Is this the end

Leeds

Registered User
Sep 20, 2015
165
Dad, who has late stage vascular dementia, survived 3 months in hospital at the start of the year, has now got COVID. He is in a good care home, in isolation. He is in his 8th day and very poorly. I was able to visit him briefly yesterday as I suspect he is dying. He was unconscious, breathing was rattling, he is not eating or drinking and not taking any medication. He didn’t seem to be in pain. Practice nurse is visiting to check on him. I phoned twice today but no change. This evening the carer told me he got out of bed, I was so shocked, thinking he was much improved. I asked how, she told me, he rolled out of bed and fell on the floor. Surely, he should be secure in bed. I asked when would they contact the gp to review meds and apparently it won’t be until Monday. All I want is for him to be comfortable and pain free. Dreading every day for a phone call.
 

Just me

Registered User
Nov 17, 2013
494
I’m so sorry to hear about your Dad @Leeds, I have an idea what you are going through as my mum has been in hospital since 8/11/20 with COVID pneumonia and though I’m desperate for information my stomach turns over when the phone rings.

It must be a little comfort that you’re allowed to visit and he didn’t seem in pain though it seems an unreasonable amount of time to have to wait for the GP. How often is the Practice Nurse visiting?

I’m not sure what the protocol is to keep people safe in bed, I’ve read that if side bars are put up often patients will climb over them and cause greater injury. Perhaps ask the CH what they are doing to keep him safe.

The waiting is horrible and I wish you strength to get through this x
 

canary

Registered User
Feb 25, 2014
13,946
South coast
All I want is for him to be comfortable and pain free
Care homes are usually well versed in this. My mum passed away in her care home, tended by the carers and with visits from the district nurses and the GP.
It is a horrible thing to watch and the physical changes can be upsetting if you are not expecting them, but mum was not distressed.

(((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,992
south-east London
This is such a stressful time for you and my heart goes out to you. My husband would roll out of bed too but I was able to prevent any bad injuries by having a mattress on the floor on his side of the bed.

When he went to a specialist dementia hospital ward in his final months he was given a bed which lowered about six inches off the ground and they also placed a mattress alongside this in case he rolled off the bed - which he did quite regularly.

I do sympathise with your feelings of dread when the phone rings, I remember it oh so well.

I had the benefit of being with my husband at the end and he was peaceful and kept pain free. The care home will know exactly how to keep your dad just as comfortable - though the pain of separation you feel must be terrible.

Wishing you strength during this awful time.
 

Frank24

Registered User
Feb 13, 2018
55
Hi there, so sorry to hear about your Dad. Falling out of bed is def not the same as getting out of the bed. Same thing happened to my mum recently and as POA I had to give permission for special rails. They don’t usually do this until it’s needed as it is considered a further deprivation of Liberty. Try speaking to the manager and asking if this can be done to prevent future falls. In my mums case her sensor pad failed 😞 so she was there for a while. Not able to speak or move herself. Bloody heartbreaking 😭
 

Leeds

Registered User
Sep 20, 2015
165
Hi there, so sorry to hear about your Dad. Falling out of bed is def not the same as getting out of the bed. Same thing happened to my mum recently and as POA I had to give permission for special rails. They don’t usually do this until it’s needed as it is considered a further deprivation of Liberty. Try speaking to the manager and asking if this can be done to prevent future falls. In my mums case her sensor pad failed 😞 so she was there for a while. Not able to speak or move herself. Bloody heartbreaking 😭
Your poor mum, It is so worrying, dad was agitated last night so they put the mattress on the floor, paramedics came and gave extra pain release. Gp called and end of life meds ready. Just waiting by the phone all night. They said, I could go in but, I am so scared of COVID because of my age. I went to see him on Friday and said my goodbyes. This is all too much, I hope your situation is improved and your mum is safe and sound x
 

Banjomansmate

Registered User
Jan 13, 2019
2,347
Dorset
Your poor mum, It is so worrying, dad was agitated last night so they put the mattress on the floor, paramedics came and gave extra pain release. Gp called and end of life meds ready. Just waiting by the phone all night. They said, I could go in but, I am so scared of COVID because of my age. I went to see him on Friday and said my goodbyes. This is all too much, I hope your situation is improved and your mum is safe and sound x
I may have unusual views on this but providing you have the chance to say your “Goodbye” I am not sure that actually being at someone’s death bed is really that important. There isn’t anything you can do when it happens. By chance I was holding my husband’s hand when, although he was dying of lung cancer, his heart just stopped suddenly and unexpectedly. My one consolation was that he went exactly the way he wished.
. I said my “Goodbye” to The Banjoman three days before he died because I wanted to stay out of the way of his family and could see no point in hordes of people just sitting there waiting for him to die. As it happened his brother and sister-in-law were with him when it was obvious he wasn’t going to last much longer and they stayed with him but I don’t think they liked the experience much!
As it is often said that people often seem to wait until their loved ones have left the room before they stop breathing it is always possible you wouldn’t be there anyway, so please take consolation in that you have done all that you can.
 

Leeds

Registered User
Sep 20, 2015
165
I may have unusual views on this but providing you have the chance to say your “Goodbye” I am not sure that actually being at someone’s death bed is really that important. There isn’t anything you can do when it happens. By chance I was holding my husband’s hand when, although he was dying of lung cancer, his heart just stopped suddenly and unexpectedly. My one consolation was that he went exactly the way he wished.
. I said my “Goodbye” to The Banjoman three days before he died because I wanted to stay out of the way of his family and could see no point in hordes of people just sitting there waiting for him to die. As it happened his brother and sister-in-law were with him when it was obvious he wasn’t going to last much longer and they stayed with him but I don’t think they liked the experience much!
As it is often said that people often seem to wait until their loved ones have left the room before they stop breathing it is always possible you wouldn’t be there anyway, so please take consolation in that you have done all that you can.
Thank you so much for sharing your experience, it has helped me a great deal. The staff, that have looked after dad, during lockdown are with him in isolation. I’m sure he is comforted by their familiar voices, if he can hear them. X
 

Frank24

Registered User
Feb 13, 2018
55
Your poor mum, It is so worrying, dad was agitated last night so they put the mattress on the floor, paramedics came and gave extra pain release. Gp called and end of life meds ready. Just waiting by the phone all night. They said, I could go in but, I am so scared of COVID because of my age. I went to see him on Friday and said my goodbyes. This is all too much, I hope your situation is improved and your mum is safe and sound x
Ah you poor thing and so sorry this is so hard in normal circumstances and COVID-19 just makes everything more difficult, sad and scary.
I don’t think your dad would want to put you at any risk. Take care
 

Leeds

Registered User
Sep 20, 2015
165
Care homes are usually well versed in this. My mum passed away in her care home, tended by the carers and with visits from the district nurses and the GP.
It is a horrible thing to watch and the physical changes can be upsetting if you are not expecting them, but mum was not distressed.

(((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))
Thank you so much, his COVID infection has robbed us of final precious moments as well as months of isolation this year. Like you say, he is in familiar surrounding with familiar sounds and voices around him. I keep thinking this is not really happening. X
 

Leeds

Registered User
Sep 20, 2015
165
Thank you so much for all your posts, it has helped a great deal through this difficult time. Dad passed away peacefully last night. He was in familiar surrounding with sounds he knew. He was watched over by carers who have looked after him over the last few months. It has been a privilege to be his daughter and to be his advocate throughout his dementia journey. We have battled the care system, nhs rules and the injustices of CHC funding system. He is at peace now, but I will continue to fight for equality of dementia suffers and their families. This group has been a fantastic supportive source of information and comfort throughout the journey. Lots of love xx
 

canary

Registered User
Feb 25, 2014
13,946
South coast
I am sorry for your loss @Leeds

Im glad it was peaceful at the end and he was surrounded by people who knew him.

Try and find some peace for yourself now
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