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Mr D has,Alzheimers, cognitive impairmrny and physical disabilities

Gorgeous Gail

Registered User
Apr 17, 2020
56
Hello @Daisy1950 - welcome! You are right, it is lonely, frustrating and difficult!

My OH was only diagnosed in January and we were just getting things in place for him to attend activities to help him to socialise more, when we went into lockdown. Unlike your OH, mine is not contented. He is very depressed and is regularly saying that he has had enough and just wants to die. The Doctor has said that he has every right to feel depressed as the life he had planned has been taken away from him but as you say, what about our plans?

I had just taken voluntary redundancy and early retirement (I'm only 57 and my husband is 79). We have a touring caravan and the plan was for me to get a part time job and for us to have lots of weekend breaks in our van. Although I am able to tow the caravan, due to my OH having mobility issues and liable to fall, getting in and out of a caravan would be unsuitable for him so it's going to have to go as soon as lockdown allows.

I am working part time and to be honest, I look forward to going to work to get away from him but am frightened that as his mobility issues get worse I may have to give this up to care for him 24/7. I'm really not sure that I could cope with that.

Joining this forum has been good for me to get advice from people who are in exactly the same position and a good place to sound off when I have had a bad day.
 

Vitesse

Registered User
Oct 26, 2016
210
I’ve just been reading your posts and thought I’d add my thoughts. Much like many of you, my husband is 20 years older than me. He is 90 and I am 69. His actual diagnosis of AD was in early 2017, but we had been aware of it for a couple of years before that. We had always spent most of our time together and i thought I would be able to cope. The last 2 years have been awful. His speech is extremely impaired, so I have no idea what he is trying to tell me. He has refused to go to a Day Centre, and refused to have a PA take him out, so I am here 24/7 coping on my own. The only saving grace (and it’s a big one) is he is not incontinent, so i don’t have that to contend with. His understanding of things is very low, and he has hearing problems, so there is no chance of explaining anything to him.
Reading some of your posts, sounds as if you may be able to get some carers to help you before you reach rock bottom. If there is any chance you can introduce them into your lives, please try to. looking back, I should have had those conversations while there was a chance he could be somewhat rational. Don’t forget that as your husbands are younger than mine, you may have years ahead of you, and I would advise anyone to make sure they take any help they can get. Please don't fall into the hole I fell into!!!!
 

Daisy1950

Registered User
May 20, 2020
20
We've only been together 17 years and not married, who can foresee what the future holds and the reasons why. It's horrendous watching an intelligent man reduced to a dependent child. A roller coaster of emotions all the way, sometimes angry, sometimes sad, sometimes hate, sometimes love, sometimes frustration, sometimes even laughter ......
Yes, you've nailed it. Love him, hate this disease.
 

Daisy1950

Registered User
May 20, 2020
20
Hello @Daisy1950 - welcome! You are right, it is lonely, frustrating and difficult!

My OH was only diagnosed in January and we were just getting things in place for him to attend activities to help him to socialise more, when we went into lockdown. Unlike your OH, mine is not contented. He is very depressed and is regularly saying that he has had enough and just wants to die. The Doctor has said that he has every right to feel depressed as the life he had planned has been taken away from him but as you say, what about our plans?

I had just taken voluntary redundancy and early retirement (I'm only 57 and my husband is 79). We have a touring caravan and the plan was for me to get a part time job and for us to have lots of weekend breaks in our van. Although I am able to tow the caravan, due to my OH having mobility issues and liable to fall, getting in and out of a caravan would be unsuitable for him so it's going to have to go as soon as lockdown allows.

I am working part time and to be honest, I look forward to going to work to get away from him but am frightened that as his mobility issues get worse I may have to give this up to care for him 24/7. I'm really not sure that I could cope with that.

Joining this forum has been good for me to get advice from people who are in exactly the same position and a good place to sound off when I have had a bad day.
You sound worse off than me. I just don't know what to say. Retirement seemed such a good idea. My job which I'd previously loved changed so much I hated it but this? Moments of peace in the garden, with a book but no real rest, until sleep.
 

Daisy1950

Registered User
May 20, 2020
20
I thought having The Banjoman in my life was a second chance too, and it was. Unfortunately it didn’t last as long as I expected and we weren’t married but I have memories of the good times before dementia crept up on us and I became his carer and they keep me going now after he died last October. I deliberately think back to those times and do my best to forget about the rough ones.
Well done you. When your life is completely tied to one person and keeoing them safe & well, the gap when they have gone must be enormous.
 

Daisy1950

Registered User
May 20, 2020
20
It's just so difficult, not only to see the man you love deteriorate but to see life disappearing and not being able to do anythi mng but wait for release.
It feels like just getting through the days, taking joy where I can, but waiting for death to release one of us and though I cannot picture life without him, how would he cope without me? A home?
 

Daisy1950

Registered User
May 20, 2020
20
We've only been together 17 years and not married, who can foresee what the future holds and the reasons why. It's horrendous watching an intelligent man reduced to a dependent child. A roller coaster of emotions all the way, sometimes angry, sometimes sad, sometimes hate, sometimes love, sometimes frustration, sometimes even laughter ......
Read that out to mr d. He started singing, keep right on to the end of the road!
 

jennifer1967

Registered User
Mar 15, 2020
322
my husband seems to have gone down a bit. he is tired all the time and sl;eeps through the evening. his copd is not great either. had the ambulance out to him as he was crying with pain and was very breathless. it went in the end so stayed home as was shielding so they were reluctant to take him to hospital. i feel like im losing him and am very sad.im not and he will get over this but its very lonely to be on my own all the time. im his only carer. its a huge responsibility. just feeling a bit low and wondering what the future holds
 

Just me

Registered User
Nov 17, 2013
262
my husband seems to have gone down a bit. he is tired all the time and sl;eeps through the evening. his copd is not great either. had the ambulance out to him as he was crying with pain and was very breathless. it went in the end so stayed home as was shielding so they were reluctant to take him to hospital. i feel like im losing him and am very sad.im not and he will get over this but its very lonely to be on my own all the time. im his only carer. its a huge responsibility. just feeling a bit low and wondering what the future holds
It is lonely and a big responsibility to be on your own when the person you are looking after becomes ill.
You have to make decisions such as calling for an ambulance without having anyone to talk it through with and often the person with dementia can’t describe how bad the pain is etc.
I never know if I’m doing the right thing or not and often feel that doctors think I’m overreacting/wasting their time but best to ask for advise than let someone suffer.
 

White Rose

Registered User
Nov 4, 2018
667
When your life is completely tied to one person and keeoing them safe & well, the gap when they have gone must be enormous.
This is certainly something that we all understand, despite all the frustrations and heartache it's still hard to consider a care home or to imagine life without them when they die.
 

Gorgeous Gail

Registered User
Apr 17, 2020
56
You sound worse off than me. I just don't know what to say. Retirement seemed such a good idea. My job which I'd previously loved changed so much I hated it but this? Moments of peace in the garden, with a book but no real rest, until sleep.
@Daisy1950 I don't consider myself too badly off at the moment. My OH can still be left alone during the day for a few hours whilst I work, shop and walk the dog. It's just his moods which are very up and down which get to me as I feel I'm doing as much as I can to help him have a better life but he just doesn't want the help as he's too stubborn.

I too hated my job in the end, due to a nasty bullying boss and left with a bad taste in my mouth after 40 years with the same company. This was supposed to be a time when I got the work/life balance right and be able to spend some quality time with my OH before it got too late. Unfortunately, with his mobility issues as well as the Dementia, I fear I have left it too late. We're off tomorrow to look at mobility scooters to try to make him a little more mobile when he is out of the house. He's been on anti depressants now for a week so hopefully another couple of weeks and they may start to kick in.

Enjoy your peace and make the most of it whilst you can.
 

Jan L

Registered User
Mar 26, 2020
26
It seems we are all in the same boat, I have been married to my Husband over 50 years, (an event I didn't wish to celebrate last year) and he has been in my life since I was 15, all my adult life. Our relationship started to change 20 years ago, when he was made redundant, followed 12 months later his pension fund went into administration, he had paid into it for over 35 years and it was our future security. He totally buried his head in sand and wouldn't discuss it, he was acting out of character and I put is down to the shock of losing everything. His Mother was in her late 80's and suffering from Vascular Dementia and we were looking after her too, so there was plenty going on you could say would affect someone's behaviour. His Father had developed Alzheimer's in his late 50's and had to take early retirement at 61, he died aged 80 and during those years we had to support his Mother with his care, taking them on holiday with us and having them round regularly for Sunday lunch and visiting most days. Having lived through this with his Father it didn't take me long to realise that my Husband was going the same way, even though his Brother and other close relatives told me I was wrong. Unfortunately, he has never acknowledged he had a problem, he blamed me, so conversations about things have never taken place and now will never happen because he doesn't understand anything you say to him and he can no longer speak. He refused to seek medical attention until I managed to get him to the Doctors 5 years ago this April when he was diagnosed with combined Alzheimer/Vascular Dementia, moderate/severe. The Specialist said that a brain scan he had had in 2007 when he lost the sight of one eye (the nerve snapped) showed up the problem but no one picked it up, but all that is another story, but just confirmed what I knew back then and a few years before. I have had no day care or Carers, although I did realise at the end of the winter that I would have to do something, because his mobility is deteriorating so if it difficult for us to go out, I can't leave him on his own in a room let alone the house. He can't find the toilet and when I take him he hasn't a clue what to do when he gets there. I feel as if I have been on lock down since last autumn. I didn't pursue things because of Covid-19 as I didn't want Carers in the house and there were others who might be in greater need and Day Care Centres are closed. The retirement we had hoped for never really happened and I feel so resentful at all the years we were tied to supporting his parents when we should have been able to lead our own life for some of that time. With the job and financial insecurity of 2000 - 2008 we were afraid of spending any money on holidays and by then he wasn't interested in making plans to do anything, he would come to places with me but there was no fun to be had with the decisions and the planning. In the end I gave up, there didn't seem to be any point. I returned to the same self catering accommodation in Cornwall (because it was familiar to him) and easier for me, but it just got too much hard work and a worry when we were away from home in case I became ill and he wouldn't know how to get help. I find these days I can't live with him but I can't live without him either and at 74 my own life is passing me by. My Husband in 77 this week and no longer knows my name, although he doesn't like me out of his sight and realises I am important to him. Sorry this is a bit long.
 

Roseleigh

Registered User
Dec 26, 2016
322
It's lonely, frustrating and so difficult . He is generally content, until I shout in frustration and then he just says, please don't shout. This is no what I thought my retirement would be
I feel similarly. I thought retirement would be doing DIY together, visiting the children/grandchildren, helping them with DIY , having his support to support my aged mother and going on occasional holidays (I didnt have huge travel plans as he had a phobia of flying). It wasnt to be. :(

After a few years of somehow not being quite the person he had been while still working (now I know why), the early signs became clear. Four years of caring and now hes in care and we have a horror show pandemic.
 

White Rose

Registered User
Nov 4, 2018
667
I find these days I can't live with him but I can't live without him either and at 74 my own life is passing me by. My Husband in 77 this week and no longer knows my name, although he doesn't like me out of his sight and realises I am important to him.
Tragic to read your story @Jan L, some people do seem to be given such a bad deal in life. Well all is not lost, perhaps you can get him into respite and take a holiday yourself - difficult right now with Covid19 but something to plan for. It will be hard to do as you're not used to being without him but wouldn't it be such a shame to regret for the rest of your life not doing the things you've always wanted to, you've given your life to caring for others, time to have something for yourself.
My partner is about the same age as your husband, he's in 5th year since diagnosis of Alzheimer's/Vascular, not quite as far along as your husband, he does still speak (mostly rambling, a lot of complaining and not much I can understand) but he doesn't really understand anything anyone says to him, so sad. I'm younger than him and we've both had full and interesting lives, together and separately, so I've nothing much to complain about but the constant need for attention and the anger and mood swings does get me down.
Do something nice for yourself, you deserve it!
 

Jan L

Registered User
Mar 26, 2020
26
Tragic to read your story @Jan L, some people do seem to be given such a bad deal in life. Well all is not lost, perhaps you can get him into respite and take a holiday yourself - difficult right now with Covid19 but something to plan for. It will be hard to do as you're not used to being without him but wouldn't it be such a shame to regret for the rest of your life not doing the things you've always wanted to, you've given your life to caring for others, time to have something for yourself.
My partner is about the same age as your husband, he's in 5th year since diagnosis of Alzheimer's/Vascular, not quite as far along as your husband, he does still speak (mostly rambling, a lot of complaining and not much I can understand) but he doesn't really understand anything anyone says to him, so sad. I'm younger than him and we've both had full and interesting lives, together and separately, so I've nothing much to complain about but the constant need for attention and the anger and mood swings does get me down.
Do something nice for yourself, you deserve it!
Thank you for your kind words and encouragement, I know what I have to do but am afraid of taking the first step to letting go, the idea of a holiday without him there to share it upsets me just thinking about it. He is still in his PJ's I got him out of bed at 9.30 am, took him to the toilet, washed his hands and face, cleaned his teeth, shaved him sorted his breakfast. He only drank half his coffee before he got up, went into the front room, sat on the settee and went back to sleep. I will wake him again to give him his lunch, try and persuade him to have a shower and get dressed, then perhaps we can walk up the close or go a ride round in the car but I am not holding my breath, I feel another day in my life slipping away from me. I wish you well in dealing with your current situation and the journey ahead. Once again thank you for your reply.
 

Jan L

Registered User
Mar 26, 2020
26
I feel similarly. I thought retirement would be doing DIY together, visiting the children/grandchildren, helping them with DIY , having his support to support my aged mother and going on occasional holidays (I didnt have huge travel plans as he had a phobia of flying). It wasnt to be. :(

After a few years of somehow not being quite the person he had been while still working (now I know why), the early signs became clear. Four years of caring and now hes in care and we have a horror show pandemic.
@Roseleigh , you sound like you have had a similar experience to me. It is the fact that he deluded himself for so long, blamed everything on me and refused to seek help, so we never at any stage were able to share our fears and say the things you would like to say in these situations. He would just stand up and leave the room. I gave up trying, it put such a wedge between us which is difficult to live with when we have shared and supported each other through the usual problems you have to deal with when you are going through life. It has led me to feel a of frustration, anger and guilt.
 

canary

Registered User
Feb 25, 2014
12,844
South coast
It is the fact that he deluded himself for so long, blamed everything on me and refused to seek help, so we never at any stage were able to share our fears and say the things you would like to say in these situations.
Many (most?) people who have dementia are actually unable to comprehend that they have anything wrong with them. It is not denial, or delusion, it is a thing called anosognosia, which means that the part of the brain that has self awareness about their own condition is damaged. Consequently, they are aware that Something is not right, but are truly unable to see that this Something is actually them, so they blame everything else - partners, family, work, various institutions and even where they live. It is no good discussing things with them, because in their wn mind they truly believe that there is nothing wrong. OH will recite his diagnoses, but will not accept that he has in anyway changed.

Anosognosia is common, but little talked about and is, IMO, the hardest symptom to deal with. It means that, like you, I cannot discuss anything with OH. The slightest merest suspicion of criticism will send him in a rage and I have been accused to telling him what to think, of treating him like a child etc etc. So now I do not bother. Im on my own with no one to talk things over with, no one to advise me, no one to say "let me do that for you" and no-one to give me a hug. Its hard. I took early retirement and its not how I envisaged spending it either.

There is nothing you can do about it, though. so I dont feel guilt when I just get on with things and letting go of the expectations has freed me from the frustration and anger. Im not perfect mind - Ive been having lots of problems with technology and OH used to be a techno geek, but I cant ask him anymore and I dont know where to find answers. I confess that lots of cushions have been slung around and my voice has been somewhat raised. I know its not his fault, though and Ill go make another cup of tea (or glass of something stronger!)
 

White Rose

Registered User
Nov 4, 2018
667
Ive been having lots of problems with technology
@canary are your techno problems anything that you can post, I'm sure there're lots of folk on here who would be happy to help.
Having to do everything does get too much sometimes doesn't it - usually I manage to just get on with it but occasionally I'll blow up. Like the other morning when he was up early, I'd helped him dress and was then clearing up the kitchen (having left it from the night before) and he started complaining that there was no breakfast, I was in a real grump, told him to make his own (felt horrible saying it because he can't do it of course and it's not his fault). Sometimes I just wish someone would make me breakfast!
 

Just me

Registered User
Nov 17, 2013
262
. Im on my own with no one to talk things over with, no one to advise me, no one to say "let me do that for you" and no-one to give me a hug. Its hard. I took early retirement and its not how I envisaged spending it either.
Although it’s my mum, not a husband I find not have anyone to talk things over with hard, even just little things such as what to have for dinner.
I was made redundant and had all sorts planed. One year in and mum ‘developed’ dementia and how my world has shrunk.
 

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