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New to dementia journey - Page 21 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
938 posts
PS - I'm pretty sure that at both the Abbeyfield, and the home my MIL's got to leave next week, I'm somewhat unusual in that I take her out most times. I think most visitors just come to visit, chat a bit, then go away again. So I'm somewhat 'odd' in that respect! Unusual behaviour pattern!!
I am one of the more regular visitors. However there are some who go every day and stay longer. But of course , my daughter's grandchildren and SILs go regularly and I think hubby has the most visitors. One lovely man takes his wife out most days but the others, like me can't. Luckily I seem to have sorted the misunderstanding. It was really uncomfortable and totally unnecessary though.
I've had today off from visiting. Had my hair done and went into Solihull. 16yr old grandson came with me and we both enjoyed it. Am learning that a day from visiting is beneficial to me, even though the guilt monster fights me. I try not to let it win! Elder daughter just txtd to say she had seen her dad and it was a pleasant visit so it makes me feel better.
Hi Pet and Hi Jenny
My SFS (stone faced sister) actually smiled at me today. Perhaps she has come to the conclusion that I am a 'hands on' relative, rather than someone just poking their nose in! Much easier conversation with her today than previously. Maybe something to do with I pressed Mum's buzzer when she started gagging over her tea. Sister appeared at door and saw real, but not drastic, emergency and was almost pleasant afterwards. Break through for today but I bet she cuts me dead again next time!
Jenny sorry you are having to go through 'the move' again. It never ends does it?
Sad day today. Hubby took a short time to recognise me. He was extremely tired and out of it. My younger daughter visited later. He just about smiled at her but any conversation was difficult for him to join in and I suspect, understand. Was quite a kick in the stomach. The manager said he had slept well and his medication hasn't changed. Another decline to cope with.
I'm meeting my friend tomorrow and won't be visiting. Today has taken the shine off the fact I was looking forward to it.
No ,it certainly doesn't get any easier. Heavy heart this evening.
Pet, it could be that his home is now becoming more 'real' to him that his 'previous life' (ie, his real life, you, family).

Sometimes when I visit MIL there is like a 'slow dawn' going across her face, as she moves from the world she lives in (the home) and her 'old/real life' which I represent. It's kind of 'slow motion.'

Maybe it's akin to what happens when we wake up out of a vivid dream. For a few moments (no idea how long, probably much shorter than it feels), we wonder whether we are still 'in the dream', and then 'reality' arrives. I did that this morning - I was back in my childhood home, in the bedroom I had as a child, and when I woke, I had to really 'think' about where I was now, in my adult home, in my adult bed. It was weird.

The mind is a strange, strange entity, that is for sure.....

Wishing you as well as can be, in a sad situation. Jenny
Well at least hubby recognised me today straight away.Couldn't understand how I'd found him but was pleased. Confusion is without doubt,getting worse. Am just going to have to pace myself and cope. Goodness knows how but I will. Xx
Up and down visit today. Hubby didn't react very much when I arrived. Wasn't horrible though. I may be imagining this but wonder if he blames me? Who knows. When DD no 1 arrived he gave a much nicer response. Was pleased for her but it still cut at me. We watched the tennis and quite enjoyed it. He asked me if I had thought about the holiday. Rolled with that.Then the lounge became extremely noisy. One man repeating himself loudly and for ages. Poor soul. But it started to really irritate hubby terribly. He kept trying to get up. Closer and closer to the edge. I said you are going to fall. Was very annoyed with me. Griited teeth. Apparently I know he can get up. I decided to leave. Kissed top of his head and said bye. Now I feel terrible. Am sure it's better than staying and getting myself in more of a state? The home was short staffed again. Agency staff who seem to stand around looking as though they don't know what to do. Usually staff go to the poor man who repeats and gets louder and louder and calm him down. Not today . Here we go again. Guilt monster, trying to understand that he's in a different mind set and frustrated. Me too!
Hi Everyone
Not sure if my thread should still be called new to dementia journey?
Still get the guilt monster but think I'm learning to kick it away at times.
I still get the stomach knot when walking down the drive to the home.Still feel like I'm abandoning him each time I leave. However,I now tell myself IF the visit becomes very difficult I will leave earlier. I don't feel quite so bad if I decide to have a visit free day. Esp if I know one of my family are going. I'm assured that staff will contact me if really needed. I've taken one of the cushions from my lounge to hubby. Have decided to change the ones left here. Each time I look at them I think of the one in his room. So a very very small step? It's been 8months now since hubby lived here. But I'm well acquainted now with several visitors at the home. If hubby is in a different lounge one of them seeks us out to say hello. Hubby and myself are no longer the 'newbies'
I still have times of despair, anger, and the rest of the mixed emotions we all know about. So.....am I adjusting? Maybe. Because I have to!!
Not sure if this is a useful way of looking at things, but, if things were the other way round, if it were YOU in the dementia home, and your husband doing the visiting, what would you want for him? Would you want him to feel guilty about you, guilty when not visiting? Or would you want him to have some 'off duty' time for himself?

I think you know the answer.

So, really, I'm sure your husband would think the same, wouldn't he? He wouldn't 'want' you to feel so 'fraught' over visiting/not visiting etc etc.

Also, one 'blessing' of dementia as it advances, is that it 'dissolves time' - eventually, your husband won't remember when you were last there, and won't miss you when you're not. You will simply 'pop in and out of existence' when he sees you, and after you've left. In a way, that's a comfort, isn't it?
Morning Jenny
I think my last post was trying to tell myself I'm adjusting to this new normal even if very slowly.
Hubby doesn't really connect when I was last there. Said to me yesterday 'where did you get to?" I answered hello to you too! He half smiled and responded to my hello kiss. He may not connect time scales now but I do. However,the guilt monster doesn't kick as hard when I have a visit free day.
It is a sort of comfort in a strange way. In another way it's a dread? Mixed emotions and all that goes with it xx
938 posts