"Conversations about life expectancy and death are difficult. You may need to discuss things like care, finances and wills. Sorting these things out when you feel well enough to do so can help give you and your loved ones peace of mind. Take the first steps with our short guide to talking about death and dying."
I have sorted out my finaces, made a will and paid for my funeral and organised it as best I can. Now I am stuck on the bit about organising end of life care as I live alone and my son, who is next of kin' lives in another countyb and is too ill most days to travel to see me. How do other people get to organise things like this?
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GosportNancy29
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It's actually exactly what I meant. I just don't want my son to get a call saying I had been found at home weeks after I died because no-one had dropped by,. I provided palliative and end of care recently for my best friend and I'm glad he trusted me to be there to do this. If there is such a thing as a good death..his passing was that x
Can you get an alarm to wear around your neck, so that, if you have a fall you can call for help instead of being left on the floor etc.? I believe there is a service where if they don't hear from you in a certain time they will check on you.
We live in a retirement bungalow where we have an emergency pull cord system in all rooms. Which is better than nothing and a warden who works 5 mornings a week who checks on us via the pull cord intercom system once a week.. Obviously it is a charged service we pay for. Brian
I guess that is better than nothing. I don't know much about the individual alarms as I don't live on my own. My sister in law does and she fell one day and hurt her knee badly, and was nowhere near the phone. She had to drag herself across the floor, causing more damage to her leg. She has one of these alarms now. It does require a subscription. However, these alarms are no use if you pass out and can't press the button.
When I press the alarm, the person at the other end speaks through a speaker in another room. If they don't get a response from me then the call my mobile which I don't always remember to have with me. If I don't answer the phone then they have to call an ambulance as I don't have any emergency contacts as I don't know anyone nearby and my next of kin is in another county.
I honestly don't know what I am paying a subscription for as I have no-one to bring in things if I were admited to hospital and no-one supporting me at home.
Thanks for your reply. My best friend died last November and we took care of each other. I provided his palliate and end of life care and we held hands as he died sitting beside me. I don't have any family that will take care of me when things get a bit tricky but I spoke to my Nurse Practitioner today and he said he would drop by with w Respet form
As we get to towards the end of our lives, especially if we have a condition that may perhaps shorten it, I believe we should define the conditions under which we would or would not allow treatment to sustain our continued existence in the event aspects of our medical condition deteriorate to the point where we may not want to continue, and importantly at the time we may not be able to communicate our wishes to those who are responsible for our care. I made an Advance Decision document several years ago having given some thought to what I wanted and discussed it with my family, and then had it witnessed and signed off by my GP. You may wish to do the same. There are several Advance Decision pro forma documents available on the internet and there is no reason why you can't use them as is or modify them to reflect your own wishes.
I just spoke to a nurse practitioner today who said that when I do this through the NHS the form goes on my medical record so if a paramedic turns up and I am unable to tell them what I want, the can look it up.
Indeed the form does go on your medical records and that is why you must be very prescriptive and careful in describing what you require should you decide to go ahead. Be very careful in the wording not to allow any medical staff to interpret what you have stipulated as a catch-all 'do not resuscitate' which may not actually apply.
Hi you, this is the very subject I have just been reading about. I have the booklet "Family and Friends Resource" given to me by my heart failure team. It came along with the Heart Failure Manual as I wanted to know what exercises I am allowed to do since being diagnosed with heart failure.
Reading the resource book made me more awars of how my family and friends are maybe feeling. I honestly believe that they have been more through the trauma of my heart attacks, triple bypass operation and now the heart failure diagnosis.
If you can get to read this booklet there is a huge amount of information. I have arranged for my daughter to visit so we can have this conversation.
I haven't got a heart failure team so don't have access to any of their support. What I have is a booklet about heart failure from The British Heart Foundation that was given to my flatmate when he was in hospital with COPD.
The British Heart Foundation sent me a copy of Living With Heart Failure and it was in that book that I read about planning for my end of life plan. I'm still waiting for someone to bring round the paperwork for me to fill in
Hello, I'm not sure just which paperwork you refer to. The booklet I have has a section in the back to write all the details down. These include, Cardiologist, Heart Failure team, Gov Uk for benefits. Actually whoever you need your family to know about
A guide for family and friends to help them support a person with heart failure as as manage their own health and well being.
It is by reacHF Rehabilitation Enablement in Chronic heart failure
The paperwork is the RESPECT form that when filled in, goes on my NHS record. This information is needed so that if I call Careline and they send an ambulance, the NHS staff know what to do if I am unable to speak with them due to cognitive issues or if I am unconscious.
I don't have any friends and family that I see regularly. Up until 2013, I lived in Hampshire and then moved to Sussex to take care of a friend who had high support needs. I live alone and don't have a carer. My family can't travel to Sussex. My son visits maybe twice a year as he is too ill to travel most of the time and no one else visits apart from health professionals as I am also housebound.
You may have seen the BHF guidance? It was useful for my mother as we had not thought about her ICD in discussing her end of life wishes. bhf.org.uk/informationsuppo...
Like you my mother lived alone and I live some distance away.
Her friends and neighbours were no longer able to look in on her. She was fortunate and could afford to have a carer come in each day for a couple of hours as well as district nurses a couple of times a week. Although I phoned daily, it took the stress off me knowing there was someone seeing her regularly.
My sister did an excellent job organising her own end of life care and funeral arrangements and explain them to her family. She managed to get a hospice place for her last couple of weeks who provided excellent care.
I have a personal assistant who comes in once a week for a couple of hours but I c an't afford any other help. I don't have any nurses coming here regularly. The nurse practitioner drops by once every couple of months or so. I am on several waiting lists for residential accommodation but I could wait more than 10 years as my local authority hasn't agreed on any other housing needs aother than I am over 55 years of age
Why aren't your council taking into consideration your medical needs Have you sent them this info and have you claimed Pip if not do so but do not do it yourself get help from a experts who knows how do fill it in it is very tricky and copy and send as many Specialists letters that are helpful Be very honest about length of time to do things if longer than when you were well how exhausted you ate after doing it If you are unsafe dizziness balance etc for every questioneven the embarrassing ones to do with toilet needs . This benefit is not means tested so no questions about your finances
I already get PIP but I don't have any specialist reports to confirm my health issues. In don't get any extra benefits to cover mobility issues. I haven't appealed as the last time this happened I lost the whole award. ESA have put me in the care group but my local council don't support me in a move because the Adult Social Care report said I don't need support.
I think you need to contact your MP where I live inthe north east our local MP has a worker who can help with these issues she doesthings like helping you find the right way forward with claims You sound as if Adult Social Care has completely m8sunderstood your needs I hope you can get this sorted out as it would give you a much better chance of getting somewhere to live with support and people to make friends with
I already tried my MP and she got back to me saying that she had contacted Adult Social Care and they said they would get in touch. They were in touch straight away and decided I don't need support.
I just sit here and hope I win enough in the lotto to buy a place and pat for my own staff
In fact when I was first diagnosed with heart failure, and my heart function was 43% I thought I was dying then and that was 20yrs ago. My cardiologist filled out a care plan form with me at that time, which as never been updated but I’ve put everything in place like you. The only difference is I have my children, most of them nearby, and I keep them in the loop. Even when they say stop being morbid and dramatic mum, I continue to remind them of my wishes when I die. I have a folder so they can have easy access to everything.
My heart function was 39% back in 2018 but I have no idea what it is now as my GP took me off cardiac care when I reacted badly to a med he prescribed. This means no more echocardiograms and no cardiologist.
I have had a video call with my son who lives in another county and we are currently working towards him staying at mine for a few days in November. I'm hoping more things will get sorted by then
You should take him to your Gp when you go to discuss it. I took my daughter today for my cardiologist appointment and I noticed the difference. I was more confident with my questions and he was looking me in the face when talking to me and not on the computer.
I haven't been to see my GP in years so my son won't be seeing him any time soon lol My son is very unwell a lot of the time so doesn't get to see me more than twice a year. Added to that, my GP doesn't do face to face appointments, just telephone appointments.
That’s terrible. It’s become a lottery these days who gets to see their Gp and who don’t. I moved to my surgery 8 yrs ago which is a couple of long bus rides from where I live, after having enough of the one 6 doors away from me. It was the best decision I ever made. But I know many haven’t even got that luxury of changing.
I check the local surgeries regularly to see who is taking people outside of their local area but no luck so far. When I moved to this area in 2013, the system didn't allow fo patients to connect with a surgury out of their area. Now it has changed and GPs can be more flexible but it is still at the discretion of individual GPs
I have applied on-line to change my GP practice that has better resources than mine. This one has a memory clinic I need to wait now to see if I have been accepted.
No luck there. The person I spoke to didn't know that GPs could accept people from outside of their catchment area and that new rule came in years ago, Anyway, I have been turned down and was advised to apply to the practice I am trying to move away from.
Is that the only other one near you. See if you can get that evidence online and show it to them if they mention catchment area. That’s all I can suggest. You can even find that evidence and show it to the surgery that refused you.
I really don't want to see a GP at a surgery where the staff are years out of date with things like this. It took me less than 2 minutes to find this information. I'll shop around and try someone who is up to date
Good morning GosportNancy29. I am just going through this scenario myself. I have made a will and my only living close family is my brother who lives in Spain. So I have been asked if I know of someone who could have power of attorney for my financial affairs and also someone else for my health care decisions. I only have 1 very good friend I completely trust and I don't think it's right that they would be expected to make decisions about my health care or end of life care. That should be for the medical profession. Hope you find answers. Brian
I only have my son. His in his early 40s and has serious health issues himself. He lives in Hampshire (I'm in Sussex) and rarelly visits as he is rarely well enough to trave. We had this discussion years ago when he offered to be with me for my end of life care and I suggested instead, that he choose my care home.
Bingo88 . You should read my earlier post above about the Advance Decision which is a formal document recognised by the medical profession and within which you have defined the circumstances under which you want life sustaining care to continue, or not, should your circumstances have deteriorated to the point where you may or may not wish to continue being supported. It is something you have decided prior to the event and takes the burden of responsibility away from others, and under some circumstances may override what the medical professionals believe is ' right' for you, which may be contrary to what you want.
I have seen one of these directives as my flatmate had one. I was the one who provided his palliative and end-of-life care. Even with the directive, it didn't stop the ambulance controller from threatening me with legal action if I tried to stop the paramedics from performing CPR on Billy more than an hour after he died. When the paramedics arrived they checked Billy over and were really kind and respectful of his wishes.
The bit about end of life care is open to some interpretation.I wonder if they mean the sort of thing like staying in your home with carers coming in, going into care, and if so, what kind.
I know some friends of mine took time to look at residential homes for the mum, basically an "in case" plan, which turned out to be needed as the daughter lost her sight, and wasn't allowed to continue to care for her mum. They found a brilliant one, fairly close, and her mum was very happy there.
You don't say anything about your age, but I wonder if you could talk to Age UK to see if they can offer any advice.
I'm in my early 70s and also live alone. It can get complicated, can't it?
I am on several retire ment home waiting lists but I only meet the age criteria as my local authority is not playing ball. I have been trying to get a housing needs assesment sorted since December last year but each person I contact passes me on to someone else. Without additional needs the waiting lists are more than 10 years long.
You are in a difficult situation. Age UK can advocate for you, and have you contacted Adult Social Services for a needs assessment? They might be able to add their voice to yours for a housing needs assessment.I don't know how helpful your GP is, but can you have a chat to them? Do you have long term health problems as the GP could also help with housing.
Other things to consider are what the public transport is like in your area, can you use it comfortably, are you socially isolated.
If all else fails contact your MP and tell him/her how long you have been waiting for a housing needs assessment and ask if they can find out why you've waited so long.
Sadly there are waiting lists for absolutely everything these days, so please keep in touch and let us know how you're getting on.
Adult Social Services already did a needs assessment and decided that I don't need support getting out and about as I can drive my car on a good day. I don't actually own a car and have never owned a car. They also provided no funding for care as they said I can afford to pay for care myself when I am on means-tested benefits. They really have been useless.
I cannot use buses as I need help from a carer and I don't have one. The DWP staff member who rang to tell me I am now in the ESA care group was shocked that I don't have help with my mobility issues as the ESA grouping included my mobility issues in their assessment.
Oh, crikey. I think you really need someone from Age UK or Citizens Advice Bureau to advocate for you, they're taking the mick.If all else fails write to your MP telling him/her all the things you have written here, and emphasizing the problems you have on a day to day basis. Ask them if they can advise you on where you can go for help.
Thanks. I seem to be doing way too much to get no-where. I need to write a list of people I need to contact and make a note of what was said and when. This has been going on sonce early December last year, a week or so following the death of my flatmate who was also my carer.
That sounds like a good plan. Make a note of day, time, and who you speak to, most will only give their first name but thst's okay. Don't overwhelm yourself with too many on one day, you might get confused about who has said what, but if you set yourself a target of 2 or 3 a day it's much more manageable.Good luck and keep us posted.
I know there is lots for you to sort out being alone but there is help out there and Age Concern should be a great help. My mum had a button alarm if she fell over or was ill and it would prevent a lot of worries for you. I wish you well.
I already have a button alarm I am supposed wear on my wrist only I forget to wear it or forget wear it is. I am being seen by the memory clinic here. I'll have another go at contacting Age Concern. Thanks for the heads up x
I just sent this email to Age Concern and am waiting on a reply
"Hello
I am looking for advice on organising a future care plan and wondered if you would be able to point me in the right direction.
I'm 63 and live alone with no outside support except a personal assistant who I pay for from my PIP payments.
I have heart failure, memory problems and balance and mobility issues.
I am currently on 5 housing waiting lists with Anchor Housing in Eastbourne and in my home town in Hampshire. I need support in helping me with moving into retirement housing and have been advised to sort out a future life plan
I have no idea how this works and Age UK referred me to you"
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I need to wait now to see if I have been accepted.
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