Dementia’s journey

[Dutchman]

hi

it’s 08.00 on Sunday morning and i wondering if i should see Bridget today. I’ve said on TP before that she recognises me and i exchange flowers for her possible blown kisses and smile.

To be totally honest, and it troubles me to say this, i’m becoming used to her not being here. it’s almost a year now since she left and the rawness has gone, although i do have my crying moments. My memories are in my heart and i have pictures of better times on my shelves.

I fight the losing of her touch, my ability to hold her and kiss her. I’ve read many accounts of how lockdown has denied love ones the closeness they want during visits. Some don’t visit because it’s too upsetting.

it’s hard to describe feelings but all i know is that i love her and it kills me that she doesn’t feel the same back. Although that would mean she would be upset in our separation. Oh, i don’t know, it’s a situation that can never be resolved, and , of course, that’s part of the problem.

Bless you all

Peter

 

[Cat27]

She loves you in her heart. Love like yours doesn’t die even though it can’t be verbalised any more.

 

[Dutchman]

thanks for the quick and considered reply.

 

[Izzy]

You’re most certainly going through anticipatory grief @Dutchman.

My husband was never in a care home and died 4 years ago and I recognise some of what you say in the progress of my own grief.

Be assured - Bridget loves you - hold that dear to your heart.

 

[Dutchman]

Hi

an update on visit experiences. i went this morning and took some flowers as usual and saw Bridget through the window of the lounge. The staff woke her and took her to the open window so i could pass things through.

When she saw me she brightened and smiled, said it’s cold, and i said she looked lovely, that her hair looked good having been just been washed. I said see you soon and she gave me a knowing wink as anybody dementia free would do. Again the dementia fools you into thinking normality is there, not absent from her and another thing for me to hang on to. It’s almost like i could take her out for coffee and have a meaningful time. Dream on !

Peter

 

[Lirene]

Hello Peter,
The Deviousness of Dementia strikes yet again and walks you through and into the false state of security. Please don’t be fooled, it is the most cruel and horrible condition, disease - call it what you will, it robs you of the person you love, brings glimpses of them back from time to time and then robs them from you again. It is vicious and frightening for those of us who are on the outside looking in and who can look in total disbelief at what is happening to this person that we love. Please remember that your loved person is happy, as now their life is to them normal - this is their world as they know it. We cannot change or alter their world, and their sense of reality now, all we can do is be there for them and go into their world and not try and force them into ours as this disease has changed ours out of all recognition for us too.
Truly my heart goes out to you and all of the others going through this ordeal. It was mum’s funeral yesterday, she was 96, in a nursing home for the past 12 years with Alzheimer’s and was absolutely ravaged by it - as we all have been. I am at a loss for words to describe the mental torture we have been through watching every aspect of this disease and turning my mum eventually back into a baby who knew nothing and no one. My one and only blessing is that she didn’t know this was happening to her - for this over the years was her normal, this was her ordinary life and she was happy.
I would not wish this on a living soul, I prayed and pleaded for the Lord to take her before she got to this stage, but it was not to be until now.
We never gave up though and it has been the hardest of roads but we were always there fighting her corner, doing our best for her and we never gave up - because she only had us.
My thoughts and prayers are with you, may you all be given the strength to continue, to never give up, it is the hardest and possibly the longest road you will ever travel but, as hard as it is throughout this journey, they only have you.

 

[Dutchman]

Many thanks for your reply. your words are a comfort to me.

I visited today and although i know she’s well looked after and cared for by good staff it still hurts like mad that she’s there and i’m here. She took the flowers as usual and after a few moments turned and walked away. But this time i had the opportunity to just stand there and watch her through the main door glass and watch as she walked up the corridor and down the corridor, just walking and turning. i know this is normal behaviour in dementia but i felt so deeply for her, so wanting to comfort her as she looked so lost and sad.

i cried then while watching her and i’m crying now at the thought of it. It never goes away and i’m not sure it ever will. My love will always be just the one , just her and with that i’m satisfied i found love and grateful and lucky that we found each other.

Peter

 

[Just me]

Hello Peter,
The Deviousness of Dementia strikes yet again and walks you through and into the false state of security. Please don’t be fooled, it is the most cruel and horrible condition, disease - call it what you will, it robs you of the person you love, brings glimpses of them back from time to time and then robs them from you again. It is vicious and frightening for those of us who are on the outside looking in and who can look in total disbelief at what is happening to this person that we love. Please remember that your loved person is happy, as now their life is to them normal - this is their world as they know it. We cannot change or alter their world, and their sense of reality now, all we can do is be there for them and go into their world and not try and force them into ours as this disease has changed ours out of all recognition for us too.
Truly my heart goes out to you and all of the others going through this ordeal. It was mum’s funeral yesterday, she was 96, in a nursing home for the past 12 years with Alzheimer’s and was absolutely ravaged by it - as we all have been. I am at a loss for words to describe the mental torture we have been through watching every aspect of this disease and turning my mum eventually back into a baby who knew nothing and no one. My one and only blessing is that she didn’t know this was happening to her - for this over the years was her normal, this was her ordinary life and she was happy.
I would not wish this on a living soul, I prayed and pleaded for the Lord to take her before she got to this stage, but it was not to be until now.
We never gave up though and it has been the hardest of roads but we were always there fighting her corner, doing our best for her and we never gave up - because she only had us.
My thoughts and prayers are with you, may you all be given the strength to continue, to never give up, it is the hardest and possibly the longest road you will ever travel but, as hard as it is throughout this journey, they only have you.

Sorry to hear about your mum @Lirene. Such a long difficult time for you all.
It is a cruel and horrible disease and one I would not wish on anyone.

 

[Dutchman]

i’ve the family with me at the moment. our daughter will be coming with me tomorrow to see her mum and i appreciate the company even if, in the end, i have to live with the never ending upset of seeing my wife in this dementia twilight zone.

i comfort our daughter when we go but, in a way, i like to hide my feelings and then when i’m alone i can grieve on my own. Does that sound selfish?

It’s been so different here while the family has stayed for a while. They go home after tea time. So busy that the thoughts i usually have of Bridget have not been so near the surface. Now i’m in bed my thoughts flood in once more and i feel i’ve neglected her even if she’ll have no idea i’ve done so. I want to feel more connected but it’ll never be possible.

Goodnight my love. I’m going to sleep now as you also must be doing. I know you won’t be thinking of me but i pray you are peaceful.

Peter

 

[Stacey sue]

you are saying exactly how I feel. It is comforting to know I am not alone. X

 

[Dutchman]

i know Stacy. we feel so isolated with all of this and sometimes we thinks it’s only us with these feelings, so raw and so personal. But we’re human and all, more or less, react the same to the heartbreak of dementia.

We went to the home this morning and Bridget was in the sun lounge, sitting with a cup of tea and biscuits, next to the window. We got her attention and she looked distantly at us wondering who we were for the moment. Anyway the staff led her to the office open window and we gave her flowers, bananas and strawberries. She said thanks, it’s cold and i’m ok.
I mean, really, talk about twist your heartstring!!

It upsets me every time i go seeing my lovely, once articulate, joyful and on top of most things, reduced to this. I know she’s probaby not suffering like me but in my imagination i think she is. Twelve months to the day today she went in. It seems like a lifetime.

Bless you all

Peter

 

[Dutchman]

Just going through some photos on the ipad of Bridget one year ago and i come across some of the last ones when she was at home. I must have done some random ones because there she is, on the sofa, looking at the tv while trying to open a pack of sandwiches.

Yes, even such a mundane action such as this, and the memories of it, have upset me. My wife is in our home during the last days of her dementia behaviour before leaving for the care home. No longer will she be here so those last memories, no matter how bad and mad it was, are extremely precious. How we live out lives just doing ordinary things.

Peter

 

[PalSal]

Most times when I visit I take in more of my OH's 'things' e.g. his Queen's Scout Certificate and photo of him receiving it from the Chief Scout (which sparked a conversation with the visiting Podiatrist who was also a QS. I have started a photo album for him and take in around a dozen photos at a time, which we look at and then put in the album, adding the names date and place. The activities coordinator, whose father was a dance band drummer, persuaded me to take in OH's drumsticks and snare drum. He ignored it for about a week but has now started drumming along when there are entertainers in or CDs played. He also has his own, brought from home, riser chair in the lounge and various treasured possessions in his room. This week I have been swapping some of his summer weight clothes for warmer ones.

Usually, if the weather allows, we go for a walk round the gardens, hand in hand. If it is wet we either join in any activities or sit together in the wee conservatory. I take him wee treats such as chocolate or plums from our garden, which he thinks are contraband and scoffs when no one is looking. OH seems to think I also live in the Care Home, but in a different unit. He wishes that we shared a room, but has worked out that we cannot as all the rooms only have single beds. Yesterday, he was cheery and full of fun, today he was miserable and kept nodding off, so I didn't stay long. It is by no means perfect but 100 x better than when he was at home and I was sleep deprived and getting more and more frustrated by his incontinence, same questions, over and over and following me about like my shadow.

Treasure that recognition, hug and kiss when you visited, I hope there are many more hugs and kisses to come.

Thanks for this Wifenotcarer. I sincerely hope this will be my experience. We are on a waiting list ......

 

[Dutchman]

Im having serious feelings of not doing enough, comparing myself to other carers with the love ones in a home. I’m getting used to being here alone ( what else can i do?) and now feel that i’m neglecting Bridget because i go less often to visit, stay a little while, don’t pine for her as much and she’s becoming more distant that ever to me. Is this normal or am i just a selfish so and so?

But she’s not day to day living here. She’s in another ‘home’ and to all intents and purposes she sees that as her home now. She doesn’t recognise me as her husband so how am i supposed to feel and react? Others seem to do so much but the anticipated opening up of the home makes me anxious after so long and not being able to even hold hands.

Peter

 

[kindred]

Im having serious feelings of not doing enough, comparing myself to other carers with the love ones in a home. I’m getting used to being here alone ( what else can i do?) and now feel that i’m neglecting Bridget because i go less often to visit, stay a little while, don’t pine for her as much and she’s becoming more distant that ever to me. Is this normal or am i just a selfish so and so?

But she’s not day to day living here. She’s in another ‘home’ and to all intents and purposes she sees that as her home now. She doesn’t recognise me as her husband so how am i supposed to feel and react? Others seem to do so much but the anticipated opening up of the home makes me anxious after so long and not being able to even hold hands.

Peter

Peter, we have to adapt to new circumstances or go mad, You are adapting a little and please do not blame yourself for that. It’s not about being selfish. You would not call me selfish for being able to smile and laugh even though Keith is dead. But I can. I think under experiences as terrible as these we find ways to survive while still honouring the ones we love.
I am so grateful to you for sharing your thoughts so openly and thus enabling the rest of us to do the same.
With love, Kindred

 

[Banjomansmate]

What about the greyhound?

 

[Dutchman]

Ah the greyhound! He’s arriving towards the end of this week. He’s going to be called Buddy.
I’ve been busy dog proofing the garden although no off the lead at first. I’ll be spoiling him of course with great bedding and a cosy cage. I’m confident he’ll be a great companion.

 

[Dutchman]

Peter, we have to adapt to new circumstances or go mad, You are adapting a little and please do not blame yourself for that. It’s not about being selfish. You would not call me selfish for being able to smile and laugh even though Keith is dead. But I can. I think under experiences as terrible as these we find ways to survive while still honouring the ones we love.
I am so grateful to you for sharing your thoughts so openly and thus enabling the rest of us to do the same.
With love, Kindred

You’re right of course. We have to get on with the hand we’re dealt with even though it hurts like mad. Thanks for the thoughtful reply.

Bless you.
peter

 

[Dutchman]

Hi there.

I’m writing because at odd moments like this i feel a mixture of feelings that either console me or upset me dreadfully. I get uncomfortable about being comfortable on my own and it’s almost like i’m a traitor to Bridget for feeling better. I can almost hear her saying ‘that’s what you’ve always wanted, to be on your own’ She often said in her worst moments towards the end here at home that your only think of yourself. That’s not absolutely true of course but i did crave for some kind of freedom towards the end.

I didn’t finish my counselling sessions due to lockdown and i miss now not being able to work through these remaining issues. Dementia means that not only do we lose our love ones, they’re still there to remind us of our loss. The randomness of emotions, the agony Bridget must have experienced last year trying to find me and wanting to escape the house, my inability to cope with dementia behaviour, the stress and bitterness, all amounted to the worse time in my life.

And now we’re on our own and have times like these where we have too much time to reminisce and brood over what might have been and having to adapt to a different kind of future.

I know most of us feel something similar. I just felt like airing how i feel

Bless you

Peter

 

[LouiseK!]

It’s grim isn’t it Dutchman? I look back sometimes to see how things were such a short time ago for me and find that they were bad in quite a different way from today. I am finding that as he gets worse I have a bit more mental freedom but more mental stress dealing with his symptoms, a paradox really, which goes to show how caring for someone with this disease messes with your head.

Feeling the same right now.