I'm rare?

Hi Alison 

In that case, I’m rare too. I’m absolutely with you. I have discussed my funeral plans with the dear friend who’s agreed to officiate at my funeral. I’ve linked with the hospice good and early and found that really helpful. I’ve made my will and begun clearing out the piles of junk that one accumulates over the course of a life. It’s all about making life easier for me and my family. It’s not being morbid, in my view, it’s just facing up to reality and being practical. 

I have had to have some difficult discussions with my family about the future arrangements for my daughters now that I’m a single mum. They’ve been emotional. But I do think that if things are rattling around my head then they are better out than in. 

Like you, I’m reluctant to ask about my shelf life, as it were. Numbers and statistics apply to populations, not individuals and I know too many people who have exceeded their prognosis to put too much faith in an answer. I do know what the statistics say about median survival from this point in my disease progression  but I plan to be a statistical outlier. 

Having said that, there have been times I needed an answer for a specific purpose such as applying for life insurance to pay off the mortgage. Again, being practical and making the best out of the situation. 

Thinking about this now, I wonder if we are the sort of people who would plan ahead anyway? I’m of an age when my friends parents are dying. It’s interesting to see that some have prepared and planned - and how much easier it is for my friends when they have - but many haven’t. 

As usual, your midnight ramblings raise some interesting points. 

Have a great day 

xxx

I have planned too - as a family we have always been quite open about death. My fiancé finds it more difficult but, as I have pointed out to him, people die every day without any warning and it's better to have the practicalities sorted out. 

Having said that, I'm not going anywhere soon!!

Love to you all

X

Claire

Hi to all 

I started planning soon after my diagnosis, 3 years ago by paying for a pre paid funeral and organising powers of attorney, and signing a DNR, also started a file for my daughter with everything I think she needs to know, passwords etc D/ D to cancel and important phone no’s she may need and keep adding bits as I go along and I can show it to my daughter and we go through it together without any awkwardness between us Trying to do a de clutter as I go along too getting rid of items I no longer need 

Since being taking off all treatments a few weeks ago and moving over to palliative care only now it has made me think about things more urgently now, I’m lucky that my daughter and I can talk openly about my death and she knows exactly what I want and where I want to be, just ordered a key safe now too so it’s there for the future when it’s needed as I live alone 

I’m the sort of person who likes everything organised but some don’t even want to discuss it, my sister who passed within a few months of her diagnosis would not talk about anything just closed her mind to it but we had to respect her wishes but it was hard as we had no idea of what she wanted 

So it’s interesting to be able to read other posts and get others perspective on this difficult subject 

Love to all

Margaret

Hi Everyone from sunny Benidorm!

Well, I'm another rare one Alison! I'm organised with Will, Power of Attorney for Finances & Health, DNR. I've written what I would like as far as the cremation is concerned and where I would like my ashes scattered ( got permission in writing too) the music, reading etc. My husband and I have discussed these in detail. I've been in contact with my local Marie Currie Hospice and they are all lovely! The only thing I have still to complete is the clearing out but I've started! As far as "how long have I got" I have never asked the question but at my first oncology appointment, I was TOLD I had 5-7 months, if I was lucky and when I started the Target Drug Trial was told maybe I'd get another 5 months, if it worked for me!

As most of you know if you've read my profile, that was May 2013! So they are way out with the prognosis! Nobody really knows! I came off the drug in Sep 2016 & have been NED since early 2017! 

In a way, I think we are pretty fortunate as now "nothing will go unsaid" so there should be no regrets either. I have discussed everything with my son, daughter and their spouses. However both my sisters don't want to know! Won't talk about it at all. Heads in sand come to mind but there is nothing I can do, as it is their choice! Personally, my only regret is I have become more and more immobile, so I feel this puts more pressure on my fantastic husband and we have discussed this. He answers, "it's no bother & I know you would do the same for me!" I can't argue with that! Well, this is Siesta Time and as usual, I'm not asleep when I should be! Take care all my "RARE FRIENDS" I don't think I'd have got this far without you all! 

hi all.  my wife and I paid up for funeral plan(fully paid) each when I was first diagnosed.nearly 3 yr ago even though we have money in the bank don't want daughters worrying.  

Hi Everyone

It's good to read so many of us are at least starting to plan ahead as I'm sure it will make things less difficult for our loved ones.  I guess that perhaps our willingness to engage in this group means that we are more likely to be the sort of people who are actually open to talking about our deaths and how we can complete our lives as well as possible.

I'd be really interested in hearing how other people who live alone are planning for the time when living alone is no longer possible as it's something I'm struggling with at the moment.  It really hit home recently when there was snow on the ground, I had a major problem with no electricity (just my house), I was still very weak after having paracentesis followed by chemo (with nausea) and had to try to deal with the situation.  If I'd had someone living with me it would only have been a minor problem for them to deal with, but even making a phone call to an electrician was a major effort for me, let alone trying to get off the sofa to open the door to them.  I foresee a time when I'm similarly weak and unable to care for myself but which doesn't improve as chemo symptoms subside and I find it frightening.  I don't know how long such a period might last before I actually need end of life nursing care but when I think of family members who have been approaching the end of their lives with cancer they have always been living with other people. I know there is some funding called "Continuing care" but I've no idea whether this enables a person who lives alone to have company for substantial periods of each day or whether it just means they get a few short visits from carers each day.

Has anyone seen or is aware of others who have been in a similar situation, or any suggestions for how to manage?

Hope you're having a great time away Annette!

Hi JayKay 

That sounds like a scary experience with the electricity and snow. It’s the kind of scenario that fills me with dread. 

I don’t live alone as I have my 18 year old and 15 year old daughters with me. But my big girl is off to university in the autumn leaving me and my little one. We have already drawn up a list of people - friends, family and neighbours - who are ready to help in an emergency. I’ve had three emergency hospital admissions in the last year and realistically we havd to assume there will be more. On the advice of the hospice nurses we have asked someone to be top of that list so that my little one has a first port of call who can take over from there. Ideally it should be her dad but it’s not. I’ve put the list on a shared google doc so the right people are in touch with each other. 

Beyond that, one of the tricky conversations I’ve had is with my sister. She’s offered to come and live with us when I reach the end stage. The question is when will that be and how will I know? That brings me to another tricky conversation. A couple of weeks ago I took my girls to meet the home nursing team at the hospice. One of the important things they said was that they will know and they will tell us when it’s time.  They said they’d be looking for change - in my appetite, how much I’m sleeping, the odd things that I might slip into conversations. We are in regular contact by phone so they know me and are alert to the kinds of changes they expect to see. 

These are the solutions that work for me right now - and I recognise that things will change. Part of what I’m trying to do is help my big girl feel safe to go to university. Life needs to go on as normal and she should be going to uni in a normal life. My job is to help her on that road. To do that, I’ve needed to formulate the questions I have (and that in itself is not easy) and to ask them of the people who can help. 

I hope this is helpful. I think your post already contains some of your questions. So maybe just ask them? 

Also how are you feeling now? 

Lots of love 

xxx

I'm rare too then, except thst i make people uncomfortable when i discuss it so its written down ....i just hope they find it lol

Hey JayKay,

Slightly different situation, but both sets of my Grandparents reached a stage when one half could no longer look after the other and vice versa. Which meant that the family needed to look at options.

There was either moving into assisted living, a home, or a hospice - each was relevant for one of the 4 at different points. However none were ever relevant for both of a couple at the same time, so it would mean splitting them up. So those options were all dismissed at first.

We started with carers popping in at key times of the day. So first thing in the morning to do getting out of bed, washing, meds, and breakfast. Then again at tea time for the same, but in reverse. It varies from authority to authority as to what's available on the NHS. However, keeping you in your own home with home visits are cheaper for them, so they will try and accommodate you where possible.

However, when things deteriorated beyond 2 visits a day then carers were hired to live in with them. I think this was subsidised for one set of grandparents, but not for the others - again because of the health authority they lived in. Most/All of the cost had to be covered by my Grandparents or the family. However it meant they could stay in their own home, in comfort, with all of their things, independence, and together.

However, after my Grandpa passed, my Granny deteriorated beyond what a home carer could do I think..... or my aunt overstepped, I'm not entirely sure as it's not a topic talked about...... And so she was moved to a home that was equipped to deal with her medical needs.

Anyways, the point of that is that there are options available but it very much depends on your funds and what you can afford.

But I understand a little of what you're thinking. I live by myself too, and there are days I struggle with things that would be so easy for someone else to do. The other week I got stuck on the floor for a few hours for example. Couldn't get up, and had a mini panic - especially as I couldn't reach my phone. Though even if I had been able to, no one could have got in without dismantling my entire door. My house is also a tip because I've no strength or energy to clean and tidy. It's doing my head in.

I hope you manage to get a plan of action together, but just know, you're not alone in your worries No matter how big or small.

Lass

Xx

Hi All,

I have discussed funeral arrangements with my wife but have nothing organised yet.  This is partly because I'm really not bothered about what sort of service (or lack of it) that I have.  When I get nearer the time I will discuss it again but in terms of what my wife and son would like.  At this stage I am reasonably healthy and my son does not want to discuss my dying yet although he does know that it is incurable.  So long as the treatment is holding the cancer at bay I see no need to push him into this yet.  I don't know if they will want to visit a grave or think of me scattered in a nice place after I am gone or if they would simply prefer to remember me as I was.  We have enough savings to cover whichever option they prefer so they will not struggle financially with it.  Other than that I have details written down including how to put a post on here although I do need to update it again.  Our wills have been written for some time.

I have bought a keysafe (costs about £12) which can be fitted somewhere, on the wall outside your door, in a shed or garage.  It has a combination lock and you can put a door key securely inside it.  You can give the combination to friends or carers so they can let themselves in if you want them to and if people such as electricians or even the police or paramedics attend and you can't get to the door you can give them the combination as well.  You can change the combination again whenever you like, you just have to remember what you have changed it to!  It is also there if you lose your own door key.

I know my mum had carers calling in to help her get washed and dressed in the morning, at lunch time and again on an evening to get her ready for bed.  However, she had to pay for this.  It may have been subsidised but my sister sorted this out.  My mum reduced it partly because they would not attend any later than 7pm and my mum was always a night owl and no way was she getting ready for bed at that time, and also because she resented having to pay for it.  She also pushed back the morning visit as late as possible as because she stayed up late she never got up early.  She was happy to see them at midday as they tidied up and vacuumed.  I know availability and cost does vary by area as it depends upon how the budget is allocated and how much is left.

It is probably worth discussing with your GP or Macmillan what is available in your area.

All the best,

Gragon x