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Dementia’s journey

Jaded'n'faded

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Jan 23, 2019
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High Peak
I'm sure Bridget wasn't wondering why she was quarantined and others had their freedom - that would take a lot more understanding and reason than she has now. It's the same for whether or not you visit - she won't wonder where you are or be confused.

But that's half the problem I think and I'm really not surprised you wish it was over. If she had some other illness or was in a hospital, you could visit and there would still be interaction, appreciation. Even if you both spent the visits crying it would be shared crying. But with dementia, the connection is so completely lost in the later stages. I know there were times I visited my mum when I felt I could just as easily have visited one of the other residents for all the difference it made. But although she called you 'dad', there was some recognition. She knew that she knew you and that you were an important person in her life - that's a big thing.

Your are stuck in a limbo-land and it's all completely out of your control. It's not wrong to want that to end. I often wondered, 'How long can this go on?' and realised that for many of us, caring would be so much easier if we had an 'end date', grim as that sounds.
 

Dutchman

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May 26, 2017
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How is your recovery going, Peter? If you are not feeling well or experiencing pain then it’s fair enough that you don’t visit Bridget for a few days. She almost certainly doesn’t have any concept of time any more and won’t notice if you don’t visit.

I’d like to challenge your statement that you ‘put’ Bridget in the home as it implies that you had a choice and took the decision lightly whereas in reality her move to the home was caused by her complex needs which could no longer be met at home. I therefore feel that your decisions around visiting should not be driven by a misplaced sense of guilt / feeling that you have forced Bridget to leave her home. The care home is the best place for her now and was when it was decided that she needed to move into residential care.

It’s natural to have a maelstrom of feelings in this situation including some that we may be reluctant to articulate.

Be kind to yourself
How is your recovery going, Peter? If you are not feeling well or experiencing pain then it’s fair enough that you don’t visit Bridget for a few days. She almost certainly doesn’t have any concept of time any more and won’t notice if you don’t visit.

I’d like to challenge your statement that you ‘put’ Bridget in the home as it implies that you had a choice and took the decision lightly whereas in reality her move to the home was caused by her complex needs which could no longer be met at home. I therefore feel that your decisions around visiting should not be driven by a misplaced sense of guilt / feeling that you have forced Bridget to leave her home. The care home is the best place for her now and was when it was decided that she needed to move into residential care.

It’s natural to have a maelstrom of feelings in this situation including some that we may be reluctant to articulate.

Be kind to yourself.
You’re right of course that I had no control of the decline with dementia. In the end the decision was taken out of my hands because she simply didn’t want me or the home she’d lived in for 20 years. If not the home it would probably have been a hospital because she was ill and getter more ill each moment.

I suppose guilt just remains in some variety or other. I judge myself harshly.
 

Thethirdmrsc

Registered User
Apr 4, 2018
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Hi @Dutchman i envy anyone who has there head screwed on. I visited today as our care home is open again, and go 3 times a week. I am sure that will be another hurdle to jump when he no longer recognises me, and I cannot as yet imagine what that will be like, and I may drop a visit, I don’t know. I still take one day at a time. We all judge ourselves harshly, and sometimes it doesn’t matter what people tell us, we all think the worst of ourselves. But be kind to yourself.
 

Dutchman

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May 26, 2017
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Hi @Dutchman i envy anyone who has there head screwed on. I visited today as our care home is open again, and go 3 times a week. I am sure that will be another hurdle to jump when he no longer recognises me, and I cannot as yet imagine what that will be like, and I may drop a visit, I don’t know. I still take one day at a time. We all judge ourselves harshly, and sometimes it doesn’t matter what people tell us, we all think the worst of ourselves. But be kind to yourself.
Hello @Thethirdmrsc. It’s so so difficult isn’t it.
I’m sure you’ll make the most of the time you have while he still recognises you.

For me it happened over a weekend ….Friday she knew me Monday she didn’t. Maybe another mini stroke, who knows. But I clung on to a normal life as much as I could but after that I was just firefighting.

Please try to put things in place as things deteriorate so the support is there when you need it. I tried to cope on my own but you’ll never win against the evil of dementia. At least the care home has all the professionals there to help you. Lean on them.
God bless.peter
 

Dutchman

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May 26, 2017
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Devon, Totnes
I want to say how I try to make sense of things.

In those quiet times, and especially at night when I can’t sleep, I try to imagine and take myself back to those awful dementia times when Bridget was getting worse and worse. I find comparing those months and years to now a way of making sense of it and a partial resolution. Doesn’t always work!

I often feel lonely now and at a loss of what to do all day, but when she was here in those last years we did very little apart from a drive out for breakfast and then home and looking at TV all day. And as a couple we really didn’t need other people so much. I find that a lot, that couples tend to rely on each other and that’s enough until you find yourself on your own.

So, we used to drive somewhere, a town or by the sea, but she struggled to be interested. In company she was anxious and wanted to leave early. A meal out was impossible because of no decision over the menu and most of the food was left. You all know there are a thousand of other things I could mention that dementia affected. No washing or teeth cleaning, no interest in cooking or household stuff, no getting undressed, no interest in me.
I admit I hated her at times for making my life a misery. I wished at times that she’d just disappear and I could lead a normal life. I used to plan a life for myself while she was sitting next to me. I got so angry and shouted and swore at her.
Now that I understand those times better I feel just love for her and so sad that she struggled for so long.
 

CAL Y

Registered User
Jul 17, 2021
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I want to say how I try to make sense of things.

In those quiet times, and especially at night when I can’t sleep, I try to imagine and take myself back to those awful dementia times when Bridget was getting worse and worse. I find comparing those months and years to now a way of making sense of it and a partial resolution. Doesn’t always work!

I often feel lonely now and at a loss of what to do all day, but when she was here in those last years we did very little apart from a drive out for breakfast and then home and looking at TV all day. And as a couple we really didn’t need other people so much. I find that a lot, that couples tend to rely on each other and that’s enough until you find yourself on your own.

So, we used to drive somewhere, a town or by the sea, but she struggled to be interested. In company she was anxious and wanted to leave early. A meal out was impossible because of no decision over the menu and most of the food was left. You all know there are a thousand of other things I could mention that dementia affected. No washing or teeth cleaning, no interest in cooking or household stuff, no getting undressed, no interest in me.
I admit I hated her at times for making my life a misery. I wished at times that she’d just disappear and I could lead a normal life. I used to plan a life for myself while she was sitting next to me. I got so angry and shouted and swore at her.
Now that I understand those times better I feel just love for her and so sad that she struggled for so long.
@Dutchman . I think that the loneliness isn’t about having someone to do things with. It’s about having someone to do nothing with.
I miss that quiet companionship.
 

Andy54

Registered User
Sep 24, 2020
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I think that the loneliness isn’t about having someone to do things with. It’s about having someone to do nothing with.
I miss that quiet companionship.
Quite, and also to talk about and share the things you have done independently of each other
 

Thethirdmrsc

Registered User
Apr 4, 2018
654
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@Dutchman . I think that the loneliness isn’t about having someone to do things with. It’s about having someone to do nothing with.
I miss that quiet companionship.
That quote in Afterlife, and I can’t watch season 3 yet, says “I would rather do nothing with him, than something without him.”
 

Dutchman

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May 26, 2017
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Devon, Totnes
I visited today and I spoke to her of what you all have said. She doesn’t understand but that doesn’t matter as I chatter away anyway. I said remember we used to just sit, you doing a puzzle maybe, me reading, just quietly sitting comfortable just together. That’s companionship and the easiness of a good relationship. And we took it for granted it would always be this way.
 

cumbria35

Registered User
Apr 24, 2017
85
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Most times when I visit I take in more of my OH's 'things' e.g. his Queen's Scout Certificate and photo of him receiving it from the Chief Scout (which sparked a conversation with the visiting Podiatrist who was also a QS. I have started a photo album for him and take in around a dozen photos at a time, which we look at and then put in the album, adding the names date and place. The activities coordinator, whose father was a dance band drummer, persuaded me to take in OH's drumsticks and snare drum. He ignored it for about a week but has now started drumming along when there are entertainers in or CDs played. He also has his own, brought from home, riser chair in the lounge and various treasured possessions in his room. This week I have been swapping some of his summer weight clothes for warmer ones.

Usually, if the weather allows, we go for a walk round the gardens, hand in hand. If it is wet we either join in any activities or sit together in the wee conservatory. I take him wee treats such as chocolate or plums from our garden, which he thinks are contraband and scoffs when no one is looking. OH seems to think I also live in the Care Home, but in a different unit. He wishes that we shared a room, but has worked out that we cannot as all the rooms only have single beds. Yesterday, he was cheery and full of fun, today he was miserable and kept nodding off, so I didn't stay long. It is by no means perfect but 100 x better than when he was at home and I was sleep deprived and getting more and more frustrated by his incontinence, same questions, over and over and following me about like my shadow.

Treasure that recognition, hug and kiss when you visited, I hope there are many more hugs and kisses to come.
I know the feeling of leaving my husband in the care home, he sometimes asks if he is staying there and I say I may be back later as he will have forgotten when I have left. I also take treats and a piece of cake and go and get a coffee for. Other of us to have together. Some days he knows me and others not I also take a few photos of places we have been and made a scrap book of his life and interests and photosmof all members of the family. Sadly he can not recognise the great grandchildren as he on.y saw some of the younger ones an odd time or two. Such a sad disease which leaves veryblittle you can do but to make the most of your time together and have a hug (when covid allows) it has made life much harder and miserable. Long dark evenings and tears but thankful he is still here but very hard and sad to watch the deterioration.
 

Thethirdmrsc

Registered User
Apr 4, 2018
654
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Since my husband can’t now stand up, it feels awkward bending over him and trying to hug. I miss the full on arms around me hug, patting my bum! I miss being enveloped in his arms, and I know I will never feel that lovers hug again. And that’s sad.
 

Dutchman

Registered User
May 26, 2017
1,780
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74
Devon, Totnes
Since my husband can’t now stand up, it feels awkward bending over him and trying to hug. I miss the full on arms around me hug, patting my bum! I miss being enveloped in his arms, and I know I will never feel that lovers hug again. And that’s sad.
I try to hug Bridget but she recoils because she doesn’t understand this level of contact. It’s been so long since she hugged me with feeling that I’ve forgotten the warmth and comfort it brought.
And that’s standing there, never mind the hugs, the non sexual loving hugs when lying together in bed. We were safe from the world and it’s problems
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Hello everyone. Didn’t sleep much last night due to continuing discomfort from hernia operation and this is happening every night since the 12th of this month. So I’m a bit washed out.

I went to see Bridget yesterday and she’s well looked after, remembers nothing ( much prompting by me), eats reasonably well and is generally fit considering the dementia. So I’m taking a day out and, as I’m feel a little low, feel no uneasiness about skipping a day. When I sit with her I’m all scrunched up leaning over trying to feed her and this aggravates the wound site.
Currently in bed with my cat curled up purring.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,208
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High Peak
Hello everyone. Didn’t sleep much last night due to continuing discomfort from hernia operation and this is happening every night since the 12th of this month. So I’m a bit washed out.

I went to see Bridget yesterday and she’s well looked after, remembers nothing ( much prompting by me), eats reasonably well and is generally fit considering the dementia. So I’m taking a day out and, as I’m feel a little low, feel no uneasiness about skipping a day. When I sit with her I’m all scrunched up leaning over trying to feed her and this aggravates the wound site.
Currently in bed with my cat curled up purring.
I know it's a small thing, Peter, but I can't help noticing how well your cat has settled in with you. The two of you are clearly a good match! I'm sure she offers you some solace.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Just come back from the doctor who saw me quickly and I have additional medication. Let’s just say there have been further complications since my surgery 3 weeks ago.

I’m writing to share the feeling of misery that I experience when I have to do all this on my own. Towards the end Bridget was unable empathise with anyone else’s problems. And now she’s in someone else’s world. Dementia robs away fellow feeling, but if she was still mentally able I could at least talk it over with her. It’s so much easier when you have someone to fuss over you, to drive to get something, to encourage and sympathise.
I’ve a lot on my plate and I don’t like it😡
 

Old Flopsy

Registered User
Sep 12, 2019
312
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Hi @Dutchman I am sorry to hear that your recovery is not as straightforward as you had hoped. Let's hope sharing the misery helps you.

I understand too well the feeling that you are now 'on your own', I feel this more than ever now my OH has passed.
 

blackmortimer

Registered User
Jan 2, 2021
296
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Hello @Dutchman. I haven't posted for a while because like you I'm in a state of recovery and I know exactly how you feel and was moved by your recent post because I know just how you feel. It's hard after so many years of marriage not just having someone to talk to, to moan at maybe but above all just to be there. I can't offer a magic bullet but I've learnt very quickly to try to be positive, to make small but achievable goals and ask for help if you need it. I was lucky in that here we have a dedicated stroke recovery team consisting of physios, dieticians and speech and language therapists who have been a wonderful help to me in getting back (literally!) on my feet and able to face the future. Remember that there are good friends here who do listen. You're not alone. God bless.