I think it's almost time, but it's hard not really knowing

[sdmhred]

Such a rollercoaster for you @HartleyHugs 😢 I read up on terminal lucidity after your post a couple of weeks back. I knew someone who died from cancer in a hospice who had a similar presentation surprising the family sat around his bedside.

Im of the opinion that the dying person has some ability to control a little and I wonder if your mum is ‘hanging on’ as she keeps saying she doesn’t want to go. Please ignore if this is not helpful the last thing I want to do is upset ….but have you been able to tell her that it’s ok to go? is there anything she might be hanging on for which you can tell her is resolved etc.

My Dad gave me a whole long list of jobs, phoned his children from his previous marriage - the doctors said the next day we would plan eol…..but he told me he was ready to go…he didnt last 12 hours and the hospital were taken aback by the rapidity of it.


please please ignore if this isnt a helpful post.

im glad your husband and son are there for you.

 

[HartleyHugs]

Such a rollercoaster for you @HartleyHugs 😢 I read up on terminal lucidity after your post a couple of weeks back. I knew someone who died from cancer in a hospice who had a similar presentation surprising the family sat around his bedside.

Im of the opinion that the dying person has some ability to control a little and I wonder if your mum is ‘hanging on’ as she keeps saying she doesn’t want to go. Please ignore if this is not helpful the last thing I want to do is upset ….but have you been able to tell her that it’s ok to go? is there anything she might be hanging on for which you can tell her is resolved etc.

My Dad gave me a whole long list of jobs, phoned his children from his previous marriage - the doctors said the next day we would plan eol…..but he told me he was ready to go…he didnt last 12 hours and the hospital were taken aback by the rapidity of it.


please please ignore if this isnt a helpful post.

im glad your husband and son are there for you.

Hi @sdmhred thank you for your post, I maybe should have waited till I got off the bus as it made me cry a little but I seem to do this a lot. I agree with what you have said and I have told her it's ok, and that we'll be ok and that I love her so much and how proud I am of being her daughter. My son who is 12 saw her on Sunday and he doesn't come very often as he gets really upset and the smile she gave him was gorgeous ❤️ he thought he was going to cry and part of me thought ok that's it she's seen the ones she loves then the next day she's like she was 🤯 I feel selfish at times hoping that the end comes soon but she is never going to get better even if she ate a full roast every day and she's not living, she's existing. I have no idea what the next few days/weeks dare I say months will hold but I take strength from the support on here and the support of my family, friends and the staff at the care home

 

[sdmhred]

Oh that’s lovely your mum gave your son such a lovely smile 🥰🥰 What a brave chap - building his maturity for the future.

I‘m glad you‘re finding strength here - me too. It’s the one place we‘re safe to express our feelings in a place we’re understood.

Sorry to make you cry on the bus - tears flowing are good tho….

 

[glenlo]

Hi, I just wanted to share my feelings about my mum who has been really poorly now for 2 weeks. She's been in bed apart from an hour or so a week ago when the carers tried her out in her chair. Last week for a couple of days she was scarily more aware than she has been for such a long time but since this weekend she has been sleeping a lot. She's not refusing food or drink as such but the carers need to put the lidded beaker or spoon to her lips and if she opens her mouth they pop it in. She's not choking or anything yet but she is fed as opposed to eating if that makes sense? The GP is coming to see her at some point tomorrow so they will hopefully be able to give me some better understanding of this time. I'm finding it difficult to understand the fixation on the fact that mum swallows food/drink when it's put in her mouth, I don't want mum to suffer in anyway but surely all the other signs point to her dying. In my dark moments it feels like she is being fed so that the care home can't be held responsible for her death, I know that's stupid but your brain thinks oddly at these times.
I know that death and the talking of it is frowned upon but I wish there was more discussion about it so that we know and understand it more, i'm watching her slowly die in front of my very eyes and I don't know what to do.

 

[glenlo]

Hi , My mom is currently in Hospice and looked fine when she went in . Then they administer heave duty drugs like morphine and say she is in a dying stage where ther make her comfortable but no feeding at all not even intravenous they say her stomach cant handle foods . I'm still learning but have not found any expert outside of the hospice that has heard of this.

 

[cazzerb]

Hi @sdmhred thank you for your post, I maybe should have waited till I got off the bus as it made me cry a little but I seem to do this a lot. I agree with what you have said and I have told her it's ok, and that we'll be ok and that I love her so much and how proud I am of being her daughter. My son who is 12 saw her on Sunday and he doesn't come very often as he gets really upset and the smile she gave him was gorgeous ❤️ he thought he was going to cry and part of me thought ok that's it she's seen the ones she loves then the next day she's like she was 🤯 I feel selfish at times hoping that the end comes soon but she is never going to get better even if she ate a full roast every day and she's not living, she's existing. I have no idea what the next few days/weeks dare I say months will hold but I take strength from the support on here and the support of my family, friends and the staff at the care home

 

[cazzerb]

Hello. I've just joined the forum and I seem to be in a very similar position with my dad. He's been in a lovely care home for three years since my mum died in November 2020, and for the first couple of years really thrived. Over the last year he has deteriorated significantly and in the last month has gone from needing assistance with most things to being on permanent bedrest and totally dependant.
We were called to the home (160 miles from my home) on Monday as he was unresponsive; the GP suggested he didn't have long and may pass away this week. After spending three days with dad, he appeared to improve slightly and by day four, we decided to return home and he was able to eat some weetabix!!
The emotional roller coaster is so extreme with dementia. I'm now worried about planning too much, we are heading towards Christmas and even though we are resigned to the fact he doesn't have long left, we are constantly second guessing what's happening with dad and what we need to do next.
It's just so hard. 😔

 

[cazzerb]

Hi, I just wanted to share my feelings about my mum who has been really poorly now for 2 weeks. She's been in bed apart from an hour or so a week ago when the carers tried her out in her chair. Last week for a couple of days she was scarily more aware than she has been for such a long time but since this weekend she has been sleeping a lot. She's not refusing food or drink as such but the carers need to put the lidded beaker or spoon to her lips and if she opens her mouth they pop it in. She's not choking or anything yet but she is fed as opposed to eating if that makes sense? The GP is coming to see her at some point tomorrow so they will hopefully be able to give me some better understanding of this time. I'm finding it difficult to understand the fixation on the fact that mum swallows food/drink when it's put in her mouth, I don't want mum to suffer in anyway but surely all the other signs point to her dying. In my dark moments it feels like she is being fed so that the care home can't be held responsible for her death, I know that's stupid but your brain thinks oddly at these times.
I know that death and the talking of it is frowned upon but I wish there was more discussion about it so that we know and understand it more, i'm watching her slowly die in front of my very eyes and I don't know what to do.

 

[cazzerb]

I realise it's a few weeks since your post, @HartleyHugs, how's things with your mum now?

 

[jzbross]

Hi, I just wanted to share my feelings about my mum who has been really poorly now for 2 weeks. She's been in bed apart from an hour or so a week ago when the carers tried her out in her chair. Last week for a couple of days she was scarily more aware than she has been for such a long time but since this weekend she has been sleeping a lot. She's not refusing food or drink as such but the carers need to put the lidded beaker or spoon to her lips and if she opens her mouth they pop it in. She's not choking or anything yet but she is fed as opposed to eating if that makes sense? The GP is coming to see her at some point tomorrow so they will hopefully be able to give me some better understanding of this time. I'm finding it difficult to understand the fixation on the fact that mum swallows food/drink when it's put in her mouth, I don't want mum to suffer in anyway but surely all the other signs point to her dying. In my dark moments it feels like she is being fed so that the care home can't be held responsible for her death, I know that's stupid but your brain thinks oddly at these times.
I know that death and the talking of it is frowned upon but I wish there was more discussion about it so that we know and understand it more, i'm watching her slowly die in front of my very eyes and I don't know what to do.

Hi..I am exactly where you are. Care home are great but I'm not sure they fully comprehend end of life. They are pushing food into mum and I feel.the same as you. I have contacted our local hospice and asked for some support from end of life nurse. Had to get a GP referral but they did it straight away when I asked and they've already been in touch. The understood exactly where I was coming from and have been wonderful

 

[HartleyHugs]

Hi, I've been a bit quiet recently as we've been pretty much in the same place the last couple of weeks, mums still been very poorly, not eating or drinking much but still a little each day. Every time I visit I think is this it, will I see her again?
Yesterday I bought a few Christmas cards for close family and cried in the card shop because what kind of card do you get your mum who isn't going to have a lovely Christmas and might not even see 2024!!!!
I've just come back from visiting mum and it feels like we're a little closer, but you never know with my mum! She's not eaten today and only had a very small bit to drink, the nurse said her heartbeat is irregular and her oxygen levels are very low, I did notice mums chest rise and fall in an irregular pattern, but I've learnt not to think too much into these as who knows what tomorrow will bring.
But I won't deny I'm worried now, dying at anytime is awful but the week of Christmas, how will I manage with my son, what happens if she dies on Christmas day? I'm trying to be nice to myself so won't dwell on those thoughts for too long, anyway I need to help him with his maths revision now so that will help distract me
I hope everyone is keeping well, and managing in what ever way they can

 

[canary]

(((((((((((((((hugs))))))))))))))))
So difficult for you

 

[HartleyHugs]

(((((((((((((((hugs))))))))))))))))
So difficult for you

Thank you @canary I know you understand this from things you have written and it's just so very hard isn't it, the uncertainty of it all, and that it seems to go on forever!

 

[canary]

Too true 😞

 

[HartleyHugs]

Hi all, quick mum update......she's still here! I have no idea how? She goes a couple of days without eating and I think that's it they'll start the end of life meds but she then eats a few spoons of porridge! Yesterday she was so agitated! I got a lot of threats of death and f offs! And she was still surprisingly strong! But today we've been told that we can't visit as they have an outbreak of winter vomiting illness among staff and residents, mums not been affected yet. So I guess we'll see what happens over the next few days.
I hope everyone has had as good a Christmas as they can and let's see what 2024 has in store for us.

 

[Missodell18]

Hi all, quick mum update......she's still here! I have no idea how? She goes a couple of days without eating and I think that's it they'll start the end of life meds but she then eats a few spoons of porridge! Yesterday she was so agitated! I got a lot of threats of death and f offs! And she was still surprisingly strong! But today we've been told that we can't visit as they have an outbreak of winter vomiting illness among staff and residents, mums not been affected yet. So I guess we'll see what happens over the next few days.
I hope everyone has had as good a Christmas as they can and let's see what 2024 has in store for us.

Such a roller coaster for you. All ups and downs. I’m glad your mum held on over Christmas as I know you l worried she might pass away on Christmas Day, and though it’s really a day like any other when you come down to it, it’s awful if such a sad memory has to become inextricably linked. My partner’s grandmother died on Christmas Eve a
Couple of years ago which was sad enough.
Hope your mum doesn’t get the vomiting bug and that it passes soon so you can visit again. Take care of yourself

 

[HartleyHugs]

Such a roller coaster for you. All ups and downs. I’m glad your mum held on over Christmas as I know you l worried she might pass away on Christmas Day, and though it’s really a day like any other when you come down to it, it’s awful if such a sad memory has to become inextricably linked. My partner’s grandmother died on Christmas Eve a
Couple of years ago which was sad enough.
Hope your mum doesn’t get the vomiting bug and that it passes soon so you can visit again. Take care of yourself

Hi @Missodell18 I read your recent posts and it sounds as though it's been an up and down time with your mum too! I'm glad you've been able to visit though, in all honesty having a forced rest of visit is probably a good thing, obviously I don't want anyone to be unwell but it means I have a few days of not having to visit and I can rest up, as I'm sure we'll be back on the rollercoaster before long!
It still amazes me she has the strength to go on, I always knew she was tough but boy this is next level! Take care and I'll keep updated on you and your mum via your posts

 

[Missodell18]

Hi @Missodell18 I read your recent posts and it sounds as though it's been an up and down time with your mum too! I'm glad you've been able to visit though, in all honesty having a forced rest of visit is probably a good thing, obviously I don't want anyone to be unwell but it means I have a few days of not having to visit and I can rest up, as I'm sure we'll be back on the rollercoaster before long!
It still amazes me she has the strength to go on, I always knew she was tough but boy this is next level! Take care and I'll keep updated on you and your mum via your posts

Yes it is important to take a break though easy to think you can’t as well. It is draining having to drive to the hospital and back all the time. It takes about an hour and half one way with traffic for me. The hospital car park is scandalous too. You’re supposed to be able to get a reduced rate if someone you’re visiting has been in over a week, but it’s like trying to chase a lot of gold at the end of the rainbow.
Sorry, moaning!

 

[gadfly]

@canary I'm just leaving mum now, today she was less alert and hasn't eaten much today she also looked tired and sleepy, yesterday she was brighter in appearance too. She did tell me to f off and that she would kill me so that's more normal 😭 still a lot of "I don't want to go" which is painful to hear because I just think she's saying she doesn't want to die but who truly knows? Let's see what tomorrow brings, I struggled to stay long today and I feel bad for leaving but I'm so tired and need to get home for my son and husband.

 

[Forth]

Its so hard not knowing when the end will be. My Oh is hallucinating quite a lot now and his eyes rolling back It is very upsetting. He doesnt remember us getting married and thinks there are two of us which is complicated because I have a twin sister. He is now asking to see his Mum and Dad. He is 81 and they both died many years ago. Sometimes he is nearly his old self but then he goes again.. The not knowing what will happen and when is the hardest thing..