Dementia’s journey

[Dutchman]

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.

I get comfort knowing Bridget is cared for and cared for by staff who are there to address every problem. One can make a phone call while another does her personal care while another can clean her room. On my own it would be an impossible job. And that’s if she’s compliant which at times she isn’t.

I think when it comes to communication we have to look for other signs as lack of speech makes it difficult to interpret what D feels. I’ve a feeling that love ones with dementia live for no more than the few hours around them. Bridget doesn’t remember yesterday but she’ll remember I’m someone special ( not her husband). It’s repetition I suppose that eventually makes its mark in the brain.

I would hope that D doesn’t miss you as that would add to her anxiety ( if she is anxious). I know you want to be missed as an indication of D’s love for you but I’d hate it if Bridget was upset because I’d gone home. Better to be forgotten until the next time when you can spend your precious time together. I believe strongly that, although she can’t voice it, she will appreciate you going. Just keep at it. All we can do is just keeping on.

 

[kindred]

I get comfort knowing Bridget is cared for and cared for by staff who are there to address every problem. One can make a phone call while another does her personal care while another can clean her room. On my own it would be an impossible job. And that’s if she’s compliant which at times she isn’t.

I think when it comes to communication we have to look for other signs as lack of speech makes it difficult to interpret what D feels. I’ve a feeling that love ones with dementia live for no more than the few hours around them. Bridget doesn’t remember yesterday but she’ll remember I’m someone special ( not her husband). It’s repetition I suppose that eventually makes its mark in the brain.

I would hope that D doesn’t miss you as that would add to her anxiety ( if she is anxious). I know you want to be missed as an indication of D’s love for you but I’d hate it if Bridget was upset because I’d gone home. Better to be forgotten until the next time when you can spend your precious time together. I believe strongly that, although she can’t voice it, she will appreciate you going. Just keep at it. All we can do is just keeping on.

You are very wise Peter. And the concept of husband wife is a higher order cognitive one and so fast to go.
When Keith was in the nursing home, the staff tried to emphasise the relationship, always saying here’s your WIFE, Keith. One day he replied, I know, I wish I could marry her ..
Warmest, kindred

 

[Old Flopsy]

' 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?'

That is just how I felt @Dutchman - the empty seat on the comfortable sofa where OH sat for many years, leaving a hole in my heart. His favourite mug which he used daily for coffee or tea, now sat redundant in the kitchen, his coats hung up in the hallway never to be used again- I'm afraid I had to put these constant reminders out of sight and try to concentrate on bringing some joy to him at my next visit. But it's all over now..

 

[Dutchman]

Many say I surely must get some comfort from knowing that Bridget is looked after well at her home. Of course I do: some.

I’m free to do what I like today. No visit, a day off to recharge the battery. But the day’s flat and I’m lacking in any motivation.

When I’m like this I think back to when Bridget was at her worse here, when all we did was to go out for breakfast, come back and sit indoors and I’d be anxious about what a new day with dementia would bring. Usually bizarre behaviour from a woman refusing to recognise me.

So my life is more straightforward now but empty. I read books on loss of a loved one and how the author feels and handles it day on day but it’s seems to me that in the end it’s just people going through what we’re going through as best they can. There’s no magic formula to lessen this grief.

So I’d better get up ( 10.00) and do something even if it’s breakfast and shower.
Peter❤️

 

[Dutchman]

Oh dear, Bridget’s home has Covid. No inside visits for the time being so all the regular visits I’ve made building up our fragile relationship will be threatened. I’ll go tomorrow and wave through the window and pass through some flowers. It’s almost back to 2020. At least they’re all boosted this time.

 

[Dutchman]

So, I went to the home and have just arrived back home and I’m sitting in the car.
I couldn’t go in as they’re in Covid lockdown pending flow results.

So I took a lovely bunch of flowers and she came to the door and promptly blanked me, raised her eyebrows and walked off with another resident. I bother because I love her but today cold reception has thrown me. It’s all one sided.

Where do I get comfort from? I’ve no one at home to moan with, to reassure me it’s just the dementia and I shouldn’t take it personally but I do, very much so. No wonder I take to retail therapy and spending time trying to make sense of these complex emotions. No wonder I look at too many box sets and look forward to bed and coziness and reading a escapist novel.

I wish I hated her. I wish she’d done something unforgivable in the past so I didn’t want to visit her. But she always loved me and dementia destroyed all that and I’m trying to keep going the love we had on my own.

 

[Andy54]

Hello Peter, I had the call from D's home this morning to say they were now in full lockdown. I have a similar problem as you with visits, they rely on being able to be physically close to D, to sit with her and hold her hand as there is effectively no meaningful verbal communication between us. If there is a glass door separating us it is as though I don't exist. As if holding onto the last threads of our relationship wasn't difficult enough.

 

[Dutchman]

Hi Andy. Looks like you and me have very similar problems and the consequences of being restricted from our wives.
I’ve calmed down a bit now. To be honest I had to phone Samaritans and I spoke to a really nice woman who talked me reassuringly about feeling like I do.

If it’s any help she asked me to remember that I’m going through really complex emotions ( like you) and nothing’s straightforward which is made worse by Covid. We don’t have anyone at home to moan to, to reassure us, make a cuppa and generally bolster us up. Comfort, that’s what we need and for us it’s in short supply. She reminded me that I have to be kind to myself. That’s difficult. Don’t feel guilty. Equally difficult.
Anyway, take care . Keep posting

 

[Andy54]

Well it appears that several residents on D's floor have tested positive for Covid. Whilst I could theoretically arrange to visit as an essential caregiver, after a conversation with the manager this morning I have decided to defer and see what next week's test results bring. I feel that in the circumstances it's probably better if the home doesn't have the additional problem of dealing with visits that aren't absolutely essential, after all the reality is that any visits that I make are more for my benefit. Here's hoping for better news next week.

 

[Dutchman]

I agree with your reasoning. Fortunately none of Bridget’s home residents have Covid and I’ve just had a phone call saying that as I’m classed as a essential cater and have regular PCR tests I can do inside visits. So I’m off soon to see her.
Next week I go in for a hernia operation and my visiting opportunities will be restricted. And I won’t be able to drive so I’ll need to rely on a bus. So I’m going to visit as much as I can to compensate.
Fingers crossed for better news and my prayers are for you, your wife and her home❤️

 

[Jaded'n'faded]

Peter, will your family be looking after you next week, after your op?

I have no idea what the recovery time is for a hernia - I assume 'it depends'! But I hope your family will rally round.

 

[Andy54]

I agree with your reasoning. Fortunately none of Bridget’s home residents have Covid and I’ve just had a phone call saying that as I’m classed as a essential cater and have regular PCR tests I can do inside visits. So I’m off soon to see her.
Next week I go in for a hernia operation and my visiting opportunities will be restricted. And I won’t be able to drive so I’ll need to rely on a bus. So I’m going to visit as much as I can to compensate.
Fingers crossed for better news and my prayers are for you, your wife and her home❤️

Thank you for your kind thoughts. I wish you a speedy recovery from your op. I had one done six years ago, the first year after D's diagnosis. I was still working at the time (mainly
desk job) and I returned to work after 2 weeks, albeit with instructions to take things easy. Fortunately I had very supportive colleagues at the time.
Best wishes Andy

 

[Dutchman]

Thanks@Jaded

Peter, will your family be looking after you next week, after your op?

I have no idea what the recovery time is for a hernia - I assume 'it depends'! But I hope your family will rally round.

thanks to you and @Andy54 for your thoughts. My daughter is collecting me and I hope I won’t be out of action too long.

 

[blackmortimer]

So, I went to the home and have just arrived back home and I’m sitting in the car.
I couldn’t go in as they’re in Covid lockdown pending flow results.

So I took a lovely bunch of flowers and she came to the door and promptly blanked me, raised her eyebrows and walked off with another resident. I bother because I love her but today cold reception has thrown me. It’s all one sided.

Where do I get comfort from? I’ve no one at home to moan with, to reassure me it’s just the dementia and I shouldn’t take it personally but I do, very much so. No wonder I take to retail therapy and spending time trying to make sense of these complex emotions. No wonder I look at too many box sets and look forward to bed and coziness and reading a escapist novel.

I wish I hated her. I wish she’d done something unforgivable in the past so I didn’t want to visit her. But she always loved me and dementia destroyed all that and I’m trying to keep going the love we had on my own.

I know it's probably of little comfort, but I encountered the same sort of thing with Margaret. For example last Christmas Eve (2020) I went to the home with a Christmas present and she wouldn't even come to the door but just frowned from a distance and went off. Bur I've learned since how the mind can distort reality and you really have to take it personally. Bridget is in another world, one created by her mind and you can't reach in there. All you can do is keep on loving her and be thankful that she's alive and well cared for. For all the rebuffs and heart breaks I had when Margaret was in the nursing home, now that she's gone I miss her terribly sitting here surrounded by her things -things that she made or chose every one with its own memory, it's own story. And be aware that there are people here who care about you and understand what you're going through. Take the opportunity to look after yourself and your own health. I didn't and am now paying the price! And on that sombre note I'll wish you and everyone a happy New Year and hope that your operation goes well n- an excuse fo pampering yourself, perhaps? God bless.

 

[Dutchman]

Hello @blackmortimer. Good to hear from you.
You’re so right in what you say about being thankful for what I’ve got left. Bridget is so well looked after.

Example: while I was feeding her she became troubled and I know the signs that she needed to visit the bathroom quickly. The staff were busy so I cleaned and redressed her myself. It wasn’t easy as she’s not that compliant but I see it as a privilege to care for her in a small way. But to do this every day I know I wouldn’t last long. What is very telling is that she’s aware she needs to go, is troubled that she isn’t in control, and feels uncomfortable being led to the toilet and then undressed and given this care. It’s all so sad.
Without this Forum and the ability to tell it like it is well, I don’t know what I would have done.
God bless

 

[Dutchman]

Bridge has tested positive (pcr) ( no symptoms) and she will be in isolation until the second one shows negative in a few days. I’ve been told I could visit but only in her room with full kit but I’m isolating anyway so that decision has been taken out of my hands. Just feel sorry for her being in isolation.

Just shows how delicate the whole situation is.

 

[Andy54]

Hello Peter, once again I seem to be just a few steps behind you on this journey, Deb's recent PCR test has come back positive, she doesn't at present seem to have any obvious symptoms and I'm told she is eating and drinking OK. I'm surprised that you were told you could visit, I thought that this was the one situation when even essential caregivers weren't allowed in. Let's hope we can soon get back to our regular visiting routine.
Regards Andy.

 

[Dutchman]

Yes I was surprised too. Said they’d treat me like a member of staff. But it doesn’t matter as I’m not allowed to mix anyway till after my operation on Wednesday. After that I’ll be more free.
Cheers. Peter

 

[Grannie G]

I’m sorry to hear Bridget has tested positive @Dutchman but relieved she doesn’t have serious symptoms. That’s how it seems with this variant although I still wouldn’t take a risk.

Wishing you well for Wednesday

 

[Violet Jane]

I hope that the hernia repair goes well on Wednesday, Peter. Please make sure that you follow the surgeon’s advice about what you should and should not do afterwards so that you make a swift recovery. Be aware that you might have a problem with constipation afterwards (my husband did) and so get stocked up with laxatives!