Love it ??I got mine for my kindle so that OH cant see me reading it
Love it ??I got mine for my kindle so that OH cant see me reading it
Hi @ NEESE201: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
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.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
My OH hates me reading, texting etc. I have to do this when he’s occupied elsewhere.I got mine for my kindle so that OH cant see me reading it
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.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.
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
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.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. ?
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.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. I have started reading this and it is very thought provoking xxHugh Marriot @Long journey ahead - got mine off Amazon.
Chrissy3I 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.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 . Thank you. I so agree that our husbands would be so upset if they realised what their condition had done to us.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.
Wishing for comfort for you both, and some happiness. Sending you lots of hugs .@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