Dementia’s journey
- Thread starter Dutchman
- Start date
Me again
I’ve always called my posts a dementia journey which assumes a start and eventual finish. However I’m reaching a stage where I don’t want progress ( whatever means).
It’s as if I don’t want to give up the unhappiness I feel because it’s become my normal for so long ( a comfort blanket?) and to move to a lighter place of some contentment would mean a betrayal of my loss for Bridget. Does this make sense?
I find I forget Bridget for a moment. I get lost in a film, a little project, the garden, and then I feel shame that I’m not aching with missing her. There’s many who would love me to be better ( whatever that means) but I feel a kind of commitment to grieving. It sort of gives my life a meaning and to be happier would in some way nullify the loss I’ve suffered.
hope this make some sense
( ??dementia)
Peter
I’ve always called my posts a dementia journey which assumes a start and eventual finish. However I’m reaching a stage where I don’t want progress ( whatever means).
It’s as if I don’t want to give up the unhappiness I feel because it’s become my normal for so long ( a comfort blanket?) and to move to a lighter place of some contentment would mean a betrayal of my loss for Bridget. Does this make sense?
I find I forget Bridget for a moment. I get lost in a film, a little project, the garden, and then I feel shame that I’m not aching with missing her. There’s many who would love me to be better ( whatever that means) but I feel a kind of commitment to grieving. It sort of gives my life a meaning and to be happier would in some way nullify the loss I’ve suffered.
hope this make some sense
( ??dementia)
Peter
Hello @Dutchman
It sounds to me as if you are inflicting the suffering you feel your wife is experiencing on yourself.
I believe your wife is no longer experiencing the suffering she endured before going into residential care and you are allowed to take pleasure in simple things without feeling guilty.
I say this from my own experiences. My husband was so contented in his care home and so well looked after, the burden for his care was lifted when I realised the care home was doing a better job than I could at that stage.
It doesn`t mean I started to live the high life. I visited on alternate days and we enjoyed each others` company much more than we did when he was at home with me and presenting with challenging behaviours.
Meanwhile I got on with my life. My husband was still on my mind and in my heart but I knew I had done the best for him.
I know you are unable to visit as you would wish because of the virus but this is not your fault and feeling wretched won`t make it better.
It sounds to me as if you are inflicting the suffering you feel your wife is experiencing on yourself.
I believe your wife is no longer experiencing the suffering she endured before going into residential care and you are allowed to take pleasure in simple things without feeling guilty.
I say this from my own experiences. My husband was so contented in his care home and so well looked after, the burden for his care was lifted when I realised the care home was doing a better job than I could at that stage.
It doesn`t mean I started to live the high life. I visited on alternate days and we enjoyed each others` company much more than we did when he was at home with me and presenting with challenging behaviours.
Meanwhile I got on with my life. My husband was still on my mind and in my heart but I knew I had done the best for him.
I know you are unable to visit as you would wish because of the virus but this is not your fault and feeling wretched won`t make it better.
It is a journey and there will be an end
I completely understand you clinging to your feelings of misery and guilt - I think it has become symbolic of your link to Bridget. She continues to drift away and you can't change that but if you hang onto your associated feelings it's like keeping a hold on her.
Your feelings will not go away but they will gradually change. They will 'morph' into something less acute, more in the background. I think that is already happening - the feelings you express now are subtlely different to how you were a year or more ago.
Your commitment to Bridget will not change, but the associated feelings will - gradually.
Don't feel guilty, we humans are programmed to pick ourselves out of the abyss of grief and loss and move on with our lives. The human race would have died out otherwise. If you feel 'better' sometimes embrace it. It means you are beginning to heal. Maybe ask yourself what Bridget would want for you? I'm sure she would want you to make the best of life as it is now because she loved you.
@notsogooddtr @Jaded'n'faded @Grannie G once again thank you for your support and wise words. Just sitting enjoying the sun while it lasts. Bridget’s doing the same at the moment in the sun room so we’re together somehow.
Peter
Peter
I think I know what you mean, Peter. Perhaps best to try and live in the moment. Like you I find contemplating the end of the journey or indeed even thinking that I'm on a journey somehow destabilising. I've learned to cope with things as they are, Margaret is always with me even though I can't see her and I talk to her. I know exactly what you mean when you say that even the sadness is somehow a comfort. I feel that and don't really want it to go away.
This morning I suddenly thought of Christina Rossetti's famous poem "Remember me" ,so often spoken at funerals as it speaks of the premature death of a loved one. She refers in the first line to "gone far away into the silent land" if I remember it right. I feel that Margaret is in a "silent land" not through death but through dementia. And I shall remember her always.
God bless
This morning I suddenly thought of Christina Rossetti's famous poem "Remember me" ,so often spoken at funerals as it speaks of the premature death of a loved one. She refers in the first line to "gone far away into the silent land" if I remember it right. I feel that Margaret is in a "silent land" not through death but through dementia. And I shall remember her always.
God bless
Today I had to assist the home manager in filling out Bridget’s census form.
We got to the bit about qualifications and work. We were both visibly upset at the shift from someone highly intelligent as a teacher and manager to someone who now wanders the corridors, doesn’t know me and lives completely in the moment. No memory of any past life and a constant look on her face of bewilderment.
I can only use the word cruel in its fullest sense. Dementia is a terminal illness and one that kills the mind and takes away any chance of me communicating with her. Oh for a terminal Illness with her mind intact and I would look after here at home till her dying day because we could talk and reason.
is it any wonder I divert my thinking with films!
Peter
We got to the bit about qualifications and work. We were both visibly upset at the shift from someone highly intelligent as a teacher and manager to someone who now wanders the corridors, doesn’t know me and lives completely in the moment. No memory of any past life and a constant look on her face of bewilderment.
I can only use the word cruel in its fullest sense. Dementia is a terminal illness and one that kills the mind and takes away any chance of me communicating with her. Oh for a terminal Illness with her mind intact and I would look after here at home till her dying day because we could talk and reason.
is it any wonder I divert my thinking with films!
Peter
I couldn't agree more, Peter. The same thought has occurred to me from time to time.
Thanks for the heads up about the Census. I've done mine but it hadn't occurred to me that Margaret will have to be included at the nursing home. I'll gather the information together in anticipation.
God bless
Yesterday I rang the home to find out how Bridget was and as usual they say “ she’s fine, don’t worry ( I do a lot) she just sleeping or walking about” . So I ask about the rest of her day, what happens at night time when she’s ready for bed or in the mornings getting up. I just want some way to visualise what her day and night is like so I can feel closer to her.
I miss her so much that I ache inside with it all and why wouldn’t I? The house stays the same with nothing touched by someone else. It’s terribly lonely here sometimes and I’m afraid of becoming used to my own company. I don’t want to be that person but I have little choice.
Peter
I miss her so much that I ache inside with it all and why wouldn’t I? The house stays the same with nothing touched by someone else. It’s terribly lonely here sometimes and I’m afraid of becoming used to my own company. I don’t want to be that person but I have little choice.
Peter
It’s so hard to put into words. I got up with some enthusiasm to sort stuff out ( overdue) and I’ve just run out of steam. This happens time and time again. I get stuck in then thoughts of Bridget crowd in and I just plonk myself down on the sofa and think sad thoughts. All I touch she touched and I come across little snippets of her writing. We wrote cards all the time to each other to say how lucky we were and how much we loved each other.
The house is becoming just mine now with places I just cannot go near. So many shoes, dresses and clothing she’ll never wear again. I cant ever see a time when I want them to go.
Is this what it’s like to be alone and lonely? I never chose to be this way and never thought I’d experience such unhappiness.
I need to write here no matter if you want to respond as it helps to keep me sane.
The house is becoming just mine now with places I just cannot go near. So many shoes, dresses and clothing she’ll never wear again. I cant ever see a time when I want them to go.
Is this what it’s like to be alone and lonely? I never chose to be this way and never thought I’d experience such unhappiness.
I need to write here no matter if you want to respond as it helps to keep me sane.
Throughout your posts, your love for Bridget shines out. The way you speak about her and your relationship together has often given me pause for thought.
I've been married twice and I'm in another long term relationship now. But regrettably, I have honestly never felt the sort of closeness, unconditional love and devotion you have shared with Bridget. And I wish I had.
Alfred, Lord Tennyson wrote:
I hold it true whate'er befall;
I feel it when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.
He wrote his epic poem - In Memoriam A.H.H. (following the death of a dear friend) over 17 years! Here's a link to the rest of it:
I've been married twice and I'm in another long term relationship now. But regrettably, I have honestly never felt the sort of closeness, unconditional love and devotion you have shared with Bridget. And I wish I had.
Alfred, Lord Tennyson wrote:
I hold it true whate'er befall;
I feel it when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.
He wrote his epic poem - In Memoriam A.H.H. (following the death of a dear friend) over 17 years! Here's a link to the rest of it:
In one sense you're not alone. There are I suspect more than a few of here who are with you. What you say about good intentions to sort stuff out echos with me. I have often started the day with that but quickly found I couldn't do it. Margaret is something of a hoarder and I keep coming across things which she's kept because they meant something at the time and I can't throw them out because throwing them out would be like throwing her out and I could never do that. Likewise she loved clothes and there are two large wardrobes and innumerable drawers full of things she never wore but always intended to, things she wore perhaps once and things going back years which she wore when they were in fashion, then put away always saying "they'll come back into fashion sometime"
I just don't go into those rooms knowing that it's just too sad. But the thought of getting rid of anything - it's just too much. Even should she die before me there's nothing that could go, because as long as her things are here, she's here. I've realised this last year that if anything these are the hard yards of marriage, harder for me at ant rate than anything that's gone before.
God bless
You have hit the spot there with me @blackmortimer. All the clothes have a reminder to them. I moved out of our main bedroom back in 2018 as Bridget was constantly waking me up and then became dreadfully smelly due to self neglect.
I bought her expensive underwear hoping she’d wear it but it’s still in its wrapper.
I hardly go in there now. Other rooms are visited but only to open the windows. So my bedroom is my sanctuary, a cozy place where I probably stay in bed too long. Like you I’ll keep things just as they are because getting rid of them will mean getting rid of part of her.
Bless you, Peter
I bought her expensive underwear hoping she’d wear it but it’s still in its wrapper.
I hardly go in there now. Other rooms are visited but only to open the windows. So my bedroom is my sanctuary, a cozy place where I probably stay in bed too long. Like you I’ll keep things just as they are because getting rid of them will mean getting rid of part of her.
Bless you, Peter
I went for a longish walk today on my own. It gets me put of the house and I feel that at least I’ve accomplished something. Trouble is that it also gives me time to go over all the things that upset me, especially being on my own
I have a vivid and recurring memory of Bridget leaving here for the last time to be driven to the home. They took her away when she wanted to go to her parents , so I wonder what she thought when she arrived at the
home. My poor darling, so confused and anxious. So for the first time in 30 years I was left alone for good with the love of my life separated and into a little room. So difficult to come back from that awful shock of someone you cared for being taken away.
ive been accused by those outside of dementia of being self indulgent and too much self pity. I don’t really care because I can’t change my nature. Anyway, whatever gets me through the days.
I have a vivid and recurring memory of Bridget leaving here for the last time to be driven to the home. They took her away when she wanted to go to her parents , so I wonder what she thought when she arrived at the
home. My poor darling, so confused and anxious. So for the first time in 30 years I was left alone for good with the love of my life separated and into a little room. So difficult to come back from that awful shock of someone you cared for being taken away.
ive been accused by those outside of dementia of being self indulgent and too much self pity. I don’t really care because I can’t change my nature. Anyway, whatever gets me through the days.
Ignore those outside dementia, Peter. They have no idea what it's like. Give yourself permission to be self-indulgent - you're entitled and there's nothing wrong with self-pity. You would pity anyone else who's had to go through what you've gone through and are still going through so, to invert the saying, "do unto yourself as you would have others do to you"!
I often wonder what Margaret thinks of where she is. I got an inkling when she was in the mental health unit that she thought she was back at college. I hope that's still the case because college was a happy time for her. Perhaps Bridget thinks she's back with her parents? If so, it might be comforting.
God bless,
When’s this ever going to go away? . I’m now seeing Bridget in various parts of the house when she was vibrant and noisy and funny. I never hugged her enough. I never loved her enough. Now it’s too late.
I’m also putting people off when they want to walk because the tension between talking and not talking about Bridget is too much. They can’t appreciate what it’s like and I don’t want to burden them. I thought I was strong today but I’m weak. I get stuck sitting here just remembering and going over and over what we had and how I wasted opportunities.
I hope I’m not going to become a recluse. Home is a sanctuary where I can cry in peace
I’m also putting people off when they want to walk because the tension between talking and not talking about Bridget is too much. They can’t appreciate what it’s like and I don’t want to burden them. I thought I was strong today but I’m weak. I get stuck sitting here just remembering and going over and over what we had and how I wasted opportunities.
I hope I’m not going to become a recluse. Home is a sanctuary where I can cry in peace
I know exactly what you mean, Peter. My advice is don't put yourself under the stress of having to cope with other people when you don't feel able. I sometimes sit and cry. Try to cry it out. Everything you're experiencing is normal. I sometimes see Margaret, hear her voice, just like you. I think it's normal. Frankly there are some days when, if it weren't for my dog, I simply wouldn't go out. You're experiencing grief - all of us in our position are - and each of us must cope in our own way. Only you know what your grief is like. I comfort myself by thinking that Margaret seems to be happy where she is now, but with dementia who can be certain? However, it's what I cling to. Sometimes it's comforting, sometimes not. For their sakes and for what they mean to us, I think we must keep sodiering on, ready to react if they need us but accepting that maybe in the world they now inhabit they don't - and that's when I find it hardest.
God bless,
@Dutchman Today I went into the garden looking at flowers he will never see (hubby in hospital awaiting assessment for care home) and I thought 'now I understand how Dutchman feels'.
Previously I was continuing in my role getting more and more exhausted, and some days I shouted at hubby when he wanted me to 'take him home' at 11pm at night. And I just didn't cuddle him enough, or tell him I love him enough, etc etc. Now it's too late. Now I must live through my guilt and weep the tears he will never see.
I do understand you Dutchman, because I am suffering with you.
Previously I was continuing in my role getting more and more exhausted, and some days I shouted at hubby when he wanted me to 'take him home' at 11pm at night. And I just didn't cuddle him enough, or tell him I love him enough, etc etc. Now it's too late. Now I must live through my guilt and weep the tears he will never see.
I do understand you Dutchman, because I am suffering with you.
