Mum end of life care at home - advice?

[Onedayatatimethistime]

Sorry, this might be long. I'm going to sound unemotional too as I'm on full auto pilot right now and trying my best to be pragmatic.
Hi all, dm(86) has been given 2-3 months after cancer has returned and spread. In hospital at the moment but all working to get her back home to us. We (dh and I) are set up practically - bedroom downstairs etc - as we've long known the end would be with us.
I'm off work right now (teacher) and the plan is that dh takes on her care while I'm in work. Again, this has been well talked through with everyone including dm. I'm going to speak to work when I go back about cutting back on everything after school and the possibility of unpaid leave closer to the end / if or when dh can't do it anymore.
We have and will accept lots of help with dd(6) and have limited family who can / will help with mum. Again we'll accept all help offered as im under no illusions of how hard this will be. Not the time of any of us to be martyrs.
Not giving up mum's house until we have to but going to start the process of clearing away as I figure it'll be easier when she's still here for me to come home to.
Going to speak to gp next week to discuss going back on citalopram as I have a history of anxiety and depression (years ago) but feel I'd appreciate the balance and distance they will provide.
Dh is fully on board but lost his own mum to cancer when he /she we're much younger so this will be phenomenally tough for him. We are very good at talking to each other and know how important honest communication will be.
I'm absolutely terrified though. If anyone has been through this I'd really appreciate your advice or experiences. We're practically as prepared as we can be but how do you get through this emotionally?

Hi there, first of all I’d like to say I’m sorry to hear about your mum, no matter who old you are the thought of losing a loved one is difficult.
I’m a community nurse so end of life care is a massive part of my job.
I would ask the hospital to get in touch with your local district nurses, we provide nursing support at the end of life eg any medication when your mum may not be able to swollen her own tablets any more, this includes pain relief.
In the area I work we provide equipment such as a hospital bed, commode, pressure mattress.
We are also a support for yourself and partner, and where I work there are community nurses on 24/7.
Carers would be a great help if your mum would accept them, they can help with personal care, medication and meals if deemed necessary after a assessment, again the ward your mum is in should be able to refer your mum for care if required, manybe not required yet.
I really hope this is of some use to yourself, take one day at a time and sending hugs your way x

I am so sorry. Are you in touch with Macmillan or your local hospice? They Can provide all sorts of help, support and care for you all- including help with funding. 🌺

Including often hospice nursing at home.

Ask the hospital to put you in touch with the right team to support you. My DM had a hospital bed delivered to her home, a commode and carers that came in a few times a day. I know you and your DH are planning on looking after your DM but it might help to have careers for some of it to help you out. Also make sure you liaise with your local GP as my DMs GP came out many times to check up on her and prescribe medication to make her comfortable in her last weeks.

How mobile is your DM at the moment. My DM visited the hospice a few days a week which she loved as she made many friends and they also made sure she was getting all the help (emotional and medical) that she needed. I think macmillian arranged this. Transport was paid for and arranged by the hospice.

for you.

Sorry should have said the hospice was a day one so lots of people would go for the day to socialise, eat and drink as well as providing access to any support services they needed. It meant my DM got out of the house a few times a week when she was too unwell to move much as they made sure she was comfortable when she was with them.

We're practically as prepared as we can be but how do you get through this emotionally?

I just realised my two posts just talked about the practicalities. I think the best thing is to make sure you know and have access to all the support on hand and recognise and be prepared to call in outside help so that your health and well-being doesn't suffer

Thanks so much for the replies everyone. Meeting with the consultant again next week to discuss discharge and a care package. Didn't think of Macmillan - I'll get in touch. We're hoping day nurses / carers will be part of the package and dm will be fine with them helping out. A day hospice wouldn't be possible as we're past that stage already.
Really struggling with family right now. Don't ever see anyone - various reasons - will now have them in our home regularly probably telling us how we should be doing things. Going to have to find that thin line because, realistically and however selfish this may be, we will need some space and can't be everything for everyone else. Im expecting to get inundated for the first week then we'll find out who's in this for the long haul.

With family I think it's a case of being reasonably considerate as everyone handles these things differently whilst also being tough enough to firmly bat away any criticism of how you are managing things.

Fortunately it was only myself and my DB and we tried to keep each other informed of developments but it was very clear we both managed the stress very differently.

My father was terminally ill with cancer when my mother died of an aneurysm entirely unexpectedly. He was in the local cottage hospital to give my mother a break from caring from him and she died in the infirmary twenty miles away. Dad's condition levelled off and we were asked to either find a nursing home or take him home. Fortunately I had a room I could convert on the ground floor for him so he moved here. We are in a good area for health care and within an hour of him arriving here I had OTs, care staff and a representative of the local hospice arrive. As 'end of life care' has kicked in we had a carer to get dad up in the morning and put him to bed at night and some night sitters. This care package was invaluable. He lived for three weeks with me here and then spent two days at the hospice before he died.

Do not underestimate how difficult caring is. Dad was moved
To the hospice when I found I could no longer get a bedpan under him. Physically impossible for one person to do.

I had no experience of a hospice at that time. An amazing place. Do not feel you have let your mother down if that's where she ends her days. Incredible place, incredible care by incredible people.

MacMillan and hospices offer brilliant support for carers too... please check out what is available. And hospices are wonderful places designed to support in living life, however briefly, as well as possible.

Sorry you are facing this OP. Lost my mum last month. Home for three weeks post diagnosis. (We'd been told small number of months.) We found it hard to keep pace with the deterioration. Our district nurse team were (apart from at the bitter end) awful and not at all proactive. All the help we did get came via the hospice and mum's local authority adult care, who got a care package in place within 36 hours and very sensibly advised us to go straight to three visits a day.

We had wrangling over supply of hospital bed. Local NHS Commissioning initially refused to fund so we had a horrible few days: fortunately carers went above and beyond in helping her from a ridiculously low bed.

You should be able to get a blue badge automatically.

The hospice helped us all understand symptoms, next stages, tips for easing discomfort etc and provided amazing moral support. Can't thank them enough. They also provided a walking frame and commode, and would have sent a rise and recline chair if there had been time. We had a Marie Curie nurse overnight the night before she was going into the hospice at the end. I didn't really sleep, but it was reassuring to have someone there who knew the signs and would have let us know if the end was imminent.

It's exhausting no matter how much support you have. I am finding I just want to be on my own at the moment. Partly the grief I know, but also just 'peopled out' from carers, nurses, doctors, physio etc over that intense time.

Thanks to all who suggested contacting Macmillan. Spoke to them this morning and they were amazing. I now have a list of questions to ask when I have the meeting about dm being discharged and feel reassured that we won't be left to cope alone. Small steps and thank you all again x

When OH's uncle was near the end his family were supported by Hospice At Home as well as Macmillan.

Don't be afraid of using a hospice/care home is my honest answer. I worked in end of life care as a home carer, and it's only made me very determined NOT to care for either of my parents at home.

The end stage is really upsetting and frightening, and I never got used to it. As you have a young child, I wouldn't put them through it.

I'm really sorry about your DM

We had Hospice at Home for my Dad. They were superb and far more helpful than Macmillan in our case. We were also fortunate to have fantastic support from the GP practice and District nurses.

We (dh & I) have discussed a hospice at the very end. Realistically it's about who / where will provide the best care and right at the end I don't think that will be us. I'm very aware of the impact this will have on my dd and my dh has told me that if I am incapable of making the right choices he will step in. My dd is the most important person to my dm so that's respecting her wishes too. Like I said it's one step and day at a time. We have to be referred to a hospice but we have 2 of the best that cover our area (Merseyside).
I appreciate all of your support and candar so much x

One thing i would say is to make sure there are 'just in case' medications in place, so extra pain relief and something for agitation, as having to get them prescribed when they are actually required is a pain as it often happens when the normal gp is not available and if they are there already it makes it a smoother process to have them administered

Be prepared for some potentially upsetting changes in your dm's personality. I'm not saying that will definitely happen, but it is one aspect Dh in particular and I were unprepared for and really struggled with.

There were days when she was very down and reflecting on her life in a very negative way - that was hard for Dh to take, as he has a wonderful childhood with her and had somewhat idealised his parent's marriage.

There were also days when she was hugely, hugely angry and would lash out at anyone and anything. Days like that you really couldn't do right for doing wrong.

Towards the end, she developed dementia like symptoms as a side effect of treatment and could be pretty nasty. Of course, this wasn't her, but the illness. Still very upsetting.

Dmil was a wonderful wonderful woman, but she was also a human being and knowing you are going to die must be utterly terrifying.

If possible, make sure your dm has someone outside the family that she can unburden to - macmillan shoukd be able to help or sign post with this.

And also make sure both you and Dh have someone outside the situation to talk to - sometimes you need to offload and rant etc. It's easier to do that with someone who isn't emotionally involved and struggling with their own feelings.

To add, I'm very sorry you're going through this.