Palliative care at home advice

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 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.

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.

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.

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.

💐 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.

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

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

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

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.

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.

This thread has shown GN at its best. X

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.

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.

Thank you all so much for your input. It may be that DH is going to a hospice if they can find a place for him.

DM already had carers coming in 4 times a day. We were given a hospital bed. We had the GP, district nurses and palliative care team on speed dial. We were given and end of life package on prescription by the GP and we also had fentanyl. We didn’t use any of this. We paid for a carer to sit with her over night for a few nights and then the palliative care team did the overnight shift. They also looked after us. You need to make sure the GP comes in occasionally so they can sign the death certificate. Fortunately our GP popped in a few days before DM died.

Doodle whatever is for the best for both of you with least stress xxx - thinking of you xxx

We arranged palliative care for my mother. It was a ‘Hospice at home’ and was utterly marvellous. Besides their wonderful care for her they were caring for us, her children also. They were with us when she died, as we had a night nurse by then., and the next day a lovely lady came to help. Made tea, sat and talked. I cannot praise them too much.

Doodle, I am a hospice nurse. There is no right or wrong decision, and I am sure you will make the right choice for you and your DH.
Make sure you are made aware of exactly what support to expect if you opt for having DH at home, there should be a palliative care nurse at the hospital who will have all that information. If a hospice bed is made available you may find that a burden has been lifted for both of you. I am naturally biased but in my experience there is no better care. He will have 24/7 symptom control, nursing support and the umbrella of care will include you and other family members. The team will include chaplaincy support and social workers who can guide you with any practical/financial concerns.
This is an exhausting time for you mentally and physically so accept all the help you are offered.
Gransnet is such a supportive place to be, we are all holding your hand on this path

Doodle

A hospice was the best and safest place for my Dad. He was there such a short time but the care for him and our family was wonderful in every way. Please accept any support you’re offered. X

Doodle I looked after my husband by myself until he died. We only had a couple of pieces of equipment because of my disability already had our house adapted for my needs. From when my husband was terminal until he died 2004 was just under 4 months .

I had my mom live with me the last 18 months of her life she had cancer and dementia. I looked after her on my own . We did have equipment I needed . But didn't have carers as I knew I could look after her better myself. Dementia killed my mom 4 months before her body died and mom became violent but I couldn't put her into a home . But it wasn't my mom and it was fear that's causes the violence. Mom didn't know who she was ,where or who I was she thought I was her mom . She would tell me she loved me and I would say I am your daughter and she would say I know mom. Dementia killed everything in my mom but before the violence she insisted on wearing a pad it was only like a thick tena lady but Sainsbury's own brand. But for all dementia took from her she always told me when she needed the commode and never wet or soiled herself. I am proud of the fact my mom didn't have a sore on her body as I looked after her skin. My mom went down to below 6st and it was still hard for me to lift her.

I know how much you want your husband home Doodle but you are not well enough to cope and going into a hospice will be better for your husband and you. Hospices aren't doom and gloom places and he will be well cared for but you will beable to spend as much time as you want with him . I have had friends that slept in the same room as there husband. You must look after yourself. I didn't realise how much looking after my husband,parents and mother in law cost my healthwise until mom was the last to die in 2017.

Doodle even people who are 100% fit and healthy find it hard to do palliative care even with help . But for all it cost me healthwise I would do it all again . But I was younger 45 when my husband died and 59 when mom died.

You and your husband have both been fighting physical health problems which has effected your mental health for a long time and it's not long ago you had your pacemaker fitted. And you haven't had a minute since to recover properly. As much as you both want your husband home you both know you couldn't cope even with help. Your husband hates being in hospital but a hospice is more like a home . You sons must be very worried about you both especially you as they may not say it but can see how much you are suffering. If your husband can get into a hospice it will be better for the whole family. And you will have the support from the hospice staff but also family members of others in the hospice. Friends have said they become eachothers support group .

My brother in law had palliative care at home. He was lucky enough to get a hospital bed and nursing at home. There’s such a thing as bringing the hospital into the home to support end of life.
The nurses came, set up a drip using a coat hanger to hang on the wardrobe. He had such a peaceful end. Thanks to the nhs.

Doodle I have no experience to offer, but I’m thinking of you both, your struggles have been and are immense, I’m hoping you both find some respite and support.

Doodle my heart goes out to you I was a retired service manager working for a charity so I knew what my brother in law needed to be comfortable at home. I bought him sheepskin heal pads, for comfort and a couple of pink kyles off Amazon for continance issues. His wife ( my sister in law) was in her 70’s and she coped extremely well having her husband being nursed at home and like I said he died peacefully at home.

Hospital discharge will arrange hospital bed if needed and care package will come with him for 6 weeks. Make sure you have the Attendance Allowance (sign under special rules will save you a lot of form filling) After 6 weeks he will be assessed again. Red Cross good for lending wheelchairs and commodes if needed.