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Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,400
0
73
Devon, Totnes
Hello @blackmortimer @kindred @Old Flopsy @Stacey sue @Pusskins and others I might have missed.

I don’t know about anyone else but I find mornings the worse. The prospect of a whole day ahead is awful.

Also, there no one else to do stuff. Bridget used to help, we’d share all the clearing up, the basic household chores. She’d move furniture around, make a difference.

I’ve just come back from the dentist and she’d say “how did you get on”. I’d moan about the cost and the we’d get on with our day, perhaps a ride out or shopping. Now nothing.

I don’t think loneliness gets any easier ( it’s not for me) and I’m going to be reminded today of the women I used to know when I visit the home soon. I looked at a picture of us in better times and I realised that this is a woman I used to know ( it’s really weird) and I don’t remember that life now.

I mean, you know, if she was brought back to me before dementia then I’m sure it wouldn’t take long to pick up the pieces of our old life. I can’t even sit outside in the sunny garden with a tea as it reminds me of sitting in the open when we enjoyed camping and the outdoors. Too many reminders! I’ve a shed full of camping gear and a redundant small stylish German caravan on the drive.

She remembers nothing and I remember everything. Why do I do this to myself? Why do I even write these posts to you all knowing it’ll upset me? I need to share with those who really know similar emotions.

peter
 

Andy54

Registered User
Sep 24, 2020
58
0
I think that we are sort of living "in limbo". I find it hard to motivate myself to do things now that the sharing aspect of things has disappeared, I've lost count of the number of times I promised myself I would do something or go somewhere only to talk myself out of it on the day. In some ways it's almost like at a subconcious level I'm costantly putting things on hold while I'm waiting for D to return from a few days away, I know it's not going to happen but that doesn't seem to make any difference.
Regards Andy.
 

Stacey sue

Registered User
Jan 24, 2020
108
0
No two days are the same, sometimes I don’t want to go on! and other times I can cope? But this is very difficult to come to terms withDementia !!! Definitely comfort knowing others understand 👍🏻 X
 

Old Flopsy

Registered User
Sep 12, 2019
250
0
Hi all fellow sufferers- yes 'living in limbo' is just how I feel. Married, but not living like I'm 'married', 'separated' by the situation, but not separated. They are long days and I am constantly thinking and worrying about OH. He has now stopped drinking and eating- a doctor visited him in the home today and prescribed 'end of life meds' to control pain if he cannot swallow. The progress of dementia goes on and on. May God give us all strength to carry on.
 

blackmortimer

Registered User
Jan 2, 2021
248
0
Uncanny, @Old Flopsy . I had a very similar conversation with the Nursing Home about Margaret on Friday. They also wanted me to complete a form as her representative which, without spelling it out in so many words, effectively asked me to indicate whether she would want medical intervention/hospitalisation at the end or whether she'd prefer to stay at the home with palliative care only. I opted for the latter but it knocked me back more than somewhat particularly as they wanted information as to which funeral director to contact if the need arose. It was something that I hadn't really thought about, or more likely pushed to the back of my mind, but here it was in black and white! They also said that as she was having swallowing difficulties the doctor had prescribed oral morphine which I imagine is one of the "end of life meds". As you say, it goes on and on. Just when you've got used to one state of affairs, dementia bowls you a googly and you're lucky if you can stay at the crease! I had a chat with the funeral directors yesterday which as it turned out was useful and helped me get my head around something I'd been trying not to think about but having done so and had a calming conversation I feel better about it and can file away somewhere in my head as sorted.

God bless, all of you
 

Pusskins

Registered User
Jun 6, 2020
305
0
New Zealand
Uncanny, @Old Flopsy . I had a very similar conversation with the Nursing Home about Margaret on Friday. They also wanted me to complete a form as her representative which, without spelling it out in so many words, effectively asked me to indicate whether she would want medical intervention/hospitalisation at the end or whether she'd prefer to stay at the home with palliative care only. I opted for the latter but it knocked me back more than somewhat particularly as they wanted information as to which funeral director to contact if the need arose. It was something that I hadn't really thought about, or more likely pushed to the back of my mind, but here it was in black and white! They also said that as she was having swallowing difficulties the doctor had prescribed oral morphine which I imagine is one of the "end of life meds". As you say, it goes on and on. Just when you've got used to one state of affairs, dementia bowls you a googly and you're lucky if you can stay at the crease! I had a chat with the funeral directors yesterday which as it turned out was useful and helped me get my head around something I'd been trying not to think about but having done so and had a calming conversation I feel better about it and can file away somewhere in my head as sorted.

God bless, all of you
@Dutchman et al. Yes, I too look back at how things used to be and it seems surreal, like it was somebody else's life. I just try to get on with my 'new' life, but it's not easy and feels bizarre. There's no way out of this hell, that's all I know. Now I'm not allowed to visit MH because there's one of those winter viruses going round. MH will probably have forgotten who I am by the time I get back to see him.
 

Dutchman

Registered User
May 26, 2017
1,400
0
73
Devon, Totnes
I think that we are sort of living "in limbo". I find it hard to motivate myself to do things now that the sharing aspect of things has disappeared, I've lost count of the number of times I promised myself I would do something or go somewhere only to talk myself out of it on the day. In some ways it's almost like at a subconcious level I'm costantly putting things on hold while I'm waiting for D to return from a few days away, I know it's not going to happen but that doesn't seem to make any difference.
Regards Andy.
Exactly @Andy54

Every time I go I want my old Bridget back and then I’m reminded dramatically that there's no way I would last a week with her at home as she is now. The problem with dementia is that they’re there but not there. I want to drag Bridget back into my life but she’s in the care home world now, that’s what she knows and it’s like a foreign country I can’t visit.

As I walked through the care home door yesterday she was being walked to the bathroom to be cleaned up. There’s no way I could do that at home. I haven’t the facilities, I wouldn’t have numerous staff always around, I’d have little sleep, I’d be on edge and Bridget wouldn’t be safe.
My poor Bridget has a much diminished life now but I ask “are you happy” and she smiles at me, so I have to believe that.

We crave for things to be different, if we didn’t we wouldn’t be normal. I don’t want to be on my own and I never thought we would part in these circumstances. Always thought we’d live together into an old age and die together sometime many years from now. That was the plan.

Then I hear of people dying young, slowly in pain, dying instantly in accidents, young and old carers not coping for years at home and a broken care system that needs radically fixing. This gives me a little perspective on it all - not much.
Best wishes to all
Peterx
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,946
0
High Peak
Peter, I never thought my mother would become institutionalised but she absolutely did. I was shocked when visiting if she turned to a carer for help or to ask them something instead of me. Her life became all about what was happening in her little world (or what she imagined was happening!) and she had no interest in my life, my children, had no clue about current affairs, etc, even though she 'read' the paper most days.

I was quite put out at first even though I knew it was down to the dementia. I felt excluded and like an outsider rather than her closest relative. But I also realised something: she was content in her little world, she felt part of it, all her needs were met, she was warm, fed and safe. You try and put yourself in their position, you think, 'I would hate being in this situation, feeling like this, being shut up in this awful place!' but it's just not the same for them! Their cognition/perception/understanding is compromised to such a degree that the 'little world' of the care home actually suits them very well. It removes so many of the challenges and difficulties they would otherwise face in 'real' life, so they don't have to struggle, don't have to explain, don't even have to think about what's coming next. So they feel safe. And that is priceless.
 

Moggymad

Registered User
May 12, 2017
611
0
Uncanny, @Old Flopsy . I had a very similar conversation with the Nursing Home about Margaret on Friday. They also wanted me to complete a form as her representative which, without spelling it out in so many words, effectively asked me to indicate whether she would want medical intervention/hospitalisation at the end or whether she'd prefer to stay at the home with palliative care only. I opted for the latter but it knocked me back more than somewhat particularly as they wanted information as to which funeral director to contact if the need arose. It was something that I hadn't really thought about, or more likely pushed to the back of my mind, but here it was in black and white! They also said that as she was having swallowing difficulties the doctor had prescribed oral morphine which I imagine is one of the "end of life meds". As you say, it goes on and on. Just when you've got used to one state of affairs, dementia bowls you a googly and you're lucky if you can stay at the crease! I had a chat with the funeral directors yesterday which as it turned out was useful and helped me get my head around something I'd been trying not to think about but having done so and had a calming conversation I feel better about it and can file away somewhere in my head as sorted.

God bless, all of you
That sounds like the questions on a DNR form? Yes it does come as a shock to see the question about funeral directors. I know it's just formality but it does seem a bit blunt & assumes the nearest & dearest want them to deal with it. My mum already had a funeral plan but I answered that I would do the contacting when it was necessary. I didn't want to feel sidelined. Neither could I answer whether mum would want music playing etc. I just said we would decide at the time. It felt too much like they were organising her passing when she was still very much alive. I hope things improve for your wife but if not then be as involved as you would want to be.
 

kindred

Registered User
Apr 8, 2018
2,735
0
That sounds like the questions on a DNR form? Yes it does come as a shock to see the question about funeral directors. I know it's just formality but it does seem a bit blunt & assumes the nearest & dearest want them to deal with it. My mum already had a funeral plan but I answered that I would do the contacting when it was necessary. I didn't want to feel sidelined. Neither could I answer whether mum would want music playing etc. I just said we would decide at the time. It felt too much like they were organising her passing when she was still very much alive. I hope things improve for your wife but if not then be as involved as you would want to be.
I was actually glad his nursing home took that responsibility from me and contacted the funeral directors etc. It was a kindness. I had been at Keith’s bedside for three weeks with only short rests away. I was absolutely exhausted and numb.
when he was put ion end of life, the manager asked about funeral directors and I said, oh you know, the co op. And she smiled and said she knew the company so well and they were always so kind and sensitive.
 

blackmortimer

Registered User
Jan 2, 2021
248
0
I was actually glad his nursing home took that responsibility from me and contacted the funeral directors etc. It was a kindness. I had been at Keith’s bedside for three weeks with only short rests away. I was absolutely exhausted and numb.
when he was put ion end of life, the manager asked about funeral directors and I said, oh you know, the co op. And she smiled and said she knew the company so well and they were always so kind and sensitive.
Thank you @kindred , @Moggymad . Having got over the initial shock, I'm grateful to the nursing home for making me think about a funeral because Margaret had never wanted to talk about it. So it got put into the "deal with when it arises" file. Having had to think about it, at least to the extent of naming a funeral director, and having talked to the children about it, seen the funeral directors to talk things through with them I feel a lot better. I agree that it's a weight of my mind that the home will contact the funeral home when the time comes because I'm quite sure that I would be in no state. It has also made us think through what sort of funeral it should be so that we can write it down in the helpful form provided to me and then file it away and not think about it again. It also tells me that i should also make sure the children know what I would want - who knows, it could be me first - now there's a potential irony!!

God bless
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,946
0
High Peak
My mother had also bought a funeral plan and I was very grateful. I'd never had to deal with death before and hadn't a clue about what to do, procedures, etc. All I had to do was call them when she died and they did everything else.

At a time like that, it's one less thing to worry about. Also, as mum had made all the plans, I knew the funeral was exactly what she wanted. I will definitely be buying a plan myself, for the benefit of my children. It's not about the money so much as just making things easier for them.

It's also good to see a number of simple/cheap cremation companies advertising on TV - I think people should have more choices. A quick burn will do for me...!
 

jennifer1967

Registered User
Mar 15, 2020
5,867
0
Southampton
we are in the process thinking about and paying for a simple cremation. funeral. he doesnt want fuss and hes always said that hes not going to know anything about so whats the point of music, eulogies etc. we had to sort out my mums and nans and it was such a tense time that we chose the right music, readings, eulogies and in some ways our view and not theirs and worrying you are going to offend someone. much easier to sort it out before. there is a question on thew LPA form to say that you want someone to make the decision of how much treatment/ intervention i can decide for my husband if he cant. with DNR, antibiotics is one thing but i wouldnt see the benefit in resuscitating someone who has a terminal illness to suffer a bit more as well as probably suffering broken ribs and pain. but thats my opinion.
 

Dutchman

Registered User
May 26, 2017
1,400
0
73
Devon, Totnes
Feel i ought to get Bridget last wishes in some order. We did have a woodland burial planed but she drew out of that in the end as she felt uncomfortable about it and I had to cancel mine as well.

Another things cropped up that is bothering me. It’s the old chestnut of family relationships and their attitude towards their mother. They’re visiting this weekend and staying just two days.

I’m finding it difficult to not get very frustrated over their lack of concern. My sons attitude is one of “ she’s taken care of in a home now so don’t get so involved. They’re paid to do all this”. The brother in law has more or less the same feeling and says
that “ no one should live their life for someone else”. So I’m left to take up the slack on being there for their mum and sister.

Bridget was always there for the family. She loved them so much and they had lovely times at our house, well cared during their holidays here. Now she’s gone I’d like to see a bit more regard for all the love she gave hardly ever thinking of herself.

What am I supposed to do? Confront them over this, have it out, tell them how I feel? What would that achieve? I can’t force people to care more but am I suppose to smile and pretend all’s ok and just get through the weekend?

peter
 

Dutchman

Registered User
May 26, 2017
1,400
0
73
Devon, Totnes
Feel i ought to get Bridget last wishes in some order. We did have a woodland burial planed but she drew out of that in the end as she felt uncomfortable about it and I had to cancel mine as well.

Another things cropped up that is bothering me. It’s the old chestnut of family relationships and their attitude towards their mother. They’re visiting this weekend and staying just two days.

I’m finding it difficult to not get very frustrated over their lack of concern. My sons attitude is one of “ she’s taken care of in a home now so don’t get so involved. They’re paid to do all this”. The brother in law has more or less the same feeling and says that “ no one should live their life for someone else”. So I’m left to take up the slack on being there for their mum and sister.

Bridget was always there for the family. She loved them so much and they had lovely times at our house, well cared during their holidays here. Now she’s gone I’d like to see a bit more regard for all the love she gave hardly ever thinking of herself.

What am I supposed to do? Confront them over this, have it out, tell them how I feel? What would that achieve? I can’t force people to care more but am I suppose to smile and pretend all’s ok and just get through the weekend?

peterx
 

jennifer1967

Registered User
Mar 15, 2020
5,867
0
Southampton
the prayer of serenity comes to mind, simplest terms change what you can leave things that you cant and the wisdom to know the difference. its hard and i suppose the one consolation is bridget will be unaware
 

blackmortimer

Registered User
Jan 2, 2021
248
0
I agree. @jennifer1967. It's surprising how little we can change and I would think family comes firm;y under that heading! However, Peter, you can do something about possible funeral arrangements. I would suggest you have a word with a local funeral director and talk it through. I found this exercise extremely cathartic.

God bless
 

Old Flopsy

Registered User
Sep 12, 2019
250
0
@Dutchman I am visiting daily now and assisting with trying to get OH to eat- the lunch looks lovely but he is just not up to eating more than a spoonful. At least I feel I am doing something useful, as I can stay as long as I want and it's so much longer than the half hour visits I had before.

@blackmortimer - I too discussed with the staff at the home what happens when the end comes- a bit different in our case as OH has left his body to medical research- so I have to contact the University- but I don't know who transports the body. I guess I prefer to wait and see as I just don't like the idea but it would be what he wants. OH has always said he doesn't want a funeral- just wants me to buy all his drinking companions in the club a drink- the problem is that since he wrote that will 90% of them have died!
 

blackmortimer

Registered User
Jan 2, 2021
248
0
@Dutchman I am visiting daily now and assisting with trying to get OH to eat- the lunch looks lovely but he is just not up to eating more than a spoonful. At least I feel I am doing something useful, as I can stay as long as I want and it's so much longer than the half hour visits I had before.

@blackmortimer - I too discussed with the staff at the home what happens when the end comes- a bit different in our case as OH has left his body to medical research- so I have to contact the University- but I don't know who transports the body. I guess I prefer to wait and see as I just don't like the idea but it would be what he wants. OH has always said he doesn't want a funeral- just wants me to buy all his drinking companions in the club a drink- the problem is that since he wrote that will 90% of them have died!
From what (very) little I know of leaving one's body to medical research there are a couple of points. First the research institution has to actually want the body which may not be a given. Second, if they do want it there may be some paperwork to be signed on your husband's behalf. Third, if they accept the body I think they arrange both collection when the time comes and disposal by way of a simple funeral when they have finished with it. This information may be out of date (I'm very old) so you're right to contact the University now. God bless,