Emotional Impact
- Thread starter Danbar
- Start date
Hi pamann
I too identified strongly with cragmaid's post. The stress is extraordinary...
I'm concerned to hear that you are at crisis point. I hope you have some help? No-one can carry on indefinitely under such a load.
Sending you (((hugs))) and hoping you have support.
Lindy xx
I always feel like I am such an evil cow. I often think I must have done something horrible in another lifetime to have such a **** one now.
I watched my dad slowly fade away over 10 years to this horrible disease. He died a horrible death a few months ago after forgetting how to swallow. My mum was diagnosed 2 1/2 years ago. I love my mum to bits but she has always driven me mad, I am quite happy with silence but my mum always has to speak, mainly rubbish we have never been on the same wave length. Add in dementia and she drives me insane. I see her every day, sort out all the bills, her money, tablets, hearing aids, gardening, do her bed ( she has a cleaner once a week), field the daily phone calls every evening about how many animals she has has and have the crying for no reason. I feel so mean when she cries, it does not upset me it just makes me more annoyed as it is over something like the dog not wanting a bone or her having no money ( she has plenty of money but can't understand that it is in the bank and I don't want her having hundreds in the house). Add in the fact I work part time and still have children at home ( one at school). I feel guilty about the amount if time I leave my daughter at home on her own while I'm with mum ( she is 12) she said to her dad, " why is mum always at nans, she is my mum not hers".
Add in two invisibles who do not understand how much this is all affecting me ( or don't care as long as they don't have to get involved). After my husband had a row with one brother in law at my dads funeral it was agreed they would sort mum out every weekend between the two of them. I think that's lasted 2 weeks. They haven't had her any weekend at all this month ( even though it's school holidays) they pop over for a few hours once a week and take her for lunch then go home. They might phone one other day if she is lucky. They don't work and all their kids are grown up and left home. They take on no responsibility. What annoyed me last week was a day we all went with mum to a funeral counted as their weekly visit so that was that for the week.
I feel so trapped, like I am suffocating under all this responsibility and I haven't had time to grieve for dad. My sisters can do what they want, when they want. They don't worry about her having no shopping, her daily tablets, if her hearing aids are working, if the food in her fridge is out of date etc etc. physically my mum is great she walks for miles, she is now in that inbetween stage where she isn't able to cope without help but isn't bad enough to need carers or go in a home.
Sorry for the moan, I hate my life and know it's only going to get worse. I hate the fact I have to leave my daughter on her own so much, my mum and dad worked shifts when I was young and I spent loads of time on my own and hated it. I hate this disease so much. I am taking my self off to Switzerland if I start showing signs, I am not putting my children through this again.
I watched my dad slowly fade away over 10 years to this horrible disease. He died a horrible death a few months ago after forgetting how to swallow. My mum was diagnosed 2 1/2 years ago. I love my mum to bits but she has always driven me mad, I am quite happy with silence but my mum always has to speak, mainly rubbish we have never been on the same wave length. Add in dementia and she drives me insane. I see her every day, sort out all the bills, her money, tablets, hearing aids, gardening, do her bed ( she has a cleaner once a week), field the daily phone calls every evening about how many animals she has has and have the crying for no reason. I feel so mean when she cries, it does not upset me it just makes me more annoyed as it is over something like the dog not wanting a bone or her having no money ( she has plenty of money but can't understand that it is in the bank and I don't want her having hundreds in the house). Add in the fact I work part time and still have children at home ( one at school). I feel guilty about the amount if time I leave my daughter at home on her own while I'm with mum ( she is 12) she said to her dad, " why is mum always at nans, she is my mum not hers".
Add in two invisibles who do not understand how much this is all affecting me ( or don't care as long as they don't have to get involved). After my husband had a row with one brother in law at my dads funeral it was agreed they would sort mum out every weekend between the two of them. I think that's lasted 2 weeks. They haven't had her any weekend at all this month ( even though it's school holidays) they pop over for a few hours once a week and take her for lunch then go home. They might phone one other day if she is lucky. They don't work and all their kids are grown up and left home. They take on no responsibility. What annoyed me last week was a day we all went with mum to a funeral counted as their weekly visit so that was that for the week.
I feel so trapped, like I am suffocating under all this responsibility and I haven't had time to grieve for dad. My sisters can do what they want, when they want. They don't worry about her having no shopping, her daily tablets, if her hearing aids are working, if the food in her fridge is out of date etc etc. physically my mum is great she walks for miles, she is now in that inbetween stage where she isn't able to cope without help but isn't bad enough to need carers or go in a home.
Sorry for the moan, I hate my life and know it's only going to get worse. I hate the fact I have to leave my daughter on her own so much, my mum and dad worked shifts when I was young and I spent loads of time on my own and hated it. I hate this disease so much. I am taking my self off to Switzerland if I start showing signs, I am not putting my children through this again.
Oh betsie....
Your life sounds very similar to mine some 6 - 18 months ago.....except that I have no siblings but one who sees mum a few times a year, and my girls are older. But you remind me of how stressed and tired I was.....
Eventually I decided that mum did need home care, whatever she said. After all, she couldn't manage without my input, so she was maintaining a show of independence, but was not really able to manage.
It sounds to me as if maybe a bit of help ( hairdressing, laundry, meals, medication collection, that kind of thing) might get your mum used to someone else being involved.
And you and your daughter do need some time together, in my opinion, anyway
Good luck
Lindy xx
Your life sounds very similar to mine some 6 - 18 months ago.....except that I have no siblings but one who sees mum a few times a year, and my girls are older. But you remind me of how stressed and tired I was.....
Eventually I decided that mum did need home care, whatever she said. After all, she couldn't manage without my input, so she was maintaining a show of independence, but was not really able to manage.
It sounds to me as if maybe a bit of help ( hairdressing, laundry, meals, medication collection, that kind of thing) might get your mum used to someone else being involved.
And you and your daughter do need some time together, in my opinion, anyway
Good luck
Lindy xx
Hello Lindy50 l have been,looking after my hubby for 9yrs, he is late stages of AD, trying to find care home for respite, only one will take him, as he is a wanderer, they can not take him until the end of Sept, he has been to day care, too disruptive doesn't like locked doors, will not go out with Carer's, l am getting worn out
Emotional wreck.
I didn't think I could get much lower but last night I just broke and ended up ringing Samaritans and blubbing for I don't know how long. I am desparately missing my husband and our life as it used to be. He just paces about all the time,moving things around, no conversation that makes sense, his poor face showing the horror of what is going on in his head. I don't think I can bear it much longer. I want him back. But know I can 't help him. Sorry to blab on. Feel so low.
I didn't think I could get much lower but last night I just broke and ended up ringing Samaritans and blubbing for I don't know how long. I am desparately missing my husband and our life as it used to be. He just paces about all the time,moving things around, no conversation that makes sense, his poor face showing the horror of what is going on in his head. I don't think I can bear it much longer. I want him back. But know I can 't help him. Sorry to blab on. Feel so low.
Of course you want him back; that's a feeling that never goes away when we watch our loved ones suffer with this cruel disease. However, you probably help him more than you know in ways of making him feel secure and safe.
You did the right thing by making that phone call-and you aren't blabbing on!
I wish I could help you
Love
Lyn T XX
I'm pleased it helped, I feel for you, I am in a similar situation and get all the help that I can now, I struggled on for so long alone, See your doc mine prescribed antidepressants for me, I didn't want to take them but I gave them a try and I wouldn't have believed what a difference it has made, he also gave me a phone number for councilling but I haven't needed it yet,
Best wishes from Jeany x
Grieving
Absolutely agree- don't be hard on yourself. It's only natural you should be feeling sad and lonely. Your hubby may still be physically alive, but he no longer acts, thinks or behaves like your hubby so in essence you have been bereaved before the person actually passes away- and you feel that loss. If he has fairly recently moved into the care home, then you will be missing his physical presence and your role as his carer. I think maybe moving into a carer role instead of wife, husband, daughter etc can even delay some of the grief as we become focused on being a good carer and dealing as others have said with issues and challenges of the role as they arise. My Mum is late moderate/early severe and only now when there is talk of permanent residential care and when her recognition of me and my sister is only intermittent to I feel what I am losing. I don't have a Mum anymore. She will never call me again to see how I am. She will never send me a birthday card or buy me a present. She will never go shopping with me again. Sometimes she thinks I am one of her Homecare services girls, and all she really wants is to be with my Dad (when she recognises him). I feel for you in your sadness. Be kind to yourself. It's a tough way to lose somebody. xxx
I am finding that I cope for a few days and then everything crashes down again, my poor hubby no longer has any idea what is happening to him, so I suppose its a blessing in one sense for him, for me all I see is the man I married, disappearing before my eyes, a strong man, who never showed fear, is now a frail frightened man, and my emotions are in turmoil most of the time, I wanted to help others by becoming a befriending volunteer, but find I cant do it, how can I help others when I cant seem to help myself. The CH look after him well, but I come out and cry, I miss him, the old him not the one now. I read comments and think I am not in as bad a place as some others, but even so I still cant cope. - Sorry folks having a bad week. Feeling sad and lonely, I know I'm depressed, but cant seem to snap out of it, haven't got the energy. The roller coaster is stuck on the down bit.
Absolutely agree- don't be hard on yourself. It's only natural you should be feeling sad and lonely. Your hubby may still be physically alive, but he no longer acts, thinks or behaves like your hubby so in essence you have been bereaved before the person actually passes away- and you feel that loss. If he has fairly recently moved into the care home, then you will be missing his physical presence and your role as his carer. I think maybe moving into a carer role instead of wife, husband, daughter etc can even delay some of the grief as we become focused on being a good carer and dealing as others have said with issues and challenges of the role as they arise. My Mum is late moderate/early severe and only now when there is talk of permanent residential care and when her recognition of me and my sister is only intermittent to I feel what I am losing. I don't have a Mum anymore. She will never call me again to see how I am. She will never send me a birthday card or buy me a present. She will never go shopping with me again. Sometimes she thinks I am one of her Homecare services girls, and all she really wants is to be with my Dad (when she recognises him). I feel for you in your sadness. Be kind to yourself. It's a tough way to lose somebody. xxx
To Gringo: about poetry
Dear Gringo,
I have only read posts on this website so far, but I really feel I want to answer your comments about poetry. Dylan Thomas' poem 'Do not go gentle into that good night' so aptly describes the real dying of the light which I can see on a daily basis in my husband. Since diagnosis of AD two and a half years ago, the darkness in his mind has gradually and insidiously taken him over and he now spends hours seemingly locked-in.
Some of the experiences I have read about with other sufferers from AD seem to have passed us by, or at least only happened a very few times. But the dark withdrawal of my life companion is the hardest thing to cope with. After 55 years of marriage with ups and downs, but mostly ups, we are now on a definite downward slope to unknowingness. I have lost him to sleep - he sleeps continually most of the day,but fortunately also all night (though he has his radio on very quietly all night too, so I think sometimes he's awake for a while, and it might be that he uses it to maintain contact with the world, which he knows is slipping away from him, and he gets some comfort from it.)
What is sad is that he knows what is happening to him, and has accepted it, so I suppose he really is going 'gentle into that good night'. I think it's me that feels the 'rage at the dying of the light' - his light.But he is still who he is and this shows through now and then - the golden moments as I have heard them called, and I just have to treasure them. But - oh - the dying of his light!
Dear Gringo,
I have only read posts on this website so far, but I really feel I want to answer your comments about poetry. Dylan Thomas' poem 'Do not go gentle into that good night' so aptly describes the real dying of the light which I can see on a daily basis in my husband. Since diagnosis of AD two and a half years ago, the darkness in his mind has gradually and insidiously taken him over and he now spends hours seemingly locked-in.
Some of the experiences I have read about with other sufferers from AD seem to have passed us by, or at least only happened a very few times. But the dark withdrawal of my life companion is the hardest thing to cope with. After 55 years of marriage with ups and downs, but mostly ups, we are now on a definite downward slope to unknowingness. I have lost him to sleep - he sleeps continually most of the day,but fortunately also all night (though he has his radio on very quietly all night too, so I think sometimes he's awake for a while, and it might be that he uses it to maintain contact with the world, which he knows is slipping away from him, and he gets some comfort from it.)
What is sad is that he knows what is happening to him, and has accepted it, so I suppose he really is going 'gentle into that good night'. I think it's me that feels the 'rage at the dying of the light' - his light.But he is still who he is and this shows through now and then - the golden moments as I have heard them called, and I just have to treasure them. But - oh - the dying of his light!
Me too, rivershores
The other thing is that I know my OH, lovely guy that he is, is increasingly fed up with waking up to the sight and sound of a red-eyed, stressed-out wife. It's not fair on him and I'm not sure how long he can take it
Welcome, by the way, and I'm sorry to be so miserable...
Lindy xx
Thank you so much Lindy for your understanding and for identifying with my feelings (as I know all of you do) - I am very much on the same page as you! Please don't apologise for being miserable - this is a very miserable situation!!!! And I appreciate what you say about your husband, I feel the same about my partner having to put up with my constant stress and tears about mum! And also to Betsy - I truly understand how hard it is to feel such negative emotions. I am getting braver and more honest in my postings on this site, especially after I see how honest you are all being. I feel so ashamed of the resentment I feel towards my mum (my sisters don't feel nearly so negative towards my mum and so I feel very alone in this) and I feel sooooooo trapped and suffocated by the situation. I fantasise about running away and have caught myself regretting not having emigrated years ago so I wouldn't now be facing this situation. And then I feel so mean and so disgusted with myself. How can I be feeling like this in my mother's hour of need? My sisters actually say they want to make the most of mum whilst we still have her and that they will miss her when she's gone. I just stare at them in wonderment, thinking to myself "Gosh that is not how I feel"!
I can't help wondering how long she will go on for. My mum, despite being 88, seems in fine fettle physically and I catch myself looking to the future and seeing years and years and years of caring for her. Currently, whilst she still knows who we are and whilst she still fiercely guards her "independence" (that's laughable really because my sisters and I do everything for her!), there is no way on God's earth she would go into a home. She would literally kick and scream! I do have three sisters who share the burden with me and to date I have felt so lucky to have them but in the last week I had a bit of an epiphany and realised that on one level they are not helping the situation at all because they pander to her all the time and let her get away with murder and on the very few occasions I have had a bit of a tiff with her because she was acting up very badly they have not supported me at all and it's all about "poor mum". I honestly think they have made a bit of a rod for our backs inasmuch as they expect me (and themselves) to give up our lives entirely to look after mum and they never stand up to her and so she has her tantrums and everyone jumps. I am tired of being the "bad guy" who says we should toughen up a bit. Excuse the phrase, but recently the **** hit the fan regarding my mum (she basically got herself into a very bad situation) and we have had to remove her from her own flat and share her out amongst our homes and this just fills me with even more despair as I will be giving up more of my life and having to cope with the questions, demands, tantrums, denials, hallucinations etc etc etc!! OK, so I realise that I am sounding a bit sorry for myself!!!!
Thank-you RG.for your comments. I am so sorry to hear of your situation. I understand completely how you feel. I have been with wife for some 65 years. I am told that I should consider myself lucky because of that. So I do, but it also works the other way. After such a long and happy partnership everything seems more difficult and serves to remind you what you have lost.
Dylan Thomas’s ‘Do not go gentle’ is very special to me. I was one of the ‘WiId men who caught and sang the sun in flight’. I don’t rage quite as much as I once did. The spirit is willing but the flesh is getting weaker.
I recommend you look into the poetry section and find a poem by Yorkieinlincs titled ‘I Wish’. It was posted in October 2011. (Ann, his wife, the subject of the poem passed away just over a year ago.)
This moving poem, in my view the best ever posted on TP., kick-started my interest in poetry and has stood me in good stead on many occasions.
Rivershores, you have every right to feel sorry for yourself !!! It sounds as though you are not only in a really difficult situation with your mum, but also with your sisters and wider family.....This cannot be easy to cope with at all
My situation is different in that there is only me doing the caring.....so I have had to come to the heartbreaking decision to move mum to a care home. I simply couldn't cope on my own. Now everyone says to me "oh, that's good, that must be a relief" To be honest it is the exact opposite, the three weeks that mum has been in the home have been some of the worst of my life. I cannot bear the thought of her feeling frightened, lonely, terrified even....although even on TP, people advise me not to worry so much, she is being well cared for.
I truly feel that there are no right answers here. We do our best to help those we love, but it can never feel enough, while they suffer as they do.
Lindy xx
My situation is different in that there is only me doing the caring.....so I have had to come to the heartbreaking decision to move mum to a care home. I simply couldn't cope on my own. Now everyone says to me "oh, that's good, that must be a relief"
To be honest it is the exact opposite, the three weeks that mum has been in the home have been some of the worst of my life. I cannot bear the thought of her feeling frightened, lonely, terrified even....although even on TP, people advise me not to worry so much, she is being well cared for. I truly feel that there are no right answers here. We do our best to help those we love, but it can never feel enough, while they suffer as they do.
Lindy xx
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Just realised I am posting this in the 'I have a partner with dementia' forum, and it's about my mum Sorry......some of the issues are the same, but not all. I do acknowledge that caring for a partner is very different from caring for a parent ....
Love to all
Lindy xx
Sorry......some of the issues are the same, but not all. I do acknowledge that caring for a partner is very different from caring for a parent ....Love to all
Lindy xx
Just want to say how moving and well expressed these posts are. No-one not having experience of caring for a loved one with dementia can possibly understand how it really is even when they seek to do so. So thank you for sharing so eloquently what we all feel but sometimes cannot ecpress,
Just realised I am posting this in the 'I have a partner with dementia' forum, and it's about my mum
Love to all
Lindy xx
Don't apologise Lindy, lots of people who post on this forum are caring for people other than partners. It's good to share experiences and information whatever.
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