• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

After the deluge?

Joyt

Registered User
Jun 30, 2018
46
Thank you so much for your kind words, Alice. You have said the key to it: a role and a meaning. I did not imagine I would move on to being a volunteer in a nursing home, and now they have asked me to think about a campaign to recruit other volunteers which is lovely. A role and a meaning. Caring for someone at home 24/7 is an honourable occupation but the price is too high. Moving on in life. I don't know. I write the wildlife notes for the local church magazine and that helps with meaning, I now run the little church group that once saved my life by reaching out to me when life with Keith was terribly dark. These are small things but they are a life. I am by no means recovered from my ordeal. I feel fear easily, find it hard to cope with the bureacratic incompetencies of life and am often in state of terror first thing in the morning, as I was when caring for Keith at home. I tell myself all this is normal bearing in mind what I went through.
I would say the practicalities of moving on are choose a small activity, any one, go to the library if you have one once or twice a week, make it a habit. Habits become imperatives and this can give us a way to move on, little by little. I guess moving on means put your mind elsewhere.
I would say, as mental health professional that there is something about the nature of dementia that is compelling and consuming to the normal mind and it is very very hard to get the mind off it.
with love and best, Geraldinexxx
I recognise the terror.....That long term stress leaves scars. I don’t know of any support for carers that recognises this.
 

Joyt

Registered User
Jun 30, 2018
46
I have just read all your posts and am sitting here crying, I was going to visit my husband in hospital but have realised there is not a bus to the hospital today I didn't go yesterday as I woke up with back ache also the weather was awful, I know he won't know I haven't been but I will and will feel guilty all day. Lx
Ahhh guilt. That’s hard.
Somewhere, though, self preservation might kick in?
 

Joyt

Registered User
Jun 30, 2018
46
Hi Joyt. I am in the same position only a few months further down the line. My husband went into full time care at the end of July. My first two months or so I spent much of my time crying but now I am building a life of my own having joined art and craft clubs (which was a hobby put on hold for the last five or six years while caring for him) . I have made a lot of new friends at these clubs and although I visit him in the home most days, I juggle the craft meetings and visits so that I can do both. The evenings can still be difficult as I miss him but as I know I can go in and spend more quality time with him the next day they are now getting easier. Sometimes when I visit he’s not having a good day so I don’t stay so long that day but sometimes it’s good and I will stay several hours. I find that if I don’t try to be too rigid with my plans for the day I can relax and to begin to enjoy my life again with him or on my own. I hope it won’t be too long before you are able to enjoy some of your ‘me time’ and that your OH soon settles in his new home.
Thanks for your words Jean x
 

manor born

New member
Jan 16, 2018
1
My 68 year old husband is now residing in a care home, after a psychotic episode on holiday, that ended with him punching me in the face. It was the final showdown after months of disturbed nights, coping with his hallucinations and accusations about stealing his money. I have wrestled with my conscience over the past six weeks, since he was discharged from hospital, and i made the decision that I could no longer look after him at home. It matters not that it was the only sensible thing to do, I have torn myself apart, worrying that I should have done more. The staff at the care home are lovely, and they have reassured me that I have done the right thing for us both, but the guilt is, at times, overwhelming. I find it hard to visit him, because I can't find anything to talk about that doesn't remind him he's been 'thrown out' of his home. I read with interest the comments about carers experiencing PTSD, because I have only recently realised that is what it is going on: the tears, flashbacks, anxiety, tiredness and 'survivor guilt' are all there. People tell me to rebuild my life, but he is still here, and so are his clothes, books, golf clubs....I know only too well he'll never need them again, but giving them away seems like the ultimate betrayal. It's lonely out here....
 

marionq

Registered User
Apr 24, 2013
6,016
Scotland
@manor born i have just read your post at 1.35 am after toileting my husband to try and prevent a wet bed. I wish I could magic your pain away as well as my own but there is no instant solution for this existential chaos that dementia brings.

You have done what was necessary and now in small steps at a time you owe to yourself to rebuild your life. If that includes getting rid of his golf clubs then do it. Last year I sorted out my husbands tool box (he was a carpenter) and kept a few things I would use and dispensed with the rest. He would have hated that but although he still lives at home his days of doing anything coherent are over.

Give yourself mental and physical space and start to breathe free again. Best wishes.
 

AliceA

Registered User
May 27, 2016
2,645
Some storage units are not too expensive, perhaps for an interim period put some in there unless you have space at home out of sight. Then you can dispose in your own time. When you are ready, and not before.
I tend to give to charities because things are seldom worth the hassle of selling and it gives me pleasure even when I know I could sell easily. There is a special release in giving.
You are going through an emotional turmoil, it is hard to shift from a loving wife to what seems a advocate.
When you are ready, and again not before, perhaps start sorting your own things as you adjust to a different life I will not say new, because we cannot ever start anew. Our past is what has made us. This present will make our future. Most of all be kind to yourself. Alice x
 

Rosebush

Registered User
Apr 2, 2018
1,478
My 68 year old husband is now residing in a care home, after a psychotic episode on holiday, that ended with him punching me in the face. It was the final showdown after months of disturbed nights, coping with his hallucinations and accusations about stealing his money. I have wrestled with my conscience over the past six weeks, since he was discharged from hospital, and i made the decision that I could no longer look after him at home. It matters not that it was the only sensible thing to do, I have torn myself apart, worrying that I should have done more. The staff at the care home are lovely, and they have reassured me that I have done the right thing for us both, but the guilt is, at times, overwhelming. I find it hard to visit him, because I can't find anything to talk about that doesn't remind him he's been 'thrown out' of his home. I read with interest the comments about carers experiencing PTSD, because I have only recently realised that is what it is going on: the tears, flashbacks, anxiety, tiredness and 'survivor guilt' are all there. People tell me to rebuild my life, but he is still here, and so are his clothes, books, golf clubs....I know only too well he'll never need them again, but giving them away seems like the ultimate betrayal. It's lonely out here....
Hi, my husband is also in a care home, he is 71, I am 69, I find it difficult to visit him as he doesn't really know me anymore or our children! all his things are still here, I am slowly taking his clothes to the care home, but what do I do with everything else? We have a big concrete garage in the garden that was used as a workshop, it is full of stuff that hasn't been used for years, the roof leaks and everything is damp and smelly, so today I am going to order a skip and with a bit of luck my children will help me empty it, but then how do I get rid of the garage? at least it will give me something to do as the days are very long and lonely. Lx
 

Martarita

Registered User
May 11, 2018
112
My OH has gone into full time care now aged 65. I cared for him for some years and now find myself at the beginning of a new phase. I feel I have walked with him as far as we could go together and I have brought him to a place where he feels safe and cared for. However, im now having to rebuild my life. Are there other people who are in this place? A sort of widowhood with no closure.
Hi there I am going through exactly the same , and of course I'm really struggling with it all ,everyone tells me I will get through all this sadness and grief and I hope it's true, I'm trying hard as I know you probably are doing the same , one day at a time ,I don't really know what to say ,but we have to carry on ,but we are grieving in a way for or husband that we knew and loved .but they have gone and that's so hard to come to terms with , it's the horrible disease that's took them from us . We can but try very hard to get on with life ,my thoughts are with you Take Care . It one day at a time Let's hope things will get better . Xx
 

Rosebush

Registered User
Apr 2, 2018
1,478
Hi there I am going through exactly the same , and of course I'm really struggling with it all ,everyone tells me I will get through all this sadness and grief and I hope it's true, I'm trying hard as I know you probably are doing the same , one day at a time ,I don't really know what to say ,but we have to carry on ,but we are grieving in a way for or husband that we knew and loved .but they have gone and that's so hard to come to terms with , it's the horrible disease that's took them from us . We can but try very hard to get on with life ,my thoughts are with you Take Care . It one day at a time Let's hope things will get better . Xx
Hi, looks like we are all in the same boat, let's hope it doesn't sink!:eek:
 

Martarita

Registered User
May 11, 2018
112
Hi, looks like we are all in the same boat, let's hope it doesn't sink!:eek:
Hi Rose I really think I'm sinking fast so it's ether sink or swim, and I'm trying so hard to keep afloat So why don't we say we won't let this horrible disease take us as well as our OH and show that we can be strong for our loved ones sake .Take Care ,Thank you for replying.xx
 

Joyt

Registered User
Jun 30, 2018
46
My 68 year old husband is now residing in a care home, after a psychotic episode on holiday, that ended with him punching me in the face. It was the final showdown after months of disturbed nights, coping with his hallucinations and accusations about stealing his money. I have wrestled with my conscience over the past six weeks, since he was discharged from hospital, and i made the decision that I could no longer look after him at home. It matters not that it was the only sensible thing to do, I have torn myself apart, worrying that I should have done more. The staff at the care home are lovely, and they have reassured me that I have done the right thing for us both, but the guilt is, at times, overwhelming. I find it hard to visit him, because I can't find anything to talk about that doesn't remind him he's been 'thrown out' of his home. I read with interest the comments about carers experiencing PTSD, because I have only recently realised that is what it is going on: the tears, flashbacks, anxiety, tiredness and 'survivor guilt' are all there. People tell me to rebuild my life, but he is still here, and so are his clothes, books, golf clubs....I know only too well he'll never need them again, but giving them away seems like the ultimate betrayal. It's lonely out here....
I’m now 8 months on from my husband going into care. I was lucky in that in his final lucid moments he urged me to get on with my life. Easier said than done but I now acknowledge that this is a degenerative, incurable and fatal illness and he’s just been unlucky. He wouldn’t have wanted it to destroy me too.
 

Joyt

Registered User
Jun 30, 2018
46
Hi there I am going through exactly the same , and of course I'm really struggling with it all ,everyone tells me I will get through all this sadness and grief and I hope it's true, I'm trying hard as I know you probably are doing the same , one day at a time ,I don't really know what to say ,but we have to carry on ,but we are grieving in a way for or husband that we knew and loved .but they have gone and that's so hard to come to terms with , it's the horrible disease that's took them from us . We can but try very hard to get on with life ,my thoughts are with you Take Care . It one day at a time Let's hope things will get better . Xx
 

PalSal

Registered User
Dec 4, 2011
780
Pratteln Switzerland
My OH has gone into full time care now aged 65. I cared for him for some years and now find myself at the beginning of a new phase. I feel I have walked with him as far as we could go together and I have brought him to a place where he feels safe and cared for. However, im now having to rebuild my life. Are there other people who are in this place? A sort of widowhood with no closure.
@Joyt....yes you are in a new phase for sure. You have not said how "young"you are? Not that it matters , but I am just curious. I think am looking forward to the release of full time care, but perhaps I will truly have no purpose then. I really do not know how I will feel in the end. But I must lay the ground work for the eventuality of him being a home. But it requires patience and endurance on my part, as it requires some unusual planning as he is not a citizen of this country and I must make our funds last as long as possible. We will see back I see the end of line coming...probably in a year or perhaps two.
But then I think you must have the life you want. I dream about going home for 4 weeks or even making a long caravan trip in my home of the USA. I hope that I am healthy enough to do something like that when the time comes.
 

PalSal

Registered User
Dec 4, 2011
780
Pratteln Switzerland
At various points on the caring journey I have reached as low as I have ever been. The phases of dementia have tested me in ways I had never experienced and it troubles me that this continues for others. In the run up to diagnosis of Alzheimer's I won't pretend that all was well because there were question marks about my husband's behaviour and decisions long before that. The reality was worse than I could have imagined.

We are now at the end of stage six and I know that could go on for a long time. Because my husband is much less active he is easier to look after in many ways but ironically it also means it is much harder to leave our home as he is so lame and unstable on his feet.

Somewhere in the future his life will be over and like us all I wonder if I will have any life left when that occurs. As I look back at our life together I know I would do it again but this episode of dementia has spoiled what we had and I will be relieved when it is over.

Good wishes to all.
@marionq...you eloquence is always so lovely. Thank you ....it is exactly how I feel.
 

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