Dementia’s journey

[Thethirdmrsc]

Going on from yesterday, and just when I thought I was coming out of the woods, I cried bitterly this morning after seeing diary entries for early 2017 ( I tried to keep track right through to 2019) and all I could see was one row after another. Driving licence, wanting to move, you never talk to me, you do stuff and I do nothing.

And I’m once again plagued by the thought that I was at fault being selfish and self centred. Bridget never really thought much of herself. She was always there for others. So I think I neglected her when she wanted me the most. And the tragedy is that I can’t make amends.
Peter

I can’t always look at my diaries, as it’s all about me. How I felt, what he did today, me, me, me. Not once did I stop to think about how it was for him. How frightened and scared he was, well occasionally we talked about it, but then he would do something awful, and I would forget about him again. But now that I have the time to think, I do think about him. And that’s the difference, we have time, because if they were still here, we wouldn’t.

 

[Old Flopsy]

That is so true @Thethirdmrsc - we now have time to think. Well said.

 

[Dutchman]

can you stop blaming yourself and beating yourself up by what ifs you manage the situation as you saw it and got her more help when she needed it. that doesnt sound like someone who was selfish but shows someone with a difficult job of caring

Hello @jennifer1967. I do know I shouldn’t be beating myself up and taking total blame. Dementia through mini strokes is something I couldn’t have controlled and I often wonder if Bridget’s history of smoking and being overweight were contributing factors. But I will definitely never know and too late now to make any difference.

But as a husband wanting to protect and care for her I suppose I feel I’ve let her down somehow. Many would say if they had their time again they’d do things differently and I would certainly had studied her more, shown I loved her in better ways , made her feel loved instead of taking things for granted, thinking we had all the time in the world.

I’m applying for the Companion Call scheme of the Alzheimers Society and I hope to be of help to those like me who are going through similar feelings. I hope it’ll help me as well.
Bless you
Peter

 

[jennifer1967]

Hello @jennifer1967. I do know I shouldn’t be beating myself up and taking total blame. Dementia through mini strokes is something I couldn’t have controlled and I often wonder if Bridget’s history of smoking and being overweight were contributing factors. But I will definitely never know and too late now to make any difference.

But as a husband wanting to protect and care for her I suppose I feel I’ve let her down somehow. Many would say if they had their time again they’d do things differently and I would certainly had studied her more, shown I loved her in better ways , made her feel loved instead of taking things for granted, thinking we had all the time in the world.

I’m applying for the Companion Call scheme of the Alzheimers Society and I hope to be of help to those like me who are going through similar feelings. I hope it’ll help me as well.
Bless you
Peter

wasnt criticizing but mini-strokes can happen to anyone. yes being overweight and smoking are risk factors but so are many others. at the end of the day, bridget lived and made her own choices so anything that you said to change her lifestyle might not have made any difference. my husband had mini-stroke from clot in the heart. he was overweight and had smoked previously before he gave up many years ago but there was nothing i could have done to prevent it and deal with it as it is now. good luck with companion call scheme. they will be lucky to have you

 

[Violet Jane]

@Dutchman, from all your posts it is clear that you had a very happy marriage and were a loving husband to Bridget. It is natural that you took things for granted; everyone does. The difficult behaviours associated with dementia are enormously challenging and I'm sure that you did your very best.

Could Bridget's dementia have been avoided? Possibly. There's been quite a lot said recently to the effect that what is good for the heart is good for the brain but that wasn't really talked about a few years ago. However, there are many people who have led healthy lives who develop dementia and many people who have led unhealthy lives who don't and so there is a lot of randomness about it. I think that there is no point now thinking 'what if' about what Bridget did and did not do and should and should not have done - and that applies to you too. Remember that people succumb to other diseases and no doubt their loved ones have some of the same feelings about being cheated of the years that they thought that they would have together. My father died of Heart Failure and Pancreatitis at 74 and it was a total shock for my mother and the family as my father was only diagnosed with Heart Failure less than six months earlier and I at least had no inkling that his remaining life would be so short.

Sorry, I've taken this thread a bit off track...

 

[Dutchman]

Hi. Me again
I was hit by a wave of loneliness yesterday even though I’d been in company all morning. One scrape of comfort I suppose is that when she was here we never saw much of anyone else anyway. Towards the end I was consumed by keeping a lid on the situation. So it got me thinking about relationships and how couples interact with their world.

We did very little with regard to socialising. While we had each other in an easy relationship we never felt a lack of company. Is it a lazy way of living? Sure, we both had interests and before that, jobs. But I never actively sought others company because, for me, Bridget was enough and for her, me.

When that’s taken away there’s a void. No company, no sharing of memories, no chat, planning and all the rest that makes up the day.
I have diversions now, not replacements. Keep busy, go for a walk, join something, do something. All sensible advice until the heartache and longing roots you to a chair and you just miss someone in the emptiness of your home.
Sorry, gone on a bit.

 

[Dutchman]

Hi. Me again
I was hit by a wave of loneliness yesterday even though I’d been in company all morning. One scrape of comfort I suppose is that when she was here we never saw much of anyone else anyway. Towards the end I was consumed by keeping a lid on the situation. So it got me thinking about relationships and how couples interact with their world.

We did very little with regard to socialising. While we had each other in an easy relationship we never felt a lack of company. Is it a lazy way of living? Sure, we both had interests and before that, jobs. But I never actively sought others company because, for me, Bridget was enough and for her, me.

When that’s taken away there’s a void. No company, no sharing of memories, no chat, planning and all the rest that makes up the day.
I have diversions now, not replacements. Keep busy, go for a walk, join something, do something. All sensible advice until the heartache and longing roots you to a chair and you just miss someone in the emptiness of your home.
Sorry, gone on a bit

 

[Grannie G]

It`s all part and parcel of adjusting to single life @Dutchman. It`s difficult, to say the least and it`s never ending. No one can do it for us and everyone faces it when one of a couple is left alone.

You are not yet completely alone. Make the most of what you have of your wife while you can. Believe me it`s much more difficult when there is not even anyone to visit.

 

[Thethirdmrsc]

Roddy had a garage for 50yrs and work was his hobby, so when we went on holiday we didn’t want to socialise, we just wanted to be together. Then we bought a camper van, because we had dogs, and it was a great way of being together, without others as We weren’t great on making holiday friends, we just had each other, and of course our families. I had my sewing, and reading and he had work, until he didn’t, and that was his demise.

 

[Dutchman]

Hi @Thethirdmrsc . From what you all have said it seems that it’s quite a normal thing to just want/ need each other in a comfortable and loving way. I think sometimes we get the idea that other couples have numerous friends and a large social life. In my experience those I know are just like us - got each other with a few friends.

It’s a balance I suppose knowing that the one you love is always there for you and whatever social life you do have is there to enrich.
Peter

 

[Dutchman]

I’ve just returned from seeing Bridget and to help her with her meal. As usual on a Sunday the home is scratching round for staff so my visit helps in a small way. And they say it’s appreciated and today
( half jokingly I think) they asked if I wanted a job there as they believed I’d make a good carer.

But I go for Bridget and would do anything for her. To do the same for others, as a job, well, it’s not the same, but I do feel for the staff being so overstretched at times, so for me there’s an element of responsibility, may it be misplaced.

I know it shouldn’t be any responsibility of mine concerning staffing levels but now I know the staff so well I’m so not detached from the problem as, say, a relative who just visits now and again.

Is this a common dilemma as relatives get more involved in the home and become more friendly with the staff? Would it become uncomfortable to see Bridget more if I worked there, for instance, say, one day a week.
Something else to mess with my mind.

 

[Thethirdmrsc]

It’s an odd thing becoming attached to the staff and other residents. The home had a jubilee party on Friday and I was there from 11 till about 4. Myself and a residents daughter got presented with flowers because I had sewn all the bunting, and she did table flowers. But I did it voluntarily and I had the fabric and stuff. I find I can’t not get involved as it’s Roddys home, and these people are doing the most intimate caring for him, so I feel it’s a bit of giving back. I’m already starting to worry about a time when it all stops. We also have a family group and we meet every month, although out of the 27 residents, there are a hard core of 4 of us!

 

[Dutchman]

Thanks for replying @Thethirdmrsc

The guilt just piles on, reasonable or unreasonable. When I get there Bridget’s sitting next to a lovely lady who says Bridget’s been looking forward to me coming ( this could be pure fantasy of course) but Bridget certainly perks up when I arrive.

Now I feel I’m letting her down by not going more often as I’m currently going every other day. But then I’m told by staff that I worry too much!
I too worry about the time when I no longer have to go. Will it be a release or the beginning of heartache all over again - another long period of grief? My life revolves around my visits and I worry that when that’s gone I’ll be destitute again, empty of purpose.

We muddle through don’t we, somehow waking up to another day that could bring sorrow or not.

 

[Dutchman]

In respect of visiting it’s so difficult to know what to do. Everyone says it’s what you want but that’s not at all easy. Part of me wants to see Bridget more but would that then turn into a duty, a emotional burden.

If I spent more time at the home would the visit become different in quality. At the moment visiting alternate days means there’s a little special quality to it. Would I lose that?

I guess this is only going to change once Bridget becomes worse, she no longer recognises or appreciates my visit and, of course, when she passes there’s no need.

Only when you love and miss someone do you have these dilemmas. But I’m glad I’ve loved her and love her. The grief is the price we pay.
Peter

 

[Ekaterina]

Thank you all for your comforting posts. I've been particularly low today while my husband is at Daycare - so I've had time to think! The decision for going into a home hasn't been confronted yet but I may have to consider this soon. We have recently moved him downstairs to a room in his own but with me, family, carers, popping in and out. However, I miss him at night as this is probably one of the last connections we had; sharing a bed. Goodness knows how I might feel should he need to go into a home soon.
And there's the missing someone sitting right next to you, who seems to be a shell, who seems not to be 'there'. I think the grieving, and sense of loss, starts the moment we realise we are losing them whether they are at home or in a care home. It's a lonely journey for us both, however many kind people are around. One thing I try to think of is the love we had/have for each other, even if only one of us is conscious of it. That love is real and tangible. It won't go away any more than the grief or loneliness will, but by sharing that tangible love with others, which is what you are all doing in this forum, is wonderful. Thank you. X

 

[CAL Y]

Thank you all for your comforting posts. I've been particularly low today while my husband is at Daycare - so I've had time to think! The decision for going into a home hasn't been confronted yet but I may have to consider this soon. We have recently moved him downstairs to a room in his own but with me, family, carers, popping in and out. However, I miss him at night as this is probably one of the last connections we had; sharing a bed. Goodness knows how I might feel should he need to go into a home soon.
And there's the missing someone sitting right next to you, who seems to be a shell, who seems not to be 'there'. I think the grieving, and sense of loss, starts the moment we realise we are losing them whether they are at home or in a care home. It's a lonely journey for us both, however many kind people are around. One thing I try to think of is the love we had/have for each other, even if only one of us is conscious of it. That love is real and tangible. It won't go away any more than the grief or loneliness will, but by sharing that tangible love with others, which is what you are all doing in this forum, is wonderful. Thank you. X

@ Ekaterina. You are so right, the grieving starts with diagnosis and it is a lonely journey.
I think the saying goes…..it’s not about having someone to do something with….it’s about having someone to do nothing with.
I think I miss the comfortable silences more than having someone to chat to.

 

[Dutchman]

I wholeheartedly agree. The moment we received the diagnosis at the hospital then I knew our relationship had changed for ever.

I think sometimes that I could accept it more if Bridget had damaged her brain because of an accident ( is this weird?) instead of the random attack of TIA’s. Dementia is cruel, evil and not fair.
I too miss the silence that we shared because we knew each other so well and were secure enough not to make constant efforts to show love. Love was a given and now I retain the loving memories and she struggles to make herself understood. Oh how I wish I could know what she thinks and somehow get inside her mind to appreciate her experience of the day.
All this makes us lonely either when they’re still at home on the settee or in care.

 

[Dutchman]

Thank you all for your comforting posts. I've been particularly low today while my husband is at Daycare - so I've had time to think! The decision for going into a home hasn't been confronted yet but I may have to consider this soon. We have recently moved him downstairs to a room in his own but with me, family, carers, popping in and out. However, I miss him at night as this is probably one of the last connections we had; sharing a bed. Goodness knows how I might feel should he need to go into a home soon.
And there's the missing someone sitting right next to you, who seems to be a shell, who seems not to be 'there'. I think the grieving, and sense of loss, starts the moment we realise we are losing them whether they are at home or in a care home. It's a lonely journey for us both, however many kind people are around. One thing I try to think of is the love we had/have for each other, even if only one of us is conscious of it. That love is real and tangible. It won't go away any more than the grief or loneliness will, but by sharing that tangible love with others, which is what you are all doing in this forum, is wonderful. Thank you. X

Hello @Ekaterina

Really sorry to hear what you’re going through. Many of us here have been more or less exactly where you are now and can almost understand what you are feeling. We’re all different but love is love.
Practically I would say that it wouldn’t hurt to put in place some support on the eventual day when your love one leaves for care. I know it’s hard but believe me it’s even harder when you’ve no one ( like I had) and your world is falling apart. You need someone with you during those early days.
Ask any questions here practical or intimate as we’ve all had our corners knocked off and seen or heard it all before and can help get you through this much more easily
Peter

 

[Dutchman]

I want to share, for my own sake perhaps, the moment my life changed forever.

Sure, life was changing dramatically all through the dark days and months of Bridget’s dementia behaviour, but she was still here, part of my life at home.

No, the instance she was lead away by care home staff, down the garden into their car and driven away, that’s when my life turned upside down and I was alone for the first time in my life. I cried out load “what about me”. I’ve never felt so alone in my whole life as I knew she would never, after 20 years, be in this house again.

And I still feel I drove her away somehow with my selfish attitude. I did many things that were self centred. There’s still a part of me that feels I deserve all this. You can tell me it’s the dementia but I need something or someone to blame. I suppose I feel the easiest thing is to blame myself.

And when I see her she seems so
“unaffected “ by it all. She smiles, laughing even, quite matter of fact, while I’m left with the lingering doubt of guilt.

Anyway, morning thoughts that I needed to air.
Peter

 

[Thethirdmrsc]

I want to share, for my own sake perhaps, the moment my life changed forever.

Sure, life was changing dramatically all through the dark days and months of Bridget’s dementia behaviour, but she was still here, part of my life at home.

No, the instance she was lead away by care home staff, down the garden into their car and driven away, that’s when my life turned upside down and I was alone for the first time in my life. I cried out load “what about me”. I’ve never felt so alone in my whole life as I knew she would never, after 20 years, be in this house again.

And I still feel I drove her away somehow with my selfish attitude. I did many things that were self centred. There’s still a part of me that feels I deserve all this. You can tell me it’s the dementia but I need something or someone to blame. I suppose I feel the easiest thing is to blame myself.

And when I see her she seems so
“unaffected “ by it all. She smiles, laughing even, quite matter of fact, while I’m left with the lingering doubt of guilt.

Anyway, morning thoughts that I needed to air.
Peter

Like living with dementia, you don’t know until it happens to you, well, the same goes for the care home. I would see your posts, but they didn’t apply to me, or so I thought, but really we are only a crisis away from it. Now it’s a different story, and the guilt is such a weight, that I couldn’t cope, that I chose my mental health over his, and don’t start me on the bitterness I feel, for having my life taken away, to have to work to survive, no husband to share the burden of a health scare. I cry at the drop of a hat now, and dementia is really my whole world. What will I do when it isn’t? sometimes I want to shout at him, what about me? But at the moment, it’s still all about him, and he just doesn’t understand. I told him I had a breast lump, and he said I do too much running around! Turns out it was a blocked gland, but I didn’t want to belong to 2 clubs. The dementia club is enough for now.