Is Mum heading for end if life?

[Raggedrobin]

So the saga continues. The nurse rang me to say that despite all the staff at the nursing home feeling she is end of life and wishing to treat her thus, they called out a GP and the GP has said she isn't end of life, that they should 'encourage' her to eat (at the moment she is offered food but is is acceptable if she refuses it, they don't harass her or keep trying) and more worrying the GP wants her to go back on to medications. These are things that take some time to build up in the system and I am concerned she may get unpleasant side effects going back on to them. The GP who visited is a locum and doesn't know my mother, doesn't know or didn't ask anything about what my mother might have wanted had she been able to say. Which is not to be kept alive in this condition.

The nursing staff have thought of a way around this - they are going to change my mother to a different doctor's surgery, to a doctor who regularly visits the care home and has much more understanding of end of life care and the elderly.

But what a palaver. And of course I am totally befuddled to have been told she is end of life and now she isn't...

 

[Leeds]

So it was all looking dreadful and then I went in today and Mum was sitting up, had good colour, had brightness in her eyes, was chatting and was eating!!!!! Instead of being delighted I found myself crumpling.

All through Christmas she seemed so bad, my partner and i rearranged are lives once again, so that I could stay up here with her and now I find myself up here again for an indefinite amount of time, feeling my life is once again on hold.

I don't wish her dead. Or do I? I just want it to be over, I am so tired of this. Yes, each time she has a period of not eating she gets a little weaker and each day she gets a little older but this is now nearly 5 years of my life I have been in a sort of 'high alert'. I am so fed up. Apologies if this sounds insensitive to anyone whose loved ones have passed and are now grieving.

I totally understand your feelings, both my sister and I feel the same way x

 

[Raggedrobin]

Thanks Leeds. i was just thinking, reading another thread, about what people say. Everyone always says 'gosh how wonderful, your Mum is a 100, isn't that marvellous!' I know everyone means well and it is an achievement to reach 100 but I feel like saying no, it isn't marvellous at all.

 

[Amy in the US]

@Raggedrobin, I am sorry for all the mess with the idiot locum doctor. Well done to the staff for a work around. I hope all that gets sorted.

100 would be a fine age if I were healthy, mobile, and in full possession of my faculties. But I know what you are saying. My mother is 75. As her dementia advances, her quality of life diminishes, and the slope is getting steeper. She had medical issues this past year (a fall, surgery rehab, a bad infection) and doesn't need more of that.

Hoping for some rest for you.

 

[canary]

Im hoping that your mum has been put back on End of Life.
Too many doctors feel that somehow they must preserve life at all costs, when often it is time to say "enough"

Has your mum been prescribed the end of life meds - painkillers and muscle relaxants? My mum was given these drugs through a syringe driver for the last couple of days.

 

[love.dad.but..]

Oh my goodness...so whilst more qualified on paper than the nurses the locum GP is not willing to take the views of nurses in a nursing home who see and recognise and care for end of life so regularly! There comes a time when the time is right to move to end of life and the person may not be able to verbalize that but they have had enough and refusal to eat is a big sign regardless of constant encouragement the GP should
Be able to identify that. Dad was 86 last year when he died...I look at friends parents who are in their upper 90s and in the main healthy and think marvellous if dad could have been healthy and lived til then but as it was with his illness...I am pleased and relieved for him to reach 86 but actually 6 months before tgat would have been better for him. Hopefully the nursing home can sort this out quickly...the dementia progression is a rollercoaster in itself for carers left alone you having to deal with this just when you have resigned and adjusted to your mums end of life stage

 

[SnowWhite]

Firstly, love to Raggedrobin. Xx

Mum hasnt been well for a couple of weeks and shes 93. The care shes getting in her current home is very good. She has a chest and urine infection and the GP has changed her antibiotics now as they werent having any effect. They get her up, washed and dressed and she has a little breakfast but then wants to go back to bed to sleep. That is all she wants to do and she admits it.

I was very worried about her last week as she says she is permanently cold yet her room and ensuite are beautifully warm and cozy. She has masses of bedding, shawls and throws. I noted the bit in the thread about cold hands not being a good sign by the way. her hands are always cold even under heavy bedding. Some days they say she eats her meal but others she declines any. They are trying to get her to drink plenty but thats not easy as then we have the toilet battle.

A few days ago a senior carer asked me how I would feel if the GP felt she needed to go into hospital and I said I think she would prefer not to due to all the noise, alarms, buzzers etc. And I felt the ambulance journey alone would be too much for her. She also asked me about DNR and I said I agreed to this. I have never heard of this AAND so thats news to me.

When Mum was very ill in hospital in September following a fall she said then she had had enough and just wanted to go to sleep and not wake up.

mum just isnt herself and barely chats now and has a permanent far away look in her eyes.

 

[Raggedrobin]

Thanks for your comments, Amy, Canary and Lovedad. I have been through such a range of emotions on this journey but the current one has swiped me sideways, I have, since the new year, felt utterly lethargic and unable to do almost anything. The house is a mess, I am a mess, doing any little thing, like making a phone call, feels like a supreme effort. It is as if I feel like just giving up on everything. I don't mean life, I mean just this constant weird state of not knowing what is happening.
My partner and I have been living 200 miles apart for 4 years now, so I could ne close to Mum and he could carry on working. We finally decided he should move up here as she seemed to be going on forever. Then this Christmas it looked as if the end was near, so we cancelled that plan as we didn't want the start of our new life up here together to be kind of overshadowed by my mother's death. So he went back down to work after Christmas and I stayed up here, waiting for the end. And now it seems we are not at the end. And I feel kind of frustrated and just plain down about all of it.

Snowwhite, so sorry for your situation. I think you are right to keep her out of hospital of you can. Commiserations to you.

Canary, as far as we know my Mum isn't in pain. Why would she need muscle relaxants and painkillers at the end of life? I have read a lot of people have this but I don't know why exactly? Does the body hurt when you are dying?

 

[love.dad.but..]

Thanks for your comments, Amy, Canary and Lovedad. I have been through such a range of emotions on this journey but the current one has swiped me sideways, I have, since the new year, felt utterly lethargic and unable to do almost anything. The house is a mess, I am a mess, doing any little thing, like making a phone call, feels like a supreme effort. It is as if I feel like just giving up on everything. I don't mean life, I mean just this constant weird state of not knowing what is happening.
My partner and I have been living 200 miles apart for 4 years now, so I could ne close to Mum and he could carry on working. We finally decided he should move up here as she seemed to be going on forever. Then this Christmas it looked as if the end was near, so we cancelled that plan as we didn't want the start of our new life up here together to be kind of overshadowed by my mother's death. So he went back down to work after Christmas and I stayed up here, waiting for the end. And now it seems we are not at the end. And I feel kind of frustrated and just plain down about all of it.

Snowwhite, so sorry for your situation. I think you are right to keep her out of hospital of you can. Commiserations to you.

Canary, as far as we know my Mum isn't in pain. Why would she need muscle relaxants and painkillers at the end of life? I have read a lot of people have this but I don't know why exactly? Does the body hurt when you are dying?

Yes it can do is my understanding as everything starts to shut down and body changes take place. Dad was given injections every few hours of muscle relaxant, pain relief and something to help stop build up of mucus and this continued through unconsciousness to end of life. Whilst he was conscious although he couldn't verbalize pain his face grimaced and when unconscious his face didn't show that emotion but all the medication was continued to keep him comfortable. I am so sorry that you now have it seems a this seemingly unclear situation to deal with.

 

[Raggedrobin]

Thanks Lovedad. Mum looked so bright today, unbelievable. She doesn't appear to be in any pain at the moment but thanks for explaining that. It is horrid to know that something lies ahead that is inevitable, because of her age and condition but you don't know how or when.