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New to dementia journey - Page 42 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
936 posts
Hi Pet
I have been reading your story. So sad but I think you are coping brilliantly well. I know it is difficult because you feel like you have lost your partner but they are still here. You really are doing so well and there are bound to be bad days but overall you still find the strength to help others out with a kind word.
Just wanted to say that....
Take care
Thank you Claudine. I don't always feel strong but I don't feel any of us do, hence joining the forum.
Today Ive struggled a little. The bathroom light bulb went in the early hours, and tripped the upstairs lighting. Down to find the trip switch to sort it. Now I've got to wait for Son in Law to change the bulb, as I can't reach it. Hubby so have sorted it without a second thought​. Then I had to get someone to look at my double oven grill at a cost. Into the garden after that, and trying to sort out yet again. Exhausted myself and felt quite bitter at living on my own. I can't say that to my lovely supportive family, as they truly have enough on their plates without me whining. Sitting with my feet up now, feeling less bitter. Semi widowhood I guess.
Pet, I echo your sentiments. I know it sounds trivial, but I do miss having my husband to do 'the blue jobs'....and knowing that 'everything' is landing back on me to sort out. I've got a badly dripping gutter at the moment courtesy of the (much needed!) rain yesterday, and there is 'no one' to sort it but me. (Mind you, hubby wasn't exactly keen on shinning up ladders, so maybe he's glad not to have to! :) )

Hope your mood picks up tomorrow a little. Kind regards as ever, J
Pet, although I'm taller than average, there are still things in my house I can't reach, but my OH could. I know have various aids to make me a bit taller. Most used is a simple plastic caravan step which cost about £8, it makes me 8-9" taller. I also have a small step ladder, just 4 rungs, again it's light and really sturdy, that makes me about 2-3ft taller. Some come with a hand rail. I also have a set of step ladders about six feet tall, but they are very heavy and cumbersome to move around the house. Have a look online at the Screwfix catalogue, we have a new branch near us and have been really pleased with everything bought so far.
Luckily I have a 2 step ladder, that I use loads. Bought a child's step, one they use to reach the loo when training. It was £2.99 in Aldi. Use it by my garage door as the step is steep. Glad I purchased it. For £2.99 it was worth the try.
The bathroom light is very awkward, and I hate to admit this but I get nervous of falling these days. Never used to.
I am very nervous of falling since my knee replacements my head and feet don't seem to communicate as well as they used to!
Hi Pet66. I've been on the journey about a year now. Many things you (and others) have mentioned in this thread are familiar to me too. The aching grief and loss. Witnessing my husband's decline bit by bit. Debating with myself over how often to visit and for how long. The guilt if I'm having a free day of doing my own thing, when he is stuck in the home, in his own world. How pointless everything feels some days.

A year along this path, and it all still feels so raw. I can only echo your words, Pet66, that I will never get over what has happened.

Thank you for your honesty in sharing your own experience with us.
It would be a shame though, if you wasted the rest of your life. You still have so much to be grateful for.
My husband died suddenly at the age of 58. However whilst a part of me died with him, I know he would be so annoyed with me if I didn't go on to enjoy life again.
Apart from holidays in the Med twice a year, I live a very quiet life, caring for my son with learning difficulties and doing my best to make sure he is OK, but I am grateful for every day I have, as I nearly died from a serious illness, and then in a car accident. I find pleasure in nature, the wind, the clouds, birds, plants. I find peace when I sew, a lifelong pleasure.
It's OK to enjoy things, don't close your eyes to all that is good around you.
One of the lovely forum ladies, helped me to redifine the emotion guilt to sad. The dementia and strokes our husbands have and are suffering are not our fault any more than its theirs. It helps to change the wording.
I am slowly learning that I can do things outside of ' dementia world', like meeting my friends. I know he is being cared for, and that he wouldn't want me to cave in. I'm not saying it gets easier, but I find that I can enjoy a good day even though he is never far from my mind. The bad days come and go, and I now accept that. Also, I have learnt I cope much better emotionally by not going every day to him. Each to their own on that score, no wrong or right about it.
Hubby always kept the garden in reasonable order, and did the containers​ and hanging baskets. So, I've had a go at potting some plants myself. Only last Saturday. They are so far thriving. I'm rather pleased with myself! It is quite a pleasure ( as BB says) to see things around. Was a pleasure to wear a summer skirt and top the other day. Why not.
I do hope you can have some good days guilt free. You can, if you try. I still love my husband very much, as I'm sure you do. Doesn't mean we can't have some ' me times'.
Bit sad at the visit today. Hubby was asleep over his dinner. Looked frail. He did wake when I said hello and finished the cold food. I tried talking to him, asking if I had planted the flowers​ properly. He said it sounds like it and promptly fell fast asleep again. Didn't even wake when the fire alarm went off and that usually makes us both jump. Another day when he's out of it. I had to fight the guilt monster at leaving him. Sad, as I feel he is going further into his own little world. Still knows me, and the family though. Greeted my daughter yesterday with her name. Have to treasure the moments.
936 posts