• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Mum is reaching the end if her journey

Lavender45

Registered User
Jun 7, 2015
1,609
Liverpool
Hi. It's been a very long time since I posted on talking point, so it feels cheeky doing so now.

Mum hasn't been eating or drinking properly for around 10 days. She is in a care home and has had 2 rounds of antibiotics in case she has an infection, but they have not improved things. Today the home have informed me that she has been prescribed end of life drugs.

I don't think I'm daft. I knew we were heading in this direction, yet I feel totally blindsided. I feel numb, but the tears keep welling up at the drop of a hat. I thought I was so prepared for this. Boy have I been fooling myself! I want her to stay so much, but I also don't want her to stay and be subjected to any further time living with this awful disease. If only there had been a cure. I know none of us can go on forever. I just wish somehow we could.
 
Last edited:

Jale

Registered User
Jul 9, 2018
444
Will be keeping you in my thoughts, I hope that when the time does come your Mum's passing is peaceful. Take care x
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,856
69
Dundee
Hi @Lavender45

It's been a very long time since I posted on talking point, so it feels cheeky doing so now.
It’s not at all cheeky. DTP is here for you whenever you need it. It must be even harder facing this in the current lockdown situation. Wishing you strength for the days and weeks to come.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,387
Nottinghamshire
I hope it brings you some comfort posting here @Lavender45 . Your post resonates so much with me - it’s how I felt as my dad neared end of life. As Izzy says it must be so much harder with the current restrictions. I will be thinking of you.
 

Lavender45

Registered User
Jun 7, 2015
1,609
Liverpool
Thank you everyone. Your words mean a lot. I'm trying to see that this is right for mum. She needs to escape dementia and this is the only escape route she has.

Mum has been ticking along for ages. No major declines. Still as feisty as ever. Up until 10 days ago she was just the same as ever eating and drinking pretty much independently and chucking away what she didn't fancy eating sometimes directly at the carers.

Things have changed so suddenly. She has in the past gone off her food, but never for this long. As they've prescribed end of life drugs I guess it seems unlikely she will restart her eating. I'd like to think this is a decision on mum's part. I hope she's said I've had enough of this illness. I'm getting out of here. I hope it's not just happening to her. I hope she's not frightened. The home said last night we can visit for 15 minutes a day whilst she's still with us. 15 minutes, that's not much time, but it's better than nothing.
 

jugglingmum

Registered User
Jan 5, 2014
5,748
Chester
Sorry to hear of your mum's sudden decline. Sorry to hear she's remained so feisty all this time, although chucking her food at carers made me smile based on her previous behaviour.

I hope your 15 minute visits go well. Thinking of you.
 

Lavender45

Registered User
Jun 7, 2015
1,609
Liverpool
Sorry to hear of your mum's sudden decline. Sorry to hear she's remained so feisty all this time, although chucking her food at carers made me smile based on her previous behaviour.

I hope your 15 minute visits go well. Thinking of you.
Hi jugglingmum.
I've just spoken to her care home and have been told I am not allowed in as death is not imminent, despite that going against what I was told last night.

I wish I could broadcast the name of her care home far and wide. It is appalling. Had mum's behaviour been different I would have moved her to another home, but it wasn't to be. She needs 3 for personal care as she's so aggressive. There aren't many homes prepared to take on that level of daily need. She still makes me smile too. All carers are fair game to mum. Even now she's being aggressive with them and whilst not eating the food she is allowing them to put it in her mouth so she can spit it at them.

I'm now waiting for them to call me back with a definitive answer. Can I go in or can't I.
 

canary

Registered User
Feb 25, 2014
12,259
South coast
Im sorry to hear about your mum. However much we think we are prepared, we never are.
Im glad you can visit for a while at least, through this period. Make sure that you say the important things to her - I love you, thank you, Im sorry and tell that it is OK to go . If youve got some of her favourite music you could ask the carers if they would play them while you are not there.
 

Louise7

Registered User
Mar 25, 2016
2,047
I think quite a few care homes are only allowing visits if someone is very close to death, it's what's happening at mum's home. Has your mum's home had any covid-19 cases @Lavender45 ? All care home residents are now going to be tested for the virus and having contacted the manager of mum's home last week it was indicated that the situation with regards family visits will be reviewed once they know the results of the testing. I guess It makes sense that the situation is regularly risk assessed in relation to the potential risk of staff/residents catching the virus from visitors, or visitors catching it from residents/staff, and better risk assessment can take place if they know the extent of virus infection within the home. Not much consolation I know, but apparently the government is going to produce new guidance with regards to managing covid-19 risks in care homes within the next few days so maybe the position with regards visitors may change? I can't see that it's going to be sustainable to continue with 'blanket' visitor bans long term due to the negative impact on the mental health & wellbeing of residents.
 

jugglingmum

Registered User
Jan 5, 2014
5,748
Chester
she is allowing them to put it in her mouth so she can spit it at them.
That sounds like she hasn't changed much over the years then.

I think the National Guidelines are only end of life visits - so maybe you were told the wrong info last night.

It's hard, my next door neighbour has terminal bladder cancer and is in Clatterbridge - she was in a side room so her husband could visit but now moved to a 4 bed ward so her husband can't visit until her last few hours - they have been married 50 years this year (early 70s) - it all seems so unfair (he told us that visits had been cancelled on Friday - I cried when I got in the house).
 

Lavender45

Registered User
Jun 7, 2015
1,609
Liverpool
I think you are right Jugglingmum, the information last night was inaccurate. When you are talking about end of life I think that's really bad. I know things can change, but the senior I spoke to yesterday said she had checked her information. Oh and no JM mum hasn't changed in the slightest. She's a force to be reckoned with even now.

The home called back a short time ago. This morning mum was asked would she like a drink by a different senior to the one on yesterday. She agreed and took 400ml of ensure. Today's senior warned not to take that as an improvement. We just have to wait and see what mum decides next.
 

Lavender45

Registered User
Jun 7, 2015
1,609
Liverpool
Mum is definitely heading towards the end of all this. We were finally allowed in yesterday. So far she hasn't needed drugs. She's pretty peaceful, mumbling a bit for her mum which is heartbreaking. Her breathing is shallow, but steady. She's not responding to us, but she is answering the staff when they ask is she in pain she says no.

This should be all about mum, but I'm selfish enough to be thinking about me. I don't want her to be waiting and waiting to go. If there were the smallest chance she could turn this around and start eating and drinking again I'd want it. I'd want her to stay a while longer, but that is not to be. She has to leave and because that is so I want her to leave swiftly. Watching and waiting is sheer torture. There is nothing right about dementia. Having watched mum from the general forgetfulness at the start and the covering it up, because with hindsight she did, to today it's an utterly vile disease which I hate with such a passion!
 

Subo72

Registered User
May 11, 2017
15
Every sympathy @Lavender45. I am in a similar position (in fact my own thread title is similar to yours too!), and I am fervently hoping for a swift end to all of this for mum's sake. My mum is still in hospital at the moment, if she takes fluids by mouth a bit more consistently she may be discharged back to the home next week - but she was seriously ill with sepsis, frankly they are amazed she survived it. Since waking up and responding to treatment for the infection, however, she also hasn't eaten or drunk much for 9 days, and is totally immobile with no sitting balance.

I'm so sorry it is proving difficult to see your mum, it makes you feel so helpless doesn't it. Keep soldiering on, and as somebody recently said to me - I sincerely hope that the outcome is just as your mum would want for herself.
 

canary

Registered User
Feb 25, 2014
12,259
South coast
Im sorry @Lavender45 - this twilight world of waiting is a most difficult time.
people with dementia seem to cling to life tenaciously. My mum went for 17 days with no food or fluid. I honestly dont know how she went on for so long. It was only in the last 3 days that she needed painkillers.

There will be physical changes that happen that show that the very end is coming - the most obvious one is that the breathing changes and there are lots of gaps between breaths. Also the limbs grow cold and they often reach a semi-comatose state. Once you start to see that you will know that it wont be long - usually mere hours (although mum, typically, went on for 48 hours)

It is not wrong to think of yourself too. There were several times I thought - dear god, how much longer? Dont forget to eat and sleep.

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

Duggies-girl

Registered User
Sep 6, 2017
1,855
You are not being selfish @Lavender45 I felt the same about dad, he had to go, he could not carry on with his body as emaciated and weak as it was. He had not eaten for 17 or 18 days, he had drunk very little. I knew it was imminent when he lost his swallow the day before he died. I had cared for him at home and he was in a hospital bed for around 10 days or so.

He went peacefully with me holding his hand and talking to him. I believe he was aware because he looked at me just before he died although I am not sure that he could see me. It was a huge relief and also a huge shock at the same time even though I knew he was going and was as prepared as I could be.

Just be prepared for a huge range of emotions. I was glad that it had ended and sad that he was gone and still am. I miss dad terribly but I don't miss the dementia and the terrible things that it does to us all. I hope that your mum goes peacefully and you must then start to take care of yourself and be kind to yourself as well.

It is an incredibly hard thing to watch but you will cope somehow.
 

Lavender45

Registered User
Jun 7, 2015
1,609
Liverpool
Twilight world about sums it up Canary. Thank you everyone for your kind words of support.

We just keep going. The senior who gave her ensures the other day is on back on duty today. She said mum had a peaceful night and looks just like she always does when she's asleep. She said she will try mum with some ensure later. I asked if she didn't think it too late to try to get her to take anything, she just said she would try.

The senior I am writing about has been on mum's unit since mum moved in. She knows her well and I'd normally feel reassured that she was on duty. At the moment she's making me anxious. She doesn't seem to be facing the realities of where we are at. Mum isn't really asleep, she's at best semi conscious. She's not taken anything since those last ensures on Wednesday. They tried thickened juice on Thursday and mum just held it in her mouth. She either had no idea how to swallow or knew she has no need of fluids now.

Mum's mouth is permanently wide open at the moment. It worries me that she will put ensure in and choke her simply because she can get it in there. I'm being silly. She's a very experienced carer and not stupid, but everything about this is worrying me and I'm overthinking every little thing.
 

canary

Registered User
Feb 25, 2014
12,259
South coast
I think it is important to offer food and drink, just in case your mum does "bounce back" - it can and does happen with dementia. Thought, TBH, from what you have said, I feel this is unlikely. I suspect that the carer is just trying to be upbeat.

So hard for you
xxx