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New to dementia journey - Page 23 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
938 posts
Good choice Pet,
I had a 'day off' too and DD went to visit. I feel almost OK about skipping a visit if someone else goes as they report back to me and would call me if they felt I was needed. Still, it means I have to go tomorrow and I'm trying not to think about it. Also got a bundle of Mum relayed 'paperwork' to tackle. Leaving that till Monday.
Been visiting hubby regularly. Good days and not so good. Today I took him a yogurt, often do. He struggled with finding the yogurt pot today? I always take a sundae spoon. Quite startled me again. He managed ok after though. Talks in riddles still. Always been very busy! He has spilt some custard or something on his canvas shoe. Says he had to walk through mud to work! I accept this confabulting and go along with it.
The guilt monster attacked me again today. I only stayed 2hrs. Wasn't hubby (apart from keep saying let's go). The lounge was so so noisy today and my head was pounding with if. Was getting tense and decided to leave. I felt awful, I could leave and get away from the noise, hubby couldn't, and it was too noisy for him as well. Out of my hands but it got to me. So it goes. X
Hi pet66 i am so sorry you had an awful day today it has to be so frustrating when you go to visit him especially with all the hustle and bustle that is going on in the background i am thinking woe me and you are trying to cope with hubby not even being beside you in the home you two had together that in itself must be ever such a lonely thing to come to terms with heart felt love to you take care :(
Feel quite worried today. Hubby in bed when I arrived at 1.40. Had eaten lunch. To cut it short it seems he had asked the carers to leave him for a while this morning. Very tired and said he was in pain. Eventually he was ready to be showered. Bed very wet. Then the carer said he had a very upset tum. Hubby seems depressed to me? I spoke to the manager who assured me Hubby been on good form of late?
Hubby slept and slept during my visit. Spoke a little but I wasn't sure what he was on about. Had a nice greeting though. He still wonders how I've found him. Expect this is part of vascular dementia. ( Maybe not the upset tum) Each downward step breaks me.
Shared woe over!
Hi pet66 sorry your visit to hubby was a not so nice one and you must be feeling so upset so am just sending lots of hugs and love to you take care :)
Oh dear, it rather sounds like he picked up a bug (or mild food poisoning perhaps??), hence the upset tum and needing to sleep a lot. Hopefully the home has the doctor in routinely so maybe he could check out your husband? But hopefully he'll pick up again swiftly??
Emailed the manager to explain that hubby sensitive to onions and could the staff monitor his diet. I also said he hasn't a pressure cushion in the chair in his room. Had a swift response from the manager. He has apparently reminded staff about the diet and a cushion has been provided. He explained I or our family must tell staff immediately if the cushion is missing. Have it in writing now.
I felt I was doing well with the fight with the guilt monster. Afraid I didn't do well today's. Hubby was constantly saying come on let's go etc etc. Distraction didn't work. I left saying I had to collect a prescription ( I didn't). Outside I cried. Felt I shouldn't run out on him, but just couldn't cope today.
(((HUGS))) Pet. Time to put yourself on "special measures". Bath, cocoa, bed. I had times when I decided the world would have to get on with things without me, as I'd decided to entirely opt out for a while until I felt I could cope and face the world again. I know I'm always much more vulnerable if I haven't had enough sleep. Are you sleeping OK?
BB, I have reasonable sleeps then at times I have fitful nights. Am much better than when hubby was first taken ill and even before that. Last night I couldn't get warm for ages. Can't sleep if cold. Tonight I have the heating on. In August! I feel punished for actually enjoying yesterday with my sister. I know it's illogical. Hubby doesn't even know and he certainly would never have minded me meeting sis, or going to the cemetery to put flowers on my parents grave. Just felt useless today xx
Pet, we all get days like that, when we can't face being around the dementia sufferer, can't paint on the smile and endlessly answer the same questions, can't endlessly distract them when they ask those awkward questions where truthful answers would hurt them too much so we have to tell them white lies. It's just really hard sometimes.

Let others take the strain for you when they are able to visit, and never feel guilty at taking time out. It's vital you step back and have a break sometimes.

PS: It's possible that often when you're out of sight you're out of mind, due to the dementia, so maybe its not as bad as you think for your husband, on the days when you don't visit.
938 posts