Palliative care at home advice

I’m not sure how to respond.
Sadly, do you mean end of life care? X

My son-out-law had this to deal with recently. Carers came in daily to bathe my dying daughter. She had a catheter arrangement for the collection of urine. S-o-l dealt with emptying that when necessary.

He also gave DD all her meds and helped her to eat.

When I was there he asked me to trim her nails.

District nurses were involved when an enema was required because, as s-o-l said, that was "above his pay grade".

These details aside, it was good that the children could see their mum right up to the end.

Best wishes ❤️

Thanks Baggs . I want my DH home too.
Georgesgran it’s called Palliative care here. Might not be end of life but could be

A hospital bed was set up at DD's home for all the above to happen.

When DD became so ill she needed to have her meds injected rather than taking them by mouth (even in liquid form), it was decided that she would be transferred to a hospice. As it happened she died at home the day before she was to be moved.

Doodle I had my Mum here, we had carers who came in to bathe and dress her (when she could be dressed) along with GP every other day and the palliative care nurses when needed (we were given a direct phone number)

We were provided with a special anti-pressure sores mattress along with a chair cushion (when she could sit up), they were in the process of delivering a commode when her Consultant advised us that she needed for her own comfort to go into a hospice.

We took his advice and Mum went into a local hospice for her last days, a family member was able to be with her 24 hours a day, we took it in turns.

So sorry to find yourself in this situation.

Please just double check that they’re enough community teams to ensure he gets the best, consistent ongoing care.

That needs to be a combination of carers and medical staff.

Also check what you need to adapt in your home and if he needs a hospital bed.

I wish you the best x

Definitely get the ball rolling to get him home, being in hospital is not the place to live out your last ... he'll be much more comfortable at home.

I had my DH at home for his last three months. The District nurses were beyond kind. The hospice was very helpful too. DH had three separate stays in the hospice; one nurse listened to me and had a catheter put in. He had about two litres in his near exploding bladder poor thing! I dealt with that, his pills and fentanyl patches; the district nurses did the pump syringe thingy. Until the last week, I washed him and did all the nursing (including the enema). The hospice care at home was beyond reproach too..
I had ZERO help from the supposedly supportive McMillan nurses. In fact. I was more or less told to bug..r off! Not a fan now!

I wish you all the best, and fight for everything that you might need. 🫂

My friend wanted to die at home. She and her partner spoke with Macmillan nurses and the local hospice who provided at home care. Health care workers came in every day to make her comfortable. Nurses came in every day to administer painkillers. The hospice responded to calls if her partner needed help.
However friends and family lifted her in between times and that was difficult for both sides.
A small group of us sat with her to ease the pressure on her partner and that helped.

My husband died at home with palliative care at home provided by a hospice. They arranged a hospital bed with air mattress, commode, meds and were at the end of the phone 24/7. I had carers 4 times a day for the last few weeks and I could ring Marie Curie nurses to arrange an overnight nurse so I could get some sleep when needed. The were had delivered OH a driver pump when he couldn’t take his meds orally but never had the chance to attach it.
It was the hardest thing I’ve ever done but it meant he slipped away peacefully holding my hand while it was just the two of us together.
I’m sorry to hear your husband is ill.

grandMattie

I had my DH at home for his last three months. The District nurses were beyond kind. The hospice was very helpful too. DH had three separate stays in the hospice; one nurse listened to me and had a catheter put in. He had about two litres in his near exploding bladder poor thing! I dealt with that, his pills and fentanyl patches; the district nurses did the pump syringe thingy. Until the last week, I washed him and did all the nursing (including the enema). The hospice care at home was beyond reproach too..
I had ZERO help from the supposedly supportive McMillan nurses. In fact. I was more or less told to bug..r off! Not a fan now!

So sorry to hear that grandMattie. I was going to keep quiet because some people think all nurses and carers are angels but they are not.

My late MIL was in a lovely hospice just a couple of miles from her home. All the family were impressed with it but she insisted she wanted to die at home. She was brought home and had McMillan nurses coming in and carers sleeping over in the spare room.

My SIL lived close by and did all the washing, shopping, admin etc but she was a cancer patient herself. She said the McMillan nurses seemed uninterested and unhelpful. She popped in one evening to find her Mum in bed as usual with all the contents of the carers handbag tipped over her. She thought it was acceptable to clear out her handbag on top of a dying woman!

We are fortunate enough to live in an area with excellent hospice at home care and I volunteer for them on a daily basis. The hospice reckons to care for the whole family, not just the patient, and is there afterwards with support, counselling and groups as needed. Sad that this all has to be provided by donations though.

My mother in law wanted this arrangement for herself. She had a bed supplied by the local hospice and the Macmillan nurses came in daily. At the end they showered her too. The arrangement worked well until she took a fall one night, so for the last 10 days of her life she had to be moved into a nursing home, which she hated.

I’ve no love of MacMillan either, but the Marie Curie Nurses from our local Hospice were great. DH hadn’t been an in-patient when we got the final diagnosis - we were at a routine appointment, so things were put in motion via the Consultant and our GP who was excellent, when MacMillan didn’t take things seriously!!
DH had been on Palliativr Care and meds at home for months and doing very well, planning his fishing diary for the next season. It was the intention/expectation of it continuing for ‘however long’ until, perhaps, something new came onto the market.
Unfortunately there was a new development and DH became bedbound within days of his appointment, as things deteriorated rapidly.
By the time there was talk of a hospital bed, it was too late, but amazing carers came in 3 times a day to help.
I was never offered any overnight help, but within a week DH became unable to take his meds orally, so a driver was set up and he became unresponsive for his last week or so - just sleeping his life away.

grandMattie

I had my DH at home for his last three months. The District nurses were beyond kind. The hospice was very helpful too. DH had three separate stays in the hospice; one nurse listened to me and had a catheter put in. He had about two litres in his near exploding bladder poor thing! I dealt with that, his pills and fentanyl patches; the district nurses did the pump syringe thingy. Until the last week, I washed him and did all the nursing (including the enema). The hospice care at home was beyond reproach too..
I had ZERO help from the supposedly supportive McMillan nurses. In fact. I was more or less told to bug..r off! Not a fan now!

Good God!

Yes I have heard the same several times about MacMillan! As
you say, some nurses are definitely NOT angels, and I am one! As an 'expert patient' I am horrified quite frankly about the level of 'care' people are getting in hospitals.

Hospices though are a completely different matter and are usually excellent places to go.

We have hospice at home here too and, although I have not had experience of it, I have heard excellent reports.

Sending you a huge but very gentle (((hug))) Doodle. GN is here for you.

Doodle, it will differ depending on where you live and what is available. Have you spoken with the palliative care team in the hospital as they will be the best people to advise. Is your husband stable enough to move? lots of love x

Thank you all for your input and kind thoughts. I must admit I am in panic mode at the moment. Just think home will be the best place for DH but wondering about the practicalities of it all.

I imagine that care of the skin, care of the bladder including retention of urine, care of the bowels , hydration, pain relief, and communicating with your patient are skills you or someone else will deliver.

All the above will necessitate a variety of special equipment according to needs. Not to worry, it's easy to learn how to use the equipment.

Doodle, if he is stable enough
do you have a room downstairs that can accommodate a hospital bubble bed? and do you have support to get that room ready?
Are you happy with a nursing team visiting several times a day? as it will be your home too.
I think Georgesgran mentioning a driver is a good suggestion even prior to leaving hospital but it depends on the prognosis as sometimes palliative often can mean someones new baseline 'normal'

Thank you Caleo . I was wondering about bowels and what happened if there was a problem with the catheter. I will do all I can but can’t physically lift him so unsure how I get him from bed to commode or bathroom. Just trying to get to grips with it all

they will use continence pads at home doodle

I’m completely ignorant about all this so thank you so much for your information