Palliative care at home advice

Thank you. Pretty rough morning.

Doodle I couldn’t just pass by.

Doodle

Thanks for all your good wishes.

Harrigran I’m so sorry you didn’t get the help you needed.
We are waiting for a hospice place. Be nice to have a different view than the hospital curtains. No windows here.
Thank you Mayal

Doodle, so sorry to hear you need palliative care for your DH.
My experience of palliative care last year for my DH was very good. He came home at the beginning of June after being in hospital since January.
I refused to let him go into a care home, l wasn't offered an hospice, solely because the one choice l had was miles away and l don't drive so couldn't be with him.
I live in a 2 bed terraced house, very small. The hospital bed went into the living room looking out onto the garden.
We had carers 4 times a day plus a live in carer. It was much easier than l thought it would be, once we had a routine. All the carers were kind, lovely people. They were gentle and respectfully towards my husband. DH was so pleased to be home even though he was very ill. It enabled my son and granddaughter to come whenever they wanted , to say all they needed to say. We had almost 6 weeks together before he died and this has helped me to cope since he has been gone.
I am so sorry Harrigran that you were denied any help with your DH. What an awful experience.
I will be thinking of you Doodle.

So sorry you met with such a lack of compassion Harrigran.

Bump

I hope you can get help and support to care for your DH, I did not receive any help at all.
I was denied nursing help and was told a hospice place was out of the question. When I was on my knees from exhaustion I asked for a private nursing home place which I was prepared to pay for. I was told I still had to apply through adult social services and be given permission.
I will never forgive the NHS, DH did not deserve to be treated like that.

Doodle xxx

Doodle Such a difficult time for you both. I agree with Whiff the hospice sounds the best option. Sending strength and hugs.

Many thanks for taking the time to respond. The hospice is looking more likely. Dwmxwg nice to know. Thank you

Should read
Doodle thinking of you and your dear husband this morning as always. Sending you love and hugs.

Message withdrawn at poster's request.

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.

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.

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.

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 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 .

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 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

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

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.

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.