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Dementia’s journey

Suesue.G.

Registered User
Aug 9, 2020
66
0
I am lucky, in that my OH is still at home with me. But,I relate to the feeling of not wanting to go back into the house, sometimes. Apart from, either the t.v, game shows and Escape to the Sun, or Country music on Alexa, the house is usually silent. My OH has started having problems speaking coherently, and, some days can pass with very little verbal interaction, between us. The other day, the only time I actually had a conversation, of sorts, was when I collected his prescription from the Pharmacy. The shape of things to come, maybe
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
I am lucky, in that my OH is still at home with me. But,I relate to the feeling of not wanting to go back into the house, sometimes. Apart from, either the t.v, game shows and Escape to the Sun, or Country music on Alexa, the house is usually silent. My OH has started having problems speaking coherently, and, some days can pass with very little verbal interaction, between us. The other day, the only time I actually had a conversation, of sorts, was when I collected his prescription from the Pharmacy. The shape of things to come, maybe
I can relate to that. Me and Bridget hardly spoke to each other towards the end but it wasn’t her fault as her dementia had destroyed her capacity to form words. ( she used to be a right old chatterbox) . Now I have to guess what she means.

It’s conversation I miss a lot. I seem to talk a lot in company just to keep in practice. Probably bore people to tears.
 

Bettysue

Registered User
Mar 21, 2020
141
0
I relate to the lack of any conversation. My partner has lost the ability to use or understand language. It’s so so sad. I sometimes feel that when I meet people I rabbit on but it’s hard spending the day without any meaningful chat.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
It’s interesting in a sad way when I think of Bridget’s loss of word forming. It started with not being able to find the right word. Then she lost being able to write words. Then she was frustrated in social gatherings because she couldn’t join in.
I often wonder what she now thinks and feels when she tries so hard to communicate. The cruelty of dementia means you become more and more isolated. At least she has the busyness of the home around her which is more than I could give here at home.

Towards the end all we did, more or less not talking, was to get breakfast and then watch tv all day till she went to bed early afternoon.
I visit today and I pray it’s okay
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,275
0
Kent
When I went to visit my husband @Dutchman, I always took him a food treat, something he was unlikely to get in the care home. Maybe it was a blush pear, one of his favourites, or some grapes , some special cultural food or even a sandwich of home made pate which I left for his tea.

It was always a magic moment when I produced this food and brought a smile to his face.

I used to ask questions which only needed yes or no answers; Are you comfortable? Are you hungry? Would you like a drink? When language goes, it`s up to us to find alternative means of communication.

Once the niceties had finished I would sit by his side, holding his hand, maybe reading or watching television with him in companionable silence, as we would have been at home.

He was always in the communal sitting room and was never completely alone. When activities were on offer I joined in. I was always friendly towards the staff and other residents but my husband was my first priority.

When it was time to go, I told him I was going to the shops and asked if he needed anything. Or I would tell him I had to bring the washing in before it rained. All usual activities he had been used to all our married lives.

This helped my visits to be positive experiences for both of us.

It takes a while to find strategies to help us cope but once they are off to a fine art, visits can become pleasurable and ressuring.
 

Andy54

Registered User
Sep 24, 2020
165
0
It’s interesting in a sad way when I think of Bridget’s loss of word forming. It started with not being able to find the right word. Then she lost being able to write words. Then she was frustrated in social gatherings because she couldn’t join in.
I often wonder what she now thinks and feels when she tries so hard to communicate. The cruelty of dementia means you become more and more isolated. At least she has the busyness of the home around her which is more than I could give here at home.

Towards the end all we did, more or less not talking, was to get breakfast and then watch tv all day till she went to bed early afternoon.
I visit today and I pray it’s okay
I've had to cut short a few visits recently as D has become very restless & agitated, I am wondering if she is just getting frustrated because I can't understand what she is trying to say to me. It does worry me that whatever is left of the old D is trapped and unable to let me know she is still there.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
When I went to visit my husband @Dutchman, I always took him a food treat, something he was unlikely to get in the care home. Maybe it was a blush pear, one of his favourites, or some grapes , some special cultural food or even a sandwich of home made pate which I left for his tea.

It was always a magic moment when I produced this food and brought a smile to his face.

I used to ask questions which only needed yes or no answers; Are you comfortable? Are you hungry? Would you like a drink? When language goes, it`s up to us to find alternative means of communication.

Once the niceties had finished I would sit by his side, holding his hand, maybe reading or watching television with him in companionable silence, as we would have been at home.

He was always in the communal sitting room and was never completely alone. When activities were on offer I joined in. I was always friendly towards the staff and other residents but my husband was my first priority.

When it was time to go, I told him I was going to the shops and asked if he needed anything. Or I would tell him I had to bring the washing in before it rained. All usual activities he had been used to all our married lives.

This helped my visits to be positive experiences for both of us.

It takes a while to find strategies to help us cope but once they are off to a fine art, visits can become pleasurable and ressuring.
@Grannie G you really are a tonic. All good advice and I’ll think in a minute what I can do differently.
Thank you❤️
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
You know what, I think in the end it’s about accepting things and learning to live with the way things are. And this I find very difficult to do.
A large part of me still wants my old Bridget back even though she was destroyed by dementia here at home and didn’t know me.
I try relive my relationship with her when I visit and it rebounds back on me, of course it does.

I’ve just returned home from a Christmas meal with a walking group and it was only at the end did I mention that Bridget’s in a home. Otherwise it’s the kiss of death to any conversation. Otherwise I think I got through it just about okay.,
I miss you Bridget, I miss the companionship and sharing. God bless.
 

Dutchman

Registered User
May 26, 2017
1,820
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74
Devon, Totnes
I’m not writing this for a response. I’m just writing from a place I’ve never thought I’d be in. Apart from seeing Bridget the have little to determine my week. No one visits, family seldom phone and although I do have friends it just seems to be me and the silence once more. I wonder that without seeing Bridget if it there’s much point in continuing.

I get no love love and companionship from her and those I know have their own lives and it’s so easy for me just to stay at home doing very little. To be honest I often go to bed early as at least it’s warm and comforting and once asleep there’s another 8 hours got rid of. What sort of life is this? So what’s the point?

I hang my heart out here for all to see and what can anyone do? I’ve said it before that we did very little when together but we were together and I had a purpose albeit coping with dementia. Once she’s gone God knows what I’ll do?
Sorry guys but I feel miserable tonight.
 

Andy54

Registered User
Sep 24, 2020
165
0
Me too, this is a sad sort of club we are forming, don't think it will have a wider appeal.
 

Chris100

Registered User
Nov 19, 2021
54
0
Don’t you just hate the adverts on tv where a family is so enjoying their new kitchen/ sofa/ car, looking forward to the forthcoming holiday where all are going to have such a wonderful time full of promise and happiness. I know it’s to sell products but we here know that grief sits waiting round the corner.

I, on the other hand, am dreading the enforced jollity around this time of year when I remember how it was. Bridget was the centre of our Christmas and all I can do this year is to be there at the home making her (and the staff) Christmas as happy as it can be.
 

Violet Jane

Registered User
Aug 23, 2021
884
0
I think that it’s a huge adjustment moving from being part of a happy couple to being on one’s own. It’s complicated in your case, Peter, because your partner is still alive and so it’s not a ‘simple’ case of ‘moving on’. I had a friend who lost her husband suddenly when he was in in his early 70s (she was in her late 60s) and I remember her saying to me that you couldn’t just do simple things such as going out for a coffee with her husband any more; you had to arrange this with someone else. As you have mentioned several time previously, it’s the easy company / companionship that you miss. When you are part of a happy couple there is always someone there. When you are (unhappily) single you have to seek out company. It’s really not easy.
 

Chris100

Registered User
Nov 19, 2021
54
0
I think that it’s a huge adjustment moving from being part of a happy couple to being on one’s own. It’s complicated in your case, Peter, because your partner is still alive and so it’s not a ‘simple’ case of ‘moving on’. I had a friend who lost her husband suddenly when he was in in his early 70s (she was in her late 60s) and I remember her saying to me that you couldn’t just do simple things such as going out for a coffee with her husband any more; you had to arrange this with someone else. As you have mentioned several time previously, it’s the easy company / companionship that you miss. When you are part of a happy couple there is always someone there. When you are (unhappily) single you have to seek out company. It’s really not easy.
Sad reflections, but perceptive.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
I think that it’s a huge adjustment moving from being part of a happy couple to being on one’s own. It’s complicated in your case, Peter, because your partner is still alive and so it’s not a ‘simple’ case of ‘moving on’. I had a friend who lost her husband suddenly when he was in in his early 70s (she was in her late 60s) and I remember her saying to me that you couldn’t just do simple things such as going out for a coffee with her husband any more; you had to arrange this with someone else. As you have mentioned several time previously, it’s the easy company / companionship that you miss. When you are part of a happy couple there is always someone there. When you are (unhappily) single you have to seek out company. It’s really not easy.
Thank you @Violet Jane for these insights and I agree with you that things are so much easier when you’re part of a happy couple just in each other’s company.
For instance. I’ve hurt my leg and I’m finding it difficult to get about and Bridget being here would have meant I could rest and she would have filled in the gaps. Tea, kisses, encouragement and care. We would do the same for each other.
I just feel sorry for myself now as there’s no one else to moan to😡
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
I’m a quandary after visiting Bridget today.

During our time together I always tell her I love her, we kiss, she smiles and I tell her how much I miss her. I know she’s in the right place - I couldn’t do what they do on my own.

But today, without being prompted in any way, just as I was sitting down next to her, she said with feeling” I love you”.
( she can’t usually even put a word together). I mean, this just broke my heart and I immediately start imagining her recovery back to normal, gradually getting better and me taking her home.
I miss her so much and to be told she loves me means the world but she could, of course, be parroting what I say and, of course, I could be reading too much into this.
It’s a dilemma because on one hand I want her affection but then I don’t want her to feel lonely for me because I leave.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
I spoke to an Admiral Nurse yesterday ( I needed to speak to someone) about these awful confusion of emotions that I feel when visiting Bridget. All very normal and expected she emphasised, as my grief is not being resolved in any way. Complicated grief, in that we are still a couple in many ways but, of course, I feel that much more than Bridget and there’s nothing I can do to dramatically change the situation.

So I go on like we all do just getting through the day as best we can. One thing I can say though is that over time I’m appreciating others grief and the terrible sadness we all go through because of all the varieties of what dementia brings. This Forum has made me feel part of a family of people who struggle to do the best they can in extraordinary circumstances.

i also spoke to my lovely neighbour last night who helped me and Bridget in Bridget’s last few months here at home. Experiencing first hand what me and Bridget were going through she said I had courage and stuck to it for too long. But I’ve never felt that was the case. I did what I did for Bridget and still hold her in my heart because I loved her then and still love her now. I just did it. And I never for one moment thought she’d end up in a home. I suppose I thought we’d go on for ever with me just coping daily. So stupid, but to face the possibility of losing her wasn’t even on my radar. So when that day came when she was taken away I was in complete shock and an emotional wreck.

Two years ago. Seems a life time.
 

update2020

Registered User
Jan 2, 2020
275
0
I spoke to an Admiral Nurse yesterday ( I needed to speak to someone) about these awful confusion of emotions that I feel when visiting Bridget. All very normal and expected she emphasised, as my grief is not being resolved in any way. Complicated grief, in that we are still a couple in many ways but, of course, I feel that much more than Bridget and there’s nothing I can do to dramatically change the situation.

So I go on like we all do just getting through the day as best we can. One thing I can say though is that over time I’m appreciating others grief and the terrible sadness we all go through because of all the varieties of what dementia brings. This Forum has made me feel part of a family of people who struggle to do the best they can in extraordinary circumstances.

i also spoke to my lovely neighbour last night who helped me and Bridget in Bridget’s last few months here at home. Experiencing first hand what me and Bridget were going through she said I had courage and stuck to it for too long. But I’ve never felt that was the case. I did what I did for Bridget and still hold her in my heart because I loved her then and still love her now. I just did it. And I never for one moment thought she’d end up in a home. I suppose I thought we’d go on for ever with me just coping daily. So stupid, but to face the possibility of losing her wasn’t even on my radar. So when that day came when she was taken away I was in complete shock and an emotional wreck.

Two years ago. Seems a life time.
As you know, my husband died a few days ago. Before that I was in the same limbo as you. I think the nurse is right about living in a state that is unresolved is very very hard. Now that my state is more normal I feel that I fit more easily and comfortably into other people’s experience and they are very very kind. Things are now resolved. In other ways they have suddenly become completely open - he no longer needs to be the centre of every thought and action - and that I cannot cope with at all. We’ll do the funeral, then Xmas and then ???????
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
Just signing in to sign out. What a lovely picture of Bridget @Dutchman. Very unexpectedly my husband died and is now at peace after 16 years of growing torment. He was exactly 65.5 years (to the very day). Love to you all continuing with this life. I have no idea what comes next. xxx
I’ve gone back to your previous post. I’m many respects I’m glad that your life is more straightforward and you can find a resolution to all of this. That doesn’t reduce the sadness of your loss of course but, as you say, he’s now at peace. I envy your peace and the continued peace to come. God bless