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

[HartleyHugs]

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.

 

[Sarasa]

Thinking of you @HartleyHugs. Over the couple of years mum was in her care home I had my doubts about them from time to time, but they were very good at preparing me gently for the fact she was end of life. I appreciated that they didn't pretend she might get better and signalled that I ought to be thinking about things such as undertakers.
This is a very odd time. All I think you can do is tell her you love her and maybe play her favourite music or read her favourite poetry.

 

[HartleyHugs]

Thinking of you @HartleyHugs. Over the couple of years mum was in her care home I had my doubts about them from time to time, but they were very good at preparing me gently for the fact she was end of life. I appreciated that they didn't pretend she might get better and signalled that I ought to be thinking about things such as undertakers.
This is a very odd time. All I think you can do is tell her you love her and maybe play her favourite music or read her favourite poetry.

Thank you, I emailed our local funeral directors last night just to get some info which felt very strange. I thought about reading to her last night but wasn't sure if she would hear me. I've got a playlist of songs I'll try that tonight. I have her a kiss and told her I loved her when I left

 

[Cappy67]

My mum lasted for 3 weeks after completely stoping eating and drinking.
If she can eat they will try to feed your mum but in the end my mum just stopped and refused and when the time came it was very peaceful.
I was lucky that I lived close by and could visit every day.
it’s awful but know that soon you will both be at peace. For me it was sad but a huge relief.
Much love to you in the coming days X

 

[special 1]

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, sorry to hear what you are going through. My mum was in hospice and I was with with her till the end due to lung cancer. I know it is not the same as dementia as my husband has it. You just have to be strong and be there for her at this time, Hug💝s & love.

 

[HartleyHugs]

My mum lasted for 3 weeks after completely stoping eating and drinking.
If she can eat they will try to feed your mum but in the end my mum just stopped and refused and when the time came it was very peaceful.
I was lucky that I lived close by and could visit every day.
it’s awful but know that soon you will both be at peace. For me it was sad but a huge relief.
Much love to you in the coming days X

@Cappy67 thank you, it's really quite scary how long the body can hold on for. I don't want my mum to not be here but in all honesty she's not been here for the last 2 years. I was going through my photos looking for some of mum but she was so rubbish at having her photo taken but I've found a few. I was showing my son as he's in most of them which was lovely

 

[Grannie G]

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`m sure this would stop if your mum seemed unable to swallow and choked. It`s almost impossible to know when food or drink should be withdrawn and I think the rule of thumb is when it is refused or causes distress.

We try to rationalise at this time but really there is nothing to rationalise about. It`s day by day, hour by hour, minute by minute.

I hope your mum is pain free and comfortable. It`s all you can ask for @HartleyHugs You are the one who is suffering and painful though it is, it`s the last you are doing for your mum.

 

[HartleyHugs]

Hi, sorry to hear what you are going through. My mum was in hospice and I was with with her till the end due to lung cancer. I know it is not the same as dementia as my husband has it. You just have to be strong and be there for her at this time, Hug💝s & love.

Thank you @special 1 it's hard being strong but I'm trying, love and hugs to you too

 

[GeeDee]

So sorry to hear this @HartleyHugs . it is very difficult for the care/nursing home to say if someone is near the end sometimes I think. My mum has been in the condition you describe for over 6 months now (except the carers don't try to get her out of bed into a chair as she is too fragile). We were called into the home about 3 weeks ago as they thought she may not have long left as she wasn't eating or drinking much at all, but she seems to have steadied again and is still with us.

 

[HartleyHugs]

So sorry to hear this @HartleyHugs . it is very difficult for the care/nursing home to say if someone is near the end sometimes I think. My mum has been in the condition you describe for over 6 months now (except the carers don't try to get her out of bed into a chair as she is too fragile). We were called into the home about 3 weeks ago as they thought she may not have long left as she wasn't eating or drinking much at all, but she seems to have steadied again and is still with us.

It's just so very hard isn't it to know what to do, or how to feel, it sometimes feels like it's a never ending rollercoaster of ups and downs.

 

[smernst42]

@HartleyHugs Stay strong! My mom was in assisted living home from February 2023, and recently passed in early September. I was there very often as I lived close. Fortunately the care givers were wonderful and felt like family to me. I found great comfort in knowing she was getting the best care. Watching a loved one slowly slip away is very hard. I was well prepared for her passing. I fed her when I could and knew that when she started to refuse food and drink, the time was eminent. All you can do is comfort her best you can, and very importantly remember to take care of yourself. Her passing was peaceful, as I hope it will be for your mom.

 

[HartleyHugs]

@HartleyHugs Stay strong! My mom was in assisted living home from February 2023, and recently passed in early September. I was there very often as I lived close. Fortunately the care givers were wonderful and felt like family to me. I found great comfort in knowing she was getting the best care. Watching a loved one slowly slip away is very hard. I was well prepared for her passing. I fed her when I could and knew that when she started to refuse food and drink, the time was eminent. All you can do is comfort her best you can, and very importantly remember to take care of yourself. Her passing was peaceful, as I hope it will be for your mom.

Thank you for your reply, I'm very lucky that I live close as does my sister. The GP saw mum today and has stopped her daily meds (memantine, sertraline, simvestatin and aspirin) and he's upped her pain patch. She was awake today and did tell me to f off, she has been swearing so much in the care home and we always see it as a sign that she's a little more with us so must be the only people who like being sworn at 🤣
The staff at the care home are really lovely and they really take care of mum and me too. I guess the next few days/weeks (who knows) will be tough but I will do my best to stay as strong as possible and hold my mum's hand and tell her I love her

 

[TessB]

It's just so very hard isn't it to know what to do, or how to feel, it sometimes feels like it's a never ending rollercoaster of ups and downs.

This is how I feel too. And I get so tired (mum often calls out at night so I often have disturbed nights) and feel unable to motivate myself to talk with mum or do anything with her, then I feel guilty. I am scared of how and when the end will come. I used to feel that, if I was doing everything 'right' then I'd get my mum back. I've had to accept that all I can do is make sure she is looked after and as happy as possible, though there are times when it doesn't seem possible to make her happy. Mum is still at home and I wonder how I will know the right time for her to move into a care home. Hoping the carers will guide me. Tbh hoping that mum goes quickly and suddenly (think she has something else going on medically but GP said investigations would be too invasive) but then I feel guilty for thinking that. I don't want to lose my mum but really I have already lost her to dementia. 😭

 

[HartleyHugs]

This is how I feel too. And I get so tired (mum often calls out at night so I often have disturbed nights) and feel unable to motivate myself to talk with mum or do anything with her, then I feel guilty. I am scared of how and when the end will come. I used to feel that, if I was doing everything 'right' then I'd get my mum back. I've had to accept that all I can do is make sure she is looked after and as happy as possible, though there are times when it doesn't seem possible to make her happy. Mum is still at home and I wonder how I will know the right time for her to move into a care home. Hoping the carers will guide me. Tbh hoping that mum goes quickly and suddenly (think she has something else going on medically but GP said investigations would be too invasive) but then I feel guilty for thinking that. I don't want to lose my mum but really I have already lost her to dementia. 😭

Hi @TessB you are not alone in wishing for a quick and peaceful end, I often think that and don't think there will be much longer. Mum was living independently but then fell December 2021 and broke her hip and it's been downhill ever since. We did try her back home after her discharge but it was too hard and she fell after 6 days and was admitted back to hospital then she was discharged into the care home she is in now so we didn't have to work out when to move her it just kind of happened. Take the lead from the carers but also from how you are coping and feeling. Have you looked at any local care homes as it's amazing how different they can all be. Sending you hugs and hoping you can find support in these posts as I have.

 

[HartleyHugs]

Hello, mums rollercoaster has taken another unexpected twist. Todays visit mum was so aware, it was so strange. A lot of the time she kept saying the same phrase "I don't want to go" over and over but she also answered questions not in full sentences or anything but her responses were almost as if she was my mum again. She ate a bowl of soup when the carer fed her it's the most I've seen her eat in ages! But the GP stopped all her medication and on Saturday the unit nurse said that mum was really really unwell and the next few days might be the time and today it was as if I gave her a good meal and filled her up she would be back to her normal self! I know this is never going to happen but this is such such a cruel twist. I experienced it with her a couple of weeks ago just after end of life was discussed (3rd time) but today was even more strange. Even today's unit nurse said she had never seen anything like this before. I'm not sure how much more of this up and down I can take it's so physically and mentally draining. Has anyone ever experienced rallying like this over several occasions? I just don't understand it?

 

[Sarasa]

Thinking of you @HartleyHugs. I think there are others on here who have experienced similar things. I think @canary is one.

 

[canary]

Yes, I was told three times that mum was at end of life only for her to rally again. Eventually, of course, she did not, but I was constantly waiting for it to happen.

It also happened with my MIL, but only once. It was however, striking similar to your latest experience. My MIL was in hospital after a fall and stopped eating and drinking for about a week. We were all told that she was in her final few days and there was a huge scramble to get the family back (her eldest son was abroad on holiday) to say goodbye to her. By this stage she was semi-comatose and we all thought she was hanging on to see him and once he arrived back we expected her to pass away. Not a bit of it! She suddenly seemed to wake up and said she was hungry. The following day the physio got her standing unaided (probably a lot of host mode, but still) and then in the evening she was scoffing sausages - I am not joking!! She needed them cut up for her, but was able to chew and swallow them. Everyone - family, nurses and doctors - were gobsmacked. After this she was moved to a nursing home, gradually declined and passed away a couple of months later.

Dementia is unfathomable

 

[HartleyHugs]

Yes, I was told three times that mum was at end of life only for her to rally again. Eventually, of course, she did not, but I was constantly waiting for it to happen.

It also happened with my MIL, but only once. It was however, striking similar to your latest experience. My MIL was in hospital after a fall and stopped eating and drinking for about a week. We were all told that she was in her final few days and there was a huge scramble to get the family back (her eldest son was abroad on holiday) to say goodbye to her. By this stage she was semi-comatose and we all thought she was hanging on to see him and once he arrived back we expected her to pass away. Not a bit of it! She suddenly seemed to wake up and said she was hungry. The following day the physio got her standing unaided (probably a lot of host mode, but still) and then in the evening she was scoffing sausages - I am not joking!! She needed them cut up for her, but was able to chew and swallow them. Everyone - family, nurses and doctors - were gobsmacked. After this she was moved to a nursing home, gradually declined and passed away a couple of months later.

Dementia is unfathomable

Hi @canary I thought I had read something similar about a loved one and didn't realise it was from you. I am finding this the hardest and cruelest part as it feels like I get mum back only for her to be taken away again! I never know what to expect, I'm on my way to see her now and don't know whether to psych myself up to try and work out what to say or will I sit there and look at her sleeping? We had a similar experience about 2 weeks ago that I posted about and found the term terminal lucidity, which naively I thought would also be a one time experience like an end of life conversation but we're on the third eol conversation already.
I guess I will see how mum is now and enjoy it if she is aware and awake and have some peace if she is at peace. It just seems as though Alzheimer's keeps throwing new things our way and I had no idea that these things could happen. The fact that even the nurse is amazed really threw me. Thank you for letting me know that it's not totally unheard of and that this could go on for some more time, oddly it's reassuring.

 

[canary]

((((((((((((((((((((((((((((hugs))))))))))))))))))) @HartleyHugs
Its such a difficult time, especially when you dont know what to expect.

I had wondered whether you were looking at terminal lucidity, but the trouble with this is that its only really in retrospect that you can see it - a bit like their last words!

 

[HartleyHugs]

@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.