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This time it's for real

CarolandVic

Registered User
May 1, 2020
34
0
Three weeks ago My hubby Vic was again in the hospital due to seizures. He also had a temperature of over 40 as he had inhaled and yet again had pneumonia. He tested negative for covid three times so was put onto an ordinary ward. I was told that he could come home once a care package was in place. That night the whole family was advised to go in as he was critical after more seizures, we have been here many times now. The fear that it's the end and the hope that it isn't. He still fought on though and survived the night. He went on to have more seizures over the next few days. That was 9 days ago. Today a doctor rang me and bless her talked to me for an hour. She told me that his swallowing reflex had become very poor and they were putting him onto liquid food. His mental state has begun to reach his physical state now. They are going to get him home when he is stable so that he can spend his last weeks with me. This has been a long journey for us both and I don't want to lose him but he is exhausted, mentally and physically, and says that he has had enough. I knew that one day this had to happen but at 73 we thought we had a good few years left together. Bless all of you for what you are going through. No one else can possibly understand the long, slow death that vascular dementia is.
 
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Izzy

Volunteer Moderator
Aug 31, 2003
64,234
0
69
Dundee
I am so sorry to read about the current situation with your husband @CarolandVic.

It’s so terribly sad but I’m glad you will have him at home with your for his last days. 73 is no age at all. It’s really heartbreaking.

I wish you strength for the days to come Please keep posting here as you know you are amongst people who understand.
 

Izzy

Volunteer Moderator
Aug 31, 2003
64,234
0
69
Dundee
I was just reading @Jessbow’s comment and she makes a good point. I hope you have support organised. My mum had vascular dementia and lived her last days at home with us. I had support from the district nurse service and I had some overnight sits from Marie Cure nurses. That support was incredibly important.
 

pevensey

Registered User
Feb 14, 2012
275
0
South East Coast.
Three weeks ago My hubby Vic was again in the hospital due to seizures. He also had a temperature of over 40 as he had inhaled and yet again had pneumonia. He tested negative for covid three times so was put onto an ordinary ward. I was told that he could come home once a care package was in place. That night the whole family was advised to go in as he was critical after more seizures, He still fought on though and survived the night. He went on to have more seizures over the next few days. That was 9 days ago. Today a doctor rang me and bless her talked to me for an hour. She told me that his swallowing reflex had become very poor and they were putting him onto liquid food. His mental state has begun to reach his physical state now. They are going to get him home when he is stable so that he can spend his last weeks with me. This has been a long journey for us both and I don't want to lose him but he is exhausted, mentally and physically, and says that he has had enough. I knew that one day this had to happen but at 73 we thought we had a good few years left together. Bless all of you for what you are going through. No one else can possibly understand the long, long death that vascular dementia is.
@CarolandVic I really do feel for you and know exactly how desperate and unbelievabley sad you feel. My hubby passed away 3 weeks ago after enduring vascular dementia for 5 yrs. He too suddenly became very ill 2 weeks before after having a stroke and passed away 2 weeks later. Unfortunatly I was unable to touch him or hold his hand in his last few days, I had to sit at end of his bed behind a screen with full PPE on he was in a nursing home. . He was very delerious and also couldn't swallow, it was very distressing to see him like that. I'm. so so sorry you are going through what your going through @CarolandVic and my heart goes out to you. God bless you and keep you strong
 

CarolandVic

Registered User
May 1, 2020
34
0
@CarolandVic I really do feel for you and know exactly how desperate and unbelievabley sad you feel. My hubby passed away 3 weeks ago after enduring vascular dementia for 5 yrs. He too suddenly became very ill 2 weeks before after having a stroke and passed away 2 weeks later. Unfortunatly I was unable to touch him or hold his hand in his last few days, I had to sit at end of his bed behind a screen with full PPE on he was in a nursing home. . He was very delerious and also couldn't swallow, it was very distressing to see him like that. I'm. so so sorry you are going through what your going through @CarolandVic and my heart goes out to you. God bless you and keep you strong
It has been 5 years since Vic was diagnosed. 7 years since his first major stroke. I am lucky that he is coming home. There are so many things unsaid. I just hope we'll have enough time to say them. I am so sorry for you, losing your hubby and not being able to hold him and love him to his final sleep. I am praying that I get that chance.
 

CarolandVic

Registered User
May 1, 2020
34
0
I am so sorry to read about the current situation with your husband @CarolandVic.

It’s so terribly sad but I’m glad you will have him at home with your for his last days. 73 is no age at all. It’s really heartbreaking.

I wish you strength for the days to come Please keep posting here as you know you are amongst people who understand.
Thank you Izzy. After I spoke to the doctor I was crying and needed someone to talk to. All of my children were engaged or busy online, all working from home, then I remembered the forum. I haven't visited for a few months., things seemed stable since September although gradually declining. The comfort it has given me being back here is wonderful. Thank you everyone for caring and for sharing.
 

CarolandVic

Registered User
May 1, 2020
34
0
How terribly sad, many of us will no doubt be holding your hand over the forthcoming days.

Will you manage at home?
The care package will be arranged before he comes home. It will be a couple of weeks yet as he has to go to a rehab ward once he is medically stable. Then we will know what he needs. A hospital bed or not etc. I had carers last October but it was a disaster. Coming in the afternoon even to get him up. I sacked them. Now I know that I can choose the carers we want so things will be better.
 

CarolandVic

Registered User
May 1, 2020
34
0
It has been 5 years since Vic was diagnosed. 7 years since his first major stroke. I am lucky that he is coming home. There are so many things unsaid. I just hope we'll have enough time to say them. I am so sorry for you, losing your hubby and not being able to hold him and love him to his final sleep. I am praying that I get that chance.
I just realised that I failed to mention that after 12 days in hospital he caught Covid. This after shielding since last March. Luckily he'd had the vaccine three weeks before and personally, I don't think it has made him worse but his crp levels are still through the roof. They had already advised a few months ago to agree to a DNR. I did agree because he has suffered enough. What else can the fates throw at us? Your mention of having to endure what you did with the full protection rig made me remember. When I went in to see him for what we were told could be the last time I lay on his bed and put my arms around him. He wasn't diagnosed with covid until the next morning when I had a phone call to tell me. I don't really care. I held him and although he was in a coma I felt that he knew.
 

pevensey

Registered User
Feb 14, 2012
275
0
South East Coast.
I just realised that I failed to mention that after 12 days in hospital he caught Covid. This after shielding since last March. Luckily he'd had the vaccine three weeks before and personally, I don't think it has made him worse but his crp levels are still through the roof. They had already advised a few months ago to agree to a DNR. I did agree because he has suffered enough. What else can the fates throw at us? Your mention of having to endure what you did with the full protection rig made me remember. When I went in to see him for what we were told could be the last time I lay on his bed and put my arms around him. He wasn't diagnosed with covid until the next morning when I had a phone call to tell me. I don't really care. I held him and although he was in a coma I felt that he knew.
@CarolandVic I really wanted to do that, just do what I was told I couldnt do and leave the screen and go and sit next to hubby, hold him touch him, but they told me there was a camera next to his bed and I was scared they would see me and tell me to leave. I cant forget it. I'm sending you a big virtual hug and holding your hand @CarolandVic
 

CarolandVic

Registered User
May 1, 2020
34
0
@CarolandVic I really wanted to do that, just do what I was told I couldnt do and leave the screen and go and sit next to hubby, hold him touch him, but they told me there was a camera next to his bed and I was scared they would see me and tell me to leave. I cant forget it. I'm sending you a big virtual hug and holding your hand @CarolandVic
That is so awful for you. My mum is in a care home with Altzheimers and it is the same there. Plexiglass, masks, no touching. She doesn't understand why she can't go home never mind why we can't hold her hand. At the end we should be able to be with them. It is heartless otherwise.
 

Pusskins

Registered User
Jun 6, 2020
213
0
New Zealand
Three weeks ago My hubby Vic was again in the hospital due to seizures. He also had a temperature of over 40 as he had inhaled and yet again had pneumonia. He tested negative for covid three times so was put onto an ordinary ward. I was told that he could come home once a care package was in place. That night the whole family was advised to go in as he was critical after more seizures, we have been here many times now. The fear that it's the end and the hope that it isn't. He still fought on though and survived the night. He went on to have more seizures over the next few days. That was 9 days ago. Today a doctor rang me and bless her talked to me for an hour. She told me that his swallowing reflex had become very poor and they were putting him onto liquid food. His mental state has begun to reach his physical state now. They are going to get him home when he is stable so that he can spend his last weeks with me. This has been a long journey for us both and I don't want to lose him but he is exhausted, mentally and physically, and says that he has had enough. I knew that one day this had to happen but at 73 we thought we had a good few years left together. Bless all of you for what you are going through. No one else can possibly understand the long, slow death that vascular dementia is.
@CarolandVic I am so sorry for the emotional pain you have to endure. Dementia is such a terrible disease for both the sufferer and caregiver. I pray you have the strength to get through the days ahead.
 

CarolandVic

Registered User
May 1, 2020
34
0
@CarolandVic I am so sorry for the emotional pain you have to endure. Dementia is such a terrible disease for both the sufferer and caregiver. I pray you have the strength to get through the days ahead.
Thank you. I hoped that I would feel less weepy after a night's sleep but I don't. I suppose I am already grieving. I think I have been for a while but I've had the practicalities of caring to keep me going. When they bring Vic home I shall be kept busy again.