Dementia’s journey

[Dutchman]

It was Bridget’s birthday yesterday and the home made her feel special and she had two pieces of cake ??, lots of cards and flowers. If she had been here at home with me with her present dementia it would have been a dismal affair, although I would’ve tried my best. So I get a little comfort from the homes love and attention.

It’s raining hard here which means I can’t potter in the garden which i enjoy as it diverts my attention away from feeling miserable. So jobs indoors. I try to organise everything as best I can as that’s my way of being in charge of at least something whereas Bridget’s situation is out of my control.
I pray that all my fellow posters will have some peace in their lives today.
Bless you all

Peter

 

[Pepp3r]

Hi @Dutchman, its lovely to hear that Bridget was made to feel special on her birthday, and enjoyed her cake .... hold on to those little moments.

The weather is rubbish here too in Kent, so im stuck inside trying to concentrate on work!!
Take care,

 

[blackmortimer]

Hi @Dutchman, its lovely to hear that Bridget was made to feel special on her birthday, and enjoyed her cake .... hold on to those little moments.

The weather is rubbish here too in Kent, so im stuck inside trying to concentrate on work!!
Take care,

Today it quite suddenly hit me how much the weather affects me. When the weather's reasonable - at least dry and not too cold - at this time of year I would get outside and try to tidy up the garden as in pre-dementia days Margaret would have doing. That kind of chore makes her feel closer. But a day like today.....! Cold, wet, windy - no chance of getting out, not feeling able to do anything inside either because the house seems dull and empty and even the dog slopes off to sleep through the whole thing. That's when the demons set in. I can only say how glad I am to have found this forum and to know that I'm not alone.
God bless

 

[Dutchman]

Hi @blackmortimer and @Pepp3r and all my other friends and fellow posters. The weather can indeed make a difference to our moods. Contrary to some others I get quite cozy when the rains lashing the windows and I’m inside. Bridget is protected at the home from bad weather and this gets me closer to her somehow. I cling to any comfort like this.

@blackmortimer, I envy you having your dog as company that you need to care for and love. And to depend on you. My dear cats died soon after Bridget left here for the home and I miss them cuddling up to me and needing me. As soon as lockdown lifts enough I’ll get another pet. Bridget chose our cats and it won’t be the same.

I’ll tell you exactly how I feel today: it’s as though Bridget is becoming not a stranger but a person I once knew. I try to look at this dispassionately to make sense of this. I don’t want to lose the intimacy of our 30 plus years of marriage but her dementia and being apart for nearly 18 months is destroying my capacity to remember her conversation, her personality, facial expressions and all those tiny things that make Bridget Bridget.

I fight against this but it’s hopeless. When I’m allowed into the home in April, in many ways, it will make matters worse because I’m going to be in closer contact with a Bridget that will , in all probability, treat me as one of the staff. I’m extremely apprehensive.

God bless you all, Peter

 

[blackmortimer]

Hi @blackmortimer and @Pepp3r and all my other friends and fellow posters. The weather can indeed make a difference to our moods. Contrary to some others I get quite cozy when the rains lashing the windows and I’m inside. Bridget is protected at the home from bad weather and this gets me closer to her somehow. I cling to any comfort like this.

@blackmortimer, I envy you having your dog as company that you need to care for and love. And to depend on you. My dear cats died soon after Bridget left here for the home and I miss them cuddling up to me and needing me. As soon as lockdown lifts enough I’ll get another pet. Bridget chose our cats and it won’t be the same.

I’ll tell you exactly how I feel today: it’s as though Bridget is becoming not a stranger but a person I once knew. I try to look at this dispassionately to make sense of this. I don’t want to lose the intimacy of our 30 plus years of marriage but her dementia and being apart for nearly 18 months is destroying my capacity to remember her conversation, her personality, facial expressions and all those tiny things that make Bridget Bridget.

I fight against this but it’s hopeless. When I’m allowed into the home in April, in many ways, it will make matters worse because I’m going to be in closer contact with a Bridget that will , in all probability, treat me as one of the staff. I’m extremely apprehensive.

God bless you all, Peter

Ye, I agree, Peter a pet is one way of at least to some extent, keeping your feet on the ground. I find myself talking to the dog as if she were Margaret and find myself having sort of conversations. I will tell her if I'm going out, shout out to her when I come in and if we're going out together, as in going for a walk, I'll talk her through it. Some of it she seems to understand probably by body language and the rest I imagine. I know this might not work for everyone, but I find it helps me. She was originally really Margaret's dog - she chose her and took charge of her puppy training in those far off pre-dementia days so for me there's a connection - which is comforting. It may not work for everybody, of course. We're all different.

I know what you mean about visiting when it starts again. I'm waiting for further information at present but I have to confess to misgivings. On the one hand I want to see Margaret in the hope that she's better than she was at my last "window visit" was a bit of a failure. On the other, I dread that she may not recognise me or confuse with someone else or, worse of all, recognise me and tell me to go away and leave her alone (this happened when I last had a phone call with her.

Anyway, that's all to come so for the moment as the sun has come out, it's no longer raining and the wind seems to be dropping, I'll take the dog for a walk and give myself a bit of a talking to.

God bless

 

[Dutchman]

Can any give me a reasonably straight answer as I’ve looked everywhere and there’s no good explanation to this associated dementia behaviour.

Why does Bridget constantly walk around the home, up and down the corridors? She cannot sit still for very long. I go and see her and we exchange as much as we can through the window and then she’s off again walking slowly to the end of the corridor, turns around and comes back, goes into the lounge, goes down another corridor. This is repeated most of the day. It just seems she’s constantly looking for something and I’d dread to think she’s always anxious and upset.

Advice please

 

[Shedrech]

in my dad's care home, the walking seemed to be what helped several residents be more settled and calm, it appeared to be of some comfort to them ... the physical movement eased their anxiety

 

[jaymor]

My husband was a pacer, he walked all day and most of the night when he was at home and in the nursing home. I visited most days and he would sit with me then suddenly get up and go. I let him go and would either tidy his wardrobe and drawers or sit and read. I felt it was better to let him do what he wanted to, not what I would prefer him to do. Sometimes I walked with him to try to guide him towards the garden if the weather was fine but he preferred the corridors.

I had the key code to the kitchen and sometimes I’d catch him just before the kitchen and persuade him a cup of tea and a biscuit was just what he needed. The tea he would take a couple of sips of and up he would get and off he went carrying his biscuits with him. There certainly was something in walking that he found helpful.

 

[Everest1969]

I find walking is my go to activity when I'm feeling worried or anxious. Something about the action of putting one foot in front of the other is quite medatitive(?) for me. Since my parents move and all that covid lockdown brings, I find walking is what brings me most 'peace'. Perhaps it's the same for some dementia patients.

 

[blackmortimer]

I find walking is my go to activity when I'm feeling worried or anxious. Something about the action of putting one foot in front of the other is quite medatitive(?) for me. Since my parents move and all that covid lockdown brings, I find walking is what brings me most 'peace'. Perhaps it's the same for some dementia patients.

Margaret is the same. She seems sometimes unable to simply sit and rest but needs to be on the move. In fact they had to increase her evening medication recently in the hope of getting her to sleep . When she was in the Mental Health Unit and I could visit more regularly I asked the nurses once or twice whether this pacing was normal and they said it was and they took it as a sign that the patient was reasonably content. It seems to be part of a need for the patient to withdraw into their own world. So I think it's something to accept rather than worry about.

God bless

 

[Everest1969]

Margaret is the same. She seems sometimes unable to simply sit and rest but needs to be on the move. In fact they had to increase her evening medication recently in the hope of getting her to sleep . When she was in the Mental Health Unit and I could visit more regularly I asked the nurses once or twice whether this pacing was normal and they said it was and they took it as a sign that the patient was reasonably content. It seems to be part of a need for the patient to withdraw into their own world. So I think it's something to accept rather than worry about.

God bless

and on another plus point, it keeps them physically active too, although rest is also needed. My mother has lost the ability to walk in recent months and I worry that she is wasting away in a chair.

 

[Dutchman]

Thank you @blackmortimer @Shedrech @Everest1969 @jaymor, your replies have given me a degree of comfort.

Bless you
Peter

 

[Dutchman]

It’s with a sense of shame that i feel a bit better lately. This forced separation and getting used to being on my own, day after day, has the effect of making it the normal way of things. I don’t want it like this but what else can i do.

I feel awkward with it. I suppose what i’m trying to describe is that, in some way, I ought not to feel this way and deep down I wish to still suffer. I said previously that misery is so tiring but so also is trying to make sense of all this. Like most of us I’ve gone from an ordinary relationship blessed with love to one that dementia has destroyed and pulled us apart. And i’m constantly reminded of this when i see Bridget in her home living a completely different life.

Enough. Sorry, gone on a bit.

Peter

 

[blackmortimer]

It’s with a sense of shame that i feel a bit better lately. This forced separation and getting used to being on my own, day after day, has the effect of making it the normal way of things. I don’t want it like this but what else can i do.

I feel awkward with it. I suppose what i’m trying to describe is that, in some way, I ought not to feel this way and deep down I wish to still suffer. I said previously that misery is so tiring but so also is trying to make sense of all this. Like most of us I’ve gone from an ordinary relationship blessed with love to one that dementia has destroyed and pulled us apart. And i’m constantly reminded of this when i see Bridget in her home living a completely different life.

Enough. Sorry, gone on a bit.

Peter

I know exactly what you mean, Peter. You have a better day and you feel guilty. But you shouldn't. Such days are fleeting. Best to enjoy them. Margaret had a favourite quotation (from whom I'm not sure) and one that I comfort myself with

"I greet him when I meet him
And I bless when I understand"

God bless

 

[Dutchman]

thank you @blackmortimer.
Peter

 

[Dutchman]

Just to make a change from my constant outpouring of upset and self examination of my grief, I want to send out my thanks and love to all of those who, over the past years, have supported me and given me strength.

I’m continuing to have very dark moments and found myself in a crying heap yesterday wondering why me and Bridget couldn’t have just had a normal life. You know, ” why us, why me” and then I feel bitter and resentful. Perhaps I’ll always feel a little of this, even in years to come. A future snatched away, but I guess that’s how we all feel many times a day.

god bless you all

Peter❤️

 

[Countryboy]

hi everyone

I’m so wrapped up in the present and have few detail records of what life was like on The forum when I started back in 2017
I need to see all my posts and replies since when I started.. this would be great help to me.
Has anyone a way of doing this?

When I look / think back to when I first joined TP in March 2005 and replied to my first thread ( on driving with dementia ) and look my replies now in March 2021. it’s as though nothing has change I’m still having to defend the dementia driver although I did notice one thing for year I was reporting I was first diagnosed with Alzheimer’s in November 1999 when actually it was July 1999 { sorry for that mistake I’ll put that down to my dementia } but I’m still driving that the most important thing and still remain positave thinking also important

 

[Dutchman]

Ok, I know I said I was feeling better but it’s a momentary blip and I’ve just come home from my daughter’s and I’m on my own and I’m so fed up with it. Like a drug I turn to recent pictures of Bridget in the home so I can feel closer to her ( why do I do this to myself?) but it just turns into more misery and I’m walking round the room crying saying I want you back so much.

I often come into the house and in my mind I imagine her being there, like some miracle. At the home she is constantly surrounded by people caring for her and I’m left to pick up the pieces on my own. She’s totally unaware of our past life.
Is this ever going to end or are we destined to always be in despair over and over again when the smallest thing can set us off? I’m just so fed up and tired of it.

One of the problems is that because every relationship is unique then we have unique grief that I often feel no one can ever understand. We support each other as best we can but no one else can do this for me and that adds to the isolation and loneliness.

I needed to calm down by writing this down
Peter

 

[kindred]

Ok, I know I said I was feeling better but it’s a momentary blip and I’ve just come home from my daughter’s and I’m on my own and I’m so fed up with it. Like a drug I turn to recent pictures of Bridget in the home so I can feel closer to her ( why do I do this to myself?) but it just turns into more misery and I’m walking round the room crying saying I want you back so much.

I often come into the house and in my mind I imagine her being there, like some miracle. At the home she is constantly surrounded by people caring for her and I’m left to pick up the pieces on my own. She’s totally unaware of our past life.
Is this ever going to end or are we destined to always be in despair over and over again when the smallest thing can set us off? I’m just so fed up and tired of it.

One of the problems is that because every relationship is unique then we have unique grief that I often feel no one can ever understand. We support each other as best we can but no one else can do this for me and that adds to the isolation and loneliness.

I needed to calm down by writing this down
Peter

I know, Peter, I often pray for the rent in the universe that will propel Keith back to me and I will hear his key in the front door.
No one can do this for us but on this forum we can do it alongside each other. With love Kindred.

 

[blackmortimer]

I know, Peter, I often pray for the rent in the universe that will propel Keith back to me and I will hear his key in the front door.
No one can do this for us but on this forum we can do it alongside each other. With love Kindred.

I think we all do, @kindred . I think Peter articulates beautifully what many of us feel, how many reactions we all share, how only those who have been there can ever really know the pain and anguish of separation and that feeling of hopelessness. What Peter writes so often echoes my own feelings. Thank goodness mt daughter found this forum and encouraged me to participate. I think it's keeping me sane.

God bless