Is Mum heading for end if life?

[Raggedrobin]

Hello, my Mum is 99 and the last few months have been a rollercoaster, where sometimes she seems bright as anything and talks (rubbish) and eats. Then she has phases where she just sleeps.

Her current state is mainly just sleeping, and has been going on for a couple of weeks. She has been starting to choke on food and is now on thickened drinks only.

Today when I went in I just felt really upset, she wasn't just asleep, she seemed kind of unconscious. Reading her care notes, she is having some nutrition but not much but she is also pretty much still so can survive in very few calories.

The staff know that I want to know when she is getting to end of life and a few weeks ago they said she wasn't yet. But seeing her today, I feel she is. i will talk to the nurse about her next week, as a doctor will be seeing her re her medication. But I guess I am kind of wanting to know, does she sound end of life to anyone? I felt such grief today to see how she was, like a shell of herself.

 

[chris53]

Oh RR, so sorry that I cannot answer your question, but just wanted to respond,you have done everything you can for your mum and can only wish you have the answers you seek from the medical profession soon, please be kind to yourself as it seems your mum is pain free and resting her tired brain and body which is all we can hope for people we love.
Sending you a big hug x

 

[lemonjuice]

Hello, my Mum is 99 and the last few months have been a rollercoaster, where sometimes she seems bright as anything and talks (rubbish) and eats. Then she has phases where she just sleeps.

Her current state is mainly just sleeping, and has been going on for a couple of weeks. She has been starting to choke on food and is now on thickened drinks only.

Today when I went in I just felt really upset, she wasn't just asleep, she seemed kind of unconscious. Reading her care notes, she is having some nutrition but not much but she is also pretty much still so can survive in very few calories.

The staff know that I want to know when she is getting to end of life and a few weeks ago they said she wasn't yet. But seeing her today, I feel she is. i will talk to the nurse about her next week, as a doctor will be seeing her re her medication. But I guess I am kind of wanting to know, does she sound end of life to anyone? I felt such grief today to see how she was, like a shell of herself.

Unfortunately even the medics may not be able to tell you until she reaches the 'active stage of dying'. According to all those measures which indicate that the PWD is reaching the end-stage, sleeping a lot, sometimes not getting a lot of nutrition, several emergencies etc my Mum has been at 'that roller-caoster stage' for coming up 3 years now. Up until a fortnight ago she had been eating little and hadn't opened her eyes , well just one perhaps briefly for less than a minute since last November. However as usual, now with the longer days she is 'awake' for a short while each day now.
I've been told any emergency 'could be the start of the end' but it never is and even the Home don't rush to phone me to come over anymore. It has all become my mother's 'new normal!'

When they reach the 'active' end stage is possibly when you know it could be soon. Even that may be weeks, not days or hours.
Loss of consciousness, laboured breathing, 'mottling' as blood drains from the extremities and really cold hands are often signs of the 'final end'.

 

[Raggedrobin]

Thanks Chris.

Lemonjuice, that sounds like a terribly long time for her to be in that state. What age is she?

I keep feeling because Mum is nearly 100 that she won't last long now but I know there have been posters on here who have had their loved ones go on past 100. I really feel like I don't know if I should be contacting the queen for the telegram thing or contacting the funeral company.

I suppose I know my question is impossible to answer. Part of me, like for so many of us, just wants it all to be over. It is only three and a half years I have been with Mum, going through this incredible journey with her, but it feels like a lifetime sometimes. I am sending my best to everyone else who feels like they are kind of sitting with someone in the departure lounge but no idea when their flight will take off...

 

[lemonjuice]

Thanks Chris.

Lemonjuice, that sounds like a terribly long time for her to be in that state. What age is she?

I keep feeling because Mum is nearly 100 that she won't last long now but I know there have been posters on here who have had their loved ones go on past 100. I really feel like I don't know if I should be contacting the queen for the telegram thing or contacting the funeral company.

I suppose I know my question is impossible to answer. Part of me, like for so many of us, just wants it all to be over. It is only three and a half years I have been with Mum, going through this incredible journey with her, but it feels like a lifetime sometimes. I am sending my best to everyone else who feels like they are kind of sitting with someone in the departure lounge but no idea when their flight will take off...

Yes, compared to your mother mine is quite young at 89. I was surprised she made it to her 81st birthday and yet here she still is.
But then she's had the dementia for much longer too more like 12/13 years, as it's difficult looking back to tell when exactly the early symptoms started to manifest themselves.
Also since her mid 40s when she had her heart attack, she thought she was 'dying' so often. It is her vascular system and oxygen deprivation which has effected her mind to such an extent, yet physically she is quite strong. Which is why the Dr. believes she survives all her regular emergencies when 'death would not be unexpected'.

 

[Raggedrobin]

Gosh that sounds like she has been on a very long, slow burn. How hard for both of you.

 

[Raggedrobin]

Well looks like I was wrong, Mum has kind of come round again. She is definitely a stage further on compared to how she was but like you say, lemonjuice, looks like she could trundle on like this for some time yet.
So basically I got myself all geared up to thinking end of life and now I am having to sort of readjust to it not being. And so it goes on.
Looks like maybe I will be ordering her 100th birthday card from the queen after all. That's not until August but it is amazing how months fly by in this strange waiting end game, and become years.
I just hate all the not knowing, so much wanting her to have a peaceful death and yet not knowing how it will be for her.
One thing I would say (well actually I've already said several things) is that I hope in some way I have learnt something from this odd experience of somehow witnessing someone on the fringe of life. I don't know what I think I have learnt, but surely something?

 

[Merrymaid]

Well looks like I was wrong, Mum has kind of come round again. She is definitely a stage further on compared to how she was but like you say, lemonjuice, looks like she could trundle on like this for some time yet.
So basically I got myself all geared up to thinking end of life and now I am having to sort of readjust to it not being. And so it goes on.
Looks like maybe I will be ordering her 100th birthday card from the queen after all. That's not until August but it is amazing how months fly by in this strange waiting end game, and become years.
I just hate all the not knowing, so much wanting her to have a peaceful death and yet not knowing how it will be for her.
One thing I would say (well actually I've already said several things) is that I hope in some way I have learnt something from this odd experience of somehow witnessing someone on the fringe of life. I don't know what I think I have learnt, but surely something?

Hi RaggedRobin, I too am currently enduring the roller coaster effect and it is extremely exhausting emotionally and physically, I can empathise with you a little on this. Mum, bless her, was so poorly a couple of weeks ago I called in the Priest and had staff coming to say goodbye to her before they went off on holiday. Since then she has had a bit of an upswing & has started eating a bit more and become a tiny bit more mentally alert on some of my visits. Having said that her strongest conversation piece is always a sentence about her evacuation as a child in the war! She remains bed ridden, and recognising me changes day to to day; sometimes I am me, sometimes I am her mother :O. Although I have put in place all the arrangements for the eventual outcome, the one thing I have learned to come to terms with is, living for each visit only. When I have her 'present' it is a sunshine day, when I can only hold her hand that too is a blessing too, to be savoured.

 

[Raggedrobin]

Thanks Merrymaid and Alexa.

 

[Caroleca]

Thinking of you! Thought mom would go on forever...but she ended up with a sepsis...and passed after 5 days...she was 85...we just don't know and that makes this so difficult. Xoxox

 

[Raggedrobin]

Thanks Carole.
Just saying it out loud, 'how long will this go on for?' And knowing there are people on here who understand that feeling really helps.

 

[realist1234]

Im in a similar situation. My mum, 88, is not eating anymore and only has a little sip of juice once or twice a day when coaxed. In bed and sleeping most of the time. Went downhill quite quickly, though her appetite has been up and down for a few years. So far she seems peaceful and hopefully that will continue.

 

[Raggedrobin]

Hi realist, yes, my Mum is a lot more peaceful now and that is a blessing.

 

[realist1234]

Hi realist, yes, my Mum is a lot more peaceful now and that is a blessing.

That is good to know, Raggedrobin.

Peter

 

[SylviaB62]

Hello, my Mum is 99 and the last few months have been a rollercoaster, where sometimes she seems bright as anything and talks (rubbish) and eats. Then she has phases where she just sleeps.

Her current state is mainly just sleeping, and has been going on for a couple of weeks. She has been starting to choke on food and is now on thickened drinks only.

Today when I went in I just felt really upset, she wasn't just asleep, she seemed kind of unconscious. Reading her care notes, she is having some nutrition but not much but she is also pretty much still so can survive in very few calories.

The staff know that I want to know when she is getting to end of life and a few weeks ago they said she wasn't yet. But seeing her today, I feel she is. i will talk to the nurse about her next week, as a doctor will be seeing her re her medication. But I guess I am kind of wanting to know, does she sound end of life to anyone? I felt such grief today to see how she was, like a shell of herself.

I am going through this right now it's so hard.

 

[SylviaB62]

Waiting to see if this is the end tears in my eyes

 

[Cat27]

I wish you strength @SylviaB62

 

[jelba]

Mum very similar eating virtually nothing drinking a bit now and then very hard at this time over Christmas to do nothing but watch her sleeping

 

[Scouts girl]

My thoughts are with you having been through this very sad time recently with my lovely mum. She is now at peace and free from this awful illness. Do spend as much time as possible with your mums. I spent every day with my mum just holding her hand, stroking her head and telling her how much we loved her as they say hearing is the last sense to go. I am so sorry that I was not with her when she passed away just popping home, which was 10 minutes away, for a rest as I was just so exhausted and do feel guilty that if I had stayed with her another couple of hours I would have been with her. I just hope she was peaceful when she passed away, but the carers at her care home assured me she was was I have to cope with the thoughts that this was true. I hope you can find strength at this time and send my love and hugs to you. Xxx

 

[Raggedrobin]

I just noticed this thread again. My thoughts to those who have added theirs. I can't believe I started it last March and was thinking Mum was in the departure lounge. my Mum has rallied and gone down and rallied an gone down a number of times since then. We do seem to be on the final stretch now but goodness knows how long this will go on for. She is eating about a half a carton of yogurt on good days and barely drinking. She is shockingly skeletal, so much so that they are having to reposition her every couple of hours to prevent bedsores. Her skin is like paper.

One, particularly kind and conscientious carer told me with great excitment that Mum had sat up, eaten a whole carton of yogurt, and said a few sentences yesterday. To me, it feels like she is just prolonging the agony. Mum will be able to keep going on a teeny amount of calories as she is completely inactive now. But she is barely conscious most of the time, the veil is over her eyes and on she goes. I dread it but want it to be over.