End of life pathway so suddenly

Brother47

Registered User
Jan 18, 2020
174
0
It’s been a torturous few weeks watching my brother’s FTD accelerate so very rapidly. He lost a lot of weight and found it a huge struggle to move. He had to have absolutely everything done for him but he still seemed to have a bit of interest in his surroundings and did his best to talk. He’d only been taking a few mouthfuls of food a day and a few mouthfuls of fortified drink.

However, just three days ago he stopped drinking and became totally bedridden.
The doctor was called to examine him and concluded that my brother’s body had reached the end of life stage. It seems he’s had lost the ability to swallow. It was all so sudden.

So the doctor offered me two choices for his end of life pathway. Either for him to go into the nearest hospital to be looked after or to stay at the care home. I chose the latter. The thought of him ending his life in an anonymous ward was not an option. The care home have been brilliant at looking after him and they are more than capable of keeping him comfortable.

It’s so sad and although I knew it was coming, I am shocked at how fast this final stage has evolved.

I sat with him this morning and he opened his eyes and seemed to know me. I was holding his hand and talking to him. I’m hoping that wasn’t the final goodbye but I suppose it could have been though I’m told it’s possible that he may be able to go on like this for a week or more. It’s tough. I feel exhausted and my nerves are on edge but it is, what it is. That’s an irritating phrase, I know, but true in this case. Just have to be strong.
 

Gosling

Volunteer Host
Aug 2, 2022
1,548
0
South West UK
Thinking of you too @Brother47 . The important thing now is that your brother is comfortable and pain free. It's certainly a horrible time. I very much hope when the time comes, it is a peaceful end.
 

Cazzita

Registered User
May 12, 2018
617
0
Sorry to hear this, very sad time for you and your brother. Wishing you the best on this part of the journey. x
 

CatherineS

New member
Sep 28, 2023
3
0
It’s been a torturous few weeks watching my brother’s FTD accelerate so very rapidly. He lost a lot of weight and found it a huge struggle to move. He had to have absolutely everything done for him but he still seemed to have a bit of interest in his surroundings and did his best to talk. He’d only been taking a few mouthfuls of food a day and a few mouthfuls of fortified drink.

However, just three days ago he stopped drinking and became totally bedridden.
The doctor was called to examine him and concluded that my brother’s body had reached the end of life stage. It seems he’s had lost the ability to swallow. It was all so sudden.

So the doctor offered me two choices for his end of life pathway. Either for him to go into the nearest hospital to be looked after or to stay at the care home. I chose the latter. The thought of him ending his life in an anonymous ward was not an option. The care home have been brilliant at looking after him and they are more than capable of keeping him comfortable.

It’s so sad and although I knew it was coming, I am shocked at how fast this final stage has evolved.

I sat with him this morning and he opened his eyes and seemed to know me. I was holding his hand and talking to him. I’m hoping that wasn’t the final goodbye but I suppose it could have been though I’m told it’s possible that he may be able to go on like this for a week or more. It’s tough. I feel exhausted and my nerves are on edge but it is, what it is. That’s an irritating phrase, I know, but true in this case. Just have to be strong.
Oh Brother47, this is such a hard time. My husband is now at that stage, after 3 or 4 days of hardly eating at all, he became unable to swallow and now has had nothing to eat or drink for two days. He is lying in bed, being turned regularly by the care hime staff to prevent painful pressure sores. He is receiving morphine and a sedative from a syringe pump and is unresponsive. Before the medication he was groaning and had awful muscle spasms. Since receiving it he is sleeping peacefully and free from pain.

I have been visiting and sitting with him for three days now. I have been talking to him about some happy memories, how we met, holidays and also reading to him. The nurse said to me that although he appears to be unresponsive, hearing is the last sense to go in the dying process and that he might well be hearing me. I found that doing so calms and comforts me too and there is something beautiful about the quiet unfolding days, enabling me to gradually realise that his death is near, talk to him about it and accept it.
I wrote a letter which I read out to him. I'll put it here in case it might comfort anyone else going through this.

You grow steadily weaker my love and very soon your soul will cast off the old, worn-out and broken body it inhabits and ascend joyfully to the welcoming light of absolute love and freedom from pain. How could I be sad about that when I have witnessed your fear and agony? My tears are for myself as I face the challenge of a new and different life without you. But I realise that I have tools to assist me on this journey: courage, optimism, strength, joy and love, all of which have been gifts from you to me during the many years of our life together. Goodbye my love - part of my heart will go with you as part of yours will remain with me.
 

jay6

Registered User
Jun 25, 2023
952
0
Sorry to hear your sad news @Brother47. Wishing you all the strength. At least your brother is now at peace and no longer suffering
 

florencenightingale

New member
Oct 17, 2023
5
0
Oh Brother47, this is such a hard time. My husband is now at that stage, after 3 or 4 days of hardly eating at all, he became unable to swallow and now has had nothing to eat or drink for two days. He is lying in bed, being turned regularly by the care hime staff to prevent painful pressure sores. He is receiving morphine and a sedative from a syringe pump and is unresponsive. Before the medication he was groaning and had awful muscle spasms. Since receiving it he is sleeping peacefully and free from pain.

I have been visiting and sitting with him for three days now. I have been talking to him about some happy memories, how we met, holidays and also reading to him. The nurse said to me that although he appears to be unresponsive, hearing is the last sense to go in the dying process and that he might well be hearing me. I found that doing so calms and comforts me too and there is something beautiful about the quiet unfolding days, enabling me to gradually realise that his death is near, talk to him about it and accept it.
I wrote a letter which I read out to him. I'll put it here in case it might comfort anyone else going through this.

You grow steadily weaker my love and very soon your soul will cast off the old, worn-out and broken body it inhabits and ascend joyfully to the welcoming light of absolute love and freedom from pain. How could I be sad about that when I have witnessed your fear and agony? My tears are for myself as I face the challenge of a new and different life without you. But I realise that I have tools to assist me on this journey: courage, optimism, strength, joy and love, all of which have been gifts from you to me during the many years of our life together. Goodbye my love - part of my heart will go with you as part of yours will remain with me.
Thank you so much for sharing your heartfelt letter. It is a terrible time when you lose someone you love but I hope you can continue to be positive and make the most of your time now.
 

Brother47

Registered User
Jan 18, 2020
174
0
Oh Brother47, this is such a hard time. My husband is now at that stage, after 3 or 4 days of hardly eating at all, he became unable to swallow and now has had nothing to eat or drink for two days. He is lying in bed, being turned regularly by the care hime staff to prevent painful pressure sores. He is receiving morphine and a sedative from a syringe pump and is unresponsive. Before the medication he was groaning and had awful muscle spasms. Since receiving it he is sleeping peacefully and free from pain.

I have been visiting and sitting with him for three days now. I have been talking to him about some happy memories, how we met, holidays and also reading to him. The nurse said to me that although he appears to be unresponsive, hearing is the last sense to go in the dying process and that he might well be hearing me. I found that doing so calms and comforts me too and there is something beautiful about the quiet unfolding days, enabling me to gradually realise that his death is near, talk to him about it and accept it.
I wrote a letter which I read out to him. I'll put it here in case it might comfort anyone else going through this.

You grow steadily weaker my love and very soon your soul will cast off the old, worn-out and broken body it inhabits and ascend joyfully to the welcoming light of absolute love and freedom from pain. How could I be sad about that when I have witnessed your fear and agony? My tears are for myself as I face the challenge of a new and different life without you. But I realise that I have tools to assist me on this journey: courage, optimism, strength, joy and love, all of which have been gifts from you to me during the many years of our life together. Goodbye my love - part of my heart will go with you as part of yours will remain with me.
Hi CatherineS. I read your words with a lot of familiarity. Your words are beautiful and resonate. I believe that in the dying process, they can hear you. I talked to my brother on the last two occasions I visited him. before he passed. He was 'out of it' on both occasions but on the last but one, whilst I was holding his hand and talking to him, he managed to raise his other hand and put it on top of mine, just briefly, he sort of smoothed my hand. I took that as being a sign he could hear me. I am sorry for my slow response but I've been away. I wish you well.
 

Bluebell16

Registered User
Jan 2, 2014
2
0
Oh Brother47, this is such a hard time. My husband is now at that stage, after 3 or 4 days of hardly eating at all, he became unable to swallow and now has had nothing to eat or drink for two days. He is lying in bed, being turned regularly by the care hime staff to prevent painful pressure sores. He is receiving morphine and a sedative from a syringe pump and is unresponsive. Before the medication he was groaning and had awful muscle spasms. Since receiving it he is sleeping peacefully and free from pain.

I have been visiting and sitting with him for three days now. I have been talking to him about some happy memories, how we met, holidays and also reading to him. The nurse said to me that although he appears to be unresponsive, hearing is the last sense to go in the dying process and that he might well be hearing me. I found that doing so calms and comforts me too and there is something beautiful about the quiet unfolding days, enabling me to gradually realise that his death is near, talk to him about it and accept it.
I wrote a letter which I read out to him. I'll put it here in case it might comfort anyone else going through this.

You grow steadily weaker my love and very soon your soul will cast off the old, worn-out and broken body it inhabits and ascend joyfully to the welcoming light of absolute love and freedom from pain. How could I be sad about that when I have witnessed your fear and agony? My tears are for myself as I face the challenge of a new and different life without you. But I realise that I have tools to assist me on this journey: courage, optimism, strength, joy and love, all of which have been gifts from you to me during the many years of our life together. Goodbye my love - part of my heart will go with you as part of yours will remain with me.
I am exactly this stage and feel exactly as you wrote. Beautifully put. I feel I can’t bear watching my man waste away and worse is having his children see it too.
I visit daily as he is an hour away but I can’t manage to stay all the time . I am exhausted..