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Dementia’s journey

Dutchman

Registered User
May 26, 2017
868
Devon
Damn it, i went for a booked in session only to find that the home hadn’t put my name in and some other visitor was sitting in the special cubicle.

i didn’t make a fuss as Bridget hardly wanted to see me anyway and quickly turned away after taking her flowers. It was a bit of a blow really as this is happening from time to time and i wonder how long it’s going to be until she just doesn’t want to see me at all.

I could question why i go at all given the level of recognition i get. It’s the hanging on to the final threads of what Bridget was and i’m trying desparately to hold on every time i go.

Now it’s over 14 months since Bridget left here for the home and i’m settling into a regimen of being on my own, and slowly the familiarity of Bridget as my wife is fading. It’s like she’s died but hasn’t and we grieve all the time over what we’ve lost.

I’m finding family and friends are treating my life as normal, they have to be prompted to talk about her and cannot really know what’s it’s like for me now. If i get really upset there’s an expectation that i shouldn’t as “ time has passed on now”. So i grieve in private, cry and rant on my own. It’s so difficult, isn’t it, when only you can really know what you meant to each other in the good times.
 

DianeW

Registered User
Sep 10, 2013
787
Lytham St Annes
I think it’s very difficult for family especially talking about things when that person has been very low.......for fear of causing upset.

For you it feels like they have got on with life and almost forgotten the person, when in reality I doubt it is...

I think for them they feel talking about it would upset you all over again, whereas you never forget and want to talk about things......it’s just difficult knowing how to be.

I think you should openly talk about Bridget when you want and then your family will see that you can do so without it upsetting you....then it will become more normal.
 

Stacey sue

Registered User
Jan 24, 2020
77
My family seem to have accepted the dementia journey, I can not, I seem to just want him back in any form? I know in my head what it’s all about but my heart just wants him back. I know if and when I can spend time with him reality will kick in??
This has been such a miserable time for all, when will it end? SSue.
 

Dutchman

Registered User
May 26, 2017
868
Devon
My family seem to have accepted the dementia journey, I can not, I seem to just want him back in any form? I know in my head what it’s all about but my heart just wants him back. I know if and when I can spend time with him reality will kick in??
This has been such a miserable time for all, when will it end? SSue.
Hello Sue

I know exactly how you feel as i’m the same that i would have her back in an instant but my head says how’s that going to work what with the dementia really kicking in now. She could be here but not without all the help of several staff, day and night. But i miss her so much.

I went to the home yesterday and saw her through the window, she walked up to see me with the persuasion of a carer and as she got close i stupidly said “ i miss you so much and love so much “ and started to well up. Of course she can’t respond to that and i think i shouldn’t have said it, it just came out.

Sometimes i think i’m ok then, like now, i read something, hear or talk about something and it reminds me of my loss. I find it bizarre and unbelievable that we’ve lost our darling ones to dementia and think it’s going to take a very long time to make any sense of it, if at all.

I wish i could really help you Sue. Perhaps there’s some comfort in knowing that just a moment away is someone equally hurting and really knowing what we’re going through.

Love from Peter
 

Stacey sue

Registered User
Jan 24, 2020
77
Hi Peter yes I feel exactly the same,and say the same through the window,I can’t help it,like you it just comes out! He doesn’t know why he is locked up? Hopefully he is beyond thinking too much,would hate for him to think why what have I done?
yes there is comfort in someone knowing what your feeling . I am not going mad because I can’t come to terms with it? Family and friends are supportive but they think I should move on and except what’s happening! It comes and goes in waves!!
Thankyou for your reply as ever it means a lot. Love from SSue.
 

Dutchman

Registered User
May 26, 2017
868
Devon
Just write. Please feel free to unload on here to me. Anytime. I think i’ve bought every book on grieving there is and sometimes, just sometimes there’s a nugget of comfort. They more or less say the same thing in different ways but i’m told it’s natural to be drawn to them.

I do all the things that we do ( well, i do) on this dementia journey. I’ve phoned the Admiral Nurses, Samaritans , gone to counselling and i’m going again. I hope eventually things will trail off. But, you see, i’m writing this from my bed, all nice and warm and comforting, no real need to get up although i’m seeing my daughter later and i do really need to have breakfast.

I’m seeing Bridget on a booked in slot next Tuesday.

love to you, peter
 

Dutchman

Registered User
May 26, 2017
868
Devon
I wondered if i should write this on the appropriate thread ( GUILT) but i’m here on this dementia journey one and, after all, it’s all part of what im experiencing day by day with you guys.

Guilt, that terrible monster that has got me bad today. Reading all the posts ( yes i’ve spent most of the morning going through them on the forum) on guilt i find that this particular emotion one of the most wearing and complicated of all. Just to believe the guilt positive feedbacks would be a start.

Guilt isn’t rational i’m told but it’s hard to fully appreciate that when i’m here quietly sitting in our lovely home that we both loved and nurtured.

Maybe i’ve done this before, i don’t remember, but these are the guilt triggers:
  1. I put myself first many times and neglected her appeals to think of her.
  2. I bought myself an exercise bike ( behind her back) and used it although she begged me to come up to bed at 16.00
  3. i went for walks even though she wasn’t able to come as she has weak ankles and she said “you know i can’t join you”
  4. i moved out of our main bed to a smaller room due to her being unwashed and still in her clothes even though she asked me to stay.
  5. i often used to sit next to her on the sofa wondering what life would be like on my own enjoying doing stuff on my own
  6. when she was really smelly and unwashed i shouted at her “ you stink” trying desperately to get her to wash and she responded by saying “ don’t be horrible “
All these memories, and more, wear me down. I know they’ll be responses to this and calls for non judgement but memories hurt especially when i can hear her voice, remember her presence here, think what i could’ve done instead.

Forgive my unloading of my thoughts with you today
 

Grahamstown

Registered User
Jan 12, 2018
1,727
80
East of England
I wondered if i should write this on the appropriate thread ( GUILT) but i’m here on this dementia journey one and, after all, it’s all part of what im experiencing day by day with you guys.

Guilt, that terrible monster that has got me bad today. Reading all the posts ( yes i’ve spent most of the morning going through them on the forum) on guilt i find that this particular emotion one of the most wearing and complicated of all. Just to believe the guilt positive feedbacks would be a start.

Guilt isn’t rational i’m told but it’s hard to fully appreciate that when i’m here quietly sitting in our lovely home that we both loved and nurtured.

Maybe i’ve done this before, i don’t remember, but these are the guilt triggers:
  1. I put myself first many times and neglected her appeals to think of her.
  2. I bought myself an exercise bike ( behind her back) and used it although she begged me to come up to bed at 16.00
  3. i went for walks even though she wasn’t able to come as she has weak ankles and she said “you know i can’t join you”
  4. i moved out of our main bed to a smaller room due to her being unwashed and still in her clothes even though she asked me to stay.
  5. i often used to sit next to her on the sofa wondering what life would be like on my own enjoying doing stuff on my own
  6. when she was really smelly and unwashed i shouted at her “ you stink” trying desperately to get her to wash and she responded by saying “ don’t be horrible “
All these memories, and more, wear me down. I know they’ll be responses to this and calls for non judgement but memories hurt especially when i can hear her voice, remember her presence here, think what i could’ve done instead.

Forgive my unloading of my thoughts with you today
I think it’s good that you have ‘unloaded’, and you may ask why, why do I think it’s good? My answer is that you thought this, there’s no solution to your bitter memories, you can’t undo them or not have them. So to unload pushes the knife of your self guilt in, and getting them down, warts and all, is a sort of confession, but absolution is not in anyone’s power. It’s in a higher power than mere mortals, whatever that might be. Many of us have had those thoughts because living with someone with this disease tests us to limit, and many of us are found wanting. I am one of those too, but I have to live with it, and I know that I may not have got through as I did without that ability to ‘unload’. I am thankful for what I did have, although reliving the memories of good times is super painful. I bitterly regret some of the things I said but I cannot unsay them and dementia does protect the sufferer to a certain extent - I have no easy solution but I do support your right to say what is sometimes unsayable, Sue
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,323
England
Dutchman, these things are done, you can’t undo them. You can dismiss them, that changes nothing, you can beat yourself up over them, that changes nothing other than to make the burden heavier. Yesterday has gone, no one on this forum can change what they did or said yesterday.

Today, is different, we can all think about what we do today and how we do it and plan for tomorrow. Today is the turning point, you have control Dutchman and knowing how you regret your past behaviour I’m sure today you can plan for tomorrow. Bridget needs you, she needs you to be her eyes and ears, to speak up for her. Plan for tomorrow.

We are in difficult times, goodness knows dealing with dementia is hard enough without the problems the virus brings. Use this time to plan how you will make it up to Bridget, I’m sure she does not think you need to but it’s how you feel and you can change this.

Make your plans with how you will spend time with her once you are free to enter the care home and be with her. Join her in her world and then when you leave close the door on her world and enjoy your time back in the real world.

I cared for my husband for 7 years at home then split my time between his world and the real world for 4 years whilst he was in his nursing home. For the last six years of his life he did not know I was his wife, but he felt safe and contented to be with me and I still knew he was my husband.

He lost his battle with Alzheimer’s 4 and a half years ago. I still miss my visits to the nursing home, I loved being there, I was his wife again, I still am his wife.

We all make mistakes dutchman, non of us are perfect, we all have regrets but there is no way we can change them, but we can make tomorrow different.

Take care.
 

Dutchman

Registered User
May 26, 2017
868
Devon
Not a good visit today to the home. It was 14.30 and Bridget was asleep in the sun room. They woke her up to see me but her eyes were vacant and lifeless when she looked at me and it was this that shocked me the most. That sparkle has gone and i see a ever present deterioration in her look. There was no point in staying longer so I walked back to the car and cried and called the Samaritans just to hear a voice but the voice was young and lacked empathy.

I look for any recognition but there isn’t any and i realise shockingly that i’m trying to hold on to any sense that she might like to know me and be happy that i’m there. But i know that she’s lacking even the ability to make the effort. I get the feeling from looking at her that her time is limited and when, eventually, she’s gone i’m going to have to go through all fresh new grief again and i don’t know if i can do it.

Its taken me over a year now to just stand still with the upsets and heartbreak. At least i can still visit and she’s remaining a presence in my life.
 

Stacey sue

Registered User
Jan 24, 2020
77
Hi, MH has been in hospital with an infection , I was able to visit him and help with his care.. I could cope with that easily , now he has gone back into ch and in isolation for two weeks because he was in hospital!! He had two tests in hospital and both were negative. I am upset he has to isolate for two weeks even though he is negative Covid.?? Things surely have to change ? My H has deteriorated hugely in these months being cut off from family or just me?? This is just taking away last months to spend with MH . I know others may be worse off, but I have never known heart ache like this. It is a long grieving.!! X SSueX
 

kindred

Registered User
Apr 8, 2018
2,528
Hi, MH has been in hospital with an infection , I was able to visit him and help with his care.. I could cope with that easily , now he has gone back into ch and in isolation for two weeks because he was in hospital!! He had two tests in hospital and both were negative. I am upset he has to isolate for two weeks even though he is negative Covid.?? Things surely have to change ? My H has deteriorated hugely in these months being cut off from family or just me?? This is just taking away last months to spend with MH . I know others may be worse off, but I have never known heart ache like this. It is a long grieving.!! X SSueX
I am so sorry and cross on your behalf, Can the CH not test him and the results back in few days and he could come out of his awful isolation. All my sympathy, these things are in humane. warmest, Kindred
 

Just me

Registered User
Nov 17, 2013
494
I agree with @kindred and feel for everyone who is experiencing this.
Mum went into hospital on Saturday and was tested and the result came back the next day and she was able to mix. Surely care homes can do the same!
 

Dutchman

Registered User
May 26, 2017
868
Devon
I'm taking our little caravan to the dealers on Monday for a long overdue service so i need to make a start on clearing it out, top cupboards full of all sorts of items. The last time we used it was over a year ago when Bridget was able to comprehend a weekend away and enjoy herself to some extent.

I went into the caravan on the drive and as soon as i did i was struck by a sense of her presence. She personalised all the inside, made curtains, adapted this and that, all sorts of things that contained her touches. And this is where i spent my one of the lasts nights away from her ever increasing dementia behaviour. So many good and not so good memories.

I cried and felt shocked and believed i couldn’t do it, that the task of clearing it was both a betrayal and beyond me. It took an Admiral Nurse to talk me through it. Fortunately she answered the phone straight away.

Once i get it serviced do i sell it or keep it? I don’t know what to do. Using it on my own seems pointless and i would miss her company believe it or not! It just sits on the drive reminding me of better times when we had such fun going places in it but once it’s gone it’s gone and i might regret it.

oh, i nearly forgot to say when i moved it i creased the top corner bodywork. Not the best of days.

On a lighter note, after the disastrous episode with dog, i’m going back to having a cat. I know it went wrong with the first cat back in late last year but i’m in a better place now. Her name is Lucy and she’s coming on Thursday from Cats Protection.
 

Dutchman

Registered User
May 26, 2017
868
Devon
Be honest please, because i’ve a sneaky suspicion that i may be getting on people’s nerves with my continued posting of how i feel, but nevertheless i need the outlet to get through the day.

With lockdown i can only see Bridget through the lounge window. I went today at the advised time of 10.00 but because they are short staffed today Bridge was still in her Pj’s, had to woke up , and when she was directed to look at me looking at her, she was extremely distant. So much so that again it shocked me. Every damn time i go it‘s likely that I will be upset.

So why do I go when I know i’ll probably end up crying in the car? why go when it’s always upsetting? I go, as only you will understand, because I love her, miss her, i’m holding on to the last remnant of her, I feel an obligation and I fear that if I don’t go so often i’ll get to forget her.

Will it be better when she dies and i’m not visiting anymore? who knows. That, I guess is a whole new range of emotions but the thought does run through my mind. Is that so bad. Am I a coward?
 

kindred

Registered User
Apr 8, 2018
2,528
Be honest please, because i’ve a sneaky suspicion that i may be getting on people’s nerves with my continued posting of how i feel, but nevertheless i need the outlet to get through the day.

With lockdown i can only see Bridget through the lounge window. I went today at the advised time of 10.00 but because they are short staffed today Bridge was still in her Pj’s, had to woke up , and when she was directed to look at me looking at her, she was extremely distant. So much so that again it shocked me. Every damn time i go it‘s likely that I will be upset.

So why do I go when I know i’ll probably end up crying in the car? why go when it’s always upsetting? I go, as only you will understand, because I love her, miss her, i’m holding on to the last remnant of her, I feel an obligation and I fear that if I don’t go so often i’ll get to forget her.

Will it be better when she dies and i’m not visiting anymore? who knows. That, I guess is a whole new range of emotions but the thought does run through my mind. Is that so bad. Am I a coward?
No of course not a coward peter and I can only speak for myself. So, for myself I would rather have Keith alive and me visiting. But he could not have lived like that.
Sometimes Sundays are short staffed at the nursing home where I volunteer. They were today and the residents still in nightclothes are often not fully alert. Perhaps that’s what happened with Bridget today.
With love Kindred aka Geraldibe
 

Old Flopsy

Registered User
Sep 12, 2019
17
Peter- no you are not getting on my nerves- in fact you keep me coming back for more every day. I need to know how you are because some days I am not coping either!

I do hope that Lucy is a blessing when she comes to join you- I wouldn't want to be without my Millie who came from Cats Protection three years ago, well before my hubby started down the dementia route.

Keep posting Peter.
 

Lirene

Registered User
Sep 15, 2019
241
Peter, you are not getting on anyone’s nerves. We all keep up with your posts by our own choice. We are a network of shattered and exhausted individuals somewhat thrown together seeking out answers to unanswerable questions. Posting our innermost thoughts and feelings usually reserved for the Lord and the confessional. All some of us have, and especially at this present moment, is each other - a network of anonymous strangers just trying to guide each other through the worst hell of our lives. Open your heart to us anonymous strangers Peter, we don’t judge and never will.
Prayers for you and everyone xx
 

Dutchman

Registered User
May 26, 2017
868
Devon
I’ve just finished a trip down to the main dealer to service our little caravan. Bit early, waiting for it to open.

Of course, the 4 hour journey means I’ve had plenty of time to think.I just don’t see a way forward with all of this and any way of dealing with the constant misery I feel every day. Bridget seems to be deteriorating day by day which begs the question of how long has she got.

We’re all alone in the end with this and although I’m often told “don’t let dementia get you too” I can’t see any way round dementia not having a profound impact on me for the rest of my life and that’s a scary prospect.

I’ve forgotten what it’s like to be normal and without heartache lurking in the background. I often try to place myself back in the wretched dementia days when Bridget was at her worse and I want her away from me and I swore, pleaded, shouted. Sometimes helps, not always.
They’ve opened up.........more later!
 

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