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Dementia’s journey

Andy54

Registered User
Sep 24, 2020
165
0
@Dutchman, glad the visit with Bridget 's brother went well, if nothing else he has now seen what you see which I think is important. None of Deb's family have seen her for nearly two years also, in some cases 3 or 4 years, they will remember a very different Deb to the one that I now know. My sister went with me to visit last week, it was probably around six months since she last saw Deb and she was shocked by the change in that time. I did feel a sense of relief after that visit, it was as though someone else seeing and knowing the reality justified my decisions on the care home - silly I know but it did seem to help.
Andy
 

Dutchman

Registered User
May 26, 2017
1,826
0
74
Devon, Totnes
Hello @big l
I’ve come back to your previous post as you’ve highlighted a trait I have that upsets me and constantly gets in the way of me getting on with any happiness I might have.

Yes I do feel I deserve some form of punishment for her being in the home. I pray in could be different but it isn’t. I still feel I let her down even after all this time, that if I’d been stronger I could have managed her at home. I even still feel some responsibility for her dementia. It’s trying to find blame for a wrong that’s been done and resigning myself to my punishment.

In many ways I just can’t accept that dementia just happens and I find it hard to accept that I and Bridget should be the ones to suffer the way we are suffering now.

And I don’t know how to get round this. In many ways being on my own with no one to discuss this with then it’s just me and my thoughts. I suppose I’m trying to square the circle, to make sense of something that can never be made sense of.

No one deserves the cruelty of dementia. The life denied to me and Bridget. It’s the tiny moments of ordinariness that I miss so much when I see her in my imagination writing cards, at her sewing machine, standing at the bottom of our drive making sure the roads clear for me to drive out, and numerous other stuff.
 

Andy54

Registered User
Sep 24, 2020
165
0
@Dutchman, I don't think you should ever think about deserving punishment, from your previous post it is clear that you like most of us here soldiered on alone and unsupported for a very long time (probably longer than might be considered reasonable ) before getting any help. That is deserving of praise not punishment. Like you I constantly think of all the minutiae of the life D and I had together, I find it impossible to "let that go" and I have come to accept that I'll be carrying that baggage around with me the rest of my life.
Andy
 

Violet Jane

Registered User
Aug 23, 2021
899
0
Dutchman, you can say the same about other illnesses. Most strike randomly, although there may be lifestyle factors or genetics at play. Bridget was unlucky. You did not cause or accelerate Bridget's dementia. It is a progressive and terminal illness with no cure and only limited treatments to slow done the progress of the disease. I do wish that you would stop thinking of yourself as being punished or deserving punishment; you aren't and don't.
 

Andy54

Registered User
Sep 24, 2020
165
0
@Dutchman, having thought a little more on this, when you are thinking about what you may have done to "deserve this" maybe you are really just questioning whether you made the most of your time together, I know I find myself asking the same. The words of Elvis Presley singing "always on my mind" keep springing into my head - yes I do know I did love her enough and yes I'm sure that she knew that, maybe this self doubt that we experience is just another part of the collateral damage of dementia.
 

Picture

Registered User
Nov 14, 2021
24
0
Hi, I’m new to the site. I’ve read a lot of this post and have been sitting here nodding away. I have no one to talk to in real life who understands. I don’t think you can unless you’ve been through it. So sorry to everyone for the situation we find ourselves in. I hope it’s ok to post too on here.

My mum has dementia, final stages now. She is bedbound, can’t do anything, no speech, stops recognising me 2 years ago. She lost the ability to swallow two weeks ago.
 

Picture

Registered User
Nov 14, 2021
24
0
Hi @Dutchman
Thank you for the welcome, I definitely do bottle up my feelings. I suppose it’s a coping mechanism. I think I’m reaching the point where other people (outsiders) don’t understand the intricacies of the illness. Friends have assumed that mum would be tube fed now the swallow has gone. And making noises about me needing to fight harder or be a better advocate for my mum. So I don’t bother talking to anyone now as it just leaves me frustrated (and I think they think badly of me as well, like I’ve given up). It’s hard to live this life day in day out, with everyone else swooping in with ‘advice’, then leaving you to get on with it alone.

I am so sorry to hear about your wife, you write so lovingly about her. I lost my husband a few years ago, so I do understand the loneliness of losing your partner in crime.

Hugs to everyone going through this horrible journey x
 

lollyc

Registered User
Sep 9, 2020
801
0
Hi @Dutchman
Thank you for the welcome, I definitely do bottle up my feelings. I suppose it’s a coping mechanism. I think I’m reaching the point where other people (outsiders) don’t understand the intricacies of the illness. Friends have assumed that mum would be tube fed now the swallow has gone. And making noises about me needing to fight harder or be a better advocate for my mum. So I don’t bother talking to anyone now as it just leaves me frustrated (and I think they think badly of me as well, like I’ve given up). It’s hard to live this life day in day out, with everyone else swooping in with ‘advice’, then leaving you to get on with it alone.

I am so sorry to hear about your wife, you write so lovingly about her. I lost my husband a few years ago, so I do understand the loneliness of losing your partner in crime.

Hugs to everyone going through this horrible journey x
@Picture , I think we all identify with the well-meaning, but completely clueless friends. They have no idea that your mum probably wouldn't be able to tolerate a tube, and I'm afraid many people look at quantity of life, rather than quality. Easy to judge if you haven't faced that dilemma.
However, it's remarkable how many people out there do know exactly what you are going through. Here at TP, obviously, but also complete strangers.
I have dogs, so often chat to people when out walking. I don't shy away from mentioning Mum's dementia (I don't use it as my opening line!!) and so many people have had experience and "get" it. One kind lady even gave me her phone number, in case I ever needed someone to sit with Mum! I've made friends with 2 people who are currently in the thick of it, and we compare notes when we meet. Even one of the supermarket cashiers chats to me about her mum's dementia. I'm afraid there's a lot of it about.
 

Dutchman

Registered User
May 26, 2017
1,826
0
74
Devon, Totnes
I hate Sundays for lots of reasons. Shops opening later, beginning of a new week, that anticipation of the week to come. All of which impacted on Bridget’s dementia behaviour which I’m reminded of today. I feel low today and having zero energy. Just feel sorry for myself. The house is dreadfully silent and I’m on the settee looking out the window enjoying nothing. I buy stuff for gratification and distraction. When Bridget was here there was no need.

I’ve just phoned and Bridget’s fine. But that leaves me imagining the future on my own Sunday after Sunday. No wonder people don’t look after themselves as they don’t see the point
 

Violet Jane

Registered User
Aug 23, 2021
899
0
Picture, people don't understand that your mother is now dying and that all tube feeding would do is prolong the dying process for no purpose or benefit. As medical treatments have advanced we seem, as a society, to find death a failure and to be increasingly unable to accept that just because something can be done does not mean that it should be done. It's infuriating and upsetting for you to have these people imply that you should be fighting harder for your mother. There is no point talking to them about the situation. Your mother is reaching the end of her life and it's time to let her go.

Do keep posting on this site as there are lots of people who understand what you are going through.
 

Dutchman

Registered User
May 26, 2017
1,826
0
74
Devon, Totnes
Picture, people don't understand that your mother is now dying and that all tube feeding would do is prolong the dying process for no purpose or benefit. As medical treatments have advanced we seem, as a society, to find death a failure and to be increasingly unable to accept that just because something can be done does not mean that it should be done. It's infuriating and upsetting for you to have these people imply that you should be fighting harder for your mother. There is no point talking to them about the situation. Your mother is reaching the end of her life and it's time to let her go.

Do keep posting on this site as there are lots of people who understand what you are going through.
Picture, people don't understand that your mother is now dying and that all tube feeding would do is prolong the dying process for no purpose or benefit. As medical treatments have advanced we seem, as a society, to find death a failure and to be increasingly unable to accept that just because something can be done does not mean that it should be done. It's infuriating and upsetting for you to have these people imply that you should be fighting harder for your mother. There is no point talking to them about the situation. Your mother is reaching the end of her life and it's time to let her go.

Do keep posting on this site as there are lots of people who understand what you are going through.
Hello everyone. I got through Sunday just. @Violet Jane i find people don’t know much at all when it comes to what we’re going through.
Even my daughter surprised me last night when we were discussing Bridget. I mentioned helping a carer with Bridget’s personal care ( they were short staffed and I helped change Bridget as she was wet). I said I would do anything for Bridget and my daughter said that “not everyone is like you dad”. I don’t get it.

I don’t consider myself extraordinary, just a loving husband. Why wouldn’t you do everything for the one you love? In many ways I suppose it would be easier if I didn’t like Bridget but if you love someone ( or even have common kindness for someone) don’t you just do it unthinking.

I guess until we find ourselves in this position away from the coziness of ordinary life then we don’t know how we’ll be until we’re tested.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,430
0
High Peak
I'm with your daughter on this, Peter. She's right that 'not everyone is like you'. I certainly couldn't do personal care for anyone. But not being able to wipe someone's bum doesn't mean you don't love them!

What you have done for Bridget is far more than many could possibly do.
 

Picture

Registered User
Nov 14, 2021
24
0
@Dutchman you show such love and care for your wife. But you’re right, until you’re tested you don’t know how you’ll react. I hope you’re feeling better today. Sundays can be a bit flat i think as it’s generally family day so it just exposes our loss even more than usual.
 

CAL Y

Registered User
Jul 17, 2021
362
0
Hello everyone. I got through Sunday just. @Violet Jane i find people don’t know much at all when it comes to what we’re going through.
Even my daughter surprised me last night when we were discussing Bridget. I mentioned helping a carer with Bridget’s personal care ( they were short staffed and I helped change Bridget as she was wet). I said I would do anything for Bridget and my daughter said that “not everyone is like you dad”. I don’t get it.

I don’t consider myself extraordinary, just a loving husband. Why wouldn’t you do everything for the one you love? In many ways I suppose it would be easier if I didn’t like Bridget but if you love someone ( or even have common kindness for someone) don’t you just do it unthinking.

I guess until we find ourselves in this position away from the coziness of ordinary life then we don’t know how we’ll be until we’re tested.
 

CAL Y

Registered User
Jul 17, 2021
362
0
“Not everyone is like you dad” I understand that and wouldn’t have expected my husbands daughters to have done personal care in that way because I know he would have been mortified at the idea.
However in his last two weeks , when the carers were not here, myself and my sister and brother in law did wash and change him and everything else he needed.
Bottom wiping seems to come naturally when you truly love someone as you do Bridget.
Try not to think too badly of others. The love that you have and I had for my lovely husband is very special.
I read all your posts and I really wish for you to find peace with your situation.
It really is the only way to cope with life. And yes I agree about the weekends.
My husband died only 10 days ago and I have just had the worse weekend of my life but today I’m a lot better and coping with things again.xx
 

Dutchman

Registered User
May 26, 2017
1,826
0
74
Devon, Totnes
“Not everyone is like you dad” I understand that and wouldn’t have expected my husbands daughters to have done personal care in that way because I know he would have been mortified at the idea.
However in his last two weeks , when the carers were not here, myself and my sister and brother in law did wash and change him and everything else he needed.
Bottom wiping seems to come naturally when you truly love someone as you do Bridget.
Try not to think too badly of others. The love that you have and I had for my lovely husband is very special.
I read all your posts and I really wish for you to find peace with your situation.
It really is the only way to cope with life. And yes I agree about the weekends.
My husband died only 10 days ago and I have just had the worse weekend of my life but today I’m a lot better and coping with things again.xx
Hello @CAL Y thanks for replying. I really don’t think negatively of others, just a degree of not understanding.
Even before Bridget went into the home there were instances where I had to “ sort her out” with personal care. I suppose if I’d had all the facilities that the home has ( walk in showers, drains in the floor, etc) it would have been much easier to cope but little bathrooms and sinks make it very difficult especially when someone isn’t compliant.

Don’t get me wrong, I couldn’t do what the carers do for the other residents, it’s only me and Bridget and that intimate relationship we had where we had no secrets, bodily or mentally.
 

notsogooddtr

Registered User
Jul 2, 2011
1,104
0
I have provided 'personal care' for my brother, sister and both parents. I hated it tbh and would hate for anyone I am close to to do it for me. I think I would be able to cope better with care from a professional