Advice for the last days please
- Thread starter Quilty
- Start date
It sure is. William was sent back from hospital to the nursing home in early June, on end of life care. He wasn't eating or drinking and couldn't stand. He did rally for a few weeks though. Couldn't stand independently, but could walk with support of two people for another month or so, and enjoyed sitting in the lounge. He finally passed away at the beginning of August. Your mum won't go until it's time for her to go. But equally, that time could come when you least expect it, even still, especially when she looks a bit better.
Still struggling along
Mum is still holding on to life although sleeping more and more. The doctor does not agree she is at the end of her life, and thinks she is depressed. When she sleeps her hands are starting to curl in at the wrists, she has glazed eyes, double incontinence, not eating, but still drinking. She is in bed for 20 hours a day and when up is in a special mobile recliner. They are swabbing her mouth as she is not swallowing saliva. She is sore from not moving and so thin.
To me, she is not sad or depressed, she is just completely done in. When she is depressed I get abuse. Im not getting any. When she remembers who I am she is pleased to see me.
I feel as if my life is on hold and that the world has stopped turning. Headache, stomach-ache, cant sleep and coming to work each day to divert my mind and stop me going completely nuts. Im just waiting for the phone to ring with terrible news.
To all those out there in the last moments of this terrible disease you are in my prayers, which are constant. Some day this will be over but I will never be the same again.
X
Quilty
Mum is still holding on to life although sleeping more and more. The doctor does not agree she is at the end of her life, and thinks she is depressed. When she sleeps her hands are starting to curl in at the wrists, she has glazed eyes, double incontinence, not eating, but still drinking. She is in bed for 20 hours a day and when up is in a special mobile recliner. They are swabbing her mouth as she is not swallowing saliva. She is sore from not moving and so thin.
To me, she is not sad or depressed, she is just completely done in. When she is depressed I get abuse. Im not getting any. When she remembers who I am she is pleased to see me.
I feel as if my life is on hold and that the world has stopped turning. Headache, stomach-ache, cant sleep and coming to work each day to divert my mind and stop me going completely nuts. Im just waiting for the phone to ring with terrible news.
To all those out there in the last moments of this terrible disease you are in my prayers, which are constant. Some day this will be over but I will never be the same again.
X
Quilty
Oh Quilty, I am so sorry, for your suffering and for your poor Mum. I think you know your Mum better than the doctor and you can see her reality, it is the release she is waiting for but as LadyA says it is impossible to know when exactly.
The softest of hugs to your Mum Quilty and a big one for you, love and peace to you both as these days pass and, as you say, things change forever - we cannot alter that.
Don't feel alone, you are not alone. xxx
The softest of hugs to your Mum Quilty and a big one for you, love and peace to you both as these days pass and, as you say, things change forever - we cannot alter that.
Don't feel alone, you are not alone. xxx
I feel your pain lovely. I just knew in my heart when my dad had given up on his life, from that moment onwards I slept badly waiting for the latest call from the care home, they were daily, and I called in on him nearly every day, exhausted from work but needing to see him. Your mum will fill your thoughts for ages, but when she finally dies you will start to realise how you did the best you could for her, the one thing I haven't felt is any more guilt since my dad died, and that is a blessed relief. Hang on in there, life and death is the weirdest thing and you are at the sharp end now, it's a rite of passage, and how lucky your mum is to have such a loving daughter, hang on to that thought xxx
Aw, Quilty, Many of us have been there. I lived there from about Feb. 20 til my mother died on the 28th. Your mother does sound like she's depressed, but it also sounds like she is ready for end of life. My mother loved yogurt at the end. I used the Silk pudding product rather than yogurt, as she was lactose intolerant. I simply detested the ups and downs. My mother finally couldn't get enough air in. The hospice team didn't push for oxygen; they understood I (like my mother) was not interested in valiant efforts. I wanted my mother to be comfortable.
I have just been through this roller coaster. Feel free to PM me, if you'd like. God speed these events for your mother, and for you.
An update for my TP friends. My mum is still holding onto life. THe CH staff get her up for an hour at lunchtime and dinner time to try to encourage her to eat. The doctor thinks she is depressed! The CH staff and me think she is at end of life. They need to follow the doctors advice so we plod on. The CPN is seeing her tomorrow so im hoping we will get somewhere. I just want to be sure she was pain relief ready if needed. She has arthritis and a bed sore. They have been caring for the sore since it was just a red mark but her skin is so fragile that it has not worked. Mums befriender from social services asked to withdraw her service. She is supposed to spend 3 hrs at a time with mum and was finding this very hard. So she now goes in for 20 minute visits in her own time. She is a lovely lady who made such a difference to mums life. She was there yesterday when i visited and could not believe the change in only 1 week. The look if dispair on her face had me in tears. I can cope with anything but sympathy at the moment. We dont have much time left.
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The expressions on the faces of people who are carers or who know the person with dementia well are very telling.
I remember how shocked my son and I were at the overnight change in Dhiren and when one of his carers came on shift the expression on her face confirmed our worst fears.
I hope pain relief has been arranged for your mum Quilty so it is available immediately if needed.
I understand about the effect of sympathy but there`s no harm in tears at this stage in yours and your mum`s life.
I remember how shocked my son and I were at the overnight change in Dhiren and when one of his carers came on shift the expression on her face confirmed our worst fears.
I hope pain relief has been arranged for your mum Quilty so it is available immediately if needed.
I understand about the effect of sympathy but there`s no harm in tears at this stage in yours and your mum`s life.
After the vusit tomorrow i will ramp up the pressure on the doctor. We have liquid pain relief now but i want some pain patches and a just in case pack. The doctor said we needed to wait 2 weeks whuch is exactly what the care home has done.
As fir crying i think if i start i might not stop. Ive already had a melt down at the care home and at work. I am a very private and contained person so i find that really hard.
As fir crying i think if i start i might not stop. Ive already had a melt down at the care home and at work. I am a very private and contained person so i find that really hard.
This is a difficult time quilty. Please be gentle with yourself and dont expect to be able to do too much
xx
xx
Aw, Quilty, I'm sorry. So hard to see our loved ones in difficulty. The sores are so hard to witness, and yes, the obvious concern of the carers tells on us so completely.
I am sure your co-workers understand how difficult this is for you, as do the people at the home where your mother is living. Everyone probably just wants to give you a big hug. You have been on such a long road, and you have such a compassionate heart - for others here, for your mother, for the caregivers - that it has to be hard all 'round. My own heart goes out to you as you work through the days ahead.
I have looked back and its now almost 4 weeks since my Mum stopped eating. I cant believe she has been strong enough to still be here. Everyday i lose another little piece of her. It feels like i am in hell and just holding my breathe.
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That's good to know. They may not be needed - They weren't needed for William, but the nursing home had them, and I was glad they had. It's reassuring to know that if they are needed, they can be administered immediately.
