Dementia’s journey

[Dutchman]

I’m sorry to have to write this but does anyone out there, like me, think that’s life’s not worth living. I’ve felt like this for sometime now. I’m stuck indoors and I now have a taste of the wretched life Bridget must be living.

My whole life revolves around visiting her as she’s still my life and my love. I can’t let that go. The house is empty and barren of life and it just seems pointless now wondering about the rest of this year. I do wonder now what is the point. I would have hoped to be better and more positive by now but I’m not.

 

[notsogooddtr]

Hang on in there Peter. You are bound to be feeling low, you have had surgery, you haven't been able to see Bridget and it's January. Tomorrow is another day.

 

[Violet Jane]

I agree with notsogooddtr. I suspect that you're feeling apprehensive about your visit to Bridget tomorrow, apprehensive about what she will be like and about how she will respond to you. Even if the visit tomorrow doesn't go well that doesn't mean that future visits won't be better.

 

[canary]

Surgery always makes you feel low and i expect you are worried about how Bridget is.
Dont forget that Bridget will not be experiencing life in the same way as you do.

 

[update2020]

Yes @Dutchman i do feel like that sometimes. I’ve worked hard not to but it’s still a work in progress and I suspect it always will be. I lurk on here when I feel most like that, so I understand how/why you do too. I know that you’ve had better days and I am sure they will return when you’re over your op. It’s really great news that Brigit is covid free and that your recovery is on track. Try to live in the moment and do whatever works for you in that moment. The future and the past are beyond our control.

 

[Andy54]

@Dutchman , Living this strange in between life that we do I think we cling to those familiar routines that link us to our (better) past and we become very unsettled at the slightest interuption of those routines. You have had 2 major interuptions at the same time so I'm not surprised that you are at a low point at the moment. Look forward to getting back to enjoying your visits with Bridget.

 

[Thethirdmrsc]

Hi Peter, we all know that for all of us, this is not the life any of us wanted or envisaged, and certainly the move into a care home brings its own problems and emotions. I have certainly cried more in the last 3 months than in the 5 yrs since this disease hit us. But I don’t want to give up yet. You told me to hang on to him, and so should you. We are after all still married. I do know that I am depressed and stressed, and I am seeing a counsellor who told me that this is grief, and I need to be kind to myself. Please be kind to yourself..

 

[Dutchman]

@Dutchman , Living this strange in between life that we do I think we cling to those familiar routines that link us to our (better) past and we become very unsettled at the slightest interuption of those routines. You have had 2 major interuptions at the same time so I'm not surprised that you are at a low point at the moment. Look forward to getting back to enjoying your visits with Bridget.

You are so right. As long as I was visiting regularly, leading some form of a relationship with her, then I could just about manage. The photos of her in her room show her looking withdrawn and confused, pathetic and lonely. I just want to fold her in my arms. Not long now my love

 

[Thethirdmrsc]

@Izzy posted a lovely link to a booklet about letting go without giving up, which I am working my way through, and it’s very good.

 

[Dutchman]

@Izzy posted a lovely link to a booklet about letting go without giving up, which I am working my way through, and it’s very good.

Any chance I could have this link?

 

[Izzy]

The booklet is called Letting Go Without Giving Up. Here is the link -

Letting Go Without Giving Up

 

[Dutchman]

Thank you everyone for giving much needed support throughout the past few weeks. I think I would go under in a big way of not for this Forum. Bridget is out of isolation and we shared a meal in the sunny lounge and the first thing she said to me was “ my dad” and I do resemble him a little. Rather be called “ my Peter” but at least she was pleased to see me, if a little confused.

I really think isolating someone for 14 days is wrong. She probably thinks she’s done something wrong and why me and why are others free within the home. Everyone is fully jabbed, tested to the hilt, visitor all screened and masked. This belt and braces approach is bad enough for those who understand but for a dementia sufferer??
Peter

 

[lollyc]

The booklet is called Letting Go Without Giving Up. Here is the link -

Letting Go Without Giving Up

I have just read this, and although Mum never went into a care home, so much of it resonates. At last a leaflet that I can actually relate to.

 

[Izzy]

I have just read this, and although Mum never went into a care home, so much of it resonates. At last a leaflet that I can actually relate to.

I’m glad you found it helpful.

 

[Dutchman]

To be brutally honest I wish things were all over. I’d planned to go visit today but can’t face it. Yesterday she called me her “dad” and there’s me trying hard to develop a relationship that based on me. She hardly ever reciprocates affection and I’m left with an empty feeling of hopelessness. What do i get out of it? She has numerous people looking after her and I have just me.

I sit here wondering what I’d feel when that phone call comes to say she’s dead because, judging by her deterioration over the past 2 years, can’t be that far away ( I could be wrong)

Is it wrong, is it selfish, is it cold hearted to feel this way? It’s just the never ending day on day feeling how much I’ve lost and her not loving me as we were before dementia almost 4 years now.

If I died she still be looked after. She wouldn’t realise I’ve stopped coming. Each day without her love is so upsetting and that’s reinforced when I see her and the vacancy in her face. It’s sometimes not enough to go and keep her company pretending that there’s something there that can enrich us both.

So many mixed emotions. I love her, I get bored in her company, I get encouraged by her smile or giggle, I miss her here but know I wouldn’t cope, I think back on the years of neglect and rejection. But she’s my Bridget and I want to see her and love her for as long as she or I have got.
Bloody mess

 

[canary]

Bridget calling you "dad" seems to have thrown you, Peter.
Mum couldnt always remember my name and sometimes called me "mum" or her sisters name, but that didnt mean that she didnt know who I was. She knew that I was an important person to her and knew that I was someone who she loved, even if she couldnt quite remember the relationship.
xx

 

[Dutchman]

Bridget calling you "dad" seems to have thrown you, Peter.
Mum couldnt always remember my name and sometimes called me "mum" or her sisters name, but that didnt mean that she didnt know who I was. She knew that I was an important person to her and knew that I was someone who she loved, even if she couldnt quite remember the relationship.
xx

Hello @canary
Yes, I guess the need to be wanted by Bridget, even though I know she not able to give me the love I need, is so strong that it just clouds all my reasoning.

Her way of looking at the world is totally different to mine but that is so hard to accept. I go round and round in circles wondering about what she’s thinking and how she considers me when I visit and when I’m not there.

There is a crumb of comfort in comparing what it was like here at home when she spent her remaining months in dementia anxiety. I couldn’t have gone on. She’s very peaceful and well cared for now. Just me left with the memories and concerns

 

[Dutchman]

Hello everyone. As some of you now I’ve have recent surgery and recovering slowly. Bridget is fine after a scare of Covid.
I visit every other day but not today as I’m desperately finding excuses not to go. Too much pain, she won’t know, is it a duty now?, she’s well looked after anyway, etc, etc.

To some these are trivial things. To me visiting represents my care and concern but also my devotion to her. Yes, and also, it seems at times a bit of duty ( I put her there so I’ve an obligation to visit). I know she won’t know I’m not coming but will she not know?

It’s such a mess and mixture of conflicting emotions. I envy those who’ve got things straight in their mind and can make rational decisions and be satisfied and be at ease.

 

[canary]

Im not sure that any of us are truly satisfied and are at ease with their situation. I think we all just make it up as we go along and do what seems best at the time.
If you dont want to visit Bridget for a couple of days I really dont think she would now notice. In the advanced stages the concept of time is lost.

 

[Violet Jane]

How is your recovery going, Peter? If you are not feeling well or experiencing pain then it’s fair enough that you don’t visit Bridget for a few days. She almost certainly doesn’t have any concept of time any more and won’t notice if you don’t visit.

I’d like to challenge your statement that you ‘put’ Bridget in the home as it implies that you had a choice and took the decision lightly whereas in reality her move to the home was caused by her complex needs which could no longer be met at home. I therefore feel that your decisions around visiting should not be driven by a misplaced sense of guilt / feeling that you have forced Bridget to leave her home. The care home is the best place for her now and was when it was decided that she needed to move into residential care.

It’s natural to have a maelstrom of feelings in this situation including some that we may be reluctant to articulate.

Be kind to yourself.