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OH has now passed away

CWR

Registered User
Mar 17, 2019
131
Like everyone else here, you have my utmost sympathy. My mother passed away in hospital, but I can honestly say I saw her get more care from her carers from the lunch club she attended than from the nurses in the ward. I am glad the end was peaceful and that your OH knew you up to near the end. That is such a consolation. My mum, even when unable to speak,a t one point took my hand and kissed it. That helped me immeasurably. When I thought about the times I had been impatient with her and felt guilty, that single act reassured me that she forgave me. The next few weeks will feel unreal and your emotions will be all over the place, but feel free to come on here. It has helped me and I am sure it will help you and anyone else reading it too. Toknow that others are undergoing the same rollercoaster of emotions is tremendously reassuring.Take care
 

Kikki21

Registered User
Feb 27, 2016
2,268
East Midlands
Sending you big hugs @SoAlone & I am
glad to hear the care home really did care so much about your husband & yourself. I did have a mainly good experience with my mum & nurses on her ward in the hospital as she was too poorly to be moved back xx
 

Hazara8

Registered User
Apr 6, 2015
416
In a way this is a final post from me. My wonderful OH finally succumbed to Pneumonia and passed away on 11th January.
He had suffered 3 bouts of pneumonia in the five months leading up to his death, and antibiotics could no longer help him. This was further hampered by his inability to tolerate canula's and fading ability to take medication or understand that he should swallow what was given. Right up until the final few days, when he could no longer communicate he knew me and I am grateful for that. That the end came within 4-5 years of finally getting a diagnosis was a bit of a shock, but supports my theory that he had been unwell for many years by the time that was made, and it was only when it became so severe that he could no longer hide it all the time that we began to see the signs.
The hospital were able to return him to the Nursing Home for the final 10 days of his care and I am so glad of that. During times, when stories of Nursing Home care only seem to be reported in a bad light ( and Oh Yes I do know they are probably true having experienced it ourselves) I want to say that the staff were absolutely wonderful. They came in on their day off and visited from the other units in their breaks to see him. They sat with him overnight, enabling me to take a break and get some much needed rest, but kept me informed with every change that occurred and any changes needed in his treatment to keep him comfortable. They found time to keep me supplied with coffee and if I wanted it food whilst still tending to OH and other residents. It was much better to sit with him in quieter surrounding of his own home, where he was priority rather a hospital ward. No side rooms were available at the hospital as they were completely full. one final piece of wisdom that I can say I have learned over the last 3 years. Please don't discount Nursing Home care as 'putting him/her in a home'.
It was the last thing I wanted too but it enabled OH and I to restore our relationship to husband and wife and there have been many happy and moments of laughter we have shared, that would have been denied to us, i am sure had he remained in our home. Take care everyone and thank you all so much for the support over the last few years. I have good support from family and friends, but I know I couldn't have done it without all of you on here
Your lovely post already contributes here. It conveys so many truths which evolve out of dementia care and especially so, because it stems from direct personal experience. It is a huge transition from the often long pathway of care, to the sudden cessation of that journey with all the anxieties and heartache which accompanied it. But if you feel so willing to remain a part of this forum in future it can only but enhance its function. I feel sure that you will. With warmest wishes.
 

AliceA

Registered User
May 27, 2016
2,701
To you SoAlone and Lilac Blossom, my deepest sympathy at this time. Thank you both for the reassurance about the carehomes, I have heard this before but it is good to have it confirmed.
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
In a way this is a final post from me. My wonderful OH finally succumbed to Pneumonia and passed away on 11th January.
He had suffered 3 bouts of pneumonia in the five months leading up to his death, and antibiotics could no longer help him. This was further hampered by his inability to tolerate canula's and fading ability to take medication or understand that he should swallow what was given. Right up until the final few days, when he could no longer communicate he knew me and I am grateful for that. That the end came within 4-5 years of finally getting a diagnosis was a bit of a shock, but supports my theory that he had been unwell for many years by the time that was made, and it was only when it became so severe that he could no longer hide it all the time that we began to see the signs.
The hospital were able to return him to the Nursing Home for the final 10 days of his care and I am so glad of that. During times, when stories of Nursing Home care only seem to be reported in a bad light ( and Oh Yes I do know they are probably true having experienced it ourselves) I want to say that the staff were absolutely wonderful. They came in on their day off and visited from the other units in their breaks to see him. They sat with him overnight, enabling me to take a break and get some much needed rest, but kept me informed with every change that occurred and any changes needed in his treatment to keep him comfortable. They found time to keep me supplied with coffee and if I wanted it food whilst still tending to OH and other residents. It was much better to sit with him in quieter surrounding of his own home, where he was priority rather a hospital ward. No side rooms were available at the hospital as they were completely full. one final piece of wisdom that I can say I have learned over the last 3 years. Please don't discount Nursing Home care as 'putting him/her in a home'.
It was the last thing I wanted too but it enabled OH and I to restore our relationship to husband and wife and there have been many happy and moments of laughter we have shared, that would have been denied to us, i am sure had he remained in our home. Take care everyone and thank you all so much for the support over the last few years. I have good support from family and friends, but I know I couldn't have done it without all of you on here
It has taken me a while to see your post but I could have written everything that you said, having lost my husband on 13th February, so please accept my sincere condolences for the loss of your husband. It’s a hard old road but friends and family help along the way although I believe the carrying on starts within ourselves. DTP is just the best, people know about the horrors which those who have not experienced it do not and it is a great comfort. Go well and prosper with him in your mind and heart even while broken 💔
 

SoAlone

Registered User
May 19, 2016
142
Devon
So sorry for your loss, but how beautifully you write about your OH. I am at the start of this journey with my OH and am afraid of the future and how I will cope. I think the worst thoughts all the time. Please consider staying with the forum - you may spot a post which you can respond to, and that may be of help to others. I feel I can write things on here which I cannot voice otherwise, because no one knows me here.
Again, I am so, so sorry for your loss and hope you will be able to look to the future knowing you did your utmost for the person you love xx
That was my experience to Wakky. Thoughts that only someone who has been there can understand and not judge you for. I hope you don't but many of us find that we are judged a lot along the way by well meaning people and so called professionals. You know best what OH would want or needs and at times when he can't voice that you have to fight for him. There is a lot of good advice and experience available on here, make use of it. It is surprising particularly with professionals how their attitude can change if they realise that you know what you want and you are not going to back down.
 

SoAlone

Registered User
May 19, 2016
142
Devon
Th
It has taken me a while to see your post but I could have written everything that you said, having lost my husband on 13th February, so please accept my sincere condolences for the loss of your husband. It’s a hard old road but friends and family help along the way although I believe the carrying on starts within ourselves. DTP is just the best, people know about the horrors which those who have not experienced it do not and it is a great comfort. Go well and prosper with him in your mind and heart even while broken 💔
Thank you. So sorry to hear of your loss too. We are indeed all in the same boat on here. The comfort especially during the early days and again now at the end of one journey and beginning of another is enormous. I hope your journey continues well and you have some peace with yourself and your memories for quiet moments ahead. Take care xx
 

SoAlone

Registered User
May 19, 2016
142
Devon
Sending love and a massive hug. This is a very difficult time but your words are so true and comforting. My mum succumbed to pneumonia on January 16th and my experience so similar to yours. I applaud the dedication of the carers in mum's nursing home. I never imagined I wouldn't be able to care for my mum in our home but as the journey progressed the disease ran faster than I could. Looking back I wish I'd known how safe and supported I would be in those final years. xxxxx
Love to you too Yorkshire Lass, I too never imagined that I wouldn't care for OH to the very end, and I still say now if I had known he would need the care at this level for only 2 years maybe I should have stuck with it. But realistically I know it was the best for us both, and better that I didn't know journey would be this short as it may have taken away the good days we had in between
 

YorkshireLass

Registered User
Feb 15, 2017
217
Ilkley
Love to you too Yorkshire Lass, I too never imagined that I wouldn't care for OH to the very end, and I still say now if I had known he would need the care at this level for only 2 years maybe I should have stuck with it. But realistically I know it was the best for us both, and better that I didn't know journey would be this short as it may have taken away the good days we had in between
Exactly we can always look back and ponder what we could have done if only we had known what was ahead of us. Three years in care for mum and me and finally moving to nursing when mum's needs could no longer be met. I sat with her every afternoon and made sure things were as good as they could be. I know that I couldn't have met mum's needs 24/7 on my own and this helped with the guilt of "handing her over" into professional care. Well meaning relatives and friends had much to say about how frequently I visited mum but I did what I knew was right for me and mum. I take comfort from the fact that even when she didn't know me as her daughter she held my hand and was settled and safe for those few hours in her frightening world. Sending love xxx
 

myss

Registered User
Jan 14, 2018
435
My condolences to you @SoAlone for the loss of your dear husband. I'm glad you can take solace at this sad time that both him and you were comforted by the actions of the care home staff in his last days. xx
 

Firecatcher

Registered User
Jan 6, 2020
21
So very sorry to hear of the loss of your beloved husband and hope you have the support of family and friends. I also hope you’ll consider staying on the forum as I’m sure you must have lots of advice to give to others who are at different stages of this long and difficult journey. Please take care.
 

Wakky

Registered User
Jan 5, 2020
44
That was my experience to Wakky. Thoughts that only someone who has been there can understand and not judge you for. I hope you don't but many of us find that we are judged a lot along the way by well meaning people and so called professionals. You know best what OH would want or needs and at times when he can't voice that you have to fight for him. There is a lot of good advice and experience available on here, make use of it. It is surprising particularly with professionals how their attitude can change if they realise that you know what you want and you are not going to back down.
Thank you for your kind reply. My mother also had Alzheimer's and she died almost 20 years ago aged 72. I have to say, my husband having AD is completely different as he is the one I live with 24/7 and so am seeing every small change in him. As I said to the doctor at the memory clinic referral, (he was only diagnosed 4 months ago), "he is just not the same". Already he is becoming not the man I know. I dread the future and OH and AD are all I think of all the time. In many ways, I want to press the non-existent "fast forward" button and take us to the end of this horror - and I am well aware how disgusting that sounds. Maybe I should pray that I die first then I don't have to see him need a carer and me be his carer. I am so sorry, You have got enough to deal with at present without me ranting. You sound as if you have been full of love and patience, and maybe I am still coming to terms with the diagnosis. I am so, so sorry for ranting x
 

Splashing About

Registered User
Oct 20, 2019
405
Thank you for your kind reply. My mother also had Alzheimer's and she died almost 20 years ago aged 72. I have to say, my husband having AD is completely different as he is the one I live with 24/7 and so am seeing every small change in him. As I said to the doctor at the memory clinic referral, (he was only diagnosed 4 months ago), "he is just not the same". Already he is becoming not the man I know. I dread the future and OH and AD are all I think of all the time. In many ways, I want to press the non-existent "fast forward" button and take us to the end of this horror - and I am well aware how disgusting that sounds. Maybe I should pray that I die first then I don't have to see him need a carer and me be his carer. I am so sorry, You have got enough to deal with at present without me ranting. You sound as if you have been full of love and patience, and maybe I am still coming to terms with the diagnosis. I am so, so sorry for ranting x
Your rant is very understood by many on here. Your words are not disgusting and this is the place to let go of those thoughts. It’s a grim expectation for you based on experience. You will however have learnt from your mother and your experience will be made easier by that. I would use your knowledge to help you plan so that YOU have a future that doesn’t make you despair x
 

Philbo

Registered User
Feb 28, 2017
779
Kent
Hi @SoAlone

So sorry to hear of your loss - my wife passed away on 19th January so I understand just how painful it can be.

When I posted on TP about her passing, the lovely folk encouraged me to keep posting, to help others and to keep connected to the people who have played a significant part in helping me through my 6 year journey.

I hope you will do the same so I wish you well in getting through these difficult times.

Kind regards
Phil
 

Wakky

Registered User
Jan 5, 2020
44
Your rant is very understood by many on here. Your words are not disgusting and this is the place to let go of those thoughts. It’s a grim expectation for you based on experience. You will however have learnt from your mother and your experience will be made easier by that. I would use your knowledge to help you plan so that YOU have a future that doesn’t make you despair x
Hello SplashingAbout, I just want to say thank you
 

myss

Registered User
Jan 14, 2018
435
Hello SplashingAbout, I just want to say thank you
I just wanted to add to SplashingAbout's comment - I fully understand what you meant about pushing the fast forward button. I felt the same about my dad when he reached the stage where he was just existing, not living a life anymore. For someone who has been through this experience once and now going on a similar journey again, I'd say you were just being apprehensive and honest. All the best to you x
 

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