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Dementia’s journey

Lirene

Registered User
Sep 15, 2019
194
Against everyone’s advice I brought my husband home in February after seven months in hospital after breaking his hip twice. He has advanced Parkinson’s, dementia and cannot walk at all.
He was refused fully funding three times, which no one at the hospital could understand why - I am appealing against the decision and can never understand why we cannot have full funding or even part funding at home, but that’s for another time.

I am strong minded and have been through some extremely tough times in my life, but this is by far the absolutely most horrendous experience ever. To those of you on a good day who think your loved one can come home - think again good people and remember how devious dementia can be. That person will turn and for absolutely no
reason put you through hell time after time and all you are doing is your best for them which they are totally incapable of understanding.
My heart truly goes out to you all, and I fully understand the heartbreak you experience. My mum has been in a nursing home for 13 years and is now palliative care with Alzheimer’s. I have been through every stage of this horrendous and harrowing journey with her although she has not known me for a long long time. She has enjoyed being in the nursing home and she is so loved by everyone there. They have however seen a totally different person from the one I know and this will possibly be the same for you all.

Take thought that the person you love to the very depths of your soul is still with you,
but just thinks and sees in a different mental form from you. Their reality is somewhat strange to us, but it is their reality and their world, one that we may only venture into from time to time.

For those of us left floundering, and wondering how did they get like this ? feeling guilty, taking every slight to heart, feeling knocked from pillar to post and still going to the ends of the earth and back, we have to stay strong and fight for them. They don’t understand how much they hurt us and scar our heart but we fight their corner and we do it because we love unconditionally that person and we will never give up on those who cannot speak and fight for themselves.

My love and prayers are for all xx
 

Sunshine2*

Registered User
May 16, 2019
97
Against everyone’s advice I brought my husband home in February after seven months in hospital after breaking his hip twice. He has advanced Parkinson’s, dementia and cannot walk at all.
He was refused fully funding three times, which no one at the hospital could understand why - I am appealing against the decision and can never understand why we cannot have full funding or even part funding at home, but that’s for another time.

I am strong minded and have been through some extremely tough times in my life, but this is by far the absolutely most horrendous experience ever. To those of you on a good day who think your loved one can come home - think again good people and remember how devious dementia can be. That person will turn and for absolutely no
reason put you through hell time after time and all you are doing is your best for them which they are totally incapable of understanding.
My heart truly goes out to you all, and I fully understand the heartbreak you experience. My mum has been in a nursing home for 13 years and is now palliative care with Alzheimer’s. I have been through every stage of this horrendous and harrowing journey with her although she has not known me for a long long time. She has enjoyed being in the nursing home and she is so loved by everyone there. They have however seen a totally different person from the one I know and this will possibly be the same for you all.

Take thought that the person you love to the very depths of your soul is still with you,
but just thinks and sees in a different mental form from you. Their reality is somewhat strange to us, but it is their reality and their world, one that we may only venture into from time to time.

For those of us left floundering, and wondering how did they get like this ? feeling guilty, taking every slight to heart, feeling knocked from pillar to post and still going to the ends of the earth and back, we have to stay strong and fight for them. They don’t understand how much they hurt us and scar our heart but we fight their corner and we do it because we love unconditionally that person and we will never give up on those who cannot speak and fight for themselves.

My love and prayers are for all xx
Hello Lirene,
I was in tears reading your account, so true and from the heart. You have put loved ones first and are a truly kind, caring and wonderful person.
I too went against everyone’s advice and brought my husband home from hospital in April. He has complex care needs, has had many conditions including aplastic anaemia, a brain haemorrhage, epilepsy, disabled with Multiple Sclerosis, had a mini stroke and has MS Dementia. He has an indwelling catheter, bowel problems, optic neuritis and nystagmus.
He says some pretty hurtful things to me and is often angry and shouty. Each day just drifts into another day and yet, like you, we continue to give them all we have, with constant care and attention. I hope you have some assistance, as I know lifting and pushing my husband in his wheelchair everywhere has caused, in my opinion, my Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis in my neck and spine.
I hope at some point, you will get some respite, even a few days will give you some time for you.
With regards to being fully funded etc. I really don’t understand why this can’t be granted either.
I send you my best wishes, hoping you are getting some sleep and some time for you. Please take care and look after yourself too.
 

Stacey sue

Registered User
Jan 24, 2020
66
Thankyou for spelling it out so clearly!! You describe exactly how it is. I will read your post every time I have a wobble. This forum is a life saver. Thanks again for all good advice from this thread. SSue.
 

Dutchman

Registered User
May 26, 2017
771
Devon
Sometimes I don’t know how to put my misery into words and, anyway, I suspect me going on about it could be boring. I just need to post to you as it calms me down as I’ve no one here to make a cup of tea and comfort me

Im ironing clothes and listening to some music and I look up at a picture of Bridget when she was just on the edge of the dementia affecting her. My love, my love where have you gone? Well now I’m a complete mess, howling at something, saying why us when there’s millions of couples out there enjoying just getting old together. I want to get angry at someone or something that could do this to us.

it worries me that I can suddenly lose it like this and feel that there’s really no point without Bridget in my life. Is it realistic that we’re expected to cope with this grief without going under? What also worries me is that it’s nearly 10 months since she went into the home and I’m still like this.

Anyway, thanks for listening and my best wishes for you as you go through your own personal nightmare of dementia.

Peter
 

Dutchman

Registered User
May 26, 2017
771
Devon
Do I, don’t I.

Shall I go visit this evening or not.? I’m reluctant to go because it upsets me and want to go because I want to see her. What a state to be in.

Just phoned the home and Bridgets had a good day. She certainly seems more content than me. So I’ll go tomorrow instead .

Its so hard to accept that the care home is her home now.. Some friends came round today and I was describing my feelings and that nagging need to have her back here even though I know it’s not possible. They were shocked that I even mentioned it. But they’re not me and cannot understand the sadness deep inside.

Bless you all

Peter
 

Lirene

Registered User
Sep 15, 2019
194
Do I, don’t I.

Shall I go visit this evening or not.? I’m reluctant to go because it upsets me and want to go because I want to see her. What a state to be in.

Just phoned the home and Bridgets had a good day. She certainly seems more content than me. So I’ll go tomorrow instead .

Its so hard to accept that the care home is her home now.. Some friends came round today and I was describing my feelings and that nagging need to have her back here even though I know it’s not possible. They were shocked that I even mentioned it. But they’re not me and cannot understand the sadness deep inside.

Bless you all

Peter
We are all deeply sad for you Peter, you have coped and done everything you possibly can over the years you looked after Bridget, cared so deeply for, cried and screamed over and certainly tortured yourself over. You fought so hard against all the odds for years, but in the end you came against the brick wall of dementia and no matter how hard you try to break it down you cannot. You are now in the grieving process but for someone who has not been taken, but grieving for a living soul. Grieving this way is the hardest most torturous. heartbreaking experience of most people’s lives - the living, breathing, vibrant person they knew is gone, forever, - death is a kindness you are waiting for and until then you experience the grief for the living. Bridget is happy now in her world, this world where you are on the outside looking in. She is oblivious to reality and knows virtually nothing that is going on. Dementia is a lost, but certainly not forgotten, soul wandering but not wanting, not asking, but being given. They didn’t want to be this way and certainly didn’t want to forget, it’s as cruel for them as us but cruel is not their reality as it is ours, their reality is kindness and they live now in a world of twilight of their own. Most importantly though they are still so loved as they were, and certainly as they are, but they are just not similarly able to return that love.

My prayers and thoughts are for you all. Go forward into this day may the Lord give you his blessings and strength to fight for evermore xx
 

Dutchman

Registered User
May 26, 2017
771
Devon
Bless you Lirene. Your reply is very welcomed.

I’ve just got back from the home and as usual I’m a crying mess. I’ve said all of this so many times but I know us posters will appreciate the need to just “get it out“.

Again it’s the little things that upset me. I place my hand on the window and she reaches over, a real effort to place her hand on mine. She says “look after yourself” and I’m looking at a woman who represents all of me and my life. How could I not feel ripped apart.

God bless her and keep her safe and content.

There’s little else I can do but to do what I’m doing. No wonder I find comfort in just sleeping.

All my love to you all

Peter
 

Stacey sue

Registered User
Jan 24, 2020
66
Hi all, I just phoned the CH and spoke to Dave, he was not talking, odd word, rubbish , but I carried on chatting ,and then he said don’t phone me again?? Like I was a nuisance call!! I know it is dementia but still upsetting. Kind thoughts to you all.SSue
 

Dutchman

Registered User
May 26, 2017
771
Devon
Yes Stacey Sue, it is the dementia but never the less it hurts like mad. My Bridget cannot verbalise on the phone so it’s dependent on actually seeing her and her me.

This lockdown can’t go on for ever , surely. Otherwise our love ones we forget even the smallest amount they have left.

Post with the smallest thoughts. It’s good that we connect.

peter
 

Dutchman

Registered User
May 26, 2017
771
Devon
well, i’m back after my surgery and i’m feeling very, very sorry for myself. I needed some of distraction but i could have done without these after effects.

There is absolutely no way i could of handled Bridget as well. At least this. way she’s cared for and i can take it easy.
I’ll write again when i feel more up to it


xxxxPeter
 

kindred

Registered User
Apr 8, 2018
2,493
well, i’m back after my surgery and i’m feeling very, very sorry for myself. I needed some of distraction but i could have done without these after effects.

There is absolutely no way i could of handled Bridget as well. At least this. way she’s cared for and i can take it easy.
I’ll write again when i feel more up to it


xxxxPeter
So good to hear from you Peter and your surgery is over, thank God. I am sorry that you feel so low and having the after effects. Of course you could not have handled Bridget on top of this, she is cared for and you must rest and recover. We are here for you whenever you feel like a chat. Thinking of you, with love Geraldinexx
 

Philbo

Registered User
Feb 28, 2017
834
Kent
well, i’m back after my surgery and i’m feeling very, very sorry for myself. I needed some of distraction but i could have done without these after effects.

There is absolutely no way i could of handled Bridget as well. At least this. way she’s cared for and i can take it easy.
I’ll write again when i feel more up to it


xxxxPeter
Hi Peter

Hope your recovery is speedy and you can get out and about again soon. This period is all about you and looking after your own health and well being? I know only too well, just how much we sacrifice caring for our loved ones, which we are only too willing to do. Be kind to yourself, as you certainly deserve it.

Best wishes
Phil
 

Helly68

Registered User
Mar 12, 2018
705
@Dutchman - give yourself time to recover. I had surgery on my knees a few years ago and it is a shock to the body, quite apart from the operation site itself.
You won't feel like yourself for a bit yet, quite apart from the strain you have been under. As you say, it is good that Bridget is being cared for and maybe it would be good to wait a while before contacting the home, to let yourself get better.
I wish you all the best.