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Dementia’s journey

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Me Again😕. Just sitting in the car in the homes car park after seeing Bridget. She has to be encouraged to turn and look at me but once she does she smiles. Probably at the smiling idiot man waving and smiling at her trying not to be sad.

I’ve lost so much. I would be so easy not to visit ( going for an inside visit tomorrow) but I believe I owe it to her in some way ( sorry getting a bit tearful now. Give me a moment). It’s the decline in her ability to communicate, her gait when standing and walking, the increase in vacancy. All put together suggests a question of how long can this carry on .

If she was bed bound with cancer but we could talk together about our lives, oh how different that would be. All the sadness would be there but we’d have each other still.

peter
 

Dutchman

Registered User
May 26, 2017
1,221
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73
Devon, Totnes
W
Keep posting @Dutchman. I hope your visit goes OK. I’m feeling very down today about not being able to visit my husband when I want to. It’s just as if he’s in prison. Not that I have had experience of that scenario I hasten to add! It just goes against all instinct to be there for him even though he has no idea who I am.
why can’t you visit? Are there restrictions? Sorry I’ve missed something probably in previous posts❤️Peter
 

notsogooddtr

Registered User
Jul 2, 2011
994
0
Me Again😕. Just sitting in the car in the homes car park after seeing Bridget. She has to be encouraged to turn and look at me but once she does she smiles. Probably at the smiling idiot man waving and smiling at her trying not to be sad.

I’ve lost so much. I would be so easy not to visit ( going for an inside visit tomorrow) but I believe I owe it to her in some way ( sorry getting a bit tearful now. Give me a moment). It’s the decline in her ability to communicate, her gait when standing and walking, the increase in vacancy. All put together suggests a question of how long can this carry on .

If she was bed bound with cancer but we could talk together about our lives, oh how different that would be. All the sadness would be there but we’d have each other still.

peter
Hi Peter, I am sorry things are still so difficult for you. I get the impression that you are carrying a huge burden of guilt, a lot of us do.I hope in time you can 'accept' that things happen, it is often no one's fault, just circumstances and luck(good or bad) No one's fault that Bridget has dementia or that she is in a nursing home. One thing I try to remember is that we can't undo or change the past but we can try to make the most of the future.Take care
 

None the Wiser

Registered User
Feb 3, 2020
222
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why can’t you visit? Are there restrictions? Sorry I’ve missed something probably in previous posts❤️Peter
I’m allowed two one hour visits a week, that have to be scheduled. We have to meet in the day room and be accompanied by a member of staff. They don’t have the staff for more visits. Visiting varies hugely from one care home to another. My sister in law is in a home where we can visit her in her room and as many times a week (within reason) that we want. It’s all so unfair.
 

blackmortimer

Registered User
Jan 2, 2021
128
0
Me Again😕. Just sitting in the car in the homes car park after seeing Bridget. She has to be encouraged to turn and look at me but once she does she smiles. Probably at the smiling idiot man waving and smiling at her trying not to be sad.

I’ve lost so much. I would be so easy not to visit ( going for an inside visit tomorrow) but I believe I owe it to her in some way ( sorry getting a bit tearful now. Give me a moment). It’s the decline in her ability to communicate, her gait when standing and walking, the increase in vacancy. All put together suggests a question of how long can this carry on .

If she was bed bound with cancer but we could talk together about our lives, oh how different that would be. All the sadness would be there but we’d have each other still.

peter
I know exactly how you must feel, Peter and I still think you're very brave to carry on visiting even though it's so tough for you. As I've said before, you're a braver man than me. I feel I should visit (when the new rules permit) but I dread the rejection I may well encounter. I want to remember Margaret as she was before all this started so long ago and sometimes I manage it and feel better for a while, but then the dark cloud of the present situation descends and I just crumble. My daughter's coming this week both to visit Margaret and then come on to see me so at least she'll be able to give me an update and tell me if I'm missed - frankly I'm not sure. The staff at the home are non-committal as to whether Margaret even remembers me - I fancy they're being kind and that in truth she doesn't or if she does only in a negative way. Any way we'll see.

Thanks for the update on Poppy. It sounds as if she's settling in well. Our dog has never slept in her bed since she was a puppy always preferring a sofa to herself, so the bed is in the car!

It's a dull grey and rather chilly day here - much in keeping with my mood.

God bless,
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Hi @blackmortimer. Thing is, I don’t see myself as brave. Many have said “I don’t know how you cared for Bridget at home for so long”. I don’t know if it’s a mixture of love, duty, guilt, trying to redress wrongs during those dementia behaviour years. Probably a mixture of it all.

I just feel better if I go rather than feeling I’m letting her down if I don’t go. I know she doesn’t remember my visits or me but what else can I do? Everyone is completely different in how they get on with this and that special relationship we had. I think we both know there’s little we can say to each other that would dramatically change our feelings for the better, so we lurch from day to day and hope that, inch by inch, we move some way out of this terrible grief.

Arm round you mate
Peter
 

northumbrian_k

Registered User
Mar 2, 2017
1,309
0
Newcastle
Hi @Dutchman It is a long time since you heard from me. My wife is still content and safe in her care home and I look forward to my visits. She may not always know who I am but, as one of the care staff said, if she allows me to hold her hand or play 'this little piggy' then she must know at some level that she trusts me. Our old life is gone and the new one is not what I would want but I have embraced it as that is all there is.

I hope you too can achieve some reconciliation and peace, knowing that you have done everything for Bridget and that she is in the best place.
 

None the Wiser

Registered User
Feb 3, 2020
222
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Dutchman

Registered User
May 26, 2017
1,221
0
73
Devon, Totnes
Hello @northumbrian_k good to hear from you.

Ive just come indoors for a sit down after working in the shed putting up shelving . It only takes the slightest thing and I’m in tears because I’m lonely for my Bridget. I miss her so much. She would have come to see how was getting on, possible cup of tea. So i listen to some music while I’m working and Neil Young is singing “ I’m still in love with you, on this harvest moon” and I have to stop because I cant see for tears. How does any one else handle this loneliness and loss because if you’ve got a way I’d like to hear it?

I miss her so very much that sometimes I wish I could stop all this heartache for good. ive just been told my family have arrived and want to come over to see me but I don’t have the emotional space for this. I hate this loneliness and I hate losing Bridget.

Sometimes it’s impossible to grit my teeth and get on with it. So we’re destined for loneliness for rest of our lives - well I believe I am because i can’t see myself ever getting that close to someone again.

peter
 

kindred

Registered User
Apr 8, 2018
2,674
0
Hello @northumbrian_k good to hear from you.

Ive just come indoors for a sit down after working in the shed putting up shelving . It only takes the slightest thing and I’m in tears because I’m lonely for my Bridget. I miss her so much. She would have come to see how was getting on, possible cup of tea. So i listen to some music while I’m working and Neil Young is singing “ I’m still in love with you, on this harvest moon” and I have to stop because I cant see for tears. How does any one else handle this loneliness and loss because if you’ve got a way I’d like to hear it?

I miss her so very much that sometimes I wish I could stop all this heartache for good. ive just been told my family have arrived and want to come over to see me but I don’t have the emotional space for this. I hate this loneliness and I hate losing Bridget.

Sometimes it’s impossible to grit my teeth and get on with it. So we’re destined for loneliness for rest of our lives - well I believe I am because i can’t see myself ever getting that close to someone again.

peter
I read all your posts Peter. my heart aches for how much you miss Bridget. You asked how others cope with the loneliness and loss. Truly, I cope with the aid of this forum and a forum for people who have lost loved ones. This kind of connection gives me some ease from grief and I am always grateful for your contributions.
With love kindred
 

Dutchman

Registered User
May 26, 2017
1,221
0
73
Devon, Totnes
I read all your posts Peter. my heart aches for how much you miss Bridget. You asked how others cope with the loneliness and loss. Truly, I cope with the aid of this forum and a forum for people who have lost loved ones. This kind of connection gives me some ease from grief and I am always grateful for your contributions.
With love kindred
Thank you so much kindred. you’ve always been there for me
peter
 

blackmortimer

Registered User
Jan 2, 2021
128
0
Hi @blackmortimer. Thing is, I don’t see myself as brave. Many have said “I don’t know how you cared for Bridget at home for so long”. I don’t know if it’s a mixture of love, duty, guilt, trying to redress wrongs during those dementia behaviour years. Probably a mixture of it all.

I just feel better if I go rather than feeling I’m letting her down if I don’t go. I know she doesn’t remember my visits or me but what else can I do? Everyone is completely different in how they get on with this and that special relationship we had. I think we both know there’s little we can say to each other that would dramatically change our feelings for the better, so we lurch from day to day and hope that, inch by inch, we move some way out of this terrible grief.

Arm round you mate
Peter
Thanks for that, Peter. Not been feeling too good today.

God bless
 

Dutchman

Registered User
May 26, 2017
1,221
0
73
Devon, Totnes
I don’t know about you but I’m surrounded by books on grief which I’ve collected since Bridget first left here. Somewhere I’m thinking there must be something that gives clarity and some comfort to all we’re going through. In all the books I’ve found there is very little that shifts my emotions to the better.

They explain, warn you, have practical advice but nothing of how to handle the explosion of grief I felt yesterday that came out of the blue

There’s lots of advice out there but this Forum is the “coal face” of it all, written by people going through the misery day by day. I’m feeling more and more lately that I’m just going to have to “get on with it “.

I’m invited to a birthday party tonight and I’m feeling that I’ll have this disease called “grief “ brought to the gathering. What do I talk about when my whole life is consumed by thoughts of Bridget? I know they’ll feel awkward and I’m thinking that it would be doing them a favour by me not being there. The lone mourner, a curse on society, best keep himself to himself!
 

jennifer1967

Registered User
Mar 15, 2020
4,594
0
Southampton
I don’t know about you but I’m surrounded by books on grief which I’ve collected since Bridget first left here. Somewhere I’m thinking there must be something that gives clarity and some comfort to all we’re going through. In all the books I’ve found there is very little that shifts my emotions to the better.

They explain, warn you, have practical advice but nothing of how to handle the explosion of grief I felt yesterday that came out of the blue

There’s lots of advice out there but this Forum is the “coal face” of it all, written by people going through the misery day by day. I’m feeling more and more lately that I’m just going to have to “get on with it “.

I’m invited to a birthday party tonight and I’m feeling that I’ll have this disease called “grief “ brought to the gathering. What do I talk about when my whole life is consumed by thoughts of Bridget? I know they’ll feel awkward and I’m thinking that it would be doing them a favour by me not being there. The lone mourner, a curse on society, best keep himself to himself!
i would go even for an hour. you might get out of it more than you think. what would Bridget think or want? then you would be able to tell her afterwards which may make it easier on your next visit. she may not understand with words but may pick up the atmosphere.
 

Dutchman

Registered User
May 26, 2017
1,221
0
73
Devon, Totnes
Thanks for that, Peter. Not been feeling too good today.

God bless
Hi @blackmortimer . Hope you’re feeling a bit better today but I suspect, like me, feelings come and go.
I’ve just come back from a birthday dinner party where everyone was having a great time but I felt out of it and it probably showed.

One woman who’d lost her husband years ago said that I’ve got to cut myself some slack, and really Peter, you’ve just got to accept it and get on with it. Easy for her to say as she’s been without him for over 20 years. Dementia never lets you go and I can’t “get over it” or find it that easy to “ cut myself some slack”.

So I’m home and feel somewhat shameful that I never thought of Bridget during some of the dinner.
Peter
 

blackmortimer

Registered User
Jan 2, 2021
128
0
I'm not so sure it is shameful, Peter. It calls to my mind the last line of Christina Rossetti's famous poem "Remember: which goes (if I remember correctly) ".....and if you will, remember and, if you will, forget". In other words it's not necessarily a betrayal to "forget for a while and afterwards remember" - just a suggestion that, in the context of the poem, you may forget someone loved who has died, in the hurly-burly of life and when it has subsided you realise and then remember and that's fine. The important thing is that in the wider context she is still there and always will be.

I've just been to the hospital for a blood test. In all the faffing about parking, hand sanitising, finding the right place and so on, I forgot about Margaret but once I had found the right place, checked that it was the right time and settled down to wait I remembered her in the context of how she hates hospitals, doctors and anything medical and I think that's how it works - at least that's how it works for me! So today's message is don't beat yourself up or in one of today's overworked cliches don't let the perfect be the enemy of the good.

I'm sorry. I've rambled on a bit. Hope you understand. God bless.
 

jennifer1967

Registered User
Mar 15, 2020
4,594
0
Southampton
im glad you did go to the birthday party and it doesnt matter what other people say, its up to them. would Bridget have enjoyed or want you to go? hows poppy?
 

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