Hate seeing her like this..end of life care

[Crazyladee]

I don't know why I am posting this.. Just need to get my thoughts written down I suppose.

My Nan is 96 years old and for about 8 years been struggling with dementia. She's always been a very strong fit and healthy woman. I've been very, very close to her all my life and for many years been closer to her than my own mum.

Anyway, fast forward to last Wednesday. She was admitted to hospital after the care home noticing a decline in her health.. Refusing to eat, not wanting to get out of bed. Blood tests showed her kidneys had failed and she has an infection in her blood. The doctors told us on Wednesday morning that she has hours, not days to live.

She was placed in a private room on a ward and we were told that the life supporting machines (drip, oxygen, heart monitors, blood pressure checks) were going to be taken away from her as there's nothing they can do for her and it is just prolonging the inevitable.

So all they are doing for her is turning her every few hours.

That was last Wednesday. We are a very small family, but the family that we do have, have all visited to say their goodbyes.

Between me and my dad we have been taking it in turns to stay with her. There is a small camp bed in the room and my dad has been staying overnight and I have been going every morning to let my dad go home for a few hours.

Now it's Sunday night and she is still with us despite the doctors predicting she had hours to live on Wednesday. Because she has has no fluids, no drip since Wednesday, she is, hour by hour looking terrible. She is basically shrivelling up, her skin, eyes and mouth is so dry. Her tongue is almost reptile like. She is babbling away in an unrecognisable hoarse voice so you can't make out what she is saying apart from "help me" it's absolutely gut wrenching seeing her like this. They've given us little sponges to squeeze water around her lips but she seems hyper sensitive to touch and doesn't seem to want any drops of water around her mouth.

She also seems to be in a lot of pain. She is having a small dose of pain relief now and again.

I've been a wreck since Wednesday and can't stop crying. I honestly can't bear seeing her like this and it's breaking my heart. I am trying to be strong for my dad but I'm falling to pieces. I can't understand the decision not to put her on a drip. The doctors said this is end of life care and the drip will drag things on even more but part of me feels it's so cruel and almost barbaric that she is being dehydrated to death.

Sorry this is so long.

[Justasec]

No personal experience of this but wanted to give your a virtual handhold and hour that others with more knowledge Will be along soon. I would hope that if nothing else you can ask for more pain relief for her? Maybe research end of life pathway for your hospital and check they are following it? It sounds awful for you, remember that by being there you are doing a wonderful thing for your Nan.

[S0upertrooper]

Hello, so sorry to hear about your Nan, this is very sad. My mum was in a palliative care unit and received end of life care very similar to your Nan. She knew she was dying and I spent a lot of time with her which was a comfort to us both. It it very draining emotionally and physically waiting for someone to die and feels very cruel. I couldn't do much for my Mum but I talked to her and sang along to music which she sometimes joined in to. I had an aromatherapy burner and I mixed some oils which I rubbed into her hands and feet. It helped keep us close. If you feel your Nan needs more pain relief speak to the staff. You're doing a great job supporting your Dad, well done. I hope things progress soon for your Nan and she goes peacefully surrounded by love. Take care x

[legofansmum]

So sorry to hear about your Nan.
I lost my dad two days before Christmas. He spent his final two weeks in a hospice. They gave him a syringe driver to ensure he was pain free. He didn't eat for the last week and became unconscious.
You could literally see him fading away but he was comfortable.
I hope they can give your nan similar so she can pass peacefully if it's inevitable.
Thinking of you .

[retirednow]

I am sorry about your nan, do ask the nurses if she has seen the palliative care team and tell them you think she is in pain, they can reassess this to make sure she is comfortable. It's a difficult and emotional time for you all, she will get comfort from knowing you are all there.

[Potentialmadcatlady]

I went through this with my Mum. Fight for her- insist on pain relief, as much and as often as she needs it. She needs you. I found playing music helped calm my Mum and endless talk about her pets/children/friends.. I just talked when she was awake and sat beside her touching her arm so she knew I was there while she slept.
She will know you are there and once she is gone you will know you helped her. Be kind to yourself- it’s a v v hard time. Hugs from a stranger who understands xx

[MinisWin]

I’d agree re. asking about a palliative care review of pain relief and/or requirements for gentle anxiety relieving drugs (not to knock her out but to make her more comfortable and settle any distress). Mouth care also important for comfort. Please try not to worry too much about the drip; while the concept can of course be hard to come to terms with, the last thing a person in their final days is to be filled up with lots of fluid that their organs aren’t working well enough to process; this can lead to further discomfort and distress and unpleasant symptoms related to fluid overload, like swelling and shortness of breath. Fluid requirements are hugely reduced at the end of life, but that shouldn’t be at expense of her comfort, hence my suggestion of good mouth care above - the foam ‘lollipops’ with moistening gels (like gelclair) may be better tolerated, and do ask the nurses to help you with this. Also if she wants to drink, and is able to, this is also usually reasonable - a straw may be easier. Additionally I would echo above suggestion of enquiring whether a syringe driver might be considered (though palliative care will more than likely suggest this themselves once her requirements become clear). I’m so sorry that you and your father are finding this time so difficult; it always is, but sounds like with a few tweaks your grandmother could be made more comfortable and perhaps this would go some way to making it a little easier for all of you. (I’m a doctor and my own grandmother passed away, so I’ve been on both sides of this situation very recently).

[Fairylea]

Definitely fight for more pain relief, possibly a syringe driver. My Gran had one in her final days when I nursed her at home and it meant she passed fairly peacefully. I kept talking to her and it sounds crazy but we kept things as normal as possible around her - she was at home with us in her own room so we put her favourite tv programmes on and made things comfortable for her, even though we weren’t sure if she was aware of things or not (she seemed like she was either asleep or passed out on the pain med). I feel for you, it is very upsetting and gut wrenching.

[Crazyladee]

I've been playing her Vera Lynn wartime music and I took in a box of old photos to show her. I've been talking to her and holding her hands as well. She is totally deaf so I've no idea whether she can hear me.

I've been asking for pain relief when I can see she is in pain (and she is having it) but the main worry for me is the lack of fluids. I hate seeing her so dehydrated. She cries out when I even go near her mouth with the sponges on sticks. I've spoken to the nurse who mentioned ordering mouth spray but they've been that busy, it's not happened yet. She is not well enough to ask for water even through a straw.

All the lovely childhood memories of all the time we have spent together and things we have done in the past have all come flooding back which is upsetting me more than helping me as I look at this bird life frail old helpless woman and can't believe it's the same person.

[Crazyladee]

Thanks for all the reassuring posts. MIniswins as a doctor your post was particularly reassuring.

I have no idea what a syringe driver is?

[PinkBuffalo]

I'm so sorry you're going through this OP. It's heartbreaking.
I know what you mean about the timeline. I was told my lovely dad only in his 60s wouldn't last the weekend. We are 6-8 weeks down the line and I'm still visiting every day. to you

[mineofuselessinformation]

OP, I'm so sorry for you.
Do ask about her having a syringe driver. It's a tiny needle, usually inserted into the thigh. It's attached to a box that delivers steady doses of pain and anti-sickness medication.
Insist on a mouth spray for her, it's the least they can do.

[LilaBlue]

I have very recent experience of this, it's very very difficult to see someone you love at this stage.

We had to decide whether to agree to the end of life plan which was hard enough, without the actual process taking a fair amount of time.

We found that additional morphine was helpful as it stopped her being distressed and also the mouth care being done regularly helped.

Lots of love to you

[retirednow]

A syringe driver is a mixture of medication, usually a painkiller like morphine , an anti sickness and a light sedative, also sometimes a drug to help dry up any unwanted secretions. It is all mixed together and put into a syringe attached to a long thin tube and a little needle on the end which the nurses put in just under someone skin, it is kept locked up in a plastic box which the nurses put under the bed clothes
and is set to deliver a set amount over a 24hr period. It saves people having to have injections and because they are constantly getting the drugs they are comfortable and calm, the doses of each drug can be altered if necessary. Her mouth will feel dry, like a pp said the nurses will be helping with this, the spray will help and also some Vaseline type gel to put on her lips. Do ask if she can gave a few sips of water.

[Twerking9to5]

OP, I’m so sorry you’re all going through this. It brought back memories of my Nan just over a year ago. She was in her 80s, dementia for years beforehand and things started shutting down. Mum and I were with her as much as possible (I think it was about a month from finding out she had stage 4 lung cancer to her passing away). The night before she died was very very tough. The only positive I could glean was that we were with her, holding her, telling her we loved her, stroking her hair. There must have been some comfort in that for her. You are doing all you can and being very selfless-seeing a loved one like that is torturous. She will know.

As others have said please do push on any other pain relief you can-my Nan was meant to gave a driver but passed away before it arrived. It would have helped her enormously at the end I think.

Sending hugs x

[Oly5]

My mum died of cancer and was horribly dehydrated at the end, as you describe. The hospital can not stop you giving your man sips of water. So give water on a teaspoon if you like. My mum got to the point where she couldn’t really swallow so it became quite pointless.. but I know what you describe and the feeling that they are dehydrating to death. If your nan wants water and can be given it, then you can give it. You can also look up NICE guidelines which suggest a drip can be given in some cases for comfort. You would need to discuss this with the palliative care team (ask to see them). Definitely demand the mouth spray and ask about pain relief. So sorry you’re going through this

[mummymummums]

So sorry you're going through this. My mother passed on Friday in nursing home - she had three to four days of dehydrating. It was awful to watch.
She had sedation and morphine, and I don't think pain, but the breathing was awful to hear and see. When the end came it was very quick, and I was relieved for that.
My brother coped very badly - he kept shaking my Mum and sobbing loudly over her. I went and got a GP who told him he'd have to intervene if he carried on. My brother popped out for an hour - mum was still expected to have a good few hours or even days and immediately my brother left she went downhill very quickly and was gone in 40 mins.
I hope you can get her comfortable and have peace in that

[seventh]

So much love to you and your dad xxx

[Sofabitch]

I was also shocked by this when my grandad passed. I expected him to peacefully slip away. No one prepared me for the terminal aggitation and the hallucinations. It was a pretty horrific week :(

It makes me question our whole viewpoint on euthanasia.

Try to rest when you can. The only very minor upside for me was that when my grandad died it was easier to be at peace as I could see he was no longer suffering.

[MinisWin]

Sorry Crazy, I should have explained that - it's exactly what retired said.

[Crazyladee]

Thanks again for the replies.

She's still with us.. Despite a week ago given hours to live. My DH has just told me he thinks she is immortal! I never knew the human body could last so long without the kidneys working and without fluids!

I'm with her at the moment just reading and holding her hands.

I've asked the doctor about a syringe driver but they have said no. They also asked what our plans are moving forward with regards to her care? Eh? Turns out, they want her room to make way for someone else! My dad hit the roof and told them that she's going nowhere! Where is she expected to go?? He soon sent the doctor scuttling off!

It's hard as, when I can see she is in pain, I have to find the nurse who is looking after her on the ward and then when the pain relief does arrive, she is screaming as she doesn't like needles. It also takes about half an hour for the pain relief to kick in.

I just want her to pass away now.. Peacefully. I hate that her ending is dragging on the way it is. 😥

[S0upertrooper]

Hi there OP. You made me smile when you said you were reading to your Nan and holding her had, how lovely for you both.

Did the Dr explain why they won't give your Nan a syringe driver, might be worth asking why? Is she in a palliative care unit? They may have asked what your plans were for care as some patients and their families want to go home to die.

My mum wanted to go home and we were waiting for a care package with McMillan Nurses but she died before this could be put in place.

Keep talking to her and reminding her of all the family stories, and take care of yourself. ❤️

[retirednow]

Please ask to speak to the palliative care team about her pain relief, the doctor may not have a lot of experience ask them why they don't think she needs it, it may be that she hasn't really had many pain injections.

[myrtleWilson]

Hi OP - am so sorry to hear about your Nan. I have to say her care doesn't sound at all like the care I saw with my mom who died at home (but with on call nurses and regular Macmillan sitters) nor that experienced with my sister who died in a hospice - she was only in early 40s. My sister had a syringe driver for several weeks and in the hospice her pain relief was regularly adjusted - even after she fell into unconsciousness any "agitation" we saw - the staff would adjust pain relief. The health care assistants would also come in during the day to wash her/change her nightclothes and brush out her hair - they were so caring towards her - it really helped the family. Is it the actual palliative care team who are treating her - if not can you insist on them coming to see your Nan? I think they are much more aware of the wider holistic nature of terminal illness and are there to support the patient and the family members. Take care of yourself

[Crazyladee]

Thanks for the replies and thoughts.

She's in a medical assessment ward which was where she was placed from A and E which is where she was ambulanced to from the care home.

The nurse on shift has told me that the palliative care team have said the syringe driver is not needed as it would be too much of a jump for her to from what she's having now which is two doses a day or so to 24 hour constant pain relief from what's she's having at the moment. She is sleeping a lot but when she arouses she is grimacing and crying out a lot.

I do believe that the doctor was wanting to see if we wanted her to go home to die but the heartbreaking truth is that she doesn't have a home to go to! The care home weren't great at providing care for her before she was ill so there's no way it's a suitable place for her to go to now! The doctor also mentioned that they needed her room but we've dug our heels in and told him to jog on.

[PistFump]

I'm so sorry to read this OP as I've very recently been through the same thing with my own nan following a deterioration in her dementia. In the very final stages she was sedated along with pain relief to relieve her of her discomfort. I just pestered and pestered for pain relief whenever there was a hint that she needed it. There was a time that she had a pain relief patch on her skin but I'm afraid I can't remember what it was called but maybe you could ask about that if she doesn't like needles. Thinking of you and sending love your way, it's such a distressing and difficult time watching someone you love in this situation