Palliative care at home advice

I had palliative care nurses and carers for my husband in the last few weeks.I have to say they were amazing. The carers became like family we had a rotation of about 6 nurses about 3-4 times a day.
The palliative care nurses came in every day then 2-3 times a day when more meds were needed. They were always at the end of the phone if I needed advice.
The only problem my area was short of care nurses to stay during the night, as the weeks went on I was physically and mentally exhausted, I could have paid for an agency nurse to stay at night but didn’t want to leave him with a stranger at night.
One daycare nurse swopped her day shift for a night shift so I could sleep and another came back on her day off so I could sleep during a day for a few hours. They were absolute angels and I was so grateful.
Two nurses came to see me the day after husband died and told me it was a privilege to care for him. Another sent me flowers and a card. Considering they were paid minimum wage they went above and beyond was was expected.
I do appreciate that not everyone has the same experience so I feel very lucky.

Doodle, there is a technique that can be taught for one nurse to lift a quite heavy patient out of bed on to the commode at the side of the bed. I was a trained nurse but was never taught this. I have watched a modern staff nurse , a quite slender girl, doing it.
Much will depend on how mobile he is, the strength of his legs and shoulders. There are wheel chairs that can be wheeled under the shower in a wet room, if you have one. Do please ask the OTs about equipment and how to use it I have found them very helpful.

Maybe you will be taught a useful technique or three. I am sure the OTs will supply some really useful equippment.

This thread has shown GN at its best. X

Thank you all so much for your kind thoughts and information. It’s all really helpful. I’m hoping it will be Hospice at home grannyactivist as they work in our area.

Eighteen months ago I nursed a dying man that my husband and I befriended twenty five years ago. He had mental health issues and was also autistic and when he knew he had terminal cancer he begged me to look after him when the time came because he wanted to die in his own home.

I did take care of him (with a little help from my husband) until I literally couldn’t manage to nurse him alone any more. With his permission I liaised with his family, G.P. and the Occupational Therapist and got all sorts of aids delivered, but by then he was so far gone only the hospital bed and air mattress were really useful. Three weeks or so before he died he finally agreed I could have the Hospice at Home Team in to help me. They came twice a day and were wonderful, helping me to keep him clean and providing nursing care and treatments. Twice he was very unco-operative, refusing treatment, and an ambulance was called by the nurse, but both times I was able to persuade him to allow the nurse and I to do what was necessary and the ambulances were sent away. He eventually died as he had wanted to, in his own home.

I cannot praise the Hospice at Home Team enough. They were so kind to him under very trying circumstances and took the time to try and understand him and his unusual lifestyle. Not a single one of the nurses was precious about her role, they all supported my involvement and were hugely understanding about the toll it was taking on me. I couldn’t have got through the last few days without them.

As someone else said, please apply for attendance allowance and, also, give yourself down time.

I'm not familiar with first- hand practicalities, as so many here are with such good advice, however I know my aunt looked after her DH at home for a few yrs with help from carers 4 times a day and later additional nurses.

Bed with different position and special mattress provided .
Hoist to move him from chair to bed and commode.
Carers bathed him and changed bed sheets . Help with provision of pads and other things. As others have said , phone number for problems with catheter .

At weekends my uncle felt cheered chatting to visitors .
I know my aunt was happy that he was at home at the end, though there were some admissions to hospital at times for various issues.

Palliative care is not necessarily end of life care at all and so many different circumstances.

Doodle my heart goes out to you and I send my love and prayers. X

Doodle

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

I think we are all ignorant about these things Doodle until we need them.

I believe the various teams involved will have considerable experience of all the problems you envisage. You will not be expected to lift your DH. Catheters do slip out, but you will be given a telephone number and people to contact should you encounter any such problems. Hopefully, your DH's doctor will visit, too.

It will all fall into place within a couple of days, try not to panic. And take a few moments for yourself, to just breathe and talk with family.

My best friend - late 70s - still appreciated an iPad resting on one of those 'holders' on the bed occasionally, if only for a few brief minutes - not for communicating, but just to scroll through some lovely photo's of flowers and butterflies that we found for her.

Hugs to you. x

💐 Doode, I’ve never done palliative care, I wish I had for my dh. It was horrible leaving him in the Hospice. You will have practical help but you can share the love and companionship you have for each other, that’s worth more than gold.

My late DH wanted to be at home for his last weeks. I am happy to say that the MacMillan nurses were wonderful. They are not “hands on nurses” their role is to coordinate and organise care and treatment. The day DH came home from hospital the MacMillan nurse visited, and realised immediately a hospital bed was needed ASAP and she contacted the GP to reorganise his pain management. She also came with forms for Attendance allowance which is not means tested , make sure you apply . They visited or called me every day and I had their 24 hour phone number .The lovely community nurses came 3-4 times a day and at night if I called them . So it’s doable but you will need other support maybe from family and friends with things like meals and shopping . Marie Curie will do night shifts a couple of times a week. My DH died 2 weeks after he came home from hospital, peacefully, pain free with me at his side . Not sure how long I could have kept it going though as it is exhausting and I think a hospice would have been an alternative option.

doodle I send my kindness regards.

The only experience I’ve had was mum who I nursed at home until her death. I can’t give you any more information than you’ve already received but I wish you strength in your journey with your husband.

All the equipment was supplied by our local authority.
The best thing was the bed which the DGC used to go up and down when DGP was in his reclining chair. - also provided
There were bath and toilet aids too but he couldn't really use them comfortably.
For us it was infinitely better than hospital.
Community nurses came frequently and carers came to wash and bathe him with lightening speed.

However DS moved in with us for those last weeks so I wasn't on my own.
We dealt with all the non medical stuff such as food and entertainment. We moved a smart TV into the room and were able to show his favourite films.

A bit of cleaning and washing but because there was no need to trek to the hospital I didn't get exhausted.

I look back on it as a very positive time.

Sending you both my love.

I was immediately contacted by an alarm company (via the GP, so above board) who came and installed their system.
I really didn’t feel it necessary, until DH fell out of bed trying to use the commode! I think it was
£16 for 2 weeks, but beyond price for their help that morning.

Doodle the carers would use incontinence nappies when DH couldn’t stand and changed them at each visit, bed bathing him and changing bed and pjs if necessary, he soon got over his embarrassment and would laugh and joke with the carers every time they came.

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

they will use continence pads at home doodle

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

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'

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.

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.

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

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.

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.

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.

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.