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Dementia’s journey

Dutchman

Registered User
May 26, 2017
710
Devon
Went to the home this afternoon and took flowers, fruit, more pull ups and a card.

As usual they went to find Bridget to bring her to the door to see me. We’ve mentioned the little things that mean a lot , well she did something for the first time.

I said I love you and she said it back , then mouthed kisses at each other , then, after I said I can’t come in, she shrugged her shoulders and looked at me and made a disappointment face. For a person devoid of most communication skills this body language was unexpected and, when I went back to the car, got me crying again.

Reading a lot of posts I ask “where does all our energy go”. For all those grieving in some way
for our love ones normal energy levels vary enormously . I came home this afternoon shattered and for us all it’s easy to appreciate how our emotions drain us so all we want to do is sleep. I have to force myself to get up and move around.

Peter
 

Dutchman

Registered User
May 26, 2017
710
Devon
Why is it that when you're convinced you’ve got your mind sorted the slightest sense of something sets you off again Into misery?

It’s very quiet and I’m feeling very lonely. I once thought that being lonely and feeling depressed only happened to other people. It’s a frightening situation to be in because I’ve lost support from my wife who knew me inside out, warts and all. We were so close and now we’re drifting apart.

I phone the home nearly every day and they just says she’s okay but I phone because I feel it’s some form of contact. Her recent photos from the home show someone who looks helpless and vunerable and I just need to hug her and say everything will be alright.

But, of course, because of lockdown, I can’t. I come on here to tell you my feelings and that helps but I can’t resist the temptation to sleep away the day, watch stupid movies and beat myself up by trying to relive in my mind the happy days.

I’m sitting in a darkened front room which seems to match my mood, it’s nearly 8 o’clock at night and I can’t motivate myself to even move.

I somehow know that if I could really accept that she’s better off where she is, if I was able to not feel so sorry for myself then I might achieve some peace.

God bless and keep well

Peter
 
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Stacey sue

Registered User
Jan 24, 2020
52
Had an email from the CH today,saying they are going to organise visits in a couple of weeks.I will have to wear PPE and mask and it will be a time slot in the garden and of course social distancing. This will be the first time to see Dave in 12 weeks. He won’t know why I can’t touch him ? This is so cruel, I don’t know if I can do it?? As much as I want to see him,I will be an emotional wreck?? what do I do for the best?
SSue..
 

Dutchman

Registered User
May 26, 2017
710
Devon
Had an email from the CH today,saying they are going to organise visits in a couple of weeks.I will have to wear PPE and mask and it will be a time slot in the garden and of course social distancing. This will be the first time to see Dave in 12 weeks. He won’t know why I can’t touch him ? This is so cruel, I don’t know if I can do it?? As much as I want to see him,I will be an emotional wreck?? what do I do for the best?
SSue..
Hi Sue. The care home offered the same to me but I’ve declined because, as you say, it would be too upsetting and Bridget wouldn’t understand. We just see each other through the window.

I calm myself down sometimes by believing that Bridget is in the best place but deep down it’s my job to care for her which I cannot do now.
I’m here for you and you can open your heart if it helps. Virtual hug. Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,517
Kent
I doubt I would have visited my husband wearing full PPE or even a face covering. I`m sire it would have confused him too much.
 

Stacey sue

Registered User
Jan 24, 2020
52
Thankyou both, I am upset just thinking about it,I don’t want to upset him and it will if he see‘s me upset.I like to think that it would and he knows who I am? I like you Peter sometimes think I could look after him at home? I think he is happy in the CH ? Who knows? SSue.
 

Dutchman

Registered User
May 26, 2017
710
Devon
I tend to remember the bad times here when everything was confused and random, never knowing what Bridget would do next. In that way I can just about come to terms with her being looked after by the professionals.

Every day throws up fresh emotions that either I can cope with or find myself in a sobbing heap. I try to convince myself that when I see her and she smiles at least that’s an indication that she could be content.

I really do feel for you Sue and, although everyone’s experience of this dementia journey is different, the common thread is that we are heartbroken and desperately lonely for our loved ones. I’ve said this before but if , by some miracle, I could swop places with Bridget I’d do it in a heartbeat. But, then, of course, she’d be going through what we’re going through. Can’t win.

keep posting . I’m always here

peter
 

Stacey sue

Registered User
Jan 24, 2020
52
Yes I agree with all that you have said,I don’t think Dave would cope if this was reversed . Have just spoken to him,well I do all the talking,I am doing it for me I know that he has forgotten instantly. Some days are better than others and this long goodbye as they call it is torture. Thankyou for your support.SSue. x
 

Helly68

Registered User
Mar 12, 2018
654
Having had an "outdoor distanced" visit with my Mum last week, for those who haven't had them, this is what I would say. Mummy is late stage mixed dementia.

The staff were very good in that they brought her out in a wheelchair, to sit at an outside table with me on the other side a safe distance away. Mummy was annoyed as I think she doesnt often go outside, she found it cold so we stopped after about 15 minutes, which was pretty good going.
Mummy wasn't upset at not being able to touch me, she was upset about being bundled out into thecold, but eventually got over this. She does like to hug but I think it took her a while to realise I was there and although she smiled at me, I am not sure that she recognised me.
I wore a mask to start with, but she couldnt hear me with it on so the carer who stayed with her said I could take it off as I was 2 metres away. She was then better able to make out what I was saying.

I think with PWD ion the later stages, it is a difficult decision about safe visiting. Mummy cannot walk or transfer unaided, so I wasn't worried about her trying to grab at me. I think I may go again, but only if the weather gets a bit better as it seemed rather mean to get her outside in the cold. She had blankets but kept taking them off, such is the nature of dementia.
 

lemonbalm

Registered User
May 21, 2018
410
Having had an "outdoor distanced" visit with my Mum last week, for those who haven't had them, this is what I would say. Mummy is late stage mixed dementia.

The staff were very good in that they brought her out in a wheelchair, to sit at an outside table with me on the other side a safe distance away. Mummy was annoyed as I think she doesnt often go outside, she found it cold so we stopped after about 15 minutes, which was pretty good going.
Mummy wasn't upset at not being able to touch me, she was upset about being bundled out into thecold, but eventually got over this. She does like to hug but I think it took her a while to realise I was there and although she smiled at me, I am not sure that she recognised me.
I wore a mask to start with, but she couldnt hear me with it on so the carer who stayed with her said I could take it off as I was 2 metres away. She was then better able to make out what I was saying.

I think with PWD ion the later stages, it is a difficult decision about safe visiting. Mummy cannot walk or transfer unaided, so I wasn't worried about her trying to grab at me. I think I may go again, but only if the weather gets a bit better as it seemed rather mean to get her outside in the cold. She had blankets but kept taking them off, such is the nature of dementia.
Thanks for posting this. I hope you weren't upset by your visit. My mum's care home is apparently soon to start distance visiting in their little courtyard and I have been very anxious about it. Mum has advanced vascular dementia and "normal" visits are pretty risky. Even getting her into the courtyard is likely to upset her. Knowing some of the other residents, they will try to come out to join in and they can be a feisty lot. Add the safe distance rule and no contact to that and I fear it could be a bit of a disaster.

On the other hand, I don't want mum to be upset by other residents getting visitors and her not. It's tricky but reading your post was useful. Thank you.
 

Helly68

Registered User
Mar 12, 2018
654
No, not really upset by it, though her dementia progresses, as of course it will, and that is depressing in itself.

I think I need to look at the weather this week and consult with the care staff. I want to see her but I don't feel it is worth making her sit in the cold so perhaps I will wait until the weather is better. It is, as so many are, a tough choice. However, I know I am lucky as she doesn't have COVID and even in a good home, that could so easily happen.
 

Dutchman

Registered User
May 26, 2017
710
Devon
It’s 11.05am and I’ve only just got up. Couldn’t see much point in the day really, still dont.

Im going to see Bridget about 13.30 and take her some flowers and treats. That’s all I can do in lockdown. As the day of my surgery gets nearer I’m getting more anxious and it’s now that I miss her help and support. She would of looked after everything and made sure I had little stress.

Like some of you I feel I’m just drifting day to day and as the day progresses I look forward to sleep, several hours of sleep and, I hope, distracting dreams.

Some could say it’s wasting your life but they need to be in our shoes before they make light of the misery and it’s consequences.

im off to the supermarket soon. At least that’s something different.

Peter
 

Dutchman

Registered User
May 26, 2017
710
Devon
I just come back from seeing Bridget and it was obvious to me what would happen. She came to the door window and she always looks pleased to see me and the flowers.

She just looked at me then said ‘I don’t know,‘ with tears in my eyes I said ‘I love you so much’, and after a little while, when I said goodbye she says‘ bye darling’.

I went back to the car and just cried . I’m useless at this. I drive to the home full of anxiety, suffer when I see her and again when I drive away. I’ve only just calmed down

I’ve really too much on my plate. Because not only do I have the stress of me and Bridget but I’ve got the Care home finances to arrange and I’ve got major surgery in 2 weeks time.

This is when we should have our loved ones around for support and comfort.
I just don’t know what to do to lessen the grief of all of this. I do know that the forum is where no one will judge you as we go through some form of misery.
Peter
 

kindred

Registered User
Apr 8, 2018
2,458
I just come back from seeing Bridget and it was obvious to me what would happen. She came to the door window and she always looks pleased to see me and the flowers.

She just looked at me then said ‘I don’t know,‘ with tears in my eyes I said ‘I love you so much’, and after a little while, when I said goodbye she says‘ bye darling’.

I went back to the car and just cried . I’m useless at this. I drive to the home full of anxiety, suffer when I see her and again when I drive away. I’ve only just calmed down

I’ve really too much on my plate. Because not only do I have the stress of me and Bridget but I’ve got the Care home finances to arrange and I’ve got major surgery in 2 weeks time.

This is when we should have our loved ones around for support and comfort.
I just don’t know what to do to lessen the grief of all of this. I do know that the forum is where no one will judge you as we go through some form of misery.
Peter
Peter I know, this is overwhelming. Is there a finance manager or general manager at the home who can help you to arrange the finances? But I know the major thing is going through the operation without the love, support and practical help from Bridget. Can one of your children help? Last year I had to have a hip replacement and thank God, my son moved in for two weeks to help me recover. I think this is a time for children to step up, please don’t hold back on that.
You are far from useless, you are enduring a terrible situation.
I wish I could help lessen your grief. I remember reading your posts from way back because I was blogging about Keith in the nursing home at the time and I remember thinking then, this is impossible for this man to manage. And that was when Bridget was at home with you. She is best off with a team of people, she really is, but I do know the toll on you. With love Kindred
 

Stacey sue

Registered User
Jan 24, 2020
52
These are hard times, you must look after yourself , hopefully after your surgery this virus will be less and restrictions lifted. I find I am a mess when I speak to Dave on the phone, and I am better when I don’t ! He doesn’t miss me like I miss him,I am sure it is like that for you and Bridget. Stay strong we will get through this , best wishes SSue.
 

Dutchman

Registered User
May 26, 2017
710
Devon
its annoying how the brain works to our disadvantage. I go to the care home knowing full well that I’m going to find it upsetting, but I go anyway. It’s a mixture of duty, guilt if I don’t go, wanting to actually see Bridget and a hope that she will be glad to see me. She won’t have the after effect of longing and pain. Like you said, she won’t remember and for that I suppose I should be satisfied.

I’m getting to the point where it seems that the only comfort comes from others telling me that in our dementia journey whatever I feel, whatever I’ve done or now do is justified. In various posts from you all you’ve told me that because of everything we go through and whatever we’ve had to deal with we’ve done extraordinary jobs.

Why wouldn’t we feel the way we do and react the way we do, because the grief and the anticipatory grief Is sometimes too much for the human mind to cope with.

Holding each other virtually on the forum and all the support we can give each other is mostly all we can do to keep going.

God bless

Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,517
Kent
It has been said the effects of caring for a person with dementia is equivalent to PTSD. It`s certainly life changing.
 

Dutchman

Registered User
May 26, 2017
710
Devon
I spoke to the care home manager this morning as I wont be going to visit today. Phoning the home is one way of remaining connected with Bridget.

i asked, in all honesty, if Bridget is content in the home. I have periods where I think she’s unhappy and upset where she is. No, the home says, Bridget is content and seems happy enough in her own little world. So I should be content also with this news. But I’m not.

its almost like she’s now left me for someone else and, apart from the recognition when she does see me, she’s becoming more and more distant from me. How could it be any different when Im only there for a few minutes talking through the window a few times a week.

And this distancing worries me because I don’t want it to happen and, perversely, I don’t want to get used to being apart but I know getting used to it is a way towards some peace. Getting used to it just seems another betrayal on my part added to all the underhanded stuff I had to do when Bridget was here.

Its really difficult to describe feelings . Others have been better at it than me but my attempts give me some way of making sense of it all.

Peter
 

Dutchman

Registered User
May 26, 2017
710
Devon
I visited the home this morning and I was greeted with a smile. I guess Bridget's content if a smile is anything to go by.

You know, I try very hard to put myself back into those times when poor Bridget was in the grip of her dementia and we got through the day as best we could. She couldn’t help any of her behaviour but I didn’t have the sensitivity to realise it was the dementia and to make allowances. But when you’re in it 24/7, made to look for her husband in hospitals, in streets, in different rooms, and then only wanting to go home, screaming and shouting, something inside me broke.

We don’t get a second chance at this and I don’t know if I would react differently anyway.

Im just sitting on the sofa now trying to remember how bad it was and square that with the finality of placing Bridget in the home. Going back things started to be wrong around 2014 but we made adjustments and allowances for the word finding, the jealousy, temper, not understanding time and much more as time progressed.

I only try this remembering to give reason to how we are now. Bridget’s a pussy cat now compared what she was like back in summer 2019 and I’m grateful for the homes hard work in getting her settled. She almost a model resident.

Peter
 

Banjomansmate

Registered User
Jan 13, 2019
1,947
Dorset
When we are in the middle of it all we cope as best we can, only realising later what was happening or what we could have done differently. There are several things that, after The Banjoman died, I could take time to think about and wonder why it didn’t “click” that something was wrong but in all the hassle it just didn’t register enough in my brain.
i still don’t understand or have answers to some things but I console myself with the thought that I looked after him as well as and probably better than most of his family would have managed and that is all I can expect of myself..