New to dementia journey

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I feel like I'm going through another grieving process. Hubbys short term memory is getting shorter, bits of bizzare behaviour happening again, like asking me to "put this away", but actually there's nothing in his hand. Still has conversations with me, but stumbled on some things,. Very quiet the last 3 visits. Family have noticed too. Another step down by the look of it.
I'm having some restless nights. Early hours I ended up reading a magazine. So, the ambiguous grief continuous.
I spoke to another lovely visitor, who understood what I was saying. He said it's because we know, there is no going back,no improvement to hope for. I'm on that must get to him, but almost clock watching to leave again, then feel I'm abandoning him. So so confusing,these emotions.
I will continue to try and make my home a sanctuary. It's going to take a while yet, but I'm getting there. Sometimes I still think what's the point, but there is point.
Sounds a bit of a whiney post, but helps to write it down.
Hugs Pet. If you are having extra difficulty sleeping whilst adjusting to this latest sad decline, don't be afraid to ask your GP for some gentle medication to help you sleep. I have some Amitryptilene, GP prescribed a whole tablet at the lowest dose. I'm very sensitive to medication (and alcohol!) so after a few dreamy days when nothing got done, I bought a pill cutter and cut the pill in half.
I found if I took one about 8pm it gave me a relaxed night, even if I wasn't actually asleep my body was totally relaxed, which was lovely. In the morning after a coffee I was fine, but never made appointments first thing in the morning. I always have them in the cupboard, but now I have learned to be much more aware of how I'm feeling, and learned how to avoid any extra stress if I'm already feeling stressed about something.
With a warm bath, cocoa, relaxing, I seldom need them, but it really helps to know that they are there if I need them. I've probably taken a half tablet less than 6 times this year. I didn't find them addictive or have any problem giving them up when I was less stressed. Hope that helps.
Talk to your GP to see if he thinks something like this might help you. Has he offered you counselling?
Pet, I can resonate with that. In one dreadful sense one 'longs' (not the right word I know) for 'it to be all over'....and yet dreads it as well. It is, for you a 'long goodbye', like watching a train leave a station very very slowly, and you standing on the platform with your aching heart watching it leave.....but it's a long, long time until it is out of sight.....

I don't know whether this would help at all, but for me, as a widow, I almost consciously and deliberately 're-create' my husband 'at home' as he used to be. I 'see' him in his place on the sofa in the living room as I watch TV, I 'see' him in the kitchen watching me cook and so on. I'm almost, I suppose, 'painting him back in'....but the good thing is that it is 'that' husband (ie, the well one) that seems real to me at that moment, not the long-dead one......

I think the key, key thing in any bereavement, whether it is the 'ambiguous grief' you are going through now, or a more 'ordinary' widowing like mine, is that 'whatever helps' is justified and worth trying. It doesn't matter if anyone else thinks it's 'a bit loopy' or whatever, if it helps YOU cope and carry on, and find an easier way to arrange the inside of your head, then that is all the justification that is needed.

In terms of meds, my vote always goes for mild/low dose diazepam - the pharmaceutical equivalent of a glass of sherry in my book. But only to be taken (sparingly) on 'bad days' to hold the 'bad stuff' at bay for a few precious restoring hours.

Wishing you as well as can be now - kind regards as ever, Jenny

PS - BB, had to smile, your phrasing made me understand that you now hold all your appointments in cupboards!!!! :)
Ooops Jenny, that's what comes of changing something half way through, but happy to give you a smile!!
So so angry today.The CHC re assessment was made for 2pm. After being messed about. No s/w, no nurse etc etc. So today I turn up for the meeting. Go to see hubby Ist. The stupid woman asked me in front of hubby, in a very loud voice if I have POA. Then proceeds to tell me, more than once that her mother had vascular dementia but didn't qualify for CHC. That she had just seen someone with MS who didn't qualify. I said do we have to have this conversation here, I'm visiting my husband. So, after pacifying hubby, who was most belwildered, I went to the meeting. What a farce.Waited for over half an hour for the s/ a to show up. No one did. The blasted women kept repeating herself, how her mother had vascular dementia blah blah. She said we could continue without the S/W if I wanted to. By this time, I was very annoyed, Supposed to be multi disciplinary meeting, not just me and her, and a nurse from the home who came in at 2 50. No, I didn't allow the meeting to go ahead. A most rude woman, who kept interrupting. I'm hoping I can request that it's not her, when they get a meeting arranged. Treated me like I didn't understand anything. I'm fuming, at the whole farce, discourtesy of a social worker not arriving or phoning.
Watch this space!
Just had to offload.
HUGS Pet, be kind to yourself for the moment. Once you are feeling a bit less stressed, you need to complain to the head of the CHC Unit. The assessor clearly has an urgent need for further training and should be assigned to other duties until the training is complete, aimed at what is, and is not professional!
That's a horrible experience. I've gone through two CHC assessements now re my MIL and both were perfectly 'pleasant'. The NHS lady was very nice especially the second one - she looked exhausted poor woman. And she, too, was a family carer herself.

From what I can recall now the 'chc' aspect focussed on things like whether MIL could take her own pills (no, she had to be coaxed and even 'tricked' into taking them), that she was now doubly incontinent, and could not toilet or shower herself. She had to be helped with food. She was becoming increasingly immobile (now can't get up at all out of the chair on her own, or walk).

I was a bit scared the second one would result in the CHC contribution (she's self funding) that was allowed when she moved into the secure unit, would be 'removed' but the NHS lady said right up front that there was no question of it being reduced or removed, only whether it should be increased. I found that reassuring. (I don't think it has been increased - it goes directly to the care home, so I just pay the same residual rest-of-the-fees - ie, the hundred pounds a day - that MIL has always been paid.)

The care home nurse was there for the whole meeting. The only person who wasn't a happy bunny was MIL - she was sitting there visibly getting crosser and crosser. I could tell from her attitude and 'I'm not happy!' expression. She didn't know what was going on but she knew we were discussing her and did not like it in the least! Luckily when it was over I got out the cream team and she cheered up!!!

I do hope when you do get a satisfactory quorate meeting, that you get the result you want.

Kindest thoughts at a frustrating and distressing time - Jenny
Pet,
Have you noticed the statistics for your thread?

33,657 views have been recorded.

I know it's a distressing journey, but you are helping so many people by sharing your experiences with others.
Wow! That is amazing.

If Henrietta does write her Book Of Caring, then yours would definitely be a first class Case Study for it......
Hi Pet
I think you did exactly the right thing cancelling the meeting under the circumstances, the more people who attend and have in put the better, plus hopefully you will have different members In the team next time or they will at least be feeling more professional. Jenny is quite right- your posts are enormously helpful to all the rest of us following similar paths.
I keep teetering on the brink of asking for CHC checklist again , but two weeks ago he failed the hospital checklist and didn't move on to the full assessment stage. Since then he has had 3 further falls, refused all help from hospital intermediate nurses, been unrousable once or twice, refused meds some days, today is in bed and refused to do anything at all. I had to change his pad and sheets by rolling him after the carer had departed. He seems to fit all the criteria by way of being unpredicatable, needing help to toilet, take meds (although mine is usaly the only help he accepts) and yet I can't see that he is substantially different to when he was discharged from hospital so I don't hold out much hope.
509 posts