I am looking for some advice regarding my dad. He is end of life, chooses to be at home. I have moved in with him to care for him, have been here 4 months. We have a carer come in and help with intimate things (albeit Dad now doesnt want to be washed).
He has always said he does not want to go back into hospital and that is on his DNAR and Respect forms. I have LPA so he also has me as a voice to uphold that. He still has mental capacity.
He has deteriorated over the past week and I feel we need to contact the hospice and get some advice. Dad keeps telling me he doesnt want anyone involved, that Im not to call anyone and that he is fine. His symptoms are up and down, there hasnt been an incident that I feel I have needed to call paramedics, more things that seem bad and then calm down again. So I believe we are at a stage that maybe morphine might help with his breathing etc but he says no. Today we had another chat about it and he said he is scared of what is to come, I suggested I talk to the hospice nurses and they can come and have a chat with us, again he said no. He said we’d talk about it tomorrow.
I am worried I might get in trouble for not overriding his decision…what am I meant to do?
This is too much for you to deal with on your own. You need help.
Do you know how much longer dad has to live?
Have you considered which funeral director you will use?
I know these are all difficult questions, I’ve now supported 6 family members at the end of their lives, don’t put off anything.
If dad wants you to stay with him, then he needs to do everything possible to cooperate with you.
He doesn’t say what happens now, you do!
You need to keep yourself well throughout this, so you need help to manage the house, so you have time to care for dad, and rest.
Does he receive Attendance Allowance?
Do you have Power of Attorney?
Dad will be increasingly frail, and in pain. The pain can be controlled by a morphine driver, a gadget in his neck which delivers a measured dose of morphine. My dad had one when he was in the hospice, it was very effective. I’m not sure if they can be used on patients at home. Ask the hospice staff you are dealing with.
If he is definitely “end of life” then the GP should already have arranged FAST TRACK NHS Continuing Healthcare - the support dad needs, either at home, or in a nursing home. This should be arranged and provided within 48 hours. If the GP won’t do this, contact the Practice Manager, there is so much ignorance about the rules.
Have the surgery drawn up an “End of LIfe” plan for dad?
Another difficult suggestion from me. Google “Signs of Dying”.
I did this, with tears rolling down my cheeks, when my mum was very ill, in fact she lived for another 2 years.
Don’t be afraid to do this, it will explain how the body very slowly shuts down, simple well written articles from people who have a lot of experience from the hospice movement.
For example, someone doesn’t die because they are not eating enough nutritious food, but the body knows how compromised the main organs are, and what the body is able to cope with.
Thank you both. I think I will have to do it tomorrow, but I can say that I need the support, that is a very good idea.
Yes I have looked up the signs of dying. You kindly responded to another post I put about my dad and from that I looked up a lot of things you recommended which were so very helpful. He has spoken to someone who isnt in the room on one occasion and had ‘invisible crumbs’ on one occasion. He is now down to eating 2 weetabix a day.
The consultant said he suspected Dad had under 3 months which was end Oct. I have never heard of an ‘End of Life’ plan, I have just left it all to the community nurses and hospice nurses no-one has mentioned anything else. And I find the GP so non person centered. Whereas the other nurses do seem to be a little more person centered.
Funeral already paid for and will sorted, I also have both LPAs, so we are quite organised in those respects. Ive applied for attendance allowance but that seems to take forever, not high on my list of concerns at the min.
Dad isnt in pain but he is having difficulty breathing even on the oxygen. I think morphine driver isnt far off and that is why I think we need advice. He wants to take 2 sleepers each night and they are meaning he sleeps well over night at the moment so I am not doing anything during the night really. There have been a couple of occasions Ive gone down every few hours because Im worried about his breathing, then he is ok again the next day.
I am very disappointed with the community nurses and hospice, I naively thought they would be checking in with him every now and then. Thank god I have kind of worked in end of life and have a vague idea about some of it. Carers UK have been far more helpful to me than any other organisation!
Good to hear so much is arranged well already.
With regard to Attendance Allowance, they also have a special “Fast Track” scheme, but don’t advertise it very well.
The Fast Track CHC needs to be done by the GP asap.
If you can afford it, ask the GP to recommend a private counsellor to support you through the next few weeks, and the aftermath which will follow. I found it really helpful.
The GP will only do Fast Track CHC if people ask. I printed the forms off, completed as much as I could (personal details, addresses, DOB etc) and took them in to the surgery myself. I also marked them urgent and told the receptionist I hoped she could pass it to the doctor urgently. He actually knew nothing about CHC Fast Track so I put him straight when he rang me and he sent the forms off and it was sorted within the week.
Also it is not just for end of life but if there is a sudden deterioration in the person.
Dionne I am sorry that some of the staff/nurses involved have not been very helpful. I don’t know what’s wrong with them but I have lost my SIL recently and her family were not impressed with the district nurses or nurses from the surgery. another friend just lost her Mum and she was also very concerned about the care her Mum got, who died at home in a lot of pain.
Penny, that is so sad.
When mum was nearing the end, and the GP rang me to say that the current amount of pain relief wasn’t working, I told her I had Health and Welfare POA, my instructions were very clear and simple. Pain relief must be top priority, regardless of the consequences. She passed away peacefully 2 days later.
I’ve already sorted out my own POA for my son, and ordered him to do the same for me in similar circumstances.
One advantage of being in a nursing home at the end is that there is always a qualified nurse on duty to administer pain relief, unlike at home.
This is all too much on your own. Know one such deal alone in these circumstance. I have seen many home end of life situations. And believe me you do need assistance. It’s OK for Dad to have his wishes. But not OK for you to not have your own needs met. People can come to the home to support you - Dad doesn’t have to hear or see them. Please don’t try to be strong it’s not necessary.
Same with my Mum Bowlingbun. She was in no pain whatsoever and just faded away. The staff knew I had POA and Mum had done an end of life care plan with them not long after she moved there and was well enough to discuss it properly. I know myself and the home 100% carried out her wishes.
My SIL who died recently was very disappointed with the care she got while she was very poorly at home. Anything she asked for the district nurse said that was up to the nurse at the surgery and when she asked her she said it was up to the district nurse! It was constant bickering which was no help to my SIL.A couple of times the surgery insisted she was taken there rather than a GP visiting but it took my BIL 45 minutes to get her out of the front door and into the car and absolutely exhausted her. The nurses in the hospital were good though.
My dad had prostate cancer. When the GP wouldn’t tell me how long he had left, I rang the Macmillan helpline. They asked me his symptoms, and told me he had about 6 months left. They were 2 weeks out. I then rang the GP again, he knew mum was very disabled and would be my responsibility after dad died. He said he could only talk generally, told me dad would manage for a while, but one day would take to his bed and then not have the strength to get up again. Things would then “progress” quickly. He spent the last two weeks in the hospice. For a long time dad had been a patient at the hospice day hospital, so they already knew his decline. The care they gave dad was wonderful, whatever he needed was given immediately, and they are specialists in palliative care.
Do not make promises that you cannot keep.
Tell him you will care for him “as long as possible” but don’t rule out hospice admission at the end.
The more help you get at home the longer you will be able to support him.
Thank you so much for your concern. Sorry I didnt reply sooner, I called the hospice and broke down on NYE and they immediately reacted. We had the GP out NYE who said they would normally blue light dad into hospital but dad wants to be at home. So now they have increased the oxygen prescription, given him some other meds and its down to me and him to play about with the meds/oxygen and see how his symptoms are. She said she felt he had days to live. However, today he is quite sprightly again. What a rollercoaster! Do hospices still take people in at end of life?
Dad does have a carer, we have been allocated 3 hrs a day. the carer comes in 3 times a day at the moment. He doesnt need much at the moment so the carer spends probably 1hr in total as he rushes in does the minimum and leaves. There isnt much else to give the carer. Although I dont think it is going to be long before dad cant get on the comode next to the bed, he found that difficult for the first time the other night. Once that happens I can increase the carer to 4 x a day. I am able to sleep through the night, which I know is a blessing. I am due to go back to work tomorrow (work from home) and am dreading it. I coping pretty well…or seem to be on the surface but have been having headaches more regularly over the past 2 weeks. Currently having counselling through the Carers Support (such a blessing).
I dont think there is an option for over night care unless he goes into a home, albeit at present he doesnt need overnight care.
I dont know what that means. He has a carer who comes in, gives basic meds (doesnt get involved with oxygen or morphine etc), breakfast, he washes dad 2-3 x week and shaves him once a month. Changes his commode, unless I have already had to do that.
So there isnt much for the carer to do. When I am working the carer does dads lunch, if I remember to prepare it. It would be helpful if the carer sat and chatted to dad but dad struggles to understand his accent so that is difficult. The carer does what I tell them to do, I could do with someone who is able to make decisions and take some of the responsibility with me having to think about what needs to come next but I guess that is nursing home.
I guess its more the fact that I am not getting any respite, there arent any family members to talk about this stuff to who take an active role in his care i.e., what to do about the oxygen, someone to stay with him so I can go back to my house in wales for a night or two. That kind of thing.
I had a call from the hospice today and a nurse is coming out, so hopefully we will get some support. Ideally they would suggest taking him in for respite (if they even do that anymore?) and I could convince him to go and get a break. I do feel better since Friday that they hospice (or any medical team) are showing any interest in Dad.
Thank you for your responses, I really do appreciate it.
Please read the Continuing Healthcare Framework. (My arthritis is horrible today!)
It would allow you to have nursing care at home, rather than a nursing home, and that would be someone to deal with oxygen, morphine etc.
Oh I see, I started to read those guidelines and became overwhelmed so havent done that completely. I am managing the oxygen and morphine at the moment. Ill read it thoroughly thanks.
if the reading is too overwhelming alongside the caring and juggling work then ask the hospice nurse about "fast track continuing health care’ they should be able to advise or refer you to someone else from the hospice who can advise. If not then contact the Carer’s Uk helpline
Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (> advice@carersuk.org> )
