Dementia’s journey

[Dutchman]

I’ve written about this before but today, after seeing Bridget at dinner time, I felt very emotional.

It always a problem saying goodbye when I feel it’s time to leave. I try to get her to accept that I’m either off to the toilet or must go to do some shopping. Sometimes as she walks away I manage to leave without her seeing me go.

. But today she just sat there looking at me with a look that was full off sadness that I’m leaving. I go back and try again but it’s the same, that look that suggests being abandoned. Imagine a dog being left, not understanding why it’s being left, and looking at you with those eyes imploring you to return. For me it’s heartbreaking. I don’t know how to get round this one.

Sometimes I just wish I could put her coat on and put her in the car and bring her home. No more goodbyes.

 

[Dutchman]

Hi @Jaded'n'faded. You are not alone. I’m here all of the weekend apart from Christmas Eve and if you need to speak your heart out I’m here to listen and probably I’ll need to speak to someone as well.,

Damn anniversaries ☹️Christmas is particularly bad because that’s when Bridget was really dementially challenged and 2018 was a disaster and within 8 months she had to go into the home.
I’m only at the end of your post so please keep your in touch❤️Peter

 

[Old Flopsy]

Hi Peter I will be here all weekend too- often with my annual whisky and lemonade within reach- which won't help the cooking schedule, but eases the pain of my first Christmas without OH.

 

[Dutchman]

I’ve been on this thread almost since Bridget went into the care home over 2 years ago now.
When I look back at the stages I’ve been through it started with devastation and complete shock with me contemplating suicide and a shed load of pills. Covid didn’t help as I wasn’t allowed into the home.

Gradually I’ve become used to being on my own and I know now that Bridget is in the only place that can look after her properly. To continue at home back in 2019 as we were would have destroyed us both.

Of course I’m jealous of other couples I know who are just carrying on with their lives when I’ve lost Bridget to dementia. I ask myself “why us, why me?” Why should we been the couple to experience this?
But there’s no rhyme or reason to any of it, just random unfairness.

I’m left now with a form of inability to get really upset and that, in itself, is upsetting. I try really hard to cry but can’t. I remember being a soaking wreck on the sofa but it’s not there any more. I want to hold on to that level of grief but it’s not there. Am I getting hardened to it? Because , if I am, I would feel I’m lessening the love I ought to have for Bridget, when the earlier amount of heartache showed how much I cared.

This has been a bit of a rambling. Just can’t make sense of it today

 

[canary]

Not being able to cry doesnt mean your love for Bridget has lessened. It is still there and will always be there, even after she is gone.

 

[CAL Y]

@Dutchman.
Im certain that you are not getting “hardened to it” but it’s just not possible or even healthy to hold on to that level of grief.
I have lost 2 husbands. One just 7 weeks ago. I have found that I don’t want to live my life with that level of misery.
I also know that friends have a limited amount of sympathy.
After a few weeks they have put it behind them but we feel it forever.
Im now pulling up my big girl panties and am off to a neighbours house for pre dinner bubbly.
please try to be less hard on yourself. Have as good a day as you are able.x
Take care.
Carole.x

 

[Dutchman]

My emotions are so sensitive to anything that might affect them. The slightest thing and I’m crying in the car. Today we spent a lovely time sharing the Christmas meal then I accidentally stepped on Bridget’s foot and the look of pure dislike and blame completely devastated me. She looked away from me wouldn’t be cheered up. I always like to leave on a happy note but she wouldn’t even kiss me goodbye.
I hope tomorrow brings a better and more cheerful visit

 

[Dutchman]

What a difference a day makes. She forgotten about yesterday and it’s all smiles again. Her smiling is her present to me. Hi @CAL Y and thanks for your message. I suppose this time of year with an emphasis on enjoying ourselves just shows up the weakness in a culture that could value instead kindness and compassion

 

[Dutchman]

I’m often reminded of how Bridget is better off now she’s looked after in the home surrounded by staff, constant care and well looked after. Of course that’s true because being here with me now it would be just me and her and me struggling to cope and both our lives would be diminished.

But in normal times we only wanted each other and it wasn’t that important to be surrounded by others. That may sound boring but life was easy and I was content.

But I’m reminded of those last days and months when she didn’t know me, when she looked for her husband at the hospital when I’m standing next to her. The rows, neglect, pleading, arguments and caring numerous bags of stuff to the front door wanting to escape. In a fit of rage once I threw these bags across the room and shouted “ what are you doing?” and she called me a nasty man. I wanted it so much to stop and didn’t have the energy to imagine how and when it would end.

I have distance now and can see how much she must have been suffering and I wasn’t able to do anything about apart from arranging residential care. A ordinary man that was sinking not swimming and trying to handle an impossible situation way beyond my capacity to cope. My poor Bridget who suffered so much and now remembers nothing of those awful times. I love her so much and I can’t make amends for getting things wrong. All I can do is to care now from a distance and love

 

[Old Flopsy]

@Dutchman But Peter you didn't get the important things wrong- you got her a wonderful care home where is is contented, and she enjoys your visits with no memory of the times when you 'lost it'. Thank goodness eh! Well it would take the patience of a saint not to shout when faced with such unimaginable changes in our loved one's behaviour.

You have been a wonderful husband and I feel she knows this. Take care.

 

[Dutchman]

Thank you @Old Flopsy. As always you are the voice of reason and I really appreciate your support and kindness over the time you’ve replied to my many outpourings.

I think we can be too caught up in our sadness that it clouds our judgment and, after all, we can sometimes be our own worse enemy when it comes to finding fault.
Thanks again ❤️

 

[Dutchman]

I can’t win!

Todays visit was really good. Bridget greeted me by name ( a first) and throughout meal time and after she was alert, forming sentences ( not all correct words), meaningful facial expressions, joining in the questions and answers, smiles and giggles and altogether a joy to be with. And I know it all a result of the care she gets from her home and my regularly visits which make me very familiar

It’s been so long since I’ve experienced any “normal” behaviour, a glimpse if you like of what Bridget was, those things we took for granted like sentences, joy, questions and answers. So today she surprised me - Bridget is in there somewhere!

And I’m upset. It’s because it’s there and not here. My old Bridget is content it seems and I’m not, so I’m jealous of her contentment. So the sense of being on my own is increased. I cannot build on what she expressed today within our home, together. It never goes away, all this toing and froing of emotions which are all mixed up

 

[Dutchman]

I’m probably guilty of going over old ground again and again and I realise there’s not much any of us can offer that can really help now that will change feelings.

I’m repeatedly told by my relatives that I’m lucky to have Bridget in a good home and I don’t have the trauma of looking after her anymore. I have a few good friends and neighbours and a caring family and I should be thankful for that. I also realise that I’ve got to get on with it and life’s for living - all that sort of stuff.

But I’m very lonely in that I miss dreadfully her companionship and love. When I see her I cling on to anything that shows me she has at least a scrap of recognition for me - a touch on my face, a squeeze of my hand. But I get home and that familiar noise of her, her taking up space on the sofa, just that routine of daily living together - all gone and it’s so silent. To be honest I look forward to bedtime so it’s another 8 hours of oblivion.

I’m sorry I repeat myself so much, probably coming across as feeling too sorry for myself but I’m limited of where to go apart from the Forum
Peter

 

[SandyF]

I’m probably guilty of going over old ground again and again and I realise there’s not much any of us can offer that can really help now that will change feelings.

I’m repeatedly told by my relatives that I’m lucky to have Bridget in a good home and I don’t have the trauma of looking after her anymore. I have a few good friends and neighbours and a caring family and I should be thankful for that. I also realise that I’ve got to get on with it and life’s for living - all that sort of stuff.

But I’m very lonely in that I miss dreadfully her companionship and love. When I see her I cling on to anything that shows me she has at least a scrap of recognition for me - a touch on my face, a squeeze of my hand. But I get home and that familiar noise of her, her taking up space on the sofa, just that routine of daily living together - all gone and it’s so silent. To be honest I look forward to bedtime so it’s another 8 hours of oblivion.

I’m sorry I repeat myself so much, probably coming across as feeling too sorry for myself but I’m limited of where to go apart from the Forum
Peter

Hi Peter,
You and my dad sound like the same person, except his wife, my mum, is called Gill. I’m not minimising your experience and saying it’s common etc., not at all but the similarity in the way you are both feeling is notable. He said almost exactly these words to me yesterday on the phone. He misses looking after mum and would have her back at home today if he could. I think the toing and froing you talked about is an excellent description of grief and is something about trying to achieve a sense of equilibrium. I suspect there is no equilibrium to be found. Maybe that’s the way forward! I know the grief I feel about what has happened to the brightest star of my life is unfathomable and untameable. I don’t entertain any ‘if only‘ thinking as that’s unhelpful. I do some ‘what if?’ though and then do a proper problem solving exercise to see if a solution can be found. If there is nothing I can do I just let myself feel extremely sad and say over and over again ‘I’m so sorry this happened to you mum.’ Then I honour her existence and the fact she gave me life and force myself to get on with it. I’m trying to help my dad with his grief too but he’s stuck in ‘if only’ at the moment. He hangs on every visit. if mum is on good form he thinks it is more likely she can come home. If she’s having a bad day, he blames himself for allowing things to deteriorate to the point of her needing care. He can’t win with himself. There’s no point trying to be rational about it and pointing out all the good stuff he has in his life. The most helpful thing for him seems to be letting him rant and rave and repeat himself over and over. Its grief - it makes people a bit bonkers. So- if you need to keep going over the same ground, I think it’s fine. Finding someone to rant at in person might help though. I think it can just help release the pressure.
Sorry your feeling so sad.
Sandy

 

[Dutchman]

Hi @SandyF . Thank for the reply. Very appreciated. I’ve just driven home from seeing Bridget and I’m ok, just.

I know there’s no mileage in thinking what if and if only but it’s human nature I think to wonder if I could have done better.
There is no way I could look after Bridget at home and that thought doesn’t enter my mind now. But having her looked after somewhere else means I’m on my own and, after 30 years together, it’s all a bit abnormal. Sure, I have more freedom and a calmer life, but I crave to look after her but struggle knowing I can’t do it on my own.
Peter

 

[Dutchman]

Hi @SandyF. I was wondering if you’d like to share any of your dad’s experiences so that we could help each other out. Sort of suggesting ways of getting through this one way or another. I’ve been on my own now for over 2.5 years after she left for a home. It’s never easy, in fact it’s very hard at times and I lurch from just ok to a crying wreck.

Anyway I’ll leave it to you.
Peter

 

[Dutchman]

Just got back from today's visit - shortest one ever ! 15 minutes of trying to persuade D to stay in my company. She got restless after the first few minutes. I've thought on the last few visits that I seem to have been relegated from familiar friendly face to complete stranger who is just a nuisance invading her space and routine. Not that she really has a routine, I'm told that she is no longer engaging in any of the activities on offer, the best the carer's can hope for is that she will join them for a cup of tea and a biscuit, we'll at least that's something I suppose. Not sure where to go with this one if this is the latest phase of the dementia, how do you visit someone who seems not to want to be in your company.

Hi @Andy54 and @Pusskins. I’m not sure if you’ll see this but I feel I need to speak to someone even if it’s a voice in the silence.

There been times when I just wish it was all over because I can’t resolve anything and the agony just goes on and on. Today she’s been twitching and they don’t know why. Could be solved by medication but 2022 brings me into thinking this could be her last year. And then what?

I’m sitting in the silence, as you too have experienced I’m sure, and looked at her photos and can’t make sense of it. My darling Bridget, now a shell of herself, and me with half of me gone. I took so much for granted in normal times never thinking it would end like this. Banter and bickering, jokes and boredom, ordinary and extraordinary stuff. All taken for granted till it’s gone.

And yes, I do feel sorry for myself. I don’t feel that I should be strong or brave or face up to it or “be a man” - whatever that means. I miss her plain and simple. I miss her annoying me, hogging conversation and just being around. And it breaks my heart when she can’t get words out from a brain that’s damaged. An English teacher who always beat me at Scrabble.
I hate loneliness. It sucks. It’s sameness everyday bores me. I had a sameness with Bridget but at least it was with Bridget.

 

[Andy54]

Hello Peter, your words echo my feelings and experiences. I seem to alternate between short periods of acceptance and longer periods of, dare I say "despair" at the emptiness in my life. I find myself thinking of the time that has passed since we had any sort of "normal" life together and it just seems unreal, it was all so long ago. This horrible situation we are in is made so much worse by the inability to communicate our feelings to each other, just a single meaningful word would be so precious. When D went into care, 8 months ago, I imagined that I would pick up in a small way at least, some parts of my life and start doing things for myself. The reality is that without her I can't find the motivation. I know we have to (or are expected to) stay strong but it's hard to do. Best wishes Andy.

 

[Dutchman]

Hello Peter, your words echo my feelings and experiences. I seem to alternate between short periods of acceptance and longer periods of, dare I say "despair" at the emptiness in my life. I find myself thinking of the time that has passed since we had any sort of "normal" life together and it just seems unreal, it was all so long ago. This horrible situation we are in is made so much worse by the inability to communicate our feelings to each other, just a single meaningful word would be so precious. When D went into care, 8 months ago, I imagined that I would pick up in a small way at least, some parts of my life and start doing things for myself. The reality is that without her I can't find the motivation. I know we have to (or are expected to) stay strong but it's hard to do. Best wishes Andy.

Hi Andy. Motivation. It’s easier when all those dementia thoughts don’t crowd in and swamp the day.
It seems to me that the main social life I have is visiting Bridget and speaking to the staff. I have a sense of betrayal if I try to do other things for myself - sort of doing things behind her back. So I feel awkward changing things in the home because it was her home ( mostly her ideas) and I feel a sense of guilt being left with a nice home when she’s restricted to a little room and a communal lounge.
Does this make sense?

I’ll go see her today and I know I’ll be upset as usual. This is something others don’t experience 3/4 times a week as they enjoy normal life so I give myself a sanity break and a pat on the back for getting through another visit. In other words why wouldn’t we be constantly in grief as we are when this is what we do and experience all the time.

 

[Andy54]

I think the one thing that I probably wasn't entirely prepared for was the emotional roller coaster that visiting creates. I think I was expecting to get a little more comfort from visiting D and seeing her well cared for. This all comes back to the communication issue, how does she feel, does she appreciate my visits, does she miss me? It's the not knowing what she is thinking or feeling that gnaws away in the background and is difficult to get past.