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Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,449
0
73
Devon, Totnes
While I was visiting today I showed Bridget pictures from a magazine of Dartmoor in autumn and she said “we could go there” . You can imagine my heart dropped as there is no likelihood of that happening without lots of planning. Would she like it? Would she be scared? Is she just saying it and forget by tomorrow?

There’s so many things I’d love to do but she hasn’t been in my car for 2 years and anyway, what would any of it achieve? If I thought she’d really enjoy a trip out and with no problems then I’d consider it. Just to be a couple again enjoying a drive out, wouldn’t that be wonderful.
More for me to worry about and fret over.
 

Pusskins

Registered User
Jun 6, 2020
320
0
New Zealand
I’ve probably said this before. The saddest thing I’m feeling now is that I have a wife who cannot love me anymore. Dementia has killed that deep mysterious feeling when you love one another. I miss being loved - simple.

And a regret I have is that we didn’t express our love enough when times were normal. But we always took for granted that we had forever but, really, the shows of affection could have been more. I go to visit and I say repeatedly to her, without any hesitation, that I love you and miss you. She smiles and sometimes says ok. I’m trying to “get through” I suppose, to enter that damaged brain, to get her to understand that I love her. It’s not going to work I know but she must know that I’m trying. She say “I’m lovely” so that’s something I suppose.

I’m desperately trying to maintain any special connection that’s left and that makes it uncertain, trying, upsetting certainly and altogether heartbreakingly sad.
Oh Peter ... I can't help crying as I read your post. I'm another one who wishes I could go back and change the way my relationship was with MH for the years between 2010 and 2019 when MH was diagnosed with dementia. To be fair, I had health issues of my own, but I keep blaming myself for letting things slide. I thought we'd become a happily married (in a rut) couple, but ok with that. I didn't know MH felt otherwise and there was no communication about these issues. I just want to go back and fix it all, but know I can't. Just know you're not alone, although I know it probably won't help. For ages after MH went into care, I wanted a new relationship, to feel loved, have company etc again. It would be nice, but every time I try to picture myself with somebody else, I see MH's face and build. I doubt entering into a new relationship is going to happen. I often used to tell him that if he died before me, I was going with him. I still feel the same, only the situation now is not that simple.
 

blackmortimer

Registered User
Jan 2, 2021
284
0
There's a line in a hymn that I used to sing at school many many years ago the goes, if I remember aright, "Time like an ever rolling stream bears all its sons away". I try to remember that when I feel tempted to try and recreate the past. The stark truth is, we can't. Time is a one way street. We can't "fix" it we can't replay it with a different ending. It's over, let it go - another memory from the sixties and "That was the Week that was". The past is past, the future unknown, we can only live in the present. The sad thing is, of course, that our present is sort of frozen in time. I feel this a lot these days. Every time I go to see Margaret it's the same routine, the same faces, the same Covid test every three days, the same Margaret lying there in her dream state not recognising me and yet the routine is strangely comforting. I don't really want to visualise the future because I can't see one that will be other than bleak for me. Sometimes I think like you @Pusskins that if, as is very likely, she dies before me I should want to go with her but I know I can't because my religious upbringing tells me it's wrong, so all I can hope for is that I may go first - extremely unlikely as I'm fairly fit - and meanwhile get what crumbs of comfort I can from being with her even if she doesn't realise it. God bless,
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
While I was visiting today I showed Bridget pictures from a magazine of Dartmoor in autumn and she said “we could go there” . You can imagine my heart dropped as there is no likelihood of that happening without lots of planning. Would she like it? Would she be scared? Is she just saying it and forget by tomorrow?

There’s so many things I’d love to do but she hasn’t been in my car for 2 years and anyway, what would any of it achieve? If I thought she’d really enjoy a trip out and with no problems then I’d consider it. Just to be a couple again enjoying a drive out, wouldn’t that be wonderful.
More for me to worry about and fret over.
Our hopes & dreams for our loved ones are so different from their reality, & this is at times incomprehensible for us.

Reality of a trip - you’d need a carer to sit in the back with your wife & the child locks on in the car.
Change of clothing , & pads, emergency phone & signal in case of issues/ health.

Sorry I don’t mean to shatter your dreams but I used to take out my PWD & they had some semblance of who I was. No pacing & walking around the home.
The care home will organise trips out, & if your wife doesn’t go on these then there is a reason. Reality sucks I know, but we are all allowed to dream & still need to to get through each day.

I remember saying to you when you first posted that you need to be kinder to yourself, & I still stand by that.

Please consider trying to foster a dog or a cat from the cinnamon trust. A rescue animal comes with issues but the cinnamon trust takes in animals whose owners are elderly etc. & can no longer keep them.

My dog is my companion , always by my side ….. Yep even on the bed! I’m never alone , in the car, garden, walks
It might be worth trying a foster pet, you can try & see ?
Just an idea lovely
x
 

Dutchman

Registered User
May 26, 2017
1,449
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73
Devon, Totnes
Thanks @DesperateofDevon. Yes, that’s what I was thinking - all the preparations and paraphernalia needed to take a trip out for what result? Bridget seems quite content in her home and in wanting to take her out I’m hoping for an outcome that won’t probable materialise. How we hang on to dreams!

I’ve got a cat now🐈and her name is Poppy. She 12 years old and just hangs around the house with occasional trips in the garden. She a lovely companion.
Thanks for your reply
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Thanks @DesperateofDevon. Yes, that’s what I was thinking - all the preparations and paraphernalia needed to take a trip out for what result? Bridget seems quite content in her home and in wanting to take her out I’m hoping for an outcome that won’t probable materialise. How we hang on to dreams!

I’ve got a cat now🐈and her name is Poppy. She 12 years old and just hangs around the house with occasional trips in the garden. She a lovely companion.
Thanks for your reply
Poppy sounds a real poppet, & the company is just lovely. Sadly our dreams & memories can often be painful, feel blessed for loving your wife
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8D94A4F6-0BF4-444A-9D21-BBE203E11092.jpeg
 

Violet Jane

Registered User
Aug 23, 2021
236
0
Dutchman, Bridget's world has shrunk to the walls of the care home and I fear that the trip you mention would prove to be a disappointing exercise. It is likely that Bridget would be uninterested, distressed or asleep. If she could articulate her wishes she is likely to indicate that she wants to go home. As has been said above, it would need a lot of preparation, and you would certainly need someone else to go with you in case Bridget's behaviour became difficult when you were out. Think about practical things such as changing Bridget's pad. Would you manage in a public toilet, assuming that there are any?

Could you bring some beautiful autumn leaves in to show her, and perhaps display them in her room if it is safe to do so? You could take a handprint of her hand, or draw round it, and then make a collage with the leaves and her hand at the centre.
 

Dutchman

Registered User
May 26, 2017
1,449
0
73
Devon, Totnes
Such good advice. Thanks everyone. It means a lot❤️👍

When you find yourself on your own it’s difficult to make these sort of decisions. I had another choice to make this morning and I had to phone my son and brother in law for advice. Bridget being here years ago meant I had someone to bounce ideas off of, we’d discuss, ponder, argue maybe, but in the end we both felt supported. Collaboration being another casualty of dementia. Thank goodness for all you kind friends out there to help me out.
 

Old Flopsy

Registered User
Sep 12, 2019
266
0
Hi @Dutchman @blackmortimer and all others. I have gone quiet for a few days as I am still coming to terms with being told OH has developed a chest rattle- and having it confirmed that this is a significant development. He isn't eating- even when offered his favourite icecream. He drinks a little when encouraged. He stiil knows me but I can't tell what he says- his voice is just a feint whisper. I fear he is going rapidly downhill and it scares me.
 

Dutchman

Registered User
May 26, 2017
1,449
0
73
Devon, Totnes
Hi @Dutchman @blackmortimer and all others. I have gone quiet for a few days as I am still coming to terms with being told OH has developed a chest rattle- and having it confirmed that this is a significant development. He isn't eating- even when offered his favourite icecream. He drinks a little when encouraged. He stiil knows me but I can't tell what he says- his voice is just a feint whisper. I fear he is going rapidly downhill and it scares me.
Oh @Old Flopsy. You know I can’t say that much to lessen your pain. But I’m here if you want to unload. ❤️Peter
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Hi @Dutchman @blackmortimer and all others. I have gone quiet for a few days as I am still coming to terms with being told OH has developed a chest rattle- and having it confirmed that this is a significant development. He isn't eating- even when offered his favourite icecream. He drinks a little when encouraged. He stiil knows me but I can't tell what he says- his voice is just a feint whisper. I fear he is going rapidly downhill and it scares me.
(((Hugs)))
 

Dutchman

Registered User
May 26, 2017
1,449
0
73
Devon, Totnes
Well I’ve come a decision that the caravan must go. It’s being picked up on Saturday. To be honest I’ll be glad as it’s a constant reminder of what the good times were and now gone. And how, at the end, I hid in it to get some sleep away from Bridget and I hid round the back of it making arrangements for a care home placement. I have cried though as it’s another thing gone of our loving history.

Thank goodness she doesn’t remember any of it.
Peter
 

Old Flopsy

Registered User
Sep 12, 2019
266
0
Hi @Dutchman @blackmortimer and all the others who responded- it is much appreciated. I have been today and couldn't even get him to drink. He opened his eyes once and clutched my hand momentarily whilst I sat gazing at him for over an hour. He said not a word and appeared to be in another world. But I decided to go home and leave him to sleep.
 

Dutchman

Registered User
May 26, 2017
1,449
0
73
Devon, Totnes
Hi @Dutchman @blackmortimer and all the others who responded- it is much appreciated. I have been today and couldn't even get him to drink. He opened his eyes once and clutched my hand momentarily whilst I sat gazing at him for over an hour. He said not a word and appeared to be in another world. But I decided to go home and leave him to sleep.
Here’s me talking about my soon to go caravan and you are are going through so much heartache with your love one. If he’s sleeping at least there is some peace to be had. It’s dreadful not being able to get a response when you want desperately to just say loving words to each other.
Just keep posting as I check in all the time and can virtually keep you company as best I can.
Peter
 

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