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Dementia’s journey

Guzelle

Registered User
Aug 27, 2016
421
Sheffield
The home don’t Skype me because it upsets him and makes him more agitated. I have spoken to him on the phone once but he didn’t know what was happening. He just wanted to come home like he always does. I wish I could see him as he had a fall the other day and he had to go to A&E . Then he had a temperature so they thought he could have the virus but he is better now.
 

Dutchman

Registered User
May 26, 2017
827
Devon
Oh. Sue I Share your feelings I really do. I can’t move on and there’s part of me that doesn’t want to. I want to feel grief, pain, sadness because it’s so real and connects me to my wife with a strong bond.

I fear that if I become less lonely and miserable then I’ll miss Bridget less when it’s bad enough feeling feelings of betrayal and guilt by putting her into a home.

I’d gladly swap my life for hers if by some miracle it could be done. But we’re stuck
,aren’t we , with the misery of it all.
Peter xx
 

Stacey sue

Registered User
Jan 24, 2020
72
This is such an evil disease, I Pray by the time I see Dave he will still know me? II so want him back, I know given a choice he would want to be home! He has lost so much weight in a very short time, I feel I have let him down as a wife .and the quilt I feel never goes. I know he has gone to far for me to have him home with the constant wandering and the incontenence . I would gladly swop with him! He is unaware of my misery, and I am glad of that. I know this is worrying times for all, our Daughter is a critical care nurse on the front line, I try and stay strong for her,but this isolation just is all consuming. Sad Sue.X
 

CWR

Registered User
Mar 17, 2019
203
I hope you have good friends who keep in touch with you. My only consolation for losing mum is that I would hate her to go through this. It is horrendous for so many. I was telling a friend, there is so much " collateral damage" in this horrible virus, people who suffer from the social effects of the virus. Please don't torment yourself. I have felt the same , mum used to say " I love you but you hurt me" because, when I was looking after her at home, I had to tell her off at times. " No, thats dangerous! dont do that!" The problem with this lockdown is that it makes you brood. You did the best you could, as we al have. be easy on yourself.
 

Dutchman

Registered User
May 26, 2017
827
Devon
Like a lot of us it helps getting our thoughts down. We don’t necessarily need answers,but it’s great when they come. I always get a good feeling when I see that little red marker showing me someone has replied.

In some respects it was a whole lot easier when Bridget was here, at home, when it’s concerning my current sadness and grief I feel. Sure it was a nightmare situation and I was sometimes tearing my hair out with frustration but she was here, there was a tiny degree of company and at least I had someone to care for, even if at times I lost my temper and wanted the behaviour to stop.

But, now she is away from me in the home I tend to look back and see past times with a rosier glow. I’m not in the dementia behaviour world anymore so I say to myself “was it really that bad”. I have to remind myself, with the help of past posts, that yes it was bad.

Additionally, now I’m on my own I have space to remember the normal, good ordinary times we shared and this increases my love for her and increases my sense of loss. There’s a part of me that says “this shouldn’t have happened to us”.

I never imagined a life without her and never thought I’d be alone like this. I know I can visit at any time and see her and say I love you but she stopped recognising me as her husband almost a year ago and that’s agony.

thanks for letting me voice my sad thoughts

peter
 

CWR

Registered User
Mar 17, 2019
203
Like a lot of us it helps getting our thoughts down. We don’t necessarily need answers,but it’s great when they come. I always get a good feeling when I see that little red marker showing me someone has replied.

In some respects it was a whole lot easier when Bridget was here, at home, when it’s concerning my current sadness and grief I feel. Sure it was a nightmare situation and I was sometimes tearing my hair out with frustration but she was here, there was a tiny degree of company and at least I had someone to care for, even if at times I lost my temper and wanted the behaviour to stop.

But, now she is away from me in the home I tend to look back and see past times with a rosier glow. I’m not in the dementia behaviour world anymore so I say to myself “was it really that bad”. I have to remind myself, with the help of past posts, that yes it was bad.

Additionally, now I’m on my own I have space to remember the normal, good ordinary times we shared and this increases my love for her and increases my sense of loss. There’s a part of me that says “this shouldn’t have happened to us”.

I never imagined a life without her and never thought I’d be alone like this. I know I can visit at any time and see her and say I love you but she stopped recognising me as her husband almost a year ago and that’s agony.

thanks for letting me voice my sad thoughts

peter
I know exactly what you are talking about; I was looking after mum at home, and only really relaxed when she was in respite, but , particularly the last time she was there, I felt relief that I was free from the constant anxiety, and guilt at feeling relief. No sooner would she be back than it would start up again, toiletting issues, or repetition " What time is it? What time is it?" or going up and down stairs or opening the front door again and again and again. Also, what saddened me was that she could no longer remember incidents from her life in Ireland, and tho' I was fortunate insofar as she still ( mostly) knew who I was, I viewed her more as my little girl rather than my mother. I was worried on her behalf all the time, and had to reassure her . Yet, when she passed away at the end of November, after initial feelings of relief, I felt guilt that I hadnt always had the patience I should have had, and felt abandoned. She was always on my side, and I just felt that I had lost the one person who was there for me regardless. I cannot imagine your loss, however, since mum was 95 , and growing very frail , so the end was inevitable, and this is what has helped me come to terms with it. I still have times when I miss her, and they can ambush me without any warning. I hope you have some good friends who can stand by you.
 

Dutchman

Registered User
May 26, 2017
827
Devon
I am finding it really hard this isolation and not being able to visit my Dave, I just can’t move on from what he has become to what he was! Not being able to visit I am remembering as he was and not as he is! The care home have told me that he often asks where I am, and they say I am at work!! I just want him back home ,I love and miss him so much and he doesn’t know it! I am so consumed by this dementia grief, how will life be worth living again.I don’t want to go and see him through a window because I will be upset and he won’t know why I can’t cuddle him.This is hard. Love to you all Sue
Hi there. I sort of force myself to visit and I do get some comfort from seeing Bridget through the window. We blow kisses and she looks happy to see me. I’d like to believe there is some love left in her for me because I miss that feeling so much and it’s so hard on your own not having that physical touch of comfort.

I did some tidying and painted some shelving this morning but it struck me that only I will be seeing this, why bother? At least it took my mind of things for a short while. I am feeling sorry for myself but, then again, my world has been turned upside down and nothings the same anymore. All the sad feelings I have must be allowed, surely , because the person I’ve ever loved has been taken from me by evil dementia.

Dementia for us started approximately back in 2014, little things out of the ordinary that she’d do or say. By 2019 things were extremely bad and I couldn’t handle it anymore. I thought life would be easier ( better?) when she went into care but what a surprise I got suddenly living in this empty house.

I seem to muddle through each day, look at the tv too much, go to bed too early, get up late and sometimes I’m so numb with it all that I just sit there.

keep posting please as we thrive on these connections.

Peter
 

Stacey sue

Registered User
Jan 24, 2020
72
I find it hard not being able to visit, if nothing else when I visit I see that Dave is the right place, When home alone with his things around I forget what he is like now. I just want the old version home!! Had a letter from the care home to say they have got Covid19!, Just pray he is going to be safe. He is very mobile so don’t know how they will isolate him.Dont want to know really.
Sue.
 

CWR

Registered User
Mar 17, 2019
203
I am finding that my grief is made worse by this lockdown; the only thing that helps is knowing
that it would be worse if she were still alive and either in lockdown with me or in a home. I can't imagine what you are going through. There are so many people suffering in this situation.
 

Dutchman

Registered User
May 26, 2017
827
Devon
Well I’m here in the garden and I’m finding it hard to not be miserable. I’m crying when I thought my crying period had lessened and I feel I’m back at square one. I phoned the home a little while ago and they said she’d gone to her room so I asked after the staff and rang off.

i have this vision of Bridget in her small room lying on the bed and my heart reaches out to her and I want to be with her, to look after her, to keep her safe but, of course, I can’t.

Its the caring role I miss when I didn’t think I would. I don’t mean just practical matters but caring in a loving way for your loved one. I know that she’s getting looked after well but it’s so much my role and I’m frightened, yes frightened that I’ll never get over this.

I can’t make sense of it all really,. That we would end up like this and a part of me still can’t accept that she won’t be walking back into the house. I could be told to face facts but I'm too screwed up to do that. This long dementia experience has shown me that I’m much weaker than I thought.

im not expecting replies. I just want to unload today.


Peter
 

CWR

Registered User
Mar 17, 2019
203
I know you werent looking for a reply; there's not much I can say to assuage your pain, but you are not alone. I lost my mother 5 months ago, and have felt adrift at losing her and losing my caring role. I feel in limbo. It's natural. Feel free to vent all you want. I hope it helps to get it off your chest.Grief screws all of us; even tho' she is still alive, you are grieving for the loss of her through dementia. Take care, don't beat yourself up, you're only human.
 

Dutchman

Registered User
May 26, 2017
827
Devon
I know you werent looking for a reply; there's not much I can say to assuage your pain, but you are not alone. I lost my mother 5 months ago, and have felt adrift at losing her and losing my caring role. I feel in limbo. It's natural. Feel free to vent all you want. I hope it helps to get it off your chest.Grief screws all of us; even tho' she is still alive, you are grieving for the loss of her through dementia. Take care, don't beat yourself up, you're only human.
Many thanks CWR. A thoughtful and kind reply

peter
 

Stacey sue

Registered User
Jan 24, 2020
72
I phoned the care home today I know they have the virus in there, but they won’t say how much is in there? My husband seems to be sleeping a lot, they say they are taking his temperature , I don’t know at what point they inform you of any worries? I feel so helpless , not knowing and not being able to see him or even talk to him is hard going. The guilt never goes , just trying to get through the days.!!
 

kindred

Registered User
Apr 8, 2018
2,514
I phoned the care home today I know they have the virus in there, but they won’t say how much is in there? My husband seems to be sleeping a lot, they say they are taking his temperature , I don’t know at what point they inform you of any worries? I feel so helpless , not knowing and not being able to see him or even talk to him is hard going. The guilt never goes , just trying to get through the days.!!
All my sympathy. They simply may not know how much is in there. The home where I volunteer has the virus confirmed for one patient as a result of hospital discharge, but there may be others who have not been tested. I know how awful this is. All sympathy. Nursing and care homes have been badly treated.warmest Kindred
 

Dutchman

Registered User
May 26, 2017
827
Devon
Our society thrives on trying to persuade us that we’ve really not done well enough and we must make progress, no room for failure.

Im just a ordinary husband who has had to cope with Bridget’s dementia for at least 3 years and I feel that it could have been handled better. But there you are, putting myself down for not being top of the class.

I wish I could hold my head high and say to myself “I did my best and you don’t need to judge yourself so harshly “. But I do and I’m stuck with the negative emotions . I guess that's part of being human too.

take care all and keep posting
Peter
 

CWR

Registered User
Mar 17, 2019
203
Our society thrives on trying to persuade us that we’ve really not done well enough and we must make progress, no room for failure.

Im just a ordinary husband who has had to cope with Bridget’s dementia for at least 3 years and I feel that it could have been handled better. But there you are, putting myself down for not being top of the class.

I wish I could hold my head high and say to myself “I did my best and you don’t need to judge yourself so harshly “. But I do and I’m stuck with the negative emotions . I guess that's part of being human too.

take care all and keep posting
Peter
I cared for mum after she got dementia, for 3 years, and I know exactly you are going through guilt-wise. I was lucky, I had regular respite, but the only time I relaxed was when she was in respite. Other times I worried about her all the time. I felt relief at not having to worry over her, but guilt at feeling relieved. When I took her home from respite,she would look at me with love: " I knew you would come", but all I felt was dread at having her home. No sooner would she be home than there would be toiletting issues again. When I was at home with her, I found her repetitive questions difficult. I would go upstairs. She would follow. " Can you not stay with me"
She often said: "You've changed towards me". I am glad I managed to look after her at home but I am not a natural carer,a nd when people said I was doing a great job, I certainly didnt feel I was.I woke a few weeks ago with her words ringing in my ears: " Sometimes you werent nice to me". I know that she was singing my praises to the social worker a week before she passed away, and that she held my hand and kissed it a few days before she died, but I have to struggle to recall that when I can remember being impatient with her. I wish I could ay something to help you, all I can do is say that this is a common scenario, we all go through it. We do what we can, be it good, bad or indifferent. I hope you manage to cut yourself some slack. Take care
 

Dutchman

Registered User
May 26, 2017
827
Devon
Spoke to an Admiral Nurse yesterday after visiting the home. I had to as I was in a bit of a state and needed to talk to someone who knows what we are going through.

As my wife looked through the care home window she just couldn’t understand why I couldn’t come in. She looked so disappointed and I tried not to cry in front of her but started to and had to walk away. I wondered why I torture myself like this but, because I miss her so much, I have to go to see her.

I'm stuck between a rock and a hard place. The nurse suggested I go less often, just for a month, to see if I would feel better. Also she advised to always ask the home how she is when I’m not there. And think about the positives (are there any?)

. I’ve lost my wife to dementia and find myself on my own. I’ve got ongoing prostate concerns with my surgery delayed so I’m on hormone tablets which make me tired and more emotional . Let’s not forget lockdown and the virus fears. Is it any wonder I’m so emotional and miserable. If I feel a bit happy I feel guilty for being so, knowing that Bridget’s locked away

what a situation!
Bless you all for reading my posts

peter
 

kindred

Registered User
Apr 8, 2018
2,514
Spoke to an Admiral Nurse yesterday after visiting the home. I had to as I was in a bit of a state and needed to talk to someone who knows what we are going through.

As my wife looked through the care home window she just couldn’t understand why I couldn’t come in. She looked so disappointed and I tried not to cry in front of her but started to and had to walk away. I wondered why I torture myself like this but, because I miss her so much, I have to go to see her.

I'm stuck between a rock and a hard place. The nurse suggested I go less often, just for a month, to see if I would feel better. Also she advised to always ask the home how she is when I’m not there. And think about the positives (are there any?)

. I’ve lost my wife to dementia and find myself on my own. I’ve got ongoing prostate concerns with my surgery delayed so I’m on hormone tablets which make me tired and more emotional . Let’s not forget lockdown and the virus fears. Is it any wonder I’m so emotional and miserable. If I feel a bit happy I feel guilty for being so, knowing that Bridget’s locked away

what a situation!
Bless you all for reading my posts

peter
I know, Peter, the situation absolutely sucks. I am so sorry. Bit stumped to come up with any positives, I have to say. All we can do is endure, and I think you deserve a gold medal for that, I really do. Also, I think seeing a loved one through a window but unable to do any more than that is such a torment. All my thoughts and sympathy. with love, Kindred.
 

Dutchman

Registered User
May 26, 2017
827
Devon
Spoke to an Admiral Nurse yesterday after visiting the home. I had to as I was in a bit of a state and needed to talk to someone who knows what we are going through.

As my wife looked through the care home window she just couldn’t understand why I couldn’t come in. She looked so disappointed and I tried not to cry in front of her but started to and had to walk away. I wondered why I torture myself like this but, because I miss her so much, I have to go to see her.

I'm stuck between a rock and a hard place. The nurse suggested I go less often, just for a month, to see if I would feel better. Also she advised to always ask the home how she is when I’m not there. And think about the positives (are there any?)

. I’ve lost my wife to dementia and find myself on my own. I’ve got ongoing prostate concerns with my surgery delayed so I’m on hormone tablets which make me tired and more emotional . Let’s not forget lockdown and the virus fears. Is it any wonder I’m so emotional and miserable. If I feel a bit happy I feel guilty for being so, knowing that Bridget’s locked away

what a situation!
Bless you all for reading my posts

peter
This is such an evil disease, I Pray by the time I see Dave he will still know me? II so want him back, I know given a choice he would want to be home! He has lost so much weight in a very short time, I feel I have let him down as a wife .and the quilt I feel never goes. I know he has gone to far for me to have him home with the constant wandering and the incontenence . I would gladly swop with him! He is unaware of my misery, and I am glad of that. I know this is worrying times for all, our Daughter is a critical care nurse on the front line, I try and stay strong for her,but this isolation just is all consuming. Sad Sue.X
hi sue

you seem to be going through more or less the same as me. We would gladly give up all if it made a difference to our loved one. People ask “ imagine it the other way round, how would Bridget cope”. Well I just don’t know and that sort of question gets me nowhere.

all I know is that on balance I’d rather be looked after, as my wife is, than going through this misery every day. Anyway, it’s fantasy, but when we are going through, this thoughts become irrational
bless you

peter