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am I strong enough - selfish thoughts

NEESE201

Registered User
Oct 16, 2020
21
0
Sudbury
I am 64 and my husband is 65 - he has been diagnosed with early onset Alzheimer's last october but has probably had it for about 3 years - we are devastated have only known each other 12 years and married 4 - he has changed so much he was a lively funny kind social person very independent and really looked after me - now he has changed into a very quiet , no confidence , muddled , slow, cant cope person who does not hardly talk - he now does not seem to want to do much at all except watch tv and to be told what to do as he cannot plan - he is so moody and says things he does not remember and would never had said before - i feel so so tied to him and tired - already - (i have fibromyalgia -] he shows no affection or apathy for me - and i know this will get worse - this awful illness does not only ruin one life but two - i am also missing the man i loved - this stranger has appeared so sorry if i offend anyone - who is managing so well with this - Neese
 

ADONCIA

New member
Aug 11, 2021
5
0
I am 64 and my husband is 65 - he has been diagnosed with early onset Alzheimer's last october but has probably had it for about 3 years - we are devastated have only known each other 12 years and married 4 - he has changed so much he was a lively funny kind social person very independent and really looked after me - now he has changed into a very quiet , no confidence , muddled , slow, cant cope person who does not hardly talk - he now does not seem to want to do much at all except watch tv and to be told what to do as he cannot plan - he is so moody and says things he does not remember and would never had said before - i feel so so tied to him and tired - already - (i have fibromyalgia -] he shows no affection or apathy for me - and i know this will get worse - this awful illness does not only ruin one life but two - i am also missing the man i loved - this stranger has appeared so sorry if i offend anyone - who is managing so well with this - Neese
 

ADONCIA

New member
Aug 11, 2021
5
0
Hi and so sorry to hear of your husbands diagnosis, I can fully understand how you are feeling as Alzheimer's robs everyone in a family of a normal life which I know from experience. My Mother has the early stages of this awful disease and a disease is what it is sadly, I am her sole carer as my Father and sister sadly died very close to each other which at times I can feel so hurt that they are not here to help in the situation and also find it hard when I look at the person who was my Mother and is now a stranger who becomes more demanding as time goes on. I do find that my patience can wear very thin with her and then I go on a guilt trip because I know she cant help repeating herself again and again always asking the same questions. Please don't beat yourself up we can only do some much before we break and then have to pick our selves up, brush ourselves off and start all over again
 

Thethirdmrsc

Registered User
Apr 4, 2018
626
0
Hi @NEESE201 no one lives well with this disease unfortunately. It will rob you if you are not careful. At the moment I do not have any uplifting words to say to you. But distraction, deflecting techniques, and also finding a quiet place to go to helps, and mine was the bathroom.
 

Scraggy mag

Registered User
Oct 30, 2018
41
0
My husband has been diagnosed for three years but I think it is many years more he is really bad now I don't get any help and I am struggling because I feel no feelings towards him I know he can't help it and he was a wonderful husband before this I too feel I am being selfish but I really hate our life he is like a zombie no thing back but we have to carry on life is so cruel I try to remember the good times we have had 35 years so happy .
 

Thethirdmrsc

Registered User
Apr 4, 2018
626
0
My husband has been diagnosed for three years but I think it is many years more he is really bad now I don't get any help and I am struggling because I feel no feelings towards him I know he can't help it and he was a wonderful husband before this I too feel I am being selfish but I really hate our life he is like a zombie no thing back but we have to carry on life is so cruel I try to remember the good times we have had 35 years so happy .
Hi @Scraggy mag do you not have access to carers or mental help support at all? It’s astonishing and disgraceful that so many people are living with this on their own.
 

nae sporran

Volunteer Host
Oct 29, 2014
9,092
0
Bristol
@NEESE201, sorry you are struggling with fibromyalgia as well as caring for your husband. That feeling of losing someone while they are still physically here is familiar and common.
Can you or have you got outside carers to help with personal care and a sitting service to give you a break. A carer assessment and a care.needs assessment from social services would be worth exploring if you have not already done so.
 

Gerona

Registered User
Mar 25, 2020
17
0
I am 64 and my husband is 65 - he has been diagnosed with early onset Alzheimer's last october but has probably had it for about 3 years - we are devastated have only known each other 12 years and married 4 - he has changed so much he was a lively funny kind social person very independent and really looked after me - now he has changed into a very quiet , no confidence , muddled , slow, cant cope person who does not hardly talk - he now does not seem to want to do much at all except watch tv and to be told what to do as he cannot plan - he is so moody and says things he does not remember and would never had said before - i feel so so tied to him and tired - already - (i have fibromyalgia -] he shows no affection or apathy for me - and i know this will get worse - this awful illness does not only ruin one life but two - i am also missing the man i loved - this stranger has appeared so sorry if i offend anyone - who is managing so well with this - Neese
I feel the same except we are older. My husband with Alzheimer’s is 88 and I am 75. He has changed too, but still can be funny. We had a lovely day yesterday visiting our daughter and her partner, and my first encounter with my husband a d I was feeling mellow after a good day out….but he hits me with criticism of my daughter’s partner, who works very hard. My husband said if he keeps eating the way he dies he will get fat! I was appalled as if anything I commented yesterday he looked slimmer, and he us average build for his height. Another criticism a few weeks ago after meeting up with friends he said they were all drunk, which could not have been further from the truth. Is this goi g to get worse? My problem is I get so depressed about it all, and how to cope with the future. I had a very optimistic outlook about life but now I feel deflated at every turn.
 

Gerona

Registered User
Mar 25, 2020
17
0
I feel the same except we are older. My husband with Alzheimer’s is 88 and I am 75. He has changed too, but still can be funny. We had a lovely day yesterday visiting our daughter and her partner, and my first encounter this morning with my husband and I was feeling mellow after a good day out….but he hits me with criticism of my daughter’s partner, who works very hard. My husband said if he keeps eating the way he does he will get fat! I was appalled as if anything I commented yesterday he looked slimmer, and he us average build for his height. Another criticism a few weeks ago after meeting up with friends he said they were all drunk, which could not have been further from the truth. Is this going to get worse? My problem is I get so depressed about it all, and how to cope with the future. I had a very optimistic outlook about life but now I feel deflated at every turn.
 

lollyc

Registered User
Sep 9, 2020
775
0
Please don't feel that you are in the minority, and that most people are coping well with this. They are absolutely not - despite all the happy, smiley, leaflets that would have you believe otherwise.
I care for my Mum, so a different relationship, but I cannot put into words how utterly relentless, depressing and miserable it is. You are powerless to control it and have no idea when it will end.
All I can say is try and get some respite - be that a sitter, or a daycentre or club that your husband can attend unaccompanied.
I sincerely doubt that you will offend anyone here. We all understand those very dark thoughts, that would send the non-dementia world into apoplexy - because they really have no idea what this is like.

I would also recommend "The Selfish Pig's Guide to Caring", which will hoefully make you smile, and realise that you are not alone.
 

Splash

New member
Oct 12, 2021
7
0
I am 64 and my husband is 65 - he has been diagnosed with early onset Alzheimer's last october but has probably had it for about 3 years - we are devastated have only known each other 12 years and married 4 - he has changed so much he was a lively funny kind social person very independent and really looked after me - now he has changed into a very quiet , no confidence , muddled , slow, cant cope person who does not hardly talk - he now does not seem to want to do much at all except watch tv and to be told what to do as he cannot plan - he is so moody and says things he does not remember and would never had said before - i feel so so tied to him and tired - already - (i have fibromyalgia -] he shows no affection or apathy for me - and i know this will get worse - this awful illness does not only ruin one life but two - i am also missing the man i loved - this stranger has appeared so sorry if i offend anyone - who is managing so well with this - Neese
 

Splash

New member
Oct 12, 2021
7
0
You describe my position exactly ,except we are in our 80
s and have been together for 60 years.My OH has turned into a quite,no confidence,muddled slow can’t cope person.He just won’t accept that we need help ( I too have fibromyalgia) how can I get him to accept that at least I need help,particularly outside which he insists he can do.If I try to talk to him about it he gets upset and says he is useless.That results in me feeling guilty,it’s a never ending circle that gets nowhere.Any advice please
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,281
0
Nottinghamshire
Hi @Splash . Welcome to dementia talking point.

I didn't ask dad if he needed help - he'd have said no. Instead I just went ahead and organised it slowly started with some one to help with the cleaning and gardening and gradually increasing he help as he needed it.

Don't talk to him about it, my dad always said he was fine and whatever he needed I would do for him 🙄. Eventually I couldn't so I'd just tell him I had to work and "my friend" was looking for a little job so she'd be doing whatever was needed for him. Just think of something you think he'd accept (you have a bad back/leg/whatever and need help until it's better...) Or course it will never get better but he doesn't need to know that 😉

I know this goes against the grain when you're used to sharing and discussing everything but, unfortunately, dementia takes away the understanding of the true situation so you'll have to make the decisions for both of you now.
 

Knitandpurl

Registered User
Aug 9, 2021
137
0
Lincolnshire
Hi Splash. I do often feel just like you, I’m 65, and husband with dementia 72. I join dbthis group in August and it has really helped me ‘feel’ better, a bit more motivated and a bit less like crying all the time. I have found it so good to be able to say just how I feel. Hopefully it will help you too knowing there is a whole army of us out there. Big hugs.
 

Violet Jane

Registered User
Aug 23, 2021
774
0
Almost no PWD will agree to carers or anyone else coming in to the home. People with dementia generally deny that they have a problem and lack insight into their limitations. If you ask them whether they want carers in / want to go to a day centre / want to go into respite the answer will invariably be 'no' and so you just have to go ahead and organise what you need without seeking agreement first. People on the forum have used different methods to get carers in. They often involve starting with one or two visits a week, ostensibly to clean / help with the housework, and building up from there. The PWD may be more inclined to accept the suggestion of help if it is made by a professional such as a doctor or social worker.
 

Vitesse

Registered User
Oct 26, 2016
261
0
My husband has severe AD and I totally recognise the descriptions above. When he seemed to have some sort of understanding, I used to ask him whether he wanted to go to the Day Centre, or have a PA. This was a mistake, because the answer was always NO. It left me doing everything and falling apart. Last year, as things started to get even worse, I introduced a PA gradually and later built it up. He now accepts her as a friend and reacts well to her. Lately, I’ve employed another PA to come in at the weekend to help with personal care, and it’s OK also far. i have decided to do anything I can to keep him at home, while saving my sanity!!
 

john1939

Registered User
Sep 21, 2017
191
0
Newtownabbey
Please don't feel that you are in the minority, and that most people are coping well with this. They are absolutely not - despite all the happy, smiley, leaflets that would have you believe otherwise.
I care for my Mum, so a different relationship, but I cannot put into words how utterly relentless, depressing and miserable it is. You are powerless to control it and have no idea when it will end.
All I can say is try and get some respite - be that a sitter, or a daycentre or club that your husband can attend unaccompanied.
I sincerely doubt that you will offend anyone here. We all understand those very dark thoughts, that would send the non-dementia world into apoplexy - because they really have no idea what this is like.

I would also recommend "The Selfish Pig's Guide to Caring", which will hoefully make you smile, and realise that you are not alone.
Hello there. I am sorry to say this but I am afraid that things never get better with Dementia, they just get worse. My wife is in a care home now as I could not cope with the all night rampages , refusing medication, refusing to shower and change her clothes. When I took her out she would accost strangers to tell them what an awful person I was. Her language was not something I could repeat on a public forum. Sorry to be so negative, but that's how it is. Take Care.
 

Splash

New member
Oct 12, 2021
7
0
Hi Splash. I do often feel just like you, I’m 65, and husband with dementia 72. I join dbthis group in August and it has really helped me ‘feel’ better, a bit more motivated and a bit less like crying all the time. I have found it so good to be able to say just how I feel. Hopefully it will help you too knowing there is a whole army of us out there. Big hugs.
 

Splash

New member
Oct 12, 2021
7
0
Thanks for all the support.I think one of the hardest things about dementia in one you have been with for 60 years is almost letting the person you knew go and accepting the person you now have even though they are different and yet the same.
I have taken the advice about just doing and not saying,so we will see what the reaction is from OH
 

Knitandpurl

Registered User
Aug 9, 2021
137
0
Lincolnshire
Yes, think one of the saddest times was when I realised I had lost my ‘best friend’ - he can’t deal with anything not being all right with me anymore and just gets angry if I tell him about anything wrong or that’s irritated me about any of the children or my Mum’s ‘Home’. He used to be so supportive. 🥲 But, on the other hand he still likes to make me a cup of coffee in the morning, has the same daft sense of humour…. We just have to take each day as it comes and make the best of what we DO still have.