• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can access this area by going to the Health and wellbeing forum >here< or you can directly access the area >here<.

Dementia’s journey

Lirene

Registered User
Sep 15, 2019
170
None of this is your fault Peter, it is the disease not you. You know that Bridget would never ever have wanted this for her life, or for you to have this torment in your life. You are feeling guilt because you are unable to help, unable to do anything, none of us can, we know in our hearts and minds that we are absolutely helpless, floundering about in the depths of darkness and despair but trying and never giving up. We all wish we could, but we cannot make our loved ones well again no one in the world has this power or capability. Rich or poor, good or evil no one can buy or plead their way out of this hell. We may make promises, plead and scream at the Lord, plead with Doctors, plead and scream at our loved ones all to try and heal them but their minds cannot be healed. At the end of the day we all know that this is not a life anyone would have wished for. Alas, this is now their life Peter, this is their reality, their real world as they know it. As bad as we feel about their world and the reality In which they now live, it is not fair to give up on the people we love because their world and their grasp of reality is not how we perceive it should be. It is not Bridget that is giving up, it is the diseased mind, the diseased thought processes that are exhausted and broken by the dementia. Your mind is clear and able to understand, you know and can see what is happening it is because you know and can do nothing to stop the process that you feel as though you are falling apart. But you are not Peter, you are not falling apart, it is your own mind your own thought processes making you think that you are.
Although in your mind you are going through your own private hell, don't let Bridget’s world and reality as she now knows it, fall apart alone or with strangers you must be there to the end, she is yours. Bridget is trapped in her own hell, it is the fault of no one, you are trapped in your own hell, it is the fault if no one, but you are still capable of understanding, you are still able to process rational thoughts, you still know what is right, just, proper, lawful, still have the capability for love, friendship and can reach out to a stranger in trouble or despair- your heart is breaking - reach out to your wife Peter - this is not about you - this is for Bridget. Prayers xx
 

Dutchman

Registered User
May 26, 2017
524
Devon
None of this is your fault Peter, it is the disease not you. You know that Bridget would never ever have wanted this for her life, or for you to have this torment in your life. You are feeling guilt because you are unable to help, unable to do anything, none of us can, we know in our hearts and minds that we are absolutely helpless, floundering about in the depths of darkness and despair but trying and never giving up. We all wish we could, but we cannot make our loved ones well again no one in the world has this power or capability. Rich or poor, good or evil no one can buy or plead their way out of this hell. We may make promises, plead and scream at the Lord, plead with Doctors, plead and scream at our loved ones all to try and heal them but their minds cannot be healed. At the end of the day we all know that this is not a life anyone would have wished for. Alas, this is now their life Peter, this is their reality, their real world as they know it. As bad as we feel about their world and the reality In which they now live, it is not fair to give up on the people we love because their world and their grasp of reality is not how we perceive it should be. It is not Bridget that is giving up, it is the diseased mind, the diseased thought processes that are exhausted and broken by the dementia. Your mind is clear and able to understand, you know and can see what is happening it is because you know and can do nothing to stop the process that you feel as though you are falling apart. But you are not Peter, you are not falling apart, it is your own mind your own thought processes making you think that you are.
Although in your mind you are going through your own private hell, don't let Bridget’s world and reality as she now knows it, fall apart alone or with strangers you must be there to the end, she is yours. Bridget is trapped in her own hell, it is the fault of no one, you are trapped in your own hell, it is the fault if no one, but you are still capable of understanding, you are still able to process rational thoughts, you still know what is right, just, proper, lawful, still have the capability for love, friendship and can reach out to a stranger in trouble or despair- your heart is breaking - reach out to your wife Peter - this is not about you - this is for Bridget. Prayers xx
Lirene, thank you for understanding and very considerate reply. I’ll never give up on my wife, in fact although I’m told to look after myself as well, I don’t really care about my welfare.

You’re right of course when you say that I’m the one with the understanding and she’s the one confused. I’ve been into the home twice today especially to try and get her to eat some proper food, not just cake and biscuits. No result.

On some occasions, like tonight, she is with it and knows what she wants and determined ( a bit like my old Bridget) . She asked me ‘did I come by car’ and I have to lie and say by bus because she still has those strong feelings that she wants to go home ( I’m not totally convinced it’s our house she left in August) but it twists the knife into my already painful wound of me placing her at the care home.

It’s almost like there’s a chance I could bring her home . She sleeps well at night, has a wash every day, takes her medication and maybe she’d eat better at home. Am I totally fooling myself? The care home managed to accomplish all this and there’s no guarantee that things wouldn’t revert back to how they were prior to her going in to the home. Then what?

But it’s so painful to visit her when she clearly wants to escape. I can escape but she’s locked up. I’d have her back with me in a heartbeat, back to our lovely home, but there’s no way of knowing how things would go. I could adapt the house but I can’t help the dementia condition.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,051
Nottinghamshire
Bless you @Dutchman

My dad was the same as you when it came to thinking maybe it would be better if he could get my mum home. He tried several times but it never was and she ended up back in the carehome after another crisis.

I think you are being very brave and selfless letting your wife stay where she is.
 

kindred

Registered User
Apr 8, 2018
2,360
Lirene, thank you for understanding and very considerate reply. I’ll never give up on my wife, in fact although I’m told to look after myself as well, I don’t really care about my welfare.

You’re right of course when you say that I’m the one with the understanding and she’s the one confused. I’ve been into the home twice today especially to try and get her to eat some proper food, not just cake and biscuits. No result.

On some occasions, like tonight, she is with it and knows what she wants and determined ( a bit like my old Bridget) . She asked me ‘did I come by car’ and I have to lie and say by bus because she still has those strong feelings that she wants to go home ( I’m not totally convinced it’s our house she left in August) but it twists the knife into my already painful wound of me placing her at the care home.

It’s almost like there’s a chance I could bring her home . She sleeps well at night, has a wash every day, takes her medication and maybe she’d eat better at home. Am I totally fooling myself? The care home managed to accomplish all this and there’s no guarantee that things wouldn’t revert back to how they were prior to her going in to the home. Then what?

But it’s so painful to visit her when she clearly wants to escape. I can escape but she’s locked up. I’d have her back with me in a heartbeat, back to our lovely home, but there’s no way of knowing how things would go. I could adapt the house but I can’t help the dementia condition.
Peter, it's going to be difficult getting through Christmas, tough for both of us. But we, and all the other lovely TP posters, will do it. Much courage to you. You are a good man.
warmest, Geraldinex
 

Lirene

Registered User
Sep 15, 2019
170
Peter, my love and prayers. I have just had a tough day with my husband who is in hospital. He’s crying and it is absolutely heartbreaking. Together we are stronger, we all need each other’s help and support, we are all with each person going through our tough times together xx
 

Dutchman

Registered User
May 26, 2017
524
Devon
Peter, my love and prayers. I have just had a tough day with my husband who is in hospital. He’s crying and it is absolutely heartbreaking. Together we are stronger, we all need each other’s help and support, we are all with each person going through our tough times together xx
I’m here and will always be here when you want some comfort. We all know what each other are going through that’s what makes it so intimate, the intensity of our emotions.

Ive got back from visiting my daughter and family. The house had so many memories of Bridget that just knock me down and I imagine her doing al sorts of things around the house, ordinary mundane things that now mean so much.
I’m visiting the home for Christmas dinner tomorrow and again on Boxing Day. My wonderful wife loved Christmas so much and now she will not understand but I’ll do my best to do my best.
My love goes out to all my fellow posters.
 

Lirene

Registered User
Sep 15, 2019
170
Thank you Peter, your words means so much. Love and prayers to you and Bridget and everyone, to ease our troubled minds xx
 

Dutchman

Registered User
May 26, 2017
524
Devon
Bless you @Dutchman

My dad was the same as you when it came to thinking maybe it would be better if he could get my mum home. He tried several times but it never was and she ended up back in the carehome after another crisis.

I think you are being very brave and selfless letting your wife stay where she is.
I’m not brave or selfless I’m afraid just very scared that if I brought her home she wouldn’t react positively, I wouldn’t be able to cope and we would be back to square one. Probably she would end up in hospital through self neglect again

The home arrangements would get complicated concerning available accommodation and I’d be blamed for being selfish

it’s a horrible horrible situation and there’s no straight forward solutions. I have family with me now which takes the edge off but once they go home it’s just me and sometimes it’s just too much. My first Christmas without her and it hurts like mad.
 

Dutchman

Registered User
May 26, 2017
524
Devon
Just come back from the home accompanied by my daughter. It’s so much easier emotionally when there’s someone with you.

I really hope and pray that everyone out there struggling with emotions, those of us that see little point sometimes to anything and feel raw with upset have a little bit of peace that they can rest in.

Bless you all. Peter
 

kindred

Registered User
Apr 8, 2018
2,360
Just come back from the home accompanied by my daughter. It’s so much easier emotionally when there’s someone with you.

I really hope and pray that everyone out there struggling with emotions, those of us that see little point sometimes to anything and feel raw with upset have a little bit of peace that they can rest in.

Bless you all. Peter
That is a beautiful blessing, Peter. Thank you. warmest, Geraldinexx
 

Dutchman

Registered User
May 26, 2017
524
Devon
All the family are going back today so I’m going to be on my own again. I’m going to take maybe two days off from visiting the home as Bridget seems fairly settled at the moment.

Christmas came and went and for Bridget it didn’t mean anything. I’m glad in a way because she loves Christmas normally.
 

Dutchman

Registered User
May 26, 2017
524
Devon
I’ve just come across a note book Bridget used to write in and it’s brought me low. Such interesting and precise grammar. She was always better at English than me. The writing is clear and beautiful. It reminds me of her vitality and cleverness.

Now she can’t even hold a pen.
There really is no way out of reminders that upset us and I can’t see a way out of forever being lonely for her. I thought I’d turned a corner in my grief but it’s too much sometimes and I feel helpless.

today, after the children went home , to get rid of some of the time I slept on the sofa and that I do regularly. I just sleep to get rid of time. I know it’s probably not healthy and I should do something but I’ve no motivation to do anything, not without my Bridget to keep me company.

I think a dog companion is becoming more of a possibility because this loneliness is killing me. Anyone else feel this way?
 

chippiebites

Registered User
Jun 27, 2018
83
I think a dog would be a great companion. I still have my husband at home. He has vascular dementia and is 86. He sleeps nearly all the time and doesn't talk to me. He does say the odd word, but it is like living on your own. I have a English Springer Spaniel who takes me for a good hour's walk every day. I also have a Jack Russell, who sleeps on my bed. I could not survive without my 2 dogs. So I would strongly recommend dogs as great company. I have heard of dog fostering, some dog rescues use foster families I believe. If you tried that you could see how you got on. A slightly older dog might be best and you would have a friend to care for and exercise. Best wishes
 

Dutchman

Registered User
May 26, 2017
524
Devon
I was numb and depressed from the word go this morning and didn’t see any point in getting up so I was still in bed at 11.00, nothing to do or go anywhere.

I had to go shopping so I had no choice but get up and get going. I was so unhappy that I spoilt my self by doing some retail therapy and bought a watch.

I’ve had a long talk with the Dementia nurse who very kindly reassured me that whatever I do or don’t do is my decision and acceptable. Whatever gets you through the day. I always feel if I don’t go to see Bridget I’m somehow letting her down and have abandoned her. No matter how many times I’m told that I’m doing okay, that I’m being a good husband, that I’m doing the best that anyone could, well Im just not reassured. I find self judgment and worry just takes over.

I don’t think that I’m hard enough for this situation but I can’t changed my nature or the amount of love I feel for Bridget. One day something will be said or done that will give me some peace.

I need to unload my thoughts here as it gives me some comfort.

Thanks all
 

kindred

Registered User
Apr 8, 2018
2,360
I was numb and depressed from the word go this morning and didn’t see any point in getting up so I was still in bed at 11.00, nothing to do or go anywhere.

I had to go shopping so I had no choice but get up and get going. I was so unhappy that I spoilt my self by doing some retail therapy and bought a watch.

I’ve had a long talk with the Dementia nurse who very kindly reassured me that whatever I do or don’t do is my decision and acceptable. Whatever gets you through the day. I always feel if I don’t go to see Bridget I’m somehow letting her down and have abandoned her. No matter how many times I’m told that I’m doing okay, that I’m being a good husband, that I’m doing the best that anyone could, well Im just not reassured. I find self judgment and worry just takes over.

I don’t think that I’m hard enough for this situation but I can’t changed my nature or the amount of love I feel for Bridget. One day something will be said or done that will give me some peace.

I need to unload my thoughts here as it gives me some comfort.

Thanks all
Peter, I know. I'm also searching for something to give me peace. I think what torments us is that we cannot make things better for the people we love. Our love cannot restore them as it would have done once.
All fellow feeling and sympathy, we're with you here. Geraldinexx
 

notsogooddtr

Registered User
Jul 2, 2011
912
A new year and a new decade beckon. I hope you can find some peace in your new future.Even though it's not the future you planned or wanted.
 

Dutchman

Registered User
May 26, 2017
524
Devon
Peter, I know. I'm also searching for something to give me peace. I think what torments us is that we cannot make things better for the people we love. Our love cannot restore them as it would have done once.
All fellow feeling and sympathy, we're with you here. Geraldinexx
I don’t know why but I’m a mess this morning. I do know why but I’m afraid to admit it. I’m lonely for my wife, I’m still in bed because I feel there’s nothing to do, I dread going to the home and wish i didn’t have to go any more. But that means she’d be dead and I’m frightened what will become of me when that happens.
After 30 years of being together I’m finding so difficult to cope on my own. All the encouragement from forum members, dementia nurses, everyone saying I’ve done well, that I coped well while she was at home doesn’t seem to help.

im crying my heart out for regretting I didn’t love her more when we were together, of all the times she wanted me but I kept my distance because she hadn’t washed and changed for months.

I really don’t know how much more of this I can take and fear for my state of mind. The only peace I have is when I’m asleep but then I have to face the next day.
I thought I was doing ok but now I just don’t know any more.

l know there’s not much anyone can say or do to change the situation and my feelings are normal grief but I just wish I could be harder and not so sensitive. I love my wife so much but wish I didn’t if you know what I mean.
Sorry for going on so long. Bless you all
 
Last edited:

kindred

Registered User
Apr 8, 2018
2,360
I'm here, Peter. With you. These terrible feelings come on us like waves, threatening to drown us. It is so hard to be alone, I know that. We have to find a way through it. go and see your wife when you can. Don't pile up more regrets, please see her as often as you can. you know I understand.
warmest, Geraldinexx
 

Dutchman

Registered User
May 26, 2017
524
Devon
I'm here, Peter. With you. These terrible feelings come on us like waves, threatening to drown us. It is so hard to be alone, I know that. We have to find a way through it. go and see your wife when you can. Don't pile up more regrets, please see her as often as you can. you know I understand.
warmest, Geraldinexx
Thank you so much Geraldine.
 

Members online

Forum statistics

Threads
113,396
Messages
1,660,014
Members
64,267
Latest member
Jim and Val