My husband was diagnosed in January but has been confused for some time before his diagnosis. He is getting worse and can no longer read or write and cannot hold any conversation. Every day some new problem seems to arise. I am struggling because I am so utterly upset and depressed about him and it is making me bad tempered and very impatient which I hate myself for. Do other people feel the same emotions? We have been married for 53 years and I am just overwhelmed with grief for him and the way we were. Last week on our anniversary he gave me a card which said " Happy Birthday Granny! " which really broke my heart as I know he tried but it caused terrific upset . Where am I going wrong? I have always been a worrier and an emotional person but this situation is breaking me. Can someone offer advice as to how I curb my emotions.
I am struggling with my emotions about my husband who has dementia.
- Thread starter Mrs Humphrey
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I can't offer advice but can 100% empathise with you.
I just let it all wash over me as I wouldn't be able to cope if I thought too much about this aspect of dementia when it's a spouse involved.
It's very tough.
I just let it all wash over me as I wouldn't be able to cope if I thought too much about this aspect of dementia when it's a spouse involved.
It's very tough.
If it's any consolation, there are lovely moments.
Just a couple of weeks back I was walking in to the living room as my wife was walking out. As our paths crossed my wife looked at me, with a beaming face, and reached out as she said "I think I'm falling in love with you". After all these years, it was as if we had just been dating for a few months. Still, at least she was falling in love with me, rather than being abusive!
Just a couple of weeks back I was walking in to the living room as my wife was walking out. As our paths crossed my wife looked at me, with a beaming face, and reached out as she said "I think I'm falling in love with you". After all these years, it was as if we had just been dating for a few months. Still, at least she was falling in love with me, rather than being abusive!
You ask where you're going wrong but you're not! How else should you react to the awful diagnosis of your husband's dementia and everything it means for your future?
As time goes on your husband will get worse and need much more care than he does now. (Sorry to say that but I'm sure you already know it.) It might help you to start planning for that eventuality, working out where you'd be re. funding, getting Power of Attorney arranged (if you haven't already done it), etc. Maybe separate your bank accounts too. Start introducing help at home, even if it's initially help for you, i.e. a cleaner or similar. Or someone to come and sit with him so you can go ut and get a break.
But also, you need to consider where you will fit into any future plans. Be careful you don't 'write yourself out' as everything starts to revolve around his needs. If you want to continue as his carer you'll need all the help you can get. If you don't want to, you don't have to. Social Services have the Duty of Care, not you. Not everyone is cut out for a career in caring so don't beat yourself up.
Some people cope by thinking of their spouse as a stranger they are looking after professionally rather than the husband/wife they love. Makes it a bit easier when the hurtful comments/behaviour come your way.
I wish you strength.
As time goes on your husband will get worse and need much more care than he does now. (Sorry to say that but I'm sure you already know it.) It might help you to start planning for that eventuality, working out where you'd be re. funding, getting Power of Attorney arranged (if you haven't already done it), etc. Maybe separate your bank accounts too. Start introducing help at home, even if it's initially help for you, i.e. a cleaner or similar. Or someone to come and sit with him so you can go ut and get a break.
But also, you need to consider where you will fit into any future plans. Be careful you don't 'write yourself out' as everything starts to revolve around his needs. If you want to continue as his carer you'll need all the help you can get. If you don't want to, you don't have to. Social Services have the Duty of Care, not you. Not everyone is cut out for a career in caring so don't beat yourself up.
Some people cope by thinking of their spouse as a stranger they are looking after professionally rather than the husband/wife they love. Makes it a bit easier when the hurtful comments/behaviour come your way.
I wish you strength.
I can't offer much advice either but you are far from being alone. My wife of 46 years forgot my birthday a few days ago for the first time ever. and short term memory problems make arrangements difficult.
I offer all the moral support I can and wish you well in the future. Keep posting, it helps!
I offer all the moral support I can and wish you well in the future. Keep posting, it helps!
I personally found the first 6 months the most difficult. I think I cried non-stop the first 3 months and I am not a crier by nature. It must have been so disconcerting for my co-workers to walk into my office and find me working away with tears running down my face.
My mother's illness was long and tumultuous and I went through many different stages of emotion. The important thing is for you to seek as much help as you can get and, of course, come here where we truly understand what you are experiencing.
My mother's illness was long and tumultuous and I went through many different stages of emotion. The important thing is for you to seek as much help as you can get and, of course, come here where we truly understand what you are experiencing.
I realized in the last few days that I have been in some kind of state of shock since my husband's diagnosis in March. It took some time for it to sink in that the lovely life we shared, and which I took for granted, is never going to be the same again and that I am grieving for that loss. I don't cry as much now but I feel as if my brain is paralysed, unable to make plans or organise the simplest of things. I seem to be in limbo with a to-do list that never gets any shorter. Everything is now on my shoulders and everyday problems seem a hundred times worse than they probably are. I have been advised to get help for myself and get out more but am just daunted by the organisation that would take. I do recognise that I am very slowly learning to cope with all this, but am too scared to look into the future, so just take one day at a time.
You're not going wrong, you are just measuring yourself against all those happy, smiley people in the dementia leaflets, and wondering why you can't manage, when everyone else clearly is.
We're not.
I'm not an emotional person, but I have cried more in these last 4 years than I ever thought oossible. I am now at the point where, mostly, I try not to think about anything other than the here and now - no point in dwelling on what was and what might have been. It doesn't always work, and I have a horrible feeling that at some point I will go into complete meltdown.
We're not.
I'm not an emotional person, but I have cried more in these last 4 years than I ever thought oossible. I am now at the point where, mostly, I try not to think about anything other than the here and now - no point in dwelling on what was and what might have been. It doesn't always work, and I have a horrible feeling that at some point I will go into complete meltdown.
I understand the getting angry and upset. My mum has dementia and I struggle too it's the day to day it's overwhelming seeing them deteriate
I am so sorry @Mrs Humphrey that you have this cruel disease to deal with. All the emotions you are dealing with are normal, and will be ongoing. I find taking myself off to the bathroom, and just having 5 mins to myself helps. It did tonight when he demanded food, after an otherwise calm day. I have barely spoken to him since 5pm, and he went to bed at 9, and I am eating a secret stash of Macarons to myself. Go easy on yourself.
I thank you all for your kind replies. I know I have to be stronger and that he can't help it but as you say it's no good remembering life as it was ... just life as it is and trying to make him happy and then it will all seem better.
No - your happiness counts too. You can't do anything about your husband's dementia - what will happen will happen. But please dont forget about yourself. You don't have to give up your whole life for him, nor should you. Apart from anything else, you won't be a good carer unless you get some time to yourself, to relax and do things you really want to do. Never forget you are entitled to happiness too - it's all too easy to disappear in the role of carer.
My husband died in July2022 ..not basically from Alzheimers although the death certificate stated it as a secondary cause to the first which was "Frailty of old age." He had been admitted to hospital in March with a slight heart problem which was sorted out and he was due to return home but caught Covid (not severely) but it led to a very bad delirium as he was moved around the hospital so much and also I was not allowed to see him for several days. And then he was upset and disorientated and the delirium arose from which he never recovered and spent the last 16 weeks of his life in a nursing home needing 24 hour care. He was in a pitiful state for those 16 weeks and eventually passed away. I am bereft and full of remorse for all the cross words I said to him in the 3 years which he suffered from dementia because he did not have the verbal ability to answer back to me. I felt utterly alone in the situation as although we have two sons they seemed unaware of what it was like. I loved him so much in all the 56 years we had been together but I couldn't cope emotionally with the grief and upset of his diagnosis so the last 2 years plus were not happy ones at all.. The hospital have apologised for their mismanagement of him with dementia...too late now.
I’m so sorry for your loss. Dementia is challenging at the best of times but add into the mix a pandemic and poor hospital care and you wonder how we are supposed to cope with it all.
It does sound a traumatic end to your husband’s life and that 56 year relationship you had built. I know you cannot forget those dreadful last years you both endured, but it’s still early days and you need to focus on the happier times in the previous 54 years together.
I don’t think there is a carer on this forum who don’t have regrets about cross words and losing our cool with our loved one’s, but, we are all human, we have needs and feelings too and it sounds as though you were pretty much dealing with all this on your own.
Do you think explaining your feelings to your son’s would help? Sometimes people wrongly assume people are coping because they don’t share their feelings, maybe try and sit down with them and tell them how you’d felt during your husbands dementia and how you feel now. It might help and at the very least it is making them aware of how you feel.
If that isn’t an option then maybe speak with someone independent like a bereavement counsellor. And of course, people here can always provide support and advice or just listen when you’ve had a bad day. Don’t be alone, people will support but sometimes need a little prod and reminder.
Take care Mrs Humphrey.
It does sound a traumatic end to your husband’s life and that 56 year relationship you had built. I know you cannot forget those dreadful last years you both endured, but it’s still early days and you need to focus on the happier times in the previous 54 years together.
I don’t think there is a carer on this forum who don’t have regrets about cross words and losing our cool with our loved one’s, but, we are all human, we have needs and feelings too and it sounds as though you were pretty much dealing with all this on your own.
Do you think explaining your feelings to your son’s would help? Sometimes people wrongly assume people are coping because they don’t share their feelings, maybe try and sit down with them and tell them how you’d felt during your husbands dementia and how you feel now. It might help and at the very least it is making them aware of how you feel.
If that isn’t an option then maybe speak with someone independent like a bereavement counsellor. And of course, people here can always provide support and advice or just listen when you’ve had a bad day. Don’t be alone, people will support but sometimes need a little prod and reminder.
Take care Mrs Humphrey.
My wife was diagnosed 3 years ago, she gets confused, frustrated and her behaviour is getting more and more unusual.
I get angry, frustrated, I shout at her, and afterwards hate myself for doing it, as she has forgotten what upset me, whereas I am still dealing with it.
And everyone tells me its not going to get any better as the illness progresses.
So you are nov the only one who feels the way you do,
I get angry, frustrated, I shout at her, and afterwards hate myself for doing it, as she has forgotten what upset me, whereas I am still dealing with it.
And everyone tells me its not going to get any better as the illness progresses.
So you are nov the only one who feels the way you do,
Thank you both for your replies. My two sons also grieve for their father so I cannot add to their distress by analysing my feelings with them. Their attitude is "Mum stop torturing yourself; you did your best but because you are an emotional person you couldn't handle the situation well."
I lost two friends with dementia so I was suffering from anticipatory grief and fear all through my husband's illness which made me totally despairing about the future but it never happened that way because his physical health deteriorated very suddenly and the terrible hospital care he received ( a bad fall and a badly cut head because no one was anticipating him taking himself to the toilet and no member of staff was in the ward which had only 4 beds) and then Covid and delirium which is common in older people in hospital) and no stability of his whereabouts as he was moved from ward to ward and of course no visiting by me who had been with him non stop for the previous 15 days
he really didn't have any real chance. It is a soul destroying illness for the sufferer and the people looking after them.
I wish everyone on this forum the strength to cope better than what I did.
I lost two friends with dementia so I was suffering from anticipatory grief and fear all through my husband's illness which made me totally despairing about the future but it never happened that way because his physical health deteriorated very suddenly and the terrible hospital care he received ( a bad fall and a badly cut head because no one was anticipating him taking himself to the toilet and no member of staff was in the ward which had only 4 beds) and then Covid and delirium which is common in older people in hospital) and no stability of his whereabouts as he was moved from ward to ward and of course no visiting by me who had been with him non stop for the previous 15 days
he really didn't have any real chance. It is a soul destroying illness for the sufferer and the people looking after them.
I wish everyone on this forum the strength to cope better than what I did.
I empathise! I worry all the time that Im harsh or impatient and I feel like crying but the tears wont come. Today was awful-the loo was blocked and before I could sort he hoiked it all out and placed it on the seat and sink. I admit I shouted! He hung about looking worried and I sent him away while I cleaned up. I was emotionally drained and fell asleep on the sofa afterwards. When I woke he said “I love you you know”. I feel a complete witch and so sad. I cant stop responding emotionally somehow
Can’t deal with the loneliness it’s killing my spirit. Living with someone who doesn’t speak or acknowledge your existence. You feed dress care direct someone who isn’t there its soul destroying. Just want some love and affection with the husband that has gone it’s a slow decline which eats at you every day . Feeling lonely and sad all the time 😞
This is my first time on the forum and what you have written is exactly the same as I feel. My husband was diagnosed last year and the speed of deterioration is overwhelming. The loss of speech has me feeling lonely and sad as well. I try to give him lots of love and kisses as he gets scared about what is happening to him. He also contracted anal cancer 6 years ago and amazed us all with his recovery so both of us have the added worry about his stoma and what food to give him as he only has one third of his stomach left. All this while we had my mother living with us and suffering with dementia. My mother spent her last 2 months in a nursing home as it became impossible to deal with it. Because of Covid I couldn't visit or even go to her funeral. So now Alzheimers rules our lives and the sadness, fear and loneliness never go away. My loving husband needs me, so I try my best to make him happy. I miss him so much.
I’m so sorry to read about your situations @annieystrad and @TeddyBear77 . It really is heartbreaking.
I hope sharing your feelings on this forum gos some way to help with the loneliness. You are amongst people who understand. Thinking of you both and wishing you strength.
I hope sharing your feelings on this forum gos some way to help with the loneliness. You are amongst people who understand. Thinking of you both and wishing you strength.
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