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Dementia & Alzheimer's
No longer able to swallow
Jenasaurus · 19/05/2018 10:34
My mum has alzeimers as well as ovarian cancer with secondary's in the lymph nodes in her neck. I know that both terminal illnesses cause problems with swallowing and I have now been advised that my mum cant eat or drink. She is thirsty so takes in water to her mouth but then spits it out. She has been without food or water for over 7 days now and on a morphine patch, she is still getting up to use the toilet (with help) and appears pain free (which is a blessing) but its clear she needs to pass and its so hard on her just lying there waiting to go. I haven't hear of anyone lasting so long without any intake, is it possible she is getting small amounts of water when she rinses her mouth (her throat is partially blocked by the tumour but its also part of alzeimers so hard to understand the cause completely) I just want my lovely mum to be at peace.
Icepinkeskimo · 19/05/2018 11:05
Jen, if I could give you a hug right now I would, this post has made me quite emotional as it has been wrote from your heart. I think your Mum must be getting some water intake when rinsing her mouth, as this is a long time to go without fluids.
Of course you want your Mum to be as comfortable and peaceful as possible. I have a few little suggestions that may help, and the first would be to give your Mum a little flannel was with warm water with some beautiful smelling soap or essential oil. You could also give her a lovely hand massage, she might love that. Some beautiful hand cream, it's very relaxing. If it's allowed some of her favourite music, as it soothes the soul for all of us. Jen does she like flowers? If so freesias or a few highly scented roses, beautiful to look at and wonderful to smell.
Thinking of you and your Mum today X
Jenasaurus · 19/05/2018 14:02
Thank you for your kind words,I'm sitting with mum now, she is sleeping but the aromatherapy oils are a good suggestion i will try that, I have the royal wedding on in the background so she can hear the music and am striking her back as she sleeps x
Thistledew · 19/05/2018 14:05
Can she suck on a wet flannel? It might make her mouth feel more comfortable.
Big hug to you both. xxx
SilverHairedCat · 19/05/2018 14:08
Are you in a hospice? Does your mum have palliative care?
Izzywigs · 20/05/2018 17:57
My mum had a stroke and could not eat or drink. She was 94 with severe Alzheimer’s. They asked me if she should be tube fed and I refused. After a week she stopped sitting up and was just given fluid and antibiotic drip. The hospital could not tell me how long she would survive. They said she was in no pain and her body was just shutting down. Nursing staff moistened her mouth and kept her clean but she was unresponsive. She could look around and respond to touch but seemed to have no other functions.
She was a very small lady but survived almost 6 weeks in hospital without food or nourishment. I did not want to withdraw fluids as I wanted her to be comfortable. She had a wonderful doctor, who really explained the dying process to me and said they she would help me to decide the right time to withdraw the fluids. Eventually the decision was made and she died 36 hours later.
It was hard going to the hospital and sitting with her day after day. I had a lot of confidence in the ward staff and they did tell me that my mums long survival was not unusual. I would say, read up as much as you can and don’t be afraid to ask staff how you can best help your mum. You do have to be quite pushy to get answers. I was much tougher at the end of the process than the beginning.
My thought are with you, through this very difficult time.
Jenasaurus · 20/05/2018 23:08
Thank you for your post izzywigs Its so hard isn it.
I am confused as I thought that without water its normally 3 days to a week you survive. My mum hasn't had any water at all for the last 8 days, and is still very much alive, she is sleeping a lot but making groaning noises and agitated. They have given her midazolam and she has a morphine patch. They have told me it isn't likely to be soon and can take 2 weeks or more. She has bed sores and bruises all over her, she is breathing rhythmically but makes little gasping noises and sighs, her mouth is fixed in an open downward position and there is a rattling noise when she breathes but her skin colour remains pink and her nails are not blue or showing signs of a lack of oxygen, my sister is now back from abroad and the 2 of us are sitting with mum, talking to her and cuddling her. I believe she can no longer see as on the times her eyes have opened she has a glazed distant expression. I have used aromatherapy oils on her hand and am trying hard to be upbeat when around her but its so hard.
Izzywigs · 21/05/2018 09:49
I also thought that the human body could not survive very long in the circumstances. Nothing that I read prepared me for the many weeks it took for my mum. I don’t blame the hospital as, I now know, it is not an exact science.
My mum was also doing the agitated movements at first, but slowly slipped into what seemed like a restful sleep. Nothing prepares you for the long vigil. I think one of the hardest things was to feel I had to be there Day after day. I did not want her to die alone. As the weeks past I realised I had to take care of my own life. I admit that I said my goodbye when the decision was made to withdraw the fluid. I did not return to the hospital after that. I don’t feel guilty about it, I did what I was able, but for me that one one step too far.
Icepinkeskimo · 21/05/2018 20:42
Just checking in and sending love to you Jen and to you to Izzy. I'm glad you gave your Mum a nice aromatherapy massage Jen, the hours seem to drag sometimes, and these thoughtful things help break up the time. X
Jenasaurus · 21/05/2018 23:40
Thank you icepinkeskimo my lovely mum passed away in my arms this evening, she is finally at peace x
Icepinkeskimo · 22/05/2018 06:25
Jen, I just got up fed the cats, and made my cup of tea, and saw your latest update. I won't be the first or the last person to tell you I am sorry for your loss, but truly I am. You did right by your Mum, and she knew that, so please don't beat yourself up, we have a tendency sometimes to do this, it's the grief that can make us feel like that.
Grief is a strange thing, I have learnt this, it can wash over us like a wave at any given moment, one minute we can be ok, the next a complete wreck, be prepared for it, and go with the flow. It's exhausting, so please rest and sleep when you can. You must feel worn out physically and emotionally, my thoughts are with you. X
Izzywigs · 22/05/2018 07:53
Sending you love Jenasaurus and strength now to get through what is to come. I hope you will take comfort from being with your mum when she died.
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