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End of Life - Stop/start eating and drinking

Hello

My mom is 87 and in a nursing home due to vascular dementia. She has been really poorly for the last three weeks and was put on 'End of Life care' last week. She was refusing all food and drink for nearly a week so the home were expecting her to pass away within a few days but on Saturday she said she was thirsty and drank a fair bit of water, on Sunday she was hungry and had just teaspoon of weetabix then refused everything else until yesterday when she had a small cup of milk!

She is very sleepy but still rouseable, her hands, feet and face feel really cold and she looks dreadful having lost so much weight and her skin has got a very pale, waxy look about it.

The nurses say that she can't go on much longer but that everytime she drinks or tries to eat something it is dragging it out.

Has anyone else experienced this? If so, do you have any idea about how long this could go on for?

This is the most horrendous thing to watch and I hope for her sake that the end comes sooner rather than later.

Thank you

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That’s very sad Vivwa and I feel for you and your dear mum. My mother in law is also in a care home at 86 with vascular dementia and Alzheimer’s.

My husband and son saw her yesterday and felt she wasn’t doing well but who can say.

Your mum will rally when she eats and drinks. Is there anyone you can speak to at the home? What does a doctor say? Sorry not to be of much help but I’m thinking of you. Xxx

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HI Vivwa,

I am sorry to hear this. Yes, unfortunately, I have personally been through this with my mum who had vascular dementia, and my mother-in-law. It is a distressing time for you both, in that yes, she is probably coming to the end of her life. But I urge you to ask the nursing staff to at least insert a subcutaneous infusion drip, as this will keep her hydrated all the time. To die of dehydration is painful and unnecessary. Subcutaneous infusions won't prolong her life, but together with adequate pain relief (if required) will make her comfortable. Keep encouraging her to try little bits of food and drink. Keep her mouth cleaned with little sponges soaked in water/mouthwash to prevent oral thrush. It may be something to think about, but when folks lose control over their lives through dementia, often they subconsciously start to refuse food as the one thing they can control. Also, if your mum does improve significantly, you can request that she is taken off the End of Life Pathway, it is not set in stone and is flexible.

Above reassure your mum, say the things that need to be said, get the family over to say their goodbyes. This situation may drag on, but remember, that while there is life there is hope, and once they have gone, you won't get this time with them again.

Know that we care about you, and many of us have been in your situation. You are doing amazingly. Please keep in touch.

Sending you our love and best wishes,

MAS Nurse and Moderator

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Hi Vivwa,

First of all I am so sorry to hear of this and it is very distressing and stressful.

My own sister was quite similar at the very end. As her body gradually shut down she went through several periods of taking fluids and nourishment followed by refusing them. Then it slowed to a few sips of water, and we sat with her and let her drink if she wanted, but the amount she would take diminished to almost nothing.

You can trust in what your mom's nurses are telling you about her passing fairly soon now. Those who care for the elderly and seriously ill, have seen the signs very frequently.

It's sad and distressing for you, but probably not quite so bad for your mom. There is less and less awareness of what's going on around you, sometimes with just momentary periods when she will realise you are there, and feel comforted.

Although my sister had dementia, it brought less memory loss, but more paranoia, so she had an awareness of what was happening, and although there were no 'goodbyes', or spoken acknowledgment, she was at peace with herself and ready to go. At the very last, she seemed a little distressed but then fell into a deep sleep, and passed a couple of hours later, as we held her hand.

It's hard I know. There are no words to make it better and there's no way to escape it. But just know that you love her and that she knows you do. Let nature do the rest.

I don't know how it will be for you, but along with the huge pain as she left us, there was a feeling of great relief that now it was all over. After all our real sister had left us some time before, as a result of her dementia.

Love and comfort to you, and I'm sure any of our Care Community group reading this will be sending you wishes of support and love.

Bless you both.

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Hello Vivwa, I can really sympathise with you with regards to eating and drinking and Vascular dementia, as my mum has not long been diagnosed with the condition, but she gets very agitated and anxious and points to things and she is quiet. My mum has previously been in an Elderholme for four months after being in hospital for 3three weeks prior to that. My mum has been home now for about three weeks now and she is confined to bed in our lounge and has a commode but we are waiting for a hoist so she can be transferred to a chair etc. We don't want her going into any more nursing homes because she lives with my dad who is our carer because I suffer from Refractory Obsessive compulsive Disorder OCD. It looks like my poor mum might have to go into hospital and be put on a drip because she also refuses her meds, and it can anything up to three hours to give her them as well as three "ensure drinks" a day she can't even finish one off, if she is lucky she might get that. Now she refuses drinks as well . We are in dire straits like you.My dad says he doesn't know what's going to happen to her and where might she end up? Hmm, that's rather depressing isn't it? "I try to be positive about it and hope that my Mum still has her life to live" which is a fact . and hope your mom still has her life to live. I know its rather depressing but try to be a little more positive for her sake. I also suggest your mom might have to go to hospital to get the right medical care and attention she needs. I hope this helps.

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I had a similar experience with my late husband. I think the entire process took about six months. However, his immediate cause of death was a fall. I am glad you are able to express what many of us thought when we were in your situation -- that we hoped death came to our suffering loved one sooner than later.

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It is so distressing watching people suffering like this.I think we feel a deep need to do everything we can to prolong their life at the same time as wanting it to be all over... I agree with Callenders gal who is talking with her usual compassion and good sense that it is quite possible that your mother is less aware than you are. She needs to be hydrated to keep her comfortable but probably all she needs is for you to be with her and giving her the love and peace she needs to make this lastjourney

FredaE

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Thanks FredaE, that was an exceptionally nice thing to say.

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I also agree. If someone is still enjoying something daily, something small, life is worth living for her even if it doesn't look like to you, as a daughter. Put yourself in her shoes, would you want your "daughter or son" to wish you "go sooner"? End of life isn't pretty, but it's also sacred.

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I totally agree with autumnsonnet.

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A person can live on fluids alone longer than with food alone Is it a nursing or residential home your mum is in Each individual is different with no set time to when they will leave their loved ones You say mums skin skin appears cold but healthy Coldness can be down to the poor circulation but skin looking good is a good sign Mum will be getting some fluid in small amounts from her lips being moistened In the EMI residential home I work in we try to care for our residents along with the district nurses and hate having to send the into nursing if it becomes necessary After all its their home with people they are accustomed to I got the home a certificate in end of life care with our local hospice We try to make their last days as peaceful as possible We play sandpipers in their room very low Have battery operated candles and perfumed plug ins We place a crucifix if they wish on their wall and hang a dreamcatcher over their window We also have cherubs and crystals in their room and a book for family to write their feelings in All this was my idea to make residents more comfortable On their doors we place purple butterflies so visitors know we have a Ill resident Even the other residents seem to sence this and there is peace on the unit Your mum will receive all she needs to remain as comfortable as possible with all the trained staff she will need .It's the sad part of this illness and one feels so helpless when it's their parent that it's effecting but you should be sure that your mum knows how you are feeling and how much you love and care for her .Never be afraid to speak to the staff If you feel your mum needs to be see by her doctor then you ask for this It's your right to still act on her behalf These times make us find a inner strength and later the strength to remember all the good times to Thoughts from a carer of EMI residents xx

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Hi Vivva

All good advice and support have you got a nice scarf you liked on your Mum? It is extremely distressing to see a person change at end of life, but it sounds like the home and you are doing all you can to help keep her comfortable and feel secure at the moment, and in the future this will be of comfort to you

Sending you support and love x

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Bless you, it is upsetting isn't it? Dying can be a long process. That surprised me. I thought once you were ready to die and the body worn out, death would come and not hang about over it. Isn't death busy? But in reality it's not always easy. A bit like being born. Some arrive quick, and others take their time. The main thing is to treat them with love and care and keep them as comfortable as possible till they can let go. Hard I know. Years ago there was a pathway where food and drink was withheld when staff thought folks were ready to die. I remember they said it was found to be cruel.

Be brave, it can be a privilege to spend time with those dying. Again like attending a birth, there is something special. Yes it can be challenging and scary, but also, if you believe in spirit, it is a time when the different worlds merge. I believe this because that is what I've seen.

When I have sat at the death bed, I've felt I was letting my loved one go back to other loved ones lost long ago. I imagine when someone holds on, they are conflicted over staying with loved ones here, or going somewhere new with other loved ones. They don't want to leave us sad. We can help by telling them it is OK.

Take the positive of this. You have the time to talk. Even if it is just you talking. And at this time, you can talk your heart. And if words wont come, there is holding hands, and offering care and gentleness. They will feel the love you want to give. One day, it will be our turn. Will they return to collect us? Hold our hands and tell us, it's OK to let go. I think they will.

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All very sad as I know so well.

My partner David stopped eating and drinking for several days and I told him if he does'nt eat he will not survive,and thankfully he has started eating again,not huge amounts but enough.

It is indeed so hard watching anyone deteriorate and my thoughts are with you.

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