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Dementia’s journey

kindred

Registered User
Apr 8, 2018
2,458
Just come back from the home. Bridget still in bed. The doctor was there and wanted to speak to me.

She went through the treatment escalation form with me and I’m faced with those awful decisions whether or not to revive, yes or no to force feeding,etc.

so I’m feeling pretty down now having it reinforced that Bridget is dying and there’s no way back.
Yes, this is so tough, all fellow feeling. I so wish you didn’t have to go through this. The GP talked it through with me and pretty much steered the answers. It’s about peace and comfort as you know. All my thoughts. Love Geraldine
 

northumbrian_k

Registered User
Mar 2, 2017
1,028
Newcastle
It might help to establish a structure to your week @Dutchman. It does not have to be much, just a few small things to differentiate the days. For me, a typical week is broken up into 4 regular half days on which I visit my wife, 1 when I do a weekly shop, 1 when I concentrate on washing or housekeeping, 2 or more days out on my bike, a day out somewhere with my dog, an evening out training, an evening at the pub quiz and so on. In other words, during the times that I am not visiting my wife I do my best to find things to do to fill the otherwise empty hours. Having a hound to look after and love also means that I have to be out of the house every day and in all weathers. I hope that this is of help to you.
 

Dutchman

Registered User
May 26, 2017
710
Devon
It might help to establish a structure to your week @Dutchman. It does not have to be much, just a few small things to differentiate the days. For me, a typical week is broken up into 4 regular half days on which I visit my wife, 1 when I do a weekly shop, 1 when I concentrate on washing or housekeeping, 2 or more days out on my bike, a day out somewhere with my dog, an evening out training, an evening at the pub quiz and so on. In other words, during the times that I am not visiting my wife I do my best to find things to do to fill the otherwise empty hours. Having a hound to look after and love also means that I have to be out of the house every day and in all weathers. I hope that this is of help to you.
I’m thinking of getting a dog which would give me something that will rely on me. Got to get some biopsy results first and then I’ll make some dog plans. Thanks for the advice. I visit every other day if I feel up to it but it’s a bit hit and miss what time I go.
 

Dutchman

Registered User
May 26, 2017
710
Devon
Went in today and Bridget is eating all her food thank God and was quite calm. She still wants to ‘get out of this place’ and that still upsets me she says ‘where do you live’ and ‘i want to go home’. But I have to steel myself and try to change the subject.

I often come home, open the door and expect her to greet me. After 30 years I’m hard wired to Bridget being around and us just hanging out together, doing together stuff.
 

Lirene

Registered User
Sep 15, 2019
184
Peter, bless both you and Bridget. Go gently in the next phase of your life, no need to rush, think, ponder and reflect. Life becomes different but we are still the same older, wiser, sad, happy, tears and laughter but life must go on. Look to help, volunteer for a couple of things see how you go and find what suits you. It will be hard at first but don’t give up, think of others you are helping, enabling them to live in their best way possible. My heart breaks for you but you must continue with your way through life through the help you give others . Prayers xx
 

Dutchman

Registered User
May 26, 2017
710
Devon
Peter, bless both you and Bridget. Go gently in the next phase of your life, no need to rush, think, ponder and reflect. Life becomes different but we are still the same older, wiser, sad, happy, tears and laughter but life must go on. Look to help, volunteer for a couple of things see how you go and find what suits you. It will be hard at first but don’t give up, think of others you are helping, enabling them to live in their best way possible. My heart breaks for you but you must continue with your way through life through the help you give others . Prayers xx
Thank you your kind thoughts. Peter
 

Dutchman

Registered User
May 26, 2017
710
Devon
Is it normal to fill the empty hours with sleep. I’ve never gone back to bed before unless I’ve been unwell. Now I stay in bed in the mornings and sleep at times in the afternoon. It seems so wrong and I worry that it’s not good for me but bed seems like a sanctuary, cosy and safe.

Have I progressed? I don’t know. I cry less now and at times can come to terms with it. But Bridget is in the home away from me and nothing can change that.

I do understand that in the end we have to grieve alone. My family tend to leave me alone now unless I contact them. Life carries on for them. Mums taken care of and that’s that. Part of me appreciated their position but I also know that no one who hasn’t lost or loosing someone they love through dementia can understand the sadness we are going through.

Going shopping now. Treat myself to a creamy bun.

Bless you all

peter
 

Dutchman

Registered User
May 26, 2017
710
Devon
Hi everyone. How are we all doing? It’s been 6 months now since Bridget left our home and I lurch from ok to extremely sad. I’ve only just got rid of some books but can’t face any personal stuff as it just seems I’m a traitor, like going behind her back. I’m advised by my counsellor that even if this takes years then it’s ok, it’s your life and no one but you can say when.

Having experienced the dementia merry go round for a number years all I can say is that we as carers should be proud of what we do and never ever put ourselves down if we think we’re not good enough. Bless you all.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,316
69
Dundee
That sounds like wise advice from your counsellor @Dutchman. My husband passed away coming up for 4 years and I still haven’t got rid of some stuff - I may never get rid of it.

It sounds like your counselling sessions may be beneficial to you - I hope so. You describe the merry go round of dementia. I often feel as if I’m on a roller coaster. Some days good, some days not so good.

Wishing more good days/times than bad.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,685
Hi everyone. How are we all doing? It’s been 6 months now since Bridget left our home and I lurch from ok to extremely sad. I’ve only just got rid of some books but can’t face any personal stuff as it just seems I’m a traitor, like going behind her back. I’m advised by my counsellor that even if this takes years then it’s ok, it’s your life and no one but you can say when.

Having experienced the dementia merry go round for a number years all I can say is that we as carers should be proud of what we do and never ever put ourselves down if we think we’re not good enough. Bless you all.
I think we all forget the crumbling early years of dementia that led us to this point in life that we find ourselves in. Our normal has been re-written & we no longer recognise ourselves at times or the lives we now exist.
How to forge forward with new routines, etc ........I’m bimbling along &sleep definitely helps. xx
 

Dutchman

Registered User
May 26, 2017
710
Devon
Went in this morning and found Bridget still in bed. She was awake but had this far away look but she took a moment and recognised me. I cried softly so’s not to alarm her. I miss her terribly but she’s lost to me and she can’t verbalise what she’s thinking. I just hope happy thoughts.

I helped a carer get her up and washed and dressed. I was pleased to help. I just want to take care of her (I’m crying as I write this) so much but I’m not able to.

I could ask why us but it’s happening to so many people and us carers have the worse time of trying to cope with it all. I’m told all the time to be kind to myself but I find that hard to do and just when I think I’m ok something reminds me and stops me on my tracks. Bridget’s there I’m here.
 

kindred

Registered User
Apr 8, 2018
2,458
Went in this morning and found Bridget still in bed. She was awake but had this far away look but she took a moment and recognised me. I cried softly so’s not to alarm her. I miss her terribly but she’s lost to me and she can’t verbalise what she’s thinking. I just hope happy thoughts.

I helped a carer get her up and washed and dressed. I was pleased to help. I just want to take care of her (I’m crying as I write this) so much but I’m not able to.

I could ask why us but it’s happening to so many people and us carers have the worse time of trying to cope with it all. I’m told all the time to be kind to myself but I find that hard to do and just when I think I’m ok something reminds me and stops me on my tracks. Bridget’s there I’m here.
I know, Peter. I agree, us carers have the worst time, it's almost surreal. You are doing your bit towards taking care of her, and by being there you are providing a regular, loving presence. I know words don't help, I so get that. I don't even know what be kind to yourself means in this context!!
This is so so hard on you, I know. As you know, I volunteer at the nursing home where Keith died. I'm always waiting for the nurses to bring him down again ….
Being there gives me some closeness. Anything really.
All thoughts and sympathy. with love, Geraldine
 

Dutchman

Registered User
May 26, 2017
710
Devon
I know, Peter. I agree, us carers have the worst time, it's almost surreal. You are doing your bit towards taking care of her, and by being there you are providing a regular, loving presence. I know words don't help, I so get that. I don't even know what be kind to yourself means in this context!!
This is so so hard on you, I know. As you know, I volunteer at the nursing home where Keith died. I'm always waiting for the nurses to bring him down again ….
Being there gives me some closeness. Anything really.
All thoughts and sympathy. with love, Geraldine
Helping in the home is a wonderful thing to do and I can see how it allows you to feel a closeness. There’s no ready remedy for the heartbreak we experience. I’m thinking of you now and share your pain. Maybe it might help.
 

Dutchman

Registered User
May 26, 2017
710
Devon
I’m blown away by the kindness of the carers at the home and count myself and Bridget lucky that this is where she is.

I think if you get to know the carers and become more friendly with them you appreciate more the role they play in keeping our loved ones as well as possible.

I went to a birthday party last night and tried very hard to enjoy myself but thoughts of Bridget kept creeping in and how much she would have liked to party as well. She’s at the home and I feel underhand when I do things on my own. I know that this is probably normal but still upsetting

bless you all, Peterxxx
 

northumbrian_k

Registered User
Mar 2, 2017
1,028
Newcastle
Maybe you are trying too consciously to enjoy yourself and find new purpose @Dutchman. In doing so you are setting yourself up to fail as you then start to feel guilty about your wife. It is dementia that stops her from enjoying things that she used to. You can't change that but you can stop it from dragging you down too. Go into social and other situations with no pre-conceptions and one day you'll find that enjoyment comes naturally. Like me, you may never be free of poignant reflection but you will have shaken off your unwarranted feelings of guilt. I hope that this makes sense and helps.
 

Dutchman

Registered User
May 26, 2017
710
Devon
I trying to get my head round my feelings most of the time. Thanks Northumbrian k for your kind advice.

I have health concerns of my own and need treatment soon. But although this could make me worry, in some respects the concern and worry I feel for Bridget kind of takes the edge of my problems. This may sound strange but sometimes I feel that I deserve to be ill as penance for treating her badly and not understanding the extra love I needed to give during the dementia time here at home.

My love is a mere shadow of her once self and it breaks my heart to see her in this way. She takes herself off to bed during the day and I’ve found her curled up on top seemingly so lonely and helpless. I know she’s looked after by the professionals now but I miss looking after her and caring for her even though I also know it would be an impossible task.

In a way I don’t want to enjoy my life because my life was hers and as a couple we wanted very little but each other. There’s no real way around any of this apart from getting by each day and slowly, I hope, things ease off a bit.

Am I so unusual in these thoughts? I just need reassurance a lot because all this has destroyed my confidence to think rationally

bless you, Peter
 

Dutchman

Registered User
May 26, 2017
710
Devon
I’m still in bed 12.40 as I see no point in getting up except for a dentist appointment at 14.00. I was supposed to go to a residents meeting this morning at the home but saw no point as it wouldnt have made any difference to the situation.

its almost like I’m back at square one. I see a picture of her and I’m crying seeing no future in my life. My poor wife sees me only as a friend now and she’s lost to me.

I’ve come to realise that we really are on our own with this even with the wonderful support of this forum, friends, family. Close the door and it’s my memories only that are there to remind me of loss. I thought I was doing okay till this morning.

I’ve been advised that whatever we do to manage each day is ok as the grief is so personal then so are the coping strategies. I wish I could come to terms with that so I didn’t feel so uneasy and guilty about, for instance, remaining in bed, crying and generally being sorry for myself.

I’ll be visiting this afternoon although I don’t want to as it always upsets me seeing her there anxious and wandering, trying to find a way out. Oh I wish I could bring her home, care for her myself but I know it’s just a dream. But our love gets testEd all the time because I understand logically that she’s in the best place but my heart misses my companion all the time.

Time to get up? I’m going to try. At least I’ve stopped crying. Feel like treating myself to something nice ( don't know what as I need Very little).

Bless all my forum friends who understand so much because of your own personal stories.

peter
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,166
Yorkshire
Sending good wishes @Dutchman

Though I am a bit angry at you for this

sometimes I feel that I deserve to be ill as penance for treating her badly and not understanding the extra love I needed to give during the dementia time here at home.
I can't tell you how to feel or say your feelings are wrong, though I can strongly say that what each of us goes through is not a penance and is not brought down on us because we dared to care for our partner, parent or friend and didn't get it right... because it's simply not possible to get it right, it's such an unknown, unexpected, overwhelming experience and we are only human... we each did and do what we can in each moment, that has to be enough, we can't torture ourselves over the not so good disregarding all the good we did

Be gentle with and kind to yourself, as your wife would if only she could... for me that was one way of fulfilling my parents' wishes for me... they did anything they could for me, so I try to continue that for their sakes

Rest when you need to, then do all those liitle things we need to do to get through each day... visit and be with your wife without expecting anything from her... and yes, go treat yourself to something be it chocolate, a cream bun, a new book, an ale you haven't tried before, a new mug (I can't resist the one that's caught my eye today, pink with 'wild at heart' on it, shame about the leopard print spots though)
 

northumbrian_k

Registered User
Mar 2, 2017
1,028
Newcastle
@Shedrech has put things very clearly. You deserve no punishment or penance for your devotion. Try not to be so hard on yourself @Dutchman You did not make the situation and can't do anything to change it. You and your wife still have a life together. Those memories that you say remind you of loss are really about all the good times that you have shared. Take comfort from a life that has given you so much and never give up. There is nothing wrong in finding enjoyment where you can.