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Dementia’s journey

Dutchman

Registered User
May 26, 2017
524
Devon
As if the emotional rollercoaster wasn’t bad enough I developed a persistent cough and, although I like to visit today, can’t see myself doing it . Back to bed for an hour or so and then see how I feel.

I had a great chat with the Admiral Nurse who advised to just take each day as it comes and just enjoy the positive bits. Reassured me I had done and am doing a great job even though I never think I do enough. And don’t forget she said it’s only been 6 months ( feels more like 6 years)

Looking after ones self is certainly coming true because it’s enough to find the motivation to visit without a cold and cough interfering.

Be well everyone. God bless you all. Peter
 

Dutchman

Registered User
May 26, 2017
524
Devon
I would settle for good friend, Peter. Understanding relationships like husband and wife often becomes impossible and I know it causes so much hurt, but it is often too sophisticated a concept for the mind to retain. The bond between you is so evident and beautiful and you,bless you, are doing all you can to maintain it. All honour to you. I know it hurts and you know I know, as I am always saying to you!
warmest, Geraldinex[/QUOTE


Just come back from the home and waiting for the Admiral Nurse to ring me.

I'm in a bit of a state to be honest. While everyone is eating Bridget’s in the lounge just sitting there. She’s not eating and if this goes on 2020 will be her last year, I can’t see any other outcome. She’s losing weight. The dietician has been but no difference.

To add to that as soon as she saw me she wanted go home. She went round the room telling everyone that she won’t be here tomorrow.

Oh, if I could only bring her home if that’s what she really means I’d do it . It’s so very, very tempting but I know that if I got her back here in all probability she wouldn’t mean here. But if she did, if she really did mean our home , how long would be before her dementia became unmanageable again, would she not want me to wash her, dress her, not sleep at night and all those random dementia things that happened here. Would she want to escape here again?

And then there’s the situation where if, again, she needs to go into a home it won’t anything like as good as where she she is now. That’s if you find can one!

Don’t worry I won’t do anything hasty.

When I see her in the home so miserable my heart breaks

I want her back with me so much but I dread going to the home when she so agitated like this. I feel I’ve abandoned her to her fate and I thought I was handling and coping a lot better. But I’m on my own dealing with this like lots of us out there. We’re normal human beings faced with impossible emotions to live with every day.

i know, in the end, we’re on our own with all this, in an empty house, and I wonder how to get through the day and the next day. I’m going back to see her tomorrow morning because I just miss seeing her. Simple as that.
 
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kindred

Registered User
Apr 8, 2018
2,360
I know you won't do anything hasty, Peter, and I know this situation is tormenting you so badly. You are right, these are impossible emotions to live with. It's OK to just miss seeing her. I would give anything just to see Keith again. I completely understand. I'm sorry she's not eating. Is she drinking?
with love, Geraldinex
 

Dutchman

Registered User
May 26, 2017
524
Devon
I know you won't do anything hasty, Peter, and I know this situation is tormenting you so badly. You are right, these are impossible emotions to live with. It's OK to just miss seeing her. I would give anything just to see Keith again. I completely understand. I'm sorry she's not eating. Is she drinking?
with love, Geraldine

thanks so much for the quick reply. She drinks enough.

I feel a bit selfish not taking your obvious feelings over the loss of Keith into consideration. You are quite somebody to reply to my moans and give me comfort when your loss must upset you in many ways.

bless you. Peter
 

kindred

Registered User
Apr 8, 2018
2,360
Thank you, Peter, drinking is good, keeps the swallowing going and paves one way for nutrition.
Thank you for your kind words. I miss Keith so much it feels like an illness! But I tell myself that he lived life to the full at a time when it was possible to do that, none of the restrictions we have now. And he said that he felt beloved on this earth, so if you like, my job was done! We were together from first day at University.
With love, Geraldinex
 

Dutchman

Registered User
May 26, 2017
524
Devon
Thank you, Peter, drinking is good, keeps the swallowing going and paves one way for nutrition.
Thank you for your kind words. I miss Keith so much it feels like an illness! But I tell myself that he lived life to the full at a time when it was possible to do that, none of the restrictions we have now. And he said that he felt beloved on this earth, so if you like, my job was done! We were together from first day at University.
With love, Geraldinex
I fully understand how you must be feeling even though for each of us it’s going to be a little different. Bridget is my second wife as my first broke down and we disliked each other at the end. Bridget was and still is the only person I’ve really loved and I thank God that we met and had at least 25 good normal years together. Loving someone that much comes with consequences when we lose them because the pain and anguish is so intense.

I’m told (advised) that things do get better in time , but when we’ve been equals for so long in everything we did and then the relationship deteriorates because of dementia and I become a carer, then you realise you’re just an ordinary person and barely coping is just about all you can do.

I wish I could help lessen your pain but all I can do is to remain on the forum for any time you want to post.
Bless you . Peter
 

Dutchman

Registered User
May 26, 2017
524
Devon
to your inner self, try and erase today from your mind - it’s gone - today is now yesterday. Today we try, again xx
I fully understand how you must be feeling even though for each of us it’s going to be a little different. Bridget is my second wife as my first broke down and we disliked each other at the end. Bridget was and still is the only person I’ve really loved and I thank God that we met and had at least 25 good normal years together. Loving someone that much comes with consequences when we lose them because the pain and anguish is so intense.

I’m told (advised) that things do get better in time , but when we’ve been equals for so long in everything we did and then the relationship deteriorates because of dementia and I become a carer, then you realise you’re just an ordinary person and barely coping is just about all you can do.

I wish I could help lessen your pain but all I can do is to remain on the forum for any time you want to post.
Bless you . Peter
Thank you, Peter, drinking is good, keeps the swallowing going and paves one way for nutrition.
Thank you for your kind words. I miss Keith so much it feels like an illness! But I tell myself that he lived life to the full at a time when it was possible to do that, none of the restrictions we have now. And he said that he felt beloved on this earth, so if you like, my job was done! We were together from first day at University.
With love, Geraldinex
I went in today to see Bridget and stayed for dinner( fish and chips ) so I tried to get her to eat something. A few chips, some fish and various sweets. Not much.

How long can this go on before she needs treatment? I spoke to the staff but their options are few if she just backs away from food. When I talk to them I feel their concern but also their helplessness.

So again I come away from the home feeling sad and depressed and come home wondering if I could bring her home here she might perk up, eat, be happier. But it always comes down to ifs and maybes. It’s all too frustrating and too much for me.
 

Dutchman

Registered User
May 26, 2017
524
Devon
I went in to hospital today have minor op and staying at my daughter’s overnight in Dartmouth.

Because of today’s busyness I’ve not had that much time to consider Bridget although I know she’s cared for in the home.
Why is it that I always feel sorry for her and worry for her contentment. She was extremely unhappy whilst she was at home with me and couldn’t wait to escape the house. Now she’s locked away and I feel she’s lonely but my unhappiness makes my imagination think negative thoughts .

Anyone got a technique for cheering ourselves up, just a few moments of contentment?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,647
Kent
Hello @Dutchman.

Sorry to hear you have needed hospital care and I hope you will make a full recovery.

She was extremely unhappy whilst she was at home with me and couldn’t wait to escape the house
This is what I kept telling myself when my husband was in residential care and I knew if he was at home again it would be exactly the same.

I realised it was the illness which was upsetting me, not really the fact he was in a care home. The illness, the dementia, prevented me from meeting his needs and it was the illness which upset me, it was the illness which prevented me from caring for him at home.

I doubt your wife is lonely. You are the one who is lonely and perhaps you are seeing your wife from your own perspective.

It is hard to be cheerful and upbeat I know. I don`t think anyone expects it of you. I allowed myself to be anxious and sad. My husband was in care, with a very serious illness so how could I have been anything other.

All you can do is try to reassure yourself you are doing the best you can for your wife, even if it is making you very unhappy.
 

Dutchman

Registered User
May 26, 2017
524
Devon
Hello @Dutchman.

Sorry to hear you have needed hospital care and I hope you will make a full recovery.



This is what I kept telling myself when my husband was in residential care and I knew if he was at home again it would be exactly the same.

I realised it was the illness which was upsetting me, not really the fact he was in a care home. The illness, the dementia, prevented me from meeting his needs and it was the illness which upset me, it was the illness which prevented me from caring for him at home.

I doubt your wife is lonely. You are the one who is lonely and perhaps you are seeing your wife from your own perspective.

It is hard to be cheerful and upbeat I know. I don`t think anyone expects it of you. I allowed myself to be anxious and sad. My husband was in care, with a very serious illness so how could I have been anything other.

All you can do is try to reassure yourself you are doing the best you can for your wife, even if it is making you very unhappy.
Hi Granny G. You’ve cheered me up this morning with your reassurances and wise words.

I went in for a prostate biopsy so uneasy about the eventual results. I need to remain fit for Bridget
 

Dutchman

Registered User
May 26, 2017
524
Devon
I’m miserable and pretty fed up today. I’m still in bed as I see no reason to get up and being bed is a good way of getting rid of time.

I suppose it’s all a mixture of worry for Bridget as she’s not eating, being on my own surrounded by all our memories, having little to do with little motivation, and a future full of no companionship.

I thought I was making some form of progress but it’s all too much for me and no one can do any of this for me. I’m surrounded by wonderful people and have a wonderful family. Why should I be the way I am? It’s because Bridget isn’t here to share my life and is stuck in a care home wasting away. No one would find this an easy situation to be in. When I phone the home they say she’s ok but not eating very much and, to be honest, I dread going to see her reminding me of her dementia and how it’s destroyed our lives together. Is that so selfish ?

I can’t make sense of it. Bridget was no company when she was here but my life had some sort of meaning albeit full of frustration.

Kindred says her loss feels like an illness and I can sympathise with that. Be kind to myself it’s advised but I’m I harming myself by living like I’m living at the moment. It’s coming up to 6 months Bridget went in to the home and we’ve never been apart for 6 days.

I feel I should see Bridget today (I’ve missed 2 days because of a hospital visit) but feel I would be letting down if I missed today. it’s a constant pull of worry, upset and loneliness.

I’ve gone on enough. If you’ve read this thanks for your patience.

bless you all . Peter
 

canary

Registered User
Feb 25, 2014
11,617
South coast
Peter - I am seeing a counsellor and she said that when you are a carer you get so used to putting your own needs last that you end up being submerged by the person you are caring for and lose the sense of your own identity. Then when something happens, like your caree goes into long-term residential care, or dies, then you have nothing left. I have lost my sense of my identity and now have no idea what I like or what makes me happy. While OH was in respite I had no idea what to do. I need to recover my sense of self. Baby steps.
 

Dutchman

Registered User
May 26, 2017
524
Devon
Peter - I am seeing a counsellor and she said that when you are a carer you get so used to putting your own needs last that you end up being submerged by the person you are caring for and lose the sense of your own identity. Then when something happens, like your caree goes into long-term residential care, or dies, then you have nothing left. I have lost my sense of my identity and now have no idea what I like or what makes me happy. While OH was in respite I had no idea what to do. I need to recover my sense of self. Baby steps.
I too am seeing a counsellor (Counselling for Carers). I feel I just unload but occasionally there’s a moment of understanding from me that makes me feel better.
You’re right in what you say. For so long we’ve been putting ourselves second because we had no choice and now I’ve little control over what happens at the care home and I worry ( even though we pay a fortune each week to have some peaceful time)
I just wish I had some mental technique to think myself into some comfort. All the advice, reassurance and well wishing kind of washes away when you’re facing another day on your own.

thanks for your speedy reply xx
 

canary

Registered User
Feb 25, 2014
11,617
South coast
I dont know whether there is mental technique for that. Sometimes I think its just a question of keep putting one foot in front of another (keep b****ring on, as someone once said). I know that when OH went on a day trip without me, lots of people said to me "what will you do while he is gone?" and I honestly had no idea. It was so long since I had asked myself, what would I like to do, that I had almost forgotten the answer
 

Dutchman

Registered User
May 26, 2017
524
Devon
Peter - I am seeing a counsellor and she said that when you are a carer you get so used to putting your own needs last that you end up being submerged by the person you are caring for and lose the sense of your own identity. Then when something happens, like your caree goes into long-term residential care, or dies, then you have nothing left. I have lost my sense of my identity and now have no idea what I like or what makes me happy. While OH was in respite I had no idea what to do. I need to recover my sense of self. Baby steps.
Talk about baby steps! I’m still in bed at 13.00 but did get up to have breakfast and then said to myself ‘so what, I’m not doing anyone any harm and I like being in bed, besides I can’t think of anything to do with myself’. But there’s always that nagging doubt that I’m doing something wrong, wasting my life away.

My counsellor said ‘ now look, your life has been turned up side down so why feel awkward about doing anything’. But I do.
It’s strange that when Bridget was here towards the end we did nothing together. We’d drive out and have breakfast, come back home and that was that and she’d go to bed at 15.00. Now I have freedom and no inclination to do much at all. Like you, it’s a struggle to be motivated to enjoy life again.

I could spend time sorting stuff out at home but that sort of reinforces the fact that she’s not coming home. That hurts. I’ll lie here till 14.00 then get up, have a shower and then face what’s left of the day.

Am I strange, weird, altogether wrong in doing what I’m doing/ not doing because I need reassurance that I’m not entering a clinical depression stage.
Thanks for reading this. I’m using the forum as’ get it of your chest’ place it seems more and more.
Peter.
 

kindred

Registered User
Apr 8, 2018
2,360
I’m miserable and pretty fed up today. I’m still in bed as I see no reason to get up and being bed is a good way of getting rid of time.

I suppose it’s all a mixture of worry for Bridget as she’s not eating, being on my own surrounded by all our memories, having little to do with little motivation, and a future full of no companionship.

I thought I was making some form of progress but it’s all too much for me and no one can do any of this for me. I’m surrounded by wonderful people and have a wonderful family. Why should I be the way I am? It’s because Bridget isn’t here to share my life and is stuck in a care home wasting away. No one would find this an easy situation to be in. When I phone the home they say she’s ok but not eating very much and, to be honest, I dread going to see her reminding me of her dementia and how it’s destroyed our lives together. Is that so selfish ?

I can’t make sense of it. Bridget was no company when she was here but my life had some sort of meaning albeit full of frustration.

Kindred says her loss feels like an illness and I can sympathise with that. Be kind to myself it’s advised but I’m I harming myself by living like I’m living at the moment. It’s coming up to 6 months Bridget went in to the home and we’ve never been apart for 6 days.

I feel I should see Bridget today (I’ve missed 2 days because of a hospital visit) but feel I would be letting down if I missed today. it’s a constant pull of worry, upset and loneliness.

I’ve gone on enough. If you’ve read this thanks for your patience.

bless you all . Peter
Bless you too, Peter. I think it's getting the meaning in life that's a tough one, and when we live for another, which we do when we love, and that is taken, well it's impossible to get back the same level of meaning. I kind of accept I can have meaning but not as much of it, so I try to find it all over the place, like walking along the top of a cliff and not looking down … Lordy, I know it's so very hard. All sympathy. Thank you for telling us how things are with you. with love, Geraldine
 

Dutchman

Registered User
May 26, 2017
524
Devon
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.
 

Pete1

Registered User
Jul 16, 2019
558
Hi @Dutchman, so sorry to hear that - it can really hit home hard when faced with it in black and white, even though we know that is the case. It is a really difficult and painful process to go through (I went through it with both Mum and Dad) - I feel for you. Stay strong, I wish you all the best.
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,996
68
Dundee
I’m sorry to hear that to @Dutchman. I remember how hard that was with my husband. It’s so hard to cope with. Wishing you strength.
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,769
England
Such a hard decision to make and one we all dread. We can only do our best to ease this part of the journey for both ourselves and our loved ones.