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am I strong enough - selfish thoughts

VWALKM210

New member
Apr 29, 2021
2
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
Hi @ NEESE201:
My husband was diagnosed in February this year aged 60. Like you, I think there were changes in him 2-3 years before diagnosis. I completely understand and empathise with every word you have written here. I also do not want to offend anyone but I feel like this illness has dragged my husband in to a black hole: he was intelligent, interested in everything, an avid reader, had a wonderful dry sense of humour, absolutely loved music and adored me, his 3 girls and his grandchildren. Now it is complete apathy with everything, even eating, drinking and moving around (although he is mobile). I have no tips for dealing with this at all but know I am on the same page as you.
 

VWALKM210

New member
Apr 29, 2021
2
0
I am 87 caring for my husband of 93 and feel so sorry for couples having to endure this at a much younger age. I think of the boy I met 70 years ago and look at the almost empty shell he is today and feel sad.
But then I think how lucky we have been to have had good times and bad for all these years and come through them reasonablely unscathed, and how well he's always looked after me and the kids and grandhildren.
You younger carers are missing out on so much more than me . It's important that you try to have time to yourself and to do the things you like doing and I hope you can manage to arrange this. Good luck
Mickeyplum, you have truly just thawed my heart. I have been grieving all that my husband still had to give me, his children and his grandchildren (they have lost their best friend and I my soul mate). I have felt ( unlike me) very angry when I’ve seen older couples still out and about, still enjoying life together and sharing interests and guilty for me feeling this way. Your humility and advice I will try to cling on to. Thank you.
 

Knitandpurl

Registered User
Aug 9, 2021
211
0
Lincolnshire
I am 70 and my wife of 68 was diagnosed with Posterior Cortex Atrophy about 4 months ago. I hate the fact she finds it difficult to instigate conversation and little memory. It is like living with a cardboard cutout. It’s definitely true that it ruins two lives not one. She is on donepezil and can’t really say it makes any difference really. Good to read other people’s accounts and experiences.
Welcome to the Group Robbie Rainbow 🌈, hope you find it helpful. My OH has PCA too, he has been on Donepezil for about4 years now, and for home it did slowly make a difference, his speech improved and also his confidence levels. I think what helped most though was he isn’t so depressed, we went on some holidays and visited friends and family and he gradually realised life was still worth living. He responds really well to music and we went to a few concerts/shows at our local theatre, it gave him a real lift. 4 years on his memory, confusion and anxiety are worse but in many ways he is better, people who don’t know often just think he’s a bit eccentric. But - I have had to change loads!! Good luck, if things don’t improve maybe some antidepressants might help, but I would try to get her involved in some things she used to really enjoy- maybe you could rope in some friends or family to help. Though I find my OH copes better with people in ones or twos.
 

Ding Dong

Registered User
May 1, 2013
20
0
My mum had dementia & it was very hard, but I guess it must be so much harder emotionally to watch a spouse with dementia change. I found going to a dementia support group helped, hearing the problems others were coping with. Sometimes getting ideas to try & other times just thinking “ thank goodness I don’t have that particular problem to deal with”.

My mum had dementia for 11 years & it seemed to go through 3 phases. The first 3 years she was undiagnosed & was very tearful, needy, could not cope with any of the normal everyday things like how to turn on the TV, making a phone call, unable to find / recognise things. For example, I would leave a plate of sandwiches in the fridge for tea & she would tell my dad ( who was blind) that she couldn’t find any sandwiches in the fridge. When I drove back to their house & got the sandwiches out the fridge she would look bewildered.

Then we seemed to enter a new phase of the illness. My mum started becoming increasingly aggressive which was so unlike my lovely, quiet, shy mum. She started hitting, kicking & throwing things & often stormed out of the house in a temper. My dad became afraid after she hurt him several times. After one violent incident he pressed an emergency button & police came & mum went into care. It was heartbreaking. The aggression continued for about 2 years & & twice the care home were considering having her transferred to a more secure home because she was violent to carers & other residents. I think it was frustration.



But then it gradually disappeared, she became less angry, less tearful & for the last 6 years of her life she once again became a sweet loving person. She wasn’t the same person as before: she could not remember being married or that she had attended my dad’s funeral & often asked when her mum was coming home. She knew my name & that she loved me, but wasn’t sure who I was. When I worried because I had been away for 2 weeks on holiday, she wasn’t aware that I hadn’t been there. She loved cuddles, singing, laughing and eating sweets.

So very different phases of her illness. After 3 years of looking after her at home as well as looking after my own family, I was worn out physically & emotionally. It was hard seeing mum go into a home especially as dad died soon after, and it took a long time for her to settle. I felt guilty but it was such a relief no longer having to coax her when she refused to wash & worrying when she used to roam around at night, sometimes leaving the house & we didn’t know where she was. It was a relief knowing she was physically safe in the care home. I now stopped being her “enemy” & became the “chocolate lady” who brought sweets & cakes and sang with her. It may not be the same for everyone with dementia but once I accepted mum needed to go into care I think it took a lot of the anxiety out of her life as well as mine. I hope this gives you all hope that things might improve even though your loved one is not the person they used to be
 

Annette47

New member
Nov 14, 2020
2
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
 

Annette47

New member
Nov 14, 2020
2
0
Regarding the post from NEESE…I could have written the exact same email. I’m nearly 75 and my H is 75 soon. married for 52years. It has taken nearly a year to get through to our GP that i have had concerns about his behaviour and forgetfulness, and that it has affected MY health too. Finally, having spoken to & received the backing of a local memory support worker, I have convinced my Gp to call in my H for an “annual health check” - much overdue!-in order for the GP to assess him. My H is in denial of his bad memory/behaviour/ mood swings etc. it’s like living with a different person having known him since we were both 11 at school together. I too have felt a lot of guilt,anxiety and frustration…However, I am hoping that when he has had his assessment, we shall both know how to go forward….
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,449
0
Yorkshire
hello @VWALKM210
a warm welcome to posting on DTP
it's good that members' posts are helping you
now you've started, do keep posting ... we're here to share experiences and offer support
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,449
0
Yorkshire
hello @Annette47
a warm welcome to you too
it's good to hear that the memory clinic support worker listened to you and has helped get your GP to be proactive
keep posting with anything that's on your mind, folk here understand and will help
 

mickeyplum

Registered User
Feb 22, 2018
212
0
Oh Mickeyplum. How thoughtful of you, I suspect we equally as sad , sitting here with tears in my eyes. But also so sad for you and wonder how you cope , this is often such hard work now in my 60’s do not know how you manage. As you say we have to be grateful for the wonderful years we have had and even the good moments now - I can hear my OH singing upstairs while he gets washed and dressed( it takes him ages but he wants to do it on his own…..) hoping you have a good day. 😃
Well Knitandpurl. you ask how I cope. On the days when things are as well as they ever can be and I'm feeling a little brighter myself I go to bed reasonably smug and proud of myself.
On other days days I feel as if I'm caring for a stranger, which in a lot of ways, he is., and the lack of any proper communication gets me down.
I still say 'I love you ' every day, though I wonder what that means to me now. He returns the sentiment and I'm sure doesn't know what it means any more either. But it's important to me to try and maintain any tiny bit of what we once had.

The other evening I tucked him in bed after changing his sheets and pyjamas and I said, 'There you are - nice warm bed and nice warm 'jamas.' He replied, ' Yeah an a nice warm wife too....there's just one thng wrong...well two actually.'
'What's that?' I asked
He said, ' I've forgotten to take my teeth out,' and he promptly whisked his dentures out, put them under his pillow and closed his eyes.
Who says the age of romance is dead?

You have to smile sometimes and I'm trying never to lose my sense of humour at moments like those.
You are still young Knitandpurl and have many years of living to do so please try and make some time for your own needs and take care of your own health too
 

Knitandpurl

Registered User
Aug 9, 2021
211
0
Lincolnshire
Well Knitandpurl. you ask how I cope. On the days when things are as well as they ever can be and I'm feeling a little brighter myself I go to bed reasonably smug and proud of myself.
On other days days I feel as if I'm caring for a stranger, which in a lot of ways, he is., and the lack of any proper communication gets me down.
I still say 'I love you ' every day, though I wonder what that means to me now. He returns the sentiment and I'm sure doesn't know what it means any more either. But it's important to me to try and maintain any tiny bit of what we once had.

The other evening I tucked him in bed after changing his sheets and pyjamas and I said, 'There you are - nice warm bed and nice warm 'jamas.' He replied, ' Yeah an a nice warm wife too....there's just one thng wrong...well two actually.'
'What's that?' I asked
He said, ' I've forgotten to take my teeth out,' and he promptly whisked his dentures out, put them under his pillow and closed his eyes.
Who says the age of romance is dead?

You have to smile sometimes and I'm trying never to lose my sense of humour at moments like those.
You are still young Knitandpurl and have many years of living to do so please try and make some time for your own needs and take care of your own health too
Thank you so much for that, really laughed about the teeth!!!! You are definitely right, a sense of humour goes a long long way. I think this is what real love is, continuing to support and care whatever happens , the true meaning of ‘for better, for worse, in sickness or health’. He gave me fantastic support when I had cancer a few years ago, and even though no diagnosis at that stage we already knew something was very much wrong.
 

Chrissy3

New member
Apr 1, 2020
9
0
UK
I have read all of your posts abs feel I am amongst friends. My husband was diagnosed with Alzheimer’s Dementia four years ago but we know he had it at least two years before diagnosis. For a long time it was manageable though my husband denied anything was wrong. I followed advice, found a reservoir of patience I never thought I had and was upbeat and supportive without feeling resentful or angry. Four months ago, after gradual deterioration he suddenly plummeted and became impossible to manage. Refused to attend to his hygiene, became verbally insulting and resistant in all aspects of daily (and nightly) life. No sleep, double incontinence, wandering etc until I just caved in and accepted that I just couldn’t give the care he needs. He has just moved into a care home which, mercifully, is warm, caring and well staffed and organised. I feel lucky to have found a vacancy. To whoever is reading this, please avoid feeling guilty because you need help. Sometimes we soldier on because we love our partner and keep believing that things will improve. After terrible feelings of guilt and anguish I truly believe I am doing the best for him. I can visit and share positive times without having the sheer soul destruction that Alzheimers brings. I believe that my memories will be of positive love, not duty or resentment of the disease and the person. Take heart . Don’t let yourself disappear under the burden of dementia.
 

Piper12

Registered User
Nov 20, 2021
25
0
I have read all of your posts abs feel I am amongst friends. My husband was diagnosed with Alzheimer’s Dementia four years ago but we know he had it at least two years before diagnosis. For a long time it was manageable though my husband denied anything was wrong. I followed advice, found a reservoir of patience I never thought I had and was upbeat and supportive without feeling resentful or angry. Four months ago, after gradual deterioration he suddenly plummeted and became impossible to manage. Refused to attend to his hygiene, became verbally insulting and resistant in all aspects of daily (and nightly) life. No sleep, double incontinence, wandering etc until I just caved in and accepted that I just couldn’t give the care he needs. He has just moved into a care home which, mercifully, is warm, caring and well staffed and organised. I feel lucky to have found a vacancy. To whoever is reading this, please avoid feeling guilty because you need help. Sometimes we soldier on because we love our partner and keep believing that things will improve. After terrible feelings of guilt and anguish I truly believe I am doing the best for him. I can visit and share positive times without having the sheer soul destruction that Alzheimers brings. I believe that my memories will be of positive love, not duty or resentment of the disease and the person. Take heart . Don’t let yourself disappear under the burden of dementia.
Chrissy3
im just about in the same situation you are now in. My OH was diagnosed 4 years ago next month I had concerns 3years prior to his diagnosis but every time I mentioned going to the doctors he got very angry said it was all in my imagination. Eventually I told him if he didn’t go to the doctors I would leave him. Now 4 years down the line he is been reassessed by the mental health team due to what they call challenging behaviour, I’ve been advised that it’s time to put him into care but it’s so difficult to make the decision my head says one thing my heart another. I’m sure you had the same battle with yourself and I hope that I can make the right choices for both of us as you have.
 

CAL Y

Registered User
Jul 17, 2021
358
0
I have read all of your posts abs feel I am amongst friends. My husband was diagnosed with Alzheimer’s Dementia four years ago but we know he had it at least two years before diagnosis. For a long time it was manageable though my husband denied anything was wrong. I followed advice, found a reservoir of patience I never thought I had and was upbeat and supportive without feeling resentful or angry. Four months ago, after gradual deterioration he suddenly plummeted and became impossible to manage. Refused to attend to his hygiene, became verbally insulting and resistant in all aspects of daily (and nightly) life. No sleep, double incontinence, wandering etc until I just caved in and accepted that I just couldn’t give the care he needs. He has just moved into a care home which, mercifully, is warm, caring and well staffed and organised. I feel lucky to have found a vacancy. To whoever is reading this, please avoid feeling guilty because you need help. Sometimes we soldier on because we love our partner and keep believing that things will improve. After terrible feelings of guilt and anguish I truly believe I am doing the best for him. I can visit and share positive times without having the sheer soul destruction that Alzheimers brings. I believe that my memories will be of positive love, not duty or resentment of the disease and the person. Take heart . Don’t let yourself disappear under the burden of dementia.
@Chrissy3 . You have done the right thing and you are right in not feeling guilty about it.
My husband was diagnosed only seven months ago after at least four years of arguments and denial on his part. Like many on the forum I also have gone through being accused of being the one who had something wrong with me.
Its so frustrating isn’t it.
He was diagnosed with cancer at the end of September and died just over three weeks ago.
Being 70 years old myself and suffering from Osteoporosis plus another disabling condition, I would have been having to think very soon about residential care for him.
Im very fortunate that I was able to care for him, at home until the end whilst he still recognised me.
Im now left wondering why , most of the time I’m so calm about what has happened.
I can only assume it’s because I have been grieving for so long and feel that the thing I need now the most is about a months sleep.
Its been so exhausting that I hardly recognise myself in the mirror.
Dementia definitely affects the carer and I really don’t know how any of you do it for so many years.
 

Chrissy3

New member
Apr 1, 2020
9
0
UK
Dear Piper 12. I feel deeply for you.
I sincerely believe that you will come to a decision when you have given yourself space and time to think everything through and work through your feelings, which is what I had to do and it is so difficult. Talk to your family, friends and the professionals around you. I found that everyone was saying the same thing but I wasn’t ready to listen at first. Then I realised, at 3am when I was clearing faeces off the bedroom carpet and my husband wouldn’t let me clean him, that it wasn’t ever going to get better. I hope you can find the strength to let others take over so that you can enjoy him instead of being destroyed by this disease.
 

Chrissy3

New member
Apr 1, 2020
9
0
UK
CAL Y
I’m glad you could care for him till the end and I hope you can hold on to some positive memories of that special time. I agree with you that the grieving for the loss of the person through dementia starts early, when the person is alive. My husband went to live in the care home on Friday, only yesterday, and last night I slept through for the first time in at least two years, maybe more. I didn’t realise how exhausted I was and how dreadful I looked. Take special care of yourself. The men that our husbands once were would want it that way.
 

CAL Y

Registered User
Jul 17, 2021
358
0
CAL Y
I’m glad you could care for him till the end and I hope you can hold on to some positive memories of that special time. I agree with you that the grieving for the loss of the person through dementia starts early, when the person is alive. My husband went to live in the care home on Friday, only yesterday, and last night I slept through for the first time in at least two years, maybe more. I didn’t realise how exhausted I was and how dreadful I looked. Take special care of yourself. The men that our husbands once were would want it that way.
@Chrissy3 . Thank you. I so agree that our husbands would be so upset if they realised what their condition had done to us.
You are very brave. You take care too.
I think we deserve it don’t you.xx