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Hello and how do you cope?

Give me grace

New member
Jan 11, 2022
2
0
Hi all. I have come across this forum and thought I would join- my husband of nearly 46 years has just been diagnosed with Alzheimer’s - I feel as if my the bottom of my world has fallen out.
I have suspected something now for a couple of years - my only surprise was it was Alzheimer's- I thought it would have been vascular as he had type 2 diabetes kidney failure, aortic stenosis and neuropathy - his vascular system in the brain is ok
My mother had Alzheimer’s and passed away 25 years ago - support was non existent then but I can remember the sadness of her decline before passing away - so I’m full of emotion for the future
Please can I ask for a bit if help?
My husband has always preferred our own company over social and family events however he now doesn’t even speak with me - if I want a conversation - he will only answer if I ask a question - but won’t extend or continue- us this part if the decline or him being awkward?

I am now either irritable or resigned - seem to have lost my view of a happy future - does anyone have any help how I can rekindle my joy?
Thanks in advanced
 

kindred

Registered User
Apr 8, 2018
2,795
0
Hello, and welcome, you will find great support and friendship here.
At the nursing home where i volunteer as an activity worker, the manager asked me to spend time each day trying to converse with a resident who only answered questions, to see if I could draw him out.
It is very hard but eventually g he spoke more in response to invitations like tell me more about … I bet you were good at …
All sympathy to you. We can try to help you find some joy. When I was going through this, I found joy in the support and loving companionship here.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,975
0
Kent
Hello @Give me grace A warm welcome from me too.

Is it possible your husband is trying to process his diagnosis?

If he has never been the most sociable of people, this diagnosis whether he is withdrawing or not will affect his communication skills and perhaps he simply doesn`t know what to say.

I wouldn`t put any pressure on him, however frustrating it may be for you. I know if I`m not really in a talkative mood, there is nothing more annoying than people trying to draw me out.

I remember feeling my husband was brooding over what he felt was happening to him. Expressing his feelings was beyond him. He didn`t know or understand how he felt. This was the time I tried to let him know how unhappy I was for him just by being with him.

I do hope you have friends and family you can talk with, even if your husband isn`t able or willing to. I think all you can do at this stage is allow him some processing time and try to speak without expecting anything in return. You can do this by passing comments on what is happening or what you are doing without asking his opinion.

I do hope this community will help you feel less isolated.
 

canary

Registered User
Feb 25, 2014
16,684
0
South coast
My OH says almost nothing too. He will only answer questions - never volunteer anything - and recently has taken to just nodding or shacking his head, or giving me a thumbs up if I suggest a coffee. Previously, if I tried to get him to make conversation and ask him what he thought about something, or what he had done he would simply say "I dont know". I have had to accept that conversation is gone.

These losses are hard - the loss of companionship, the ability to talk something over with the person who could once have advised you, the loss of plans and dreams for the future. You end up lost, isolated and doubting yourself. Allow yourself to grieve these losses. I thought my OH was young in his early sixties (he was late 50s when it started), but your husband is even younger.

See if you can arrange some sort of social stimulation. Maybe your husband would benefit from day care - or possibly joining Mens sheds (google it to see if there is one near you), or arranging a befriending service. Are you still working? If not, then you need stimulation too. I have a cleaner in just so that I have someone to talk to. This forum is also a source of comfort
 

RosettaT

Registered User
Sep 9, 2018
694
0
Mid Lincs
Oh @Give me grace I am so sorry, 46 is very young. I can understand why the bottom of your world fell out. Mine did too but my OH was 73.
You'll get lots of support here, there have been some good pointers already, keep posting I wish you all the best.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,392
0
High Peak
Erm... just to clarify, when you said your 'husband of nearly 46 years', did you mean that is his age or is that the length of time you've been married?
 

Give me grace

New member
Jan 11, 2022
2
0
Erm... just to clarify, when you said your 'husband of nearly 46 years', did you mean that is his age or is that the length of time you've been married?
So sorry - it’s how many years we’ve been married - he is 68 - sorry if i’ caused confusion

Many many thanks for your replies - I’ve taken great comfort to know others are there for support

Yes I didn’t think he might be processing the information and I’m definitely going to look for man sheds- I
All your support everyone is greatly appreciated x
 

Libbybookworm

Registered User
Apr 6, 2018
18
0
@Give me grace I'm so sorry for your husband's diagnosis. My husband was 58 when I first became aware of what was happening but it took another couple of years before I was able to get him to agree to get checked out. He's now a similar age to your husband and hasn't been able to articulate for many years now. I can understand some of his grunts and gestures but otherwise conversation is very one sided. I babble on though as he still appears to understand some of what I'm saying. If I ask him a question though I cannot give him a choice of either/or as that confuses him, just one item at a time.

Up until a couple of years ago he was still able to do jigsaw puzzles etc from relish-life.com but they're beyond him now. He used to be a very sociable man but now cannot tolerate the company of other people; similarly, he did still enjoy the odd restaurant visit but cannot cope now. I did manage to get a three hour weekly home respite session just before Christmas, but he refuses to engage with the carer and I'm not sure how long it will last.

Alzheimer's sucks and I've had to put my life on hold as a result. He does enjoy watching one or two old films and endless sessions of Morse, although he soon drops off to sleep in front of them. Although I can't go out while he's watching it does give me the chance to catch up on some of my home based activities in another room.
 

Joanie1947

New member
Oct 23, 2021
8
0
Hi all. I have come across this forum and thought I would join- my husband of nearly 46 years has just been diagnosed with Alzheimer’s - I feel as if my the bottom of my world has fallen out.
I have suspected something now for a couple of years - my only surprise was it was Alzheimer's- I thought it would have been vascular as he had type 2 diabetes kidney failure, aortic stenosis and neuropathy - his vascular system in the brain is ok
My mother had Alzheimer’s and passed away 25 years ago - support was non existent then but I can remember the sadness of her decline before passing away - so I’m full of emotion for the future
Please can I ask for a bit if help?
My husband has always preferred our own company over social and family events however he now doesn’t even speak with me - if I want a conversation - he will only answer if I ask a question - but won’t extend or continue- us this part if the decline or him being awkward?

I am now either irritable or resigned - seem to have lost my view of a happy future - does anyone have any help how I can rekindle my joy?
Thanks in advanced
I started a conversation strategy during lockdown which has proved to help me as my Husbands Dementia progresses. Each morning a girlfriend and I exchange emails. We may only talk about mundane things such as what's for dinner or catch up with each others family news,talk about supermarket bargains.The knowledge that you are connecting with someone else is invaluable. At the same time my Sister and I began to skype each evening while dinner was cooking. We each have a glass of wine ,but it could be a drink of your choice and we chat face to face for about half an hour.It feels like an event and something to look forward to each day.She was recently widowed so huge benefits all round.We need human contact Best wishes.
 

Aitch52

New member
Oct 16, 2021
3
0
My wife June (just 66) was finally diagnosed with frontotemporal dementia 18 months ago, the symptoms having started just 6 months prior to diagnosis. I do know that the symptoms and progression of FTD is very different from Alzheimer's however the issue you are facing regarding conversation (or lack of) struck me as, for us, conversation is a thing of the past. Conversation was a huge part of our life and is probably the thing I miss most of all having given up trying to have a meaningful conversations now as it only caused frustration on my part. My only advice would be not to push conversation as I found it just makes me miss it all the more. We are fortunate to have our two daughters living nearby and I take every opportunity when they visit to have a good chat about anything except dementia. I also see a counsellor once a fortnight which gives me a chance to 'unload' to someone who is not emotionally involved. I find this invaluable and would thoroughly recommend it. Unfortunately we are all on this journey, one way or another, that we never chose to be on.
 

Kapow

Registered User
Nov 17, 2019
147
0
Welcome to the site,and you will find many shoulders to cry on here,and the advice to be had is invaluable.I hear you....my husband is the same,just sits and stares at nothing and at one time he too loved to watch old films,over and over and over,loved anything connected to the Army,and sprung to life if something in the films triggered his memories of his Army days...so sad.Now,he has no interest even in old films,Army or otherwise.He has no conversation at all,no interests,opinions about anything.The shell is there of my husband,but the thing,the character that made him "him" has gone.Such a terrible disease.
 

Gerona

Registered User
Mar 25, 2020
11
0
My husband was diagnosed 2+ years ago and is 89 next week. He is still kind-hearted and can be funny, but also sharp with me and devoid of how I can be feeling. He was very I’ll recently with gallstones and developed sepsis very quickly. I was bereft at how I’ll he was and been very caring since his return from hospital, but already feeling frustrated again with how alone I feel, though I have good friends. I am 75 and generally fit and still try and plan activities, though difficult with Covid. For sure, as caring as our family are they do not fully understand how very difficult this transition is to coping with this cruel Illness.
 

marionq

Registered User
Apr 24, 2013
6,450
0
Scotland
I agree with all that has been said above about the loss of conversation but I do remember one consolation was how much my husband enjoyed singing. We used to go to a group called Musical Memories and he would join in lustily and we always came out with a smile on our faces. It may be that these groups have been halted because of the pandemic but it is worth enquiring with your local social services.
 

Suesue.G.

Registered User
Aug 9, 2020
46
0
This all resonates with me. My OH rarely speaks now. He mostly gestures although he does , sometimes, try to speak. I am sure he understands what I am saying to him when I tell him any family news, but, he doesn't always respond. If I am honest, he has never been a big conversationalist, but, I do miss talking to him about, even mundane things, and getting some kind of reply. This disease steals them piece by piece.
 

Sue741215

Registered User
Oct 18, 2019
16
0
Hi to Sue from another Sue with a husband with Alzheimers - I wonder how many of us there are. If your husband is like mine he just doesn't process what people say to him - if I want him to listen I ask him to look at me and listen but there is no real conversation. I am lucky that he is very sweet and always asks me if I have slept well each morning and comes to kiss me goodnight when he goes to bed which he chooses to do at 8pm every night.
I think the best advice I can give is to look after yourself and try to find a way of getting time to yourself. I am lucky to be able to afford help and advertised for someone to be a companion for my husband - he is still independent enough to be left but I found it hard to leave him to go out and enjoy myself. I advertised on the local next door site and couldn't believe it when I had 3 separate people offer to do it and would not accept payment - I now have two who each take him out for lunch once a week ( I pay for their lunch as well as his) which allows me to keep up with my friends. As far as he is aware they are just new friends and in a way they are. Hopefully the Alzheimers Society have or will contact you to offer help and may be able to link you with volunteers to visit either your husband or yourself and/or tell you about a local group for sufferers and carers. Even if your husband is not keen I would suggest trying to get him to go to a local group - even if he just seems to put up with it if it helps you it is worth doing. It is important to recognise that you need to do whatever you can (without unduly upsetting or neglecting him) to give yourself a reasonable life - the happier you are the better you will be able to cope with looking after him. I have also found the books 'Contented Dementia' by Oliver James (a carer) and 'Someone I used to Know' by Wendy Mitchell who has dementia herself.
The diagnosis of dementia is one of the worst things that can happen to both the sufferer and the carer - but somehow you move on and make the best life you can in the circumstances - live for the day and try not to dwell on the future. I wish you all the best in the difficult path ahead.
 

B72

Registered User
Jul 21, 2018
185
0
Dear Give me Grace,

How what you say resonates with me.

We’ve been married 55 years. Very much a self-sufficient couple, which makes it hard now. I’m a member of a number of u3a groups which have been a godsend. They’re all on Zoom at the moment, so I join in, and my husband sits next to me. He doesn’t join in the discussions, but he is stimulated by them and of course I join in. Also I go for a daily walk , early with my dog, and that definitely improves my state of mind. The birds singing, the fresh smell of the air, occasionally passing the time with other dog walkers, the sky, the trees. (I walk through a local park), it’s an unmissable tonic. I also walk with a friend ot two sometimes. I also take my husband out for a coffee if it’s fine enough to sit outside. We see people, watch them go by…. Any chance of you doing any of these things?

Re looking forward to things. That’s hard. A friend who has a tendency to moan said to me, “Tell me something you’re looking forward to.” That was hard. The future, what could I say? I told her we have enough to live comfortably on, a nice house, I look forward to nice weather and sunny days. And I could have added, my husband having a good day. (He has Lewes Bodies and the physical symptoms have just got bad). I have a fair idea of what’s ahead, but now on a good day, when the sun shines……
 

B72

Registered User
Jul 21, 2018
185
0
I’m not saying my philosophical attempts always work, but they help. And I know that a) I’m lucky to be able to leave my husband to go for a walk, b) That when our 10 year old dog dies I shouldn’t get another one. It would be one responsibility too many, and c)I’m lucky to have parks to walk through. But what I’m trying to say, is that we need to try to find the positive things for now, and cross the future when it happens.
 

Newanne

Registered User
May 1, 2010
37
0
clitheroe
Hi my husband is in early stages of dementia and I'm finding it difficult to adapt to the many changes including the lack of conversation. A few weeks age, I decided to try and I asked about somthing from his school days, ha, we then spent an hour chatting and laughing about his primary school days. It was lovely. If I ask about anything in the future, or recent events I don't get much, if anything. Now if I want to chat it's limited to the distant passed but that's better than nothing. X
 

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