feel it too. All so very sad and cruel. Blasted vile, rotton disease!
941 posts