What a difference a year makes.

((Hugs)) annsixty and
Definitely a sod-it Christmas .......

annsixty I can only offer understanding if that helps at all. It is good to get it off your chest in a safe place.

My Dh is in the early stages of the same journey - although the Consultant decreed that he has PTSD and will slowly improve, we all know that he is getting worse in fits and starts. However we did have a near perfect Christmas Day with the entire close family, 9 of us, all together for the first time in years. I shall treasure that because I know it will be much different in years to come. Traditionally, on Christmas morning DH has donned his red dressing gown and Santa hat and handed out the presents but this year he was unable to read the labels and DD1 had to discretely take over. He said he enjoyed the day but insisted on leaving for home at 8.00pm and promptly slept in his chair while I watched Downton in full for once without him changing channels looking for Midsummer Murders - he can watch the same episode twice in succession and still not know 'Who dunnet'.

This year I managed to do my shifts at our Pop-up Charitable Christmas Shop but he will neither come with me nor stay home alone without creating havoc. So next year's Shop, Conferences and the May Election will have to manage without me and sadly my long planned Golden Wedding 'do' will have to be downgraded to a family meal at home.

I am finding all this mentally and physically exhausting. As well as doing all the tasks that he used to do, I have loads of extra work as he turned off the freezer 'because it was making a noise' (lost £££ of food with that episode) and turns the central heating up, down, off and on depending on whether he feels hot or cold. Can't wash the car and can't take it to the car wash, won't answer the door or the phone, etc.etc.

Thankfully, he is a lovely person, whom I love very much. He has not become belligerent but rather very dependent and grateful for all I do.
I'll do my best as long as I can and as my widowed sister points out at least he is still with me and I still get hugs and kisses.

Donations of patience would be gratefully accepted

Granny23 so sorry to hear you are going through this as well. We have Only Fools and Horses on again as I write. We have had our Golden Wedding and am sorry yours will not be what you hoped for.
Yes the patience is very necessary along with a strong sense of humour.Keep smiling even when it hurts.

I thought about you on Christmas Day Ann and hoped that having your family around would be a help. I'm sorry you had a difficult time! and (((hugs)))

I didn't know about your situation Granny23 and have no patience to give you as I struggle to spend an hour with my Mum! You both have my huge admiration and respect - though not much help,I know!

Annsixty and Granny23. I'm sorry life is very challenging for you both. Your husbands are lucky to have you. Wishing you patience, a sense of humour and peace although it is so hard.

I echo the above thoughts and remember not to berate yourself if you occasionally "flip".

You can only do your best and no more.

It is true that landmark occasions like Christmas and birthdays can highlight the changes as we remember how the person was at the previous occasion a year past. My OH has PD and, although he ticks along, I am conscious that he is not what he was this time last year. But that's the way it goes I guess.

? to all who have had ( are having) difficult times with their DH.It requires love and patience in equal amounts to cope.Sadly, it's often part of the growing older process, and more and more of us will come to it.As Greenfinch says, don't berate yourself if you're not angelic all the time.

annsixty and Granny23 - such a difficult time for you both and others who are coping with this changing relationships due to declining health. I hope your mutual love and patience see you through these tricky times - xxxxx

Hi Ann, well, not good eh? It could be worse though, it could have been On the Buses he was watching back to back! lol At least Only Fools is funny, although all the time, I think even I'd get fed up. It wouldn't have been as bad if you could have retreated to another room and done your own thing but with having family turn up you couldn't even do that, and then they were upset so you had to help with this when really it's you who could do with the help.

Is there any way you can plan anything for yourself in the next week say, and get someone to sit with him while you escape for a couple of hours? You need a break to refresh yourself for time to come.

I honestly don't know how you cope. I admire you and wish you all the very best, look after yourself love. Xxx

I am full of admiration for those of you caring for your husbands with Azheimers, I really don't know how you manage but somehow you do. There should be time for you to just do your own thing, just to recharge your batteries, but don't know if that is possible.

I started this thread and as I have perhaps been guilty of bringing down the good tone of other threads I felt I should explain myself.
Life with someone with any form of dementia is so difficult and life sapping it is hard to explain to anyone who has not lived with it and by that I mean 24 hours a day. I realise how difficult it is for children, siblings etc but when it is your partner of many years it is soul destroying especially when that person is someone you do not recognise and in lots of aspects do not like. That is blunt but true.
My H is controlling and picky and treats me like a carer or housekeeper. He told our GP recently that we needed no help as he had me to look after him.
He has watched his choice of TV for the whole of Christmas and when I wanted to watch a recording of Sherlock he went to bed at 8:15pm.
He has asked me twice recently what happens to his money as he never spends any,I don't know what he thinks I do
with it!!
We have the same conversations dozens of times a day and he does not know where anything goes in the house so he wanders round picking things up,finding me and asking where they go which of course is where he found them.
I hope Ihave given a tiny inkling of what life is like and why, as
I said on another thread I sometimes use alcohol as a crutch.I give a huge thanks to anyone who has been supportive and anyone who tries to understand

Ann, you are always honest in your posts and I'm sure lots of us wish there was something more we could do to help. All we can offer is support and I hope you keep talking to us if it helps.

I have said before that I can barely stand an hour with mum so you have my complete admiration for coping with this all day, every day. I really hope your gp saw past your husband's refusal of help - if not please ask him yourself.

Take care!

Dear annsixty

I was very touched by your post and feel for you.

Although I don't have anyone suffering with dementia close to me, a few thoughts crossed my mind.

The first is to somehow - and I realise I have no real plans on how this could happen - ensure that you have some time to yourself each week.

Are there any local organisations that could help with organised respite care? Perhaps Social Services would have a list? You may need to call it something else to help your DH attend but it may be worth a try. I would find it intolerable to continue day after day without any respite care in the offing. I admire you.

I wondered on a practical level, if it would work for your DH to have your cupboards labelled with their contents. This may help him find things.

Finally, next week the BBC begin a run of ten episodes of 'Father Brown' which is set in the 1950's. Your husband may find this time frame suits him and jog his memory...?

Best wishes

It's very lonely isn't it Ann? All those little chats are a thing of the past, you can't make a humorous comment as it just passes over their heads, they can't remember changes to schedules even when it was discussed in detail and agreed the day before. They insist there's nothing wrong, and are very defensive.

In the early stages no one believes you because they seem 'normal' when visiters and family arrive, and people think you are making it all up, so there's no support or understanding. It's only those who are there 24/7 who see it long, long before it because obvious to others, by which time it's too late.

Someone bring supportive and trying to understand is indeed very important.

Annsixty I don't have personal experience of dealing with someone with Alzheimer's or dementia; however we did care for my DM who had had strokes and got very confused and would ask the same thing several times. However, she was always very grateful for anything done for her and was worried that she was being 'a nuisance', which we assured her that she wasn't.
It must be very difficult, a friend of ours has spent a lifetime helping his DW look after people with mental disabilities as well as bringing up their own family. Now they are retired he has been diagnosed with Alzheimer's and another illness which makes it impossible to visit their daughters. I feel helplessly angry on their behalf.
and

Hi Ann - you really are making a good fist of this in very difficult circumstances. The repetitive nature of the conversations can be very tiring and a refusal to accept outside help must be very frustrating for you.

I don't care for my mother full-time, her dementia started about 5 years ago and was officially diagnosed last year. She is still able to live alone, and manages to dress herself and deal with her own personal hygiene. She came to stay with us for 5 days over Christmas along with my dc and dgc - it was exhausting. Everyone got to see just how much she has deteriorated... I think this year will see more changes in her condition and her living arrangements.

I have labelled all cupboards, drawers etc... there are notes all over the house serving as reminders for the things she forgets most often . She is a very cheerful if somewhat bewildered soul most of the time which makes it a lot easier to help her.
Trust me though - there have been many days when I have been heading home after a long day with her and it has only been the thought of a G&T or a glass of red that has kept me from going insane - so make no apology for that

I do hope you can get some support through your GP - if SS can't help -maybe Age UK would be an option. I am contacting them this week to arrange for them to visit my dm a couple of times weekly just for some company. Something like this might allow you just enough time to go for a walk, some shopping or just time on your own. They charge around £15 an hour and will come in for an hour and a half (min) and do pretty much whatever is needed. Of course, I understand that there is the financial aspect to consider and your H needs to be willing (or persuaded) to accept this help ... I have yet to convince my dm ...

I hope sharing how you feel is helpful to you - I have much admiration for you and I'm sure lots of g/netters will be along with good advice X

Thank you all for your support and understanding. It is the early hours again and sleep won't come.
I have another enormous problem in my life at the moment with my son and his stepdaughter.I am not going to elaborate at this time but they are both currently staying here, a situation I am finding intolerable, fortunately it is going over H's head.

So sorry you are having an awake night Ann. Same here but no major reason, just me being me! I feel for you. Neighbours are in the same position and it is hard to see the struggle as it is to hear of yours. I hope practical support can be found that is acceptable to you both. Some worry free time would be wonderful but perhaps not possible right now. As others have please don't give yourself a hard time. We all get through things as we can and you are managing so much so well. Sending [hugs], and a wish you can sleep.

annsixty
I wish you all the very best, chin up

Bye

Ann - I thought of you today - hope you got some sleep in the end last night

Sending sleepy vibes for tonight