Dementia’s journey

[Dutchman]

Cheers @blackmortimer and @jennifer1967
cracked pubic bone which isn’t fixable apart from time. Must get walking as much as possible so no lying in bed for long periods

 

[update2020]

really sorry to hear this @Dutchman - hope she is feeling more comfortable soon.

 

[jennifer1967]

Cheers @blackmortimer and @jennifer1967
cracked pubic bone which isn’t fixable apart from time. Must get walking as much as possible so no lying in bed for long periods

really sorry to hear that ouch! dont run yourself ragged. you will be having a few walks together

 

[Dutchman]

So. The upshot of yesterday’s drama of Bridget having her X-ray and it being determined that she has broken her pubic rami, is that she needs a combination of rest and recuperation and early walking to ensure a successful outcome to her recovery.

I got back home at 11.30 last night after spending 6 hours in the hospital. God I’m tired!

My concerns are the ability of the home to include in her care plan measures to regularly walk her and not just leave her in bed. It all takes extra staff and how do I know Bridget is adequately treated for this? Do I also consider going in myself regularly to assist with this?

Anyway I’m going to talk to staff this morning to see what can be achieved.

I also wonder what would’ve happened if i couldn’t have been available to go to the hospital ( me being dead or a very long way away). Would they have just left her on her own. Can’t see them letting staff accompany residents as this would leave the home short. What’s the usual protocol for this?

Anyway it’s early Sunday and I’m worried already.

peterx

 

[kindred]

So. The upshot of yesterday’s drama of Bridget having her X-ray and it being determined that she has broken her pubic rami, is that she needs a combination of rest and recuperation and early walking to ensure a successful outcome to her recovery.

I got back home at 11.30 last night after spending 6 hours in the hospital. God I’m tired!

My concerns are the ability of the home to include in her care plan measures to regularly walk her and not just leave her in bed. It all takes extra staff and how do I know Bridget is adequately treated for this? Do I also consider going in myself regularly to assist with this?

Anyway I’m going to talk to staff this morning to see what can be achieved.

I also wonder what would’ve happened if i couldn’t have been available to go to the hospital ( me being dead or a very long way away). Would they have just left her on her own. Can’t see them letting staff accompany residents as this would leave the home short. What’s the usual protocol for this?

Anyway it’s early Sunday and I’m worried already.

peterx

Peter, I am so very sorry for what you have just been through. Where I volunteer staff would accompany but of course it depends on the staffing levels. I think offering to help with her walking is a great idea.
With love Kindredx

 

[blackmortimer]

So. The upshot of yesterday’s drama of Bridget having her X-ray and it being determined that she has broken her pubic rami, is that she needs a combination of rest and recuperation and early walking to ensure a successful outcome to her recovery.

I got back home at 11.30 last night after spending 6 hours in the hospital. God I’m tired!

My concerns are the ability of the home to include in her care plan measures to regularly walk her and not just leave her in bed. It all takes extra staff and how do I know Bridget is adequately treated for this? Do I also consider going in myself regularly to assist with this?

Anyway I’m going to talk to staff this morning to see what can be achieved.

I also wonder what would’ve happened if i couldn’t have been available to go to the hospital ( me being dead or a very long way away). Would they have just left her on her own. Can’t see them letting staff accompany residents as this would leave the home short. What’s the usual protocol for this?

Anyway it’s early Sunday and I’m worried already.

peterx

I don't know if there's a formal protocol, @Dutchman , bur when Margaret had the first fall at the nursing home they rang me to ask if I could go to the hospital to meet the ambulance. As it turned out it wasn't necessary as the paramedics checked her over and decided she was OK. So I assume this is the way homes have to work. Glad to hear Bridget's OK. Margaret had a break in her upper arm after her first fall but it healed on its own so hopefully Bridget's will. The body does seem to have remarkable self-healing properties. So don't be too depressed. It looks as though all will be well.

God bless

 

[Dutchman]

Just come back from the home. Bridget is well out of it and being fed her dinner, albeit slowly.
I’m reassured by my discussion with the home manager that they’ll incorporate Bridget’s walking routines into her daily care. I didn’t realise how much paperwork is required for each incident !

Based on what Bridget is like now and the progress of her dementia, I can’t see her being around in 12 months. I may be wrong but I believe it’s probable.

All my relatives say I should step back a bit from being involved in her care as it’s the care home’s responsibility now. But I can’t do that. I can accept that they are best placed to look after her and all that happens to her, but she’s my precious love after all, and, I want keep what I promised when we met and married, no alternatives.
Going to be kind to myself for the rest of the day.
Peterx

 

[Old Flopsy]

Hi @Dutchman I am pleased to hear that you have been reassured for now. Yes be kind to yourself- you are showing wonderful compassion. Be proud of yourself.

I have been clearing out the loft- what a dusty job. Found my wedding dress- very discoloured, and no longer my size! Also the wedding album - what a black and white world it was then- I am wondering whether to take it to show OH next time I visit. x

 

[Jaded'n'faded]

Hello Peter, sorry to hear of the damage Bridget suffered from her fall.

After my mum broke her hip in the CH (she was pushed over!) I struggled to get physio for her as the hospital 'forgot' to arrange it. Mum was reluctant to do the exercises but to be honest, I don't think they were of much use anyway. What did help was walking her up and down the corridors every day to get her weight-bearing again and used to the zimmer frame she'd been given. (Actually the frame she'd been given was the wrong height and had to be replaced.)

As you are planning to go into the home as a volunteer, it would be a big help to the staff if you could assist with Bridget's walks. At first mum needed 2 carers with her (so they moaned at me for insisting it happened every day as like every home they were short staffed) but could manage with one carer after just a few days. We were amazed how well she did but although she regained her mobility, she never progressed to more than a slow shuffle. But that was adequate!

So make sure you get in there and help Bridget to walk again. This really is one of those 'use it or lose it' situations - it was the threat of being wheelchair bound that motivated my mum.

 

[lollyc]

Based on what Bridget is like now and the progress of her dementia, I can’t see her being around in 12 months. I may be wrong but I believe it’s probable.

For what it's worth; Mum(85) broke her femur 1 week into lockdown, 3 months bed bound and then unable to follow the physio exercises, but did eventually get some mobility back. Promptly fell - numerous times - and fractured her pelvis. 7 months on, and she is unable to walk, but showing no signs of shuffling off any time soon. We are four years down this road, and I find it hard to credit that she is still here, but there really is no telling how the future will pan out.

 

[Dutchman]

Thank you @lollyc @Jaded'n'faded and @Old Flopsy for your kind support.

I really am feeling sorry for myself tonight and had a massive cry earlier because of the change in circumstances that has altered the week on week “just about cope with this” when stuff remains the same. In my heart I want stability, even if it’s Bridget just being there smiling at me. Give me visits where she remains the same even in her dementia state, then I can handle it.

I suppose none of us like change when it’s for the worse. That’s why I’m fearful for her future.
The home have told me they’re considering getting a nursing bed for her. This indicates to me a pro active approach by the home. I’ve told them I’ll help but not every day otherwise I’ll burn out.

 

[Pusskins]

Thank you @lollyc @Jaded'n'faded and @Old Flopsy for your kind support.

I really am feeling sorry for myself tonight and had a massive cry earlier because of the change in circumstances that has altered the week on week “just about cope with this” when stuff remains the same. In my heart I want stability, even if it’s Bridget just being there smiling at me. Give me visits where she remains the same even in her dementia state, then I can handle it.

I suppose none of us like change when it’s for the worse. That’s why I’m fearful for her future.
The home have told me they’re considering getting a nursing bed for her. This indicates to me a pro active approach by the home. I’ve told them I’ll help but not every day otherwise I’ll burn out.

@Dutchman I'm not feeling too crash hot myself either at the moment. I visited my husband yesterday and he has noticeably deteriorated within a week. I don't know if it was just a bad day or it's now just how it is. We know this is a progressive disease, but somehow, stupidly, we hope it's not. So depressing.

 

[update2020]

@Dutchman I'm not feeling too crash hot myself either at the moment. I visited my husband yesterday and he has noticeably deteriorated within a week. I don't know if it was just a bad day or it's now just how it is. We know this is a progressive disease, but somehow, stupidly, we hope it's not. So depressing.

Yes, @Pusskins, we are also very up and down but mostly down at the moment. , I’m afraid things never get better only worse and the very rare moments of lucidity just highlight that and make it worse. It’s really good to share on here with others experiencing the same thing.

I also treat my survival a bit like a job. constantly on the look out for new coping techniques. I think I am slowly winning. But a little bit of bad news can quickly undo all that. This is one place where people understand and Dutchman’s journey stands in for us all.
Hugs to Peter and Bridget too ❤️

 

[Dutchman]

Hello @Pusskins and @update2020

I feel I’ve gone back several months with my recovery of coping with all of this. I’m experiencing feelings that I thought I had managed and now they’ve resurfaced. This fall of Bridget’s has changed everything because she’s now not walking, she seems even more distant and vacant and my stability of coping has been rocked severely.

I feel I’m going mad. Am I going mad? I’ve lost my appetite overnight and I’m crying even now. I left a message with the Admiral Nurses last night but they haven’t phoned back. I know it’s grief and this is all normal but it’s all too much to do on my own.
I’ll see Bridget later this morning and see what the latest is with her condition. The volunteering I’d planned just seems now another responsibility. It’s all just too much I feel for my brain to manage.

I’ve really got no one apart from our forum to say all this. I have to wait till Thursday to speak to my counsellor and I don’t want to burden family or friends with this as they’re limited in what they can say or do.
I just need some way of easing off with all this.
Peterx

 

[canary]

Hi Peter. I dont think Admiral Nurses work weekends, so Id try again today. I have phoned them on a couple of occasions and found them helpful.
The grief monster can jump out and slap you at any time. It constantly feels like two steps forward and one step back and then one step forward and two steps back. The constant adjusting to the "new normal" takes it toll, but you do adjust.
xxx

 

[blackmortimer]

I suspect that after all you've been through these last days you're suffering from a flare up of what my daughter thinks is a kind of PTSD, @Dutchman. Grief is like that. I find that as long as everything at the nursing home is on an even keel I can cope, but as soon as the slightest thing changes it rocks me and, as @canary says it's one step forward and two back. So you're not mad, just grieving although sometimes I wonder what the difference is. The thing to grab hold of is that all of us here seem to suffer the same emotions, the same ups and downs, and hopefully you can take some comfort from that. Perhaps put the volunteering on hold until you feel stronger? Only you know, of course but bear in mind you don't have to be Superman!

God bless,

 

[Dutchman]

Hi @blackmortimer and @canary. What would I do without you. It seems that I’m always leaning on someone here. One day I’ll be able to help out others more.

The Admiral Nurse phoned this morning and we chatted for some time but there’s little or nothing to do that not already being done at the home.
As far as I’m concerned, well,
I need to try and put some space between the close intimate stuff that is emotionally upsetting and the wider picture of Bridget’s overall care and care home professionalism. I’m still volunteering this Wednesday but with the emphasis on Bridget’s walking practice.

When I visited this morning I found she wasn’t eating and wouldn’t try even with me helping. I hope that’s not another indication of deterioration.

peter

 

[Dutchman]

I’m treating the Forum more and more like a blog where I use it to let go of my feelings. This helps with releasing and I feel closer to my friends out there.

I suppose this evening I’m feeling completely useless. I want to help Bridget but I can’t spend everyday in the home for my own sanity. I don’t suppose it would help anyway, being in the home day after day when they appear to have Bridget’s walking needs managed. But deep inside i need to care and look after her and it’s upsetting that it’s part time and restricted.

I gave her a long big kiss today which she didn’t draw back from so I wonder if that part of her emotional response is still a little alive in her brain. Hope no one minds me getting personal! After all I share these moments knowing you all understand and it’s within a Forum of trust.
Peterx

 

[Andy54]

Of course we all understand, although we don't know each other personally we all here have a bond forged out of shared experience, we band of brothers and sisters. We may be at different points on the path but we are all on the same journey. When I read the posts here I share the pain and the occasional joys of my fellow travellers, I think that that helps me to to better understand my own feelings. So Peter keep on blogging. Best wishes Andy.

 

[Dutchman]

Hello my Forum friends

I’m well supported I believe by us fellow posters, Admiral Nurses, my counsellor and some of my family.

Having said that, I feel so different and alone now that Bridget has suffered this recent fall. Her whole manner has changed from fairly responsive to complete vacancy. I’m really thinking that I’m going to lose her within the near future. I just can’t see her surviving the next 6 months.

While she was on a fairly even keel I could just about manage my emotions from day to day but now her morality is what I think about all the time. And I’ve fooled myself into thinking that Bridget, as she was two weeks ago, could go on for a long time and I’d have her around for some form of relationship.

I fully understand that there’s an enormous difference between losing someone with dementia and they’re still alive and losing someone when they die , it’s the finality of it, the loss of any possible connection. I don’t need to explain this of course here because many have gone through this trauma and understand.

I’m just about hanging on by my emotional fingertips and I’m not sure what I’ll do when eventually she deteriorates further and dies. Perhaps I’ll die too.

Some time ago a poster here explained that the thought of taking their life,as an option due to the enormous grief they we’re suffering, was a actually a comfort. At the time I didn’t understand, now I do. You see, ending it now would deprive Bridget of her advocacy, my influence in her well-being, but once she dies my usefulness dies with her. My family would mourn, sure, but for how long? They’d get over it but I wouldn’t get over Bridget

peterx