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Jenn

Registered User
Feb 24, 2009
50
Leeds
Hello everyone.
My Mum is entering the last weeks of her life, we've been told it may be a little longer but not by much. She is on perpetual bed rest now and sleeps more or less permanently. They turn her regularly and she drinks orange juice and a sort of nutrition drink but nothing else. She is weakening and losing weight.
Sometimes she wakes and opens her eyes and smiles, but rarely.... I know its dreadful but this has been going for so long now it's become normal if you know what I mean. I visit and sit with her (or chat at her) and put on her favourite Radio 3. I know I'll feel devastated when she goes, but for now it's put on hold almost. At least she is in a home and not in a hospital which is much better.
I just wondered if there was anything more I could do to help her, if anyone has any suggestions, and what I should expect in the last weeks. It's horrible seeing her decline, I feel really she should be given something to make it quicker but that's not for me to say. Hopefully she is not aware. The last thing she said to me was `Ooo your hand is cold' when I held her but I've had nothing else. I just wanted to make sure I'm doing the right thing by her. :(
(Sorry I accidentally posted this in the `Middle Dementia' section before here. If someone could delete it for me that would help)
 
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Chloebo

Registered User
Feb 22, 2016
13
Hi Jenn, I'm really sorry to hear that your mum has entered end of life. My only advice is to take each day as it comes because it changes so much and to tell her you love her and hold her hand as much as you can...she will hear you. My heart goes out to you xxxx


Sent from my iPhone using Talking Point
 

Emomam

Registered User
Nov 13, 2014
116
Yorkshire
I've just spent the last 8 weeks with mum in bed, two bouts of pneumonia but talking all the time. We were told after the second visit to hospital that she should be treated as end of life care from then on as we could keep on taking her to hospital and having iv antibiotics and fluids l, watch her bounce back for a week or so, then start to decline again, over and over again. Mum had had enough and so we said that's it no more hospital visits. We found out that you can put precautionary drugs in place (morphine and buscapan) to ease any suffering at the end. Mum got very scared and in pain towards the end and was fitted with a syringe driver. I didn't know at the time that this would knock her out completely but it was a blessing really. The buscapan was to help with the rattly chest. Mum passed away 3 days after the driver was fitted the day before her 85 birthday last Sunday peacefully with me and my sister by her side. We let her go after a long 7 years.
Don't feel sorry for me I'm not telling you for that reason. I'm telling you what might happen to prepare you. I didn't know what to expect I thought she might get better but I think it was me just trying to kerp her going. It's harder to let go.
Give her chocolate buttons. It was the thing mum loved most at the end as they melted in her mouth.
Make sure you have some lip balm for her.
Ask for lollipop mouth cleaners (district nurses have them) to cleanse her mouth. The care staff said to put pineapple juice on the sponge as it cleanses the mouth.
Talk to her as if she is joining in the comversation. Sometimes you my get a reaction.
Soothe her by touching her cheeks.
I hope that helps a little.
 

Jenn

Registered User
Feb 24, 2009
50
Leeds
Thank you for both your replies. Your suggestions are really useful, in particular the lip balm and the lollipop mouth cleaners. And chocolate buttons too, my Mum never used to have a sweet tooth but she has developed one in the last year so that's a good idea.
We're lucky Mum is not in pain. She too has precautionary drugs in place. I'm hoping she is not aware of what is happening to her.
I feel guilty that normal life goes on - work, ferrying kids about, the build up to Christmas etc and there she is slipping away. :( oh well
I'm sorry about your loss, its a hard time. You can console yourself you do your best by her
 

cragmaid

Registered User
Oct 18, 2010
7,941
North East England
Life goes on while the waiting continues. Go in and visit, talk about your Christmas shopping, include Mum in the general chit chat as if she was answering you.Laugh, sing, chat. Talk to the carers about their plans, the weather, the play on TV....anything and everything. Mum will hear you and her time to leave will come eventually. As long as she is comfortable and in no pain....whatever you do will be right.

I sat in your seat 18 months ago...... and hold your hand now. Love Maureen.x.x
 

CeliaW

Registered User
Jan 29, 2009
5,643
Hampshire
Touch is very important. If it is possible, massage her hands or her feet, either with lotion or maybe a base oil such as almond oil with a couple of drops of lavender essential oil to help relax both of you (check with CH staff but it should be ok) Massage can be a soothing activity for you both, it's a "non medical /personal care" type of touch which can really connect and comfort.

As long as you are gentle and don't compromise the integrity of the skin then you don't really need instructions but you might find this helpful.

https://m.youtube.com/watch?v=0kpev5PdoxI

xx
 
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Jenn

Registered User
Feb 24, 2009
50
Leeds
Thank you for your thoughtful replies I do appreciate it. My Mum now is sleeping all the time and food and drink have been stopped, except for lubrication around the mouth. All medication has stopped too, except for a morphine patch. So I feel the end is not so far away. I've been taking people's advice and using lip balm and swabbing her mouth with one of those little sponges - and actually the home who have been brilliant suggested the same thing. And I've also massaged her face and hands a bit too, it does seem to relax her I think.
She is very peaceful, and sort of serene somehow. I've spent all day with her and glad I have this opportunity to say goodbye properly. My brothers say withdrawing the food and water is cruel, but instinctively I think not. I don't think she could swallow anyway. The trouble is my husband and one of my brothers both are a bit dismissive of her as if there is just the body left now and there is no point spending time with her. For myself I just think life is on hold now for the time being until it is over.
 

Emmy_83

Registered User
Mar 8, 2014
72
Yorkshire
Re:

Hi Jenn

I was in this position only last week. The nurses provided us with a gel that you could put in the water before you use the swabs which my dad seemed to like especially on his tongue and it freshened his breath.

He went peacefully in his sleep on his 90th birthday but there were meds on hand if he had needed them.

Just being there and holding their hand helps so much. We were told their hearing is the last thing to go so keep on talking and sharing.

Big hugs
Xx
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Tell your brother she isn't dying because she's not eating. She's not eating because she's dying. What would be cruel is to keep trying to feed her.

This I kept in my head when mum was dying. She died 2 weeks ago today. No pain, just gently stopped breathing. I call it a "good death".


Sent from my iPhone using Talking Point
 

MavisGrind

Registered User
Oct 29, 2016
2
I am so glad I found this thread today. I've been lurking on Talking Point for a while since my mum had her vascular dementia diagnosis but never posted before. My mum has been on end of life care for four weeks now with no food or drink, just a bit of moisture from mouth care. Her care home is great and they do look after her well but I am am mess. I have been on standby since they told me she was end of life, going to see her when I can but also having to work and be there for my husband and children. I am exhausted by the waiting. I do talk to my mum though she can't respond now and I read to her, bits of books she used to like, poetry, bits out of magazines. I also found some music, old songs she sang to me and music she liked on Spotify which got a reaction. It's so hard to watch. I am just wishing for a peaceful end now.
 

Emmy_83

Registered User
Mar 8, 2014
72
Yorkshire
Re:

2Jays I couldn't agree more.

MavisGrind just spend what time you can with your mother and that peaceful end will come. She's being well cared for and knows you're there.


Xx
 

Jenn

Registered User
Feb 24, 2009
50
Leeds
Mavis I know what you mean, life does carry on around you still and it's hard when you don't know how long it will be... Especially with work, I don't know how much time I can realistically get away with taking. Then I have commitments with the children too. Life is in limbo.
But I don't know about your Mum but mine is very peaceful and I am heartened seeing her so comfortable and not in pain, and it is good spending this last time with her.
 

Jenn

Registered User
Feb 24, 2009
50
Leeds
2jays yes that is what I am hoping for 'a good death' you can't ask for more really, and a fitting end to a good and lovely person
 

MavisGrind

Registered User
Oct 29, 2016
2
Mavis I know what you mean, life does carry on around you still and it's hard when you don't know how long it will be... Especially with work, I don't know how much time I can realistically get away with taking. Then I have commitments with the children too. Life is in limbo.
But I don't know about your Mum but mine is very peaceful and I am heartened seeing her so comfortable and not in pain, and it is good spending this last time with her.
thank you for your kind thoughts, I am glad to hear your Mum is very peaceful as it is so hard to watch them slip away.
My mum passed away peacefully in her sleep early this morning. I wasn't there, but had been to see her yesterday and felt the end was near. She had been without food and water, with just mouthcare, for the last 4 and a half weeks. But not appearing to be suffering, quite calm and sleepy most of the time. I'm glad to think that my last words to her were I love you and goodbye.
My best wishes for you and everyone else who is at this point.
M xx
 

Rodelinda

Registered User
Jun 15, 2015
172
Suffolk
Sorry to hear about your mother, Mavis. It's tough isn't it even if it's likely to be on the cards. I also hope that your mother is continuing to be peaceful Jenn. I found this thread at the weekend after being told that my mother has been placed on end of life care and NHS CHC will be granted to move her to a nursing home. It was a bit of a shock as ten days earlier she had been eating, moving around, talking etc. She is sleeping all the time, isn't eating and just has the odd sips of liquid. She doesn't seem to talk but is quite; she has a lot of secretions which affect her breathing and she clearly finds that very uncomfortable - as she does the frequent suctioning.

I'm scared at the length of time it seems that people can exist in this stage of their illness as it just seems so cruel for them. At least we seem to have passed the very quick aggressive stage when she hit care workers (causing quite significant injury) and two care homes (including a specialist dementia home) said they were unable to keep her and other safe (she'd gone for 2 weeks' respite care to give us a break). So I'm keeping my fingers crossed that good nursing care will be found for her and she becomes more peaceful. I am visiting her twice a day when in hospital and know I can do little more than hold her hand, tell her I love her and just talk. All the best both. Sue
 

Jenn

Registered User
Feb 24, 2009
50
Leeds
i'm sorry Mavis to hear of your loss, and to you Rodelinda, I hope you find a decent nursing home who will give loving care to your Mum in her final weeks. It's very hard seeing your Mum suffering so, but I'm sure little things like holding her hand means a lot to her.
My Mum passed away on Monday, very peacefully at the end. I wasn't there, ironically because my brother and I had been there all day and all evening, and the care manager told us to leave because she said Mum was hanging on waiting for us to go and that she wouldn't die whilst we were in the room. Sure enough she died within 20 minutes of us leaving.
I know there is a lot of bad things said about care homes, but they were brilliant with us. I can't thank them enough. It could have been a thousand times worse than it was. I just felt Mum slipped away contented and it has really helped me.
My sympathies are with everyone else who is going through the same thing at the moment. A tough time.
 

Rodelinda

Registered User
Jun 15, 2015
172
Suffolk
Jenn - very sorry to hear of your loss; I know it's tough as my mother also died on Monday evening. I wasn't with her in the hospital as she had been sleeping peacefully when I left at 7.30 only to be called back a little later and arriving 10 minutes after. The hospital were caring and thoughtful with her care and although sad I am relieved that she will not have to suffer the increasing indignities of dementia for any longer. Take care . Sue
 

nicky1

Registered User
Sep 21, 2015
7
Cumbria
thank you for this psot

Thank you for your thoughtful replies I do appreciate it. My Mum now is sleeping all the time and food and drink have been stopped, except for lubrication around the mouth. All medication has stopped too, except for a morphine patch. So I feel the end is not so far away. I've been taking people's advice and using lip balm and swabbing her mouth with one of those little sponges - and actually the home who have been brilliant suggested the same thing. And I've also massaged her face and hands a bit too, it does seem to relax her I think.
She is very peaceful, and sort of serene somehow. I've spent all day with her and glad I have this opportunity to say goodbye properly. My brothers say withdrawing the food and water is cruel, but instinctively I think not. I don't think she could swallow anyway. The trouble is my husband and one of my brothers both are a bit dismissive of her as if there is just the body left now and there is no point spending time with her. For myself I just think life is on hold now for the time being until it is over.
thanks for this info, I'm in same boat with my dad and these tips are very useful cheers