To ask for advice for palliative care for an elderly lady

[CoffeePhoenix]

My MIL is sadly being sent home from hospital with the expectation that she will die in the coming weeks.

May I ask for any tips you may have or things that you wish you had known? Her return is happening very swiftly and I'm feeling unprepared.

We have a carers package for personal care in place already, and we've been told that a referral to the palliative care in the community team will happen when the district nurses think it is appropriate.

Hi I recently went through this with my dad.
My advice is take all the help offered. Especially "time out" even if its just so you can have a 20 minute walk or a bath.

The hardest thing was feeling guilty for needing half an hour to myself.
I totally underestimated how physically demanding caring for him would be. Yes we had personal care staff but they came at set times in the day and there was several times day and night I needed to provide that level of care.

Its also emotionally draining watching a loved one die. You know its coming and everyday you are consumed by the thought of is today the day.
You need to look after yourself so that you can look after them.

Firstly I'm sorry you have to ask this, I hope everyone involved is as OK as can be
I'm a student nurse and have recently been involved in a lot more end of life care than usual.

I'm really passionate about mouth care in end of life care, when their fluid input declines and maybe mouth breathing the mouth can get sore and dry. You can get some sponges on a stick where you can freshen up the inside of the mouth and gums and it really makes a massive difference. Ask the community team about dry mouth gel too, it best to have all these things before you need them.
Can she eat or drink? Things like custard and jelly are easy to eat even when you are tired.
I was shocked at how quickly things can change so be prepared for her to be fairly OK at some points and a few hours later look very different, I found that the hardest part.

Please remember to look after yourselves and talk if you need to.

Oh and make sure you have all the equipment, pads, bedding and medication in place before she gets home. If she needs them.
We had a nightmare trying to get repeat prescriptions from the GP.

We have been through this recently sadly with 2 relatives in the close family. Don’t be afraid to ask for more help especially for their personal care as they can get sore towards the end and the trained staff do know how to move patients kindly.
Have extra sets of bed linen and blankets to hand as they get hot/cold multiple times a day.
We found a Tommy Tippee sippy cup useful as they could still drink when they wanted without it spilling.
The sponges on the sticks mentioned above are great. I had to ask at our local pharmacy and they were kept under the counter. Also Vaseline, baby wipes and hand cream for freshening them up when they are in bed for long periods of time.
There are systems in place to help even out of hours at the weekend. Keep the local phone numbers handy. In the middle of a Saturday night I was able to get a prescription from an out of hours GP for morphine, which an out of hours pharmacy opened up to give me (apparently each area has an emergency out of hours on call pharmacy) and a District Nurse came to give the injection to my relative. It all happened very quickly and smoothly and we greatly appreciated it.
Take care it is a tiring time.

So very sorry for you OP

I went through this with my Nana last year. We had 4 days at home before she died.

Definitely make sure you have plenty of pads and any medicines. If you haven't already, speak to the hospital or her GP about getting a statement of intent to issue a death certificate. This means that when she does pass away, you just inform the GP and don't have to call the police out. Speak to the GP about prescribing and leaving end of life medication at the home for when it is required.

The district nurse should be in touch -get a number from them from hospital before she leaves. Give them a ring if they don't contact you within a day or two. Ours were phenomenal and in the final day in particular, came out whenever we needed, no matter the time.

Get some straws in -I know that sounds daft but before she lost consciousness, my Nan couldn't manage to drink from a cup without it spilling so straws were great.

If you can, take shifts with other family members to give everyone some space. Unfortunately, I lacked support and was mostly alone surviving on about 6 hours of broken sleep in 4 days was not pleasant

It may help you to read about what to expect in the final stages of life. It really helped me to know what was coming and what to expect.

If you and/or others will be staying at MiLs home in the final weeks/days, make sure there is a stock of tea/coffee/milk and easy to prepare snacks/meals.

If people are staying in their own homes but may be needed during the night, have some warm clothes prepared to chuck on should the need arise. At 2.30am one freezing March night, I was very glad of that!

Finally, make sure you know who to contact if there are issues during the night. My Nana's partner helped her onto the commode one night and then unfortunately, couldn't get her back. He called me out at 2.30am but when I got there (luckily only ten mins away), there was no way I felt confident to move her so called out carers.

Take care of yourself and eachother. It is unbelievably difficult both mentally and physically. I will be eternally grateful that I was with my Nan in her final days and when she died but I don't think I have ever felt so drained in my life.

I hope the time she has left is as peaceful as possible

I bought some water sprays in a can for a friend to refresh herself when she was too warm. Also at the Hospice where I worked they had lots of ice lollies for patients to suck to help with dry mouth as well as the mouth sticks. I think you can get the sticks on prescription now. As pp said mouthcare is really important.
Some areas have a terminal care pack prescribed for patients which includes morphine and other injectables. Not all areas have them, but they avoid the need to find an out of hours pharmacy or having to wait for stock.
We moved my mum's bed downstairs to the dining room so she was not alone upstairs but we had downstairs shower room. I think Macmillan or Marie Curie still have night sitters who will stay with your mum while you get some uninterrupted sleep.
I agree about getting good supplies of disposables before she comes home. Some are supplied via social services and can take a while to get into the system .
Sorry you are going through this, it's very hard for everyone.

Read up on what to expect at end of life, though each person's experience will naturally be unique. Get a baby monitor so you can hear when she wakes in the night or during the day when you are occupied.
Find out how any pain will be managed and what are the signs of it being ineffective. Don't worry about making her eat or drink unless it is wanted.
Some people will want to talk about their passing, others may not seem to. Don't be afraid to tell her things like how much you love them/are grateful for things she has done etc.
Simply holding hands can be comforting. Or a gentle hand of foot massage with lotion.
It can often be comforting to the bereaved to be with a loved one when they pass. Not knowing how it happened can be worse.

Get some straws in -I know that sounds daft but before she lost consciousness, my Nan couldn't manage to drink from a cup without it spilling so straws were great.

Absolutely! Also we found large jugs/cups/bowls with handles meant dad was still able to feed himself. That mattered to him.

And cheap clothes/nightwear as there were times when we had to cut them off to provide personal care. It was more dignified and less painful towards the end.

We also got him an Alexa. He loved it. His vision went the last few weeks so couldn't see the TV but Alexa played him all the songs he loved and he just needed to ask. Towards the end dad said he just liked hearing us chatter/talk about stuff/answer TV quizzes. He liked to hear our voices.

I wish I had made a post like yours 3 months ago xx

Been through this with both parents ( and it’s part of my job )

Firstly deep breath. You can handle this x

Secondly be guided by her but see people , say good bye. Sod Covid “ rulz”. You aren’t making her safer by keeping her friends away and if she gets Covid you aren’t shortening her life really.

See family. Live life around her.

At the stage I’d say eat and drink what you want when you want or not if she doesn’t. Mum had a wee tot of baileys and that made her smile. She had the Middle Aged Italian gentleman carer making egg custard in the middle of the night too 😂 . Dad stopped eating and drinking.

Get the “ just in case “ medication from the Gp early and the number of the nurse to call to give if needed. Get the Gp to do a video call to see her - simply for paperwork reasons - it’s much simpler if she’s had a video ( or face to face ) consult within 28 days of death for the paperwork. I asked mums Gp to pop in the day she came home from hospital. They were iffy about it but realised I was right and she only had a few days.

Precious time.

You will feel dreadful after it’s all over - just drained empty - expect that - I could hardly move.

My son sat with me the night dad was dying. That was such a special kindness.

I have nothing to add but wish you well, OP

I'm so sorry to hear this OP.

I went through it fairly recently myself and I thought I would have had all the bases covered being a community carer.

• Wet wipes - a few packs - Most care agencies will used these when doing pad changes and sometimes that can be 1/3 a pack in one go.

• Bed sheet - Pads leak, people become sweaty, drinks are split. I'd say a minimum of three and that's with the washing machine on. Same with blankets, easier to layer up and saves having to keep changing the duvet.

Some comfy clothes for you, don't worry what you look like, it's going to feel like the longest two weeks and you want to be comfortable. Look after yourself.

I'd echo everything said above and add a few things I picked up caring for my mum and aunt.
Bed - will she be supplied with a hospital-type bed? My aunt had one that was adjustable for height and position, and the mattress inflated to adjust for comfort. A cousin organised for this to be in place, do I don't immediately know who you ask but the hospital team or patient liaison, I guess.
Also you might want a commode. She may be catheterised but my mum and aunt weren't until their very last days. Check if the personal care staff will be able to change her catheter.
About pain relief, as @Fresh01 said, the District Nurse can come to administer injections but I recall long hours waiting for them in busy times. She may be given liquid morphine you can administer, or a motorised driver thing, which she'd be hooked up to and it works automatically - but ask in advance. (I'm sure someone can explain this better than I.)
Ice chips - either buy crushed ice or smash up cubes - these will be way easier for her when sipping becomes difficult.
Also, I found that coconut oil, perhaps a half teaspoon now and again, worked to lubricate sore mouths and was tasty. (Assuming she likes the taste.)
And if appropriate, you could hire a wheelchair. We found a company who did it by the week, dropped off and collected, and it let a lady who was an avid gardener enjoy a few moments outdoors in her final days. That was special.
Best wishes to you. It will be hard but it's also a privilege and you'll look back in time knowing you did well by her. Xx

I am really sorry op .Firstly make sure you have everything in place , hospital bed , pads .Easy to change nighties .Fitted sheets for the bed, much easier to change and won't wrinkle up underneath which is a pressure sore risk .You may already have them with the care package but wendylettes are a god send .They are basically a bottom sheet then a sheet that goes across and it glides so mil will be able to be moved easily.
I cared for my DF at his end of life slightly easier for me because I am a carer .
Put together a box of all the things you need like toiletries etc so they are all to hand and together.
Don't do it on your own myself and my DS did it with a hospice nurse in twice a week at night to give us a break.
The gp or DN should do you medication that they use towards the end which which help with pain relief and they will keep this somewhere safe it is better to have it there rather than trying to get it in a rush. They may well suggest a syringe driver which administers pain relief and other medication. The DN will do this they come and change the batteries every day and it is kept in a lock covering.
Don't worry to much if your mil appetite is low , keep her mouth and lips hydrated. If she is eating keep an eye on swallowing sometimes people need a thickner in their drinks if there swallowing isn't too good so they don't gulp it too fast.
But above all just talk to her as you would normally and reassure when she needs it .Don't be worried to ring the DN or gp our's where amazing. You sound amazing op your Mil will be in good hands.

If you’re doing personal care, just little bits, bring the bed up to hip height, don’t wreck your back. Agree with don’t feel obliged to push food and drink if they don’t want it, but mouth care is important. Lots and lots of pillows, under knees, arms back and heels can really help comfort, even in an adjustable hospital bed. Have a nice written out list of all the numbers you might need, and fuck the covid rules as someone else said. Anyone your MIL wants to see should come x

Just to add aswell op be prepared for change, people on end of life can vary quite quickly and things can change quickly. It is the one thing my DS said she had wished she had known .

Been through this.

There are lots of practical things to think about and you have had some great tips already. Are you getting a hospital bed? If so, guard rails and slidesheets are a good idea. Anything not ordered for when MIL comes out of hospital can be ordered by your district nurse. Try to get the palliative care nurse to come and see MIL at home relatively soon after she gets out of hospital, when hopefully she will still be well enough to talk to them and express her wishes.

The most important thing though is to remember MIL is a person. Try not to let anyone speak about her as if she can't hear. Tell her carers who she is and mention things she has done in her life, things that are important to her and that she's proud of. Have photos around to show them that show MIL when she was younger and healthier. Include her in conversations. Make sure she understands what's happening and who is in the room with her. When things are quiet, sit with MIL and let her talk and reminisce. Have a notebook handy to write down things she says, both for you to remember and because she may want to ask you to do things for after she's gone. If she mentions things like her will, and her funeral arrangements, take the opportunity to let her talk about these and make sure you understand her wishes and write them down. Don't leave it too late, things can change quickly. If she doesn't want to discuss these things, let it go. Sit with her as much as you can (make sure there is a comfortable chair by the bed for you), read to her and hold her hand.

Take care of yourself and be prepared for things to move faster or slower than you've been told.

From an ambulance perspective please make sure you have a do not resuscitate order in place and easily accessible. I’d like to think that most ambulance staff would use common sense and not attempt resuscitation but there’s always one who won’t allow a peaceful death unless there’s a DNAR in place, so its easier to be prepared.

Many people panic (understandably) in the final phases and we end up being called out, mainly because carers haven’t been adequately prepared for what a dying patient looks like and the sounds they make.

Paramedics can also administer “just in case” meds that have been prescribed by the GP and are available on scene.

I would also echo the mouth care advice, as well as keeping the environment peaceful and calm. Music she enjoys playing quietly is beneficial, especially when alone and not lucid.

Thank you everybody so much. I can see how this information has been offered from your personal experiences and I'm very grateful.

We have some things mentioned in place. We have a hospital bed and mattress. Unfortunately MIL has been bed bound for a while after breaking her hip and not recovering well so commode etc aren't needed. She does not want catheters.

I want to speak to her consultant, who has been very helpful, before she is discharged to get any other helpful info from him. I wrote a long list of her problems to my friend when she asked how things were going this evening and I realised reading it over that MIL really is just... very sick and it might be kinder now to ensure she has a good death at home, where she wants to be. Close family members are still insisting that she might get better, which is breaking my heart really - I think if I plan for the worst, and they hope for the best, between us, we should have it covered.

I love this lady, and I know it's going to be a really difficult time.

Oh my heart goes out to you. Such a difficult and heartbreaking time. I went through this with my father and I agree with all the wonderful advice given above.

Towards the end it really is about keeping her comfortable. So much I agree with above so won’t repeat apart from mouth care and touch. Moisturise her hands lots and talk to her, they say the hearing is last to go. Have songs she lives on a playlist ready to go. My dad stayed with us longer than expected but when the end came it happened quick if that makes sense. I popped that playlist on and lay beside him holding him close, i am so so glad that is how he left us it was calm and loving just how I would want to go myself. All she needs now is love, care and family. Just make sure you look after eachother too x

First of all to you.

This is obviously a difficult time. Be prepared for emotions to run high and things to come to the surface.

As others have said, ignore the Covid roolz. Ditch the masks and give her a hug.
It's fine to have disposable bed pads and baby wipes at this time. Lots of big plastic bags too, not nappy bags as they're far too small.
On this occasion the environment can come second.
Don't be afraid to go for a break while the carers are there. As a carer myself it's easier if you do tbh.
Also some care agencies can provide overnight sits.
Mouth swabs can be a bit unpleasant tasting so ice chips are better IMHO.
Finally, talk to them normally. Hearing is the last sense to go. Don't move them without telling them what you're doing.

Thoughts are with you.

From a Community Palliative Care team perspective - get them to do the referral now. If she is coming home for end of life, it's appropriate now.

Nothing worse than a late referral on a Friday to a family in crisis and walking in to people you have no relationship with who are on their knees and expecting a miracle.

Reading with interest as we are going through the same with my darling fil
The mental torture is the worst
You don’t want to lose them-but you don’t want them to suffer either

I'm so sorry you're dealing with this difficult time OP, I work in palliative care, but I've also done this for a family member at home too.

I would just add with regards to a nightie, and needing to cut them off, if you can get some cheap ones, or ones that you/she don't mind cutting, it's often easier to cut them right up the back before you put them on, so they're a bit like a hospital gown which means you can slip them on/off, we have a stock of nighties we do this to when someone is palliative so we're not having to move them about too much.
Ask the carers/ nurses to show you how to roll someone in the way that's comfortable for both of you, should you need to give personal care when they're not around.
Also echo having bigger bags than nappy bags, open and ready to hand.

Just a note on the suggestion of fitted sheets though, if your aunt has an air flow mattress on the bed (the supplier will be able to tell you, or carers, DN) which is designed to relieve pressure, fitted sheets (or tucking things in) can interfere with it working properly. They can also be quite annoying with the constant hum so TV/radio if she likes it is a good way to mask it.
You can get from the DN, or a chemist may be able to get some, disposable 'kylies' or 'inco sheets' which are basically like the ones you get for a child's bed that you lay over the bottom sheet and the person lays on to catch anything the pad doesn't.

Eyes can get sticky or dry sometimes too, gently wiping with gauze and warm water, or a solution for that, or something like 'visco tears' can help with that.

Finally, don't be afraid to call for help/advice as many times as you need to, and look after yourself too, all the care and nursing staff I dealt with in the personal situation I was in were a fantastic support to me, as well as my relative. You will need support too.
💐

@AnnaMagnani

From a Community Palliative Care team perspective - get them to do the referral now. If she is coming home for end of life, it's appropriate now.

Nothing worse than a late referral on a Friday to a family in crisis and walking in to people you have no relationship with who are on their knees and expecting a miracle.

I too think if they are discharging her with the expectation that she is on a palliative care pathway then a referral now is appropriate abd I would push for that.

Also it is important to get the GP consultation (because as PP said a death certificate cannot he issued if the doctor hasn’t seen the patient within 2 weeks) and a DNAR.

Sending you love and strength.

A few things to know for the days or two before she passed, people can seem to improve massively then deteriorate within 24 hours, I've seen it with multiple patients and my own family - this broke my heart with my own family knowing what it meant but you still get your hopes up that beyond everything they'll get better.

Secondly in the hours prior to death her breathing may seem very funny, long gaps between breathes, different patterns, gasping, odd noises. Again this is all normal but at any point your concerned reach out for advice from palliative care teams, if your struggling to get hold of them 111 can be an option but they may send an ambulance - if they do, again it's no concerns and an ambulance crew will hopefully be able to assist with contacting palliative care teams and such. We (ambulance service) get a lot of calls regarding this when for some reason palliative care can't get out to you, you slip through to gaps or you just don't know what to do 111 can be really good!

I'd reiterate what previous posters say, ensure you have a valid DNAR and if your MIL still has capacity a respect form would be ideal.

Mostly be kind to yourself.