End of life Planning
1 Finance - Will writing, putting information about key finances in a central place/s
2 Household - Collation of household documents, airlooms etc..
3 Councelling - Councelling and key principles to come to terms with end of life and terminal
4 Well Being -Avenues to help come to terms with end of life and terminal
5 Support - Support for self and loved ones
Firstly thank you for looking at the councelling / well being sections.
It's not easy to do I know but so important.
The two go together and aren't mutually exclusive. In case it helps others I will provide my own journey in this
space. Also as I know that it's something rarely talked about in the open.
Particularly directly from the suffers / patients like me who in complete fairness are busy enough
managing their own problems. That said if you'd rather not read the background and skip to the councelling that's also fine, in which case
click here to go to the bottom part
Before I go into details, I want to call out that in my view (particularly for those terminally ill
(cancer councelling and well being is just as important as the treatment itself)
It took me several months before I did this. In part as it linked to well being and I wasn't in the right headspace
in the early days. Some of that time admittedly recovering from injuries but it extended beyond that.
I was so caught up in looking at the science and the treatment, doing the doing with lots of practical tasks / work.
I was, as I suspect many of us were, brought up to be strong, difficulties were things you manage in the family etc..
Furthermore I couldn't and didn't see the value in things I couldn't quantify like councelling and well being.
I.e. I saw qualitative information saying they were important but no cold hard numbers. This somewhat beligerant approach
served ok for a couple of months, to help I used coping mechanisms and buried emotions.
However in retrospect cracks had begun to show a few weeks in and then got worse. Initially I slept well, however
that may have been a by product of all the pain medication I was on for my injuries and hospital.
First though came a sense of detachment. I noticed it with TV. After a few week I couldn't watch news, soaps, films etc..
I couldn't stand watching people with normal lives and didn't want to see it.
Initially I coped by watching limited TV about other subjects. I.e. nature programs and gardening.
However this continued and soon I simply stopped watching TV. This detatchment extended to friends and to some degreee family.
At least emotionally.
I also started to get very depressed. I found no joy in anything, I felt my life had ended since the road incident as I couldn't
do the things I use to do. I don't think I got fully suicidal but I certainly did feel my life was worthless
and I felt the longer I lived like this the more of a burden I was on loved ones. At the same time I felt
suicide would not be fair on loved ones and besides if I wasn't successful and just picked up further injuries it'd simply make things worse.
I got by though still in this state as I'd always felt once hope hsd gone I'd continue due to purpose.
I.e. I have 2 young children and a family who I will never abandon. So at some point I'd lost hope but continued on due to purpose.
Albeit other challenges were coming through such as further deteriorating sleep due to heightened anxiety of dying.
By now I had tried to get some cancelling however it was remote via the end of a phone and somewhat impersonal.
What I suggest might not work for everyone but hopefully it'll to some degree help most and is geared towards
end of life / fear of dying. I think I will always have a degree of fear with dying, I expect almost everyone does
and is some ways that's healthy and likewise I might not fully accept it when the time comes. However I am now accepting of an
early death, able to go most days with smiles and able to resonably engage with family and society. Furthermore I've
largely found the joy in life again, even when in a fair degree of pain and unable to do alot of the tings I use to do. What comes
next was instilled in me by a local councellor who works for the social prescribers and a
local clinical phychologist
who works for Als Pals. Both were excellent and very formative. Whilst I have summarised in brief and hopefully will help
it's no substitute for taking detailed councelling. Not least because we're all unique and a bit different.
Key Principles
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What in life is most important to you - leaving with no regrests. For most of us it's time with loved ones.
The clinical physcologist summed this up well and reasonated with me.
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You can't control death but can control what you do whislst here - I.e. there's some time to do those important thnigs.
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The importance of time should not be measured by duration, it's what we do with it
- I.e. There are and have been people out there who have acheieved alot in a short space of time.
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Get Perspective on things - I'd worked on this quite a bit prior taking councelling and focusing more on what I still
had rather than what I'd lost helped me. Similarly thinking despite how terrible things are, they could always be worse. I.e.
this could have happened to me when in my 20's, I'd hd th luck of living some ife first etc..
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Find the joy in life again
- The councellor from the local prescribers helped me alot with this. Finding what could I do again perhaps with some adjustments,
what could I never do again and wasn't worth pursuing, what new things I could do. What existing things were out there,
perhaps things I took for granted, that were joyfull. Trying to savour those moments.
Types of councellors and provisions
I tried all of the routes below.
I found personally the most useful were those that gave, flexibiility and continuity. For me knowing a face,
I didn't need someone to follow a script etc.. just people to delve into my issues and suggest pracgtical ways of helping to alleviate
those. In this instance the local counsellor via the social prescibers and local clinical phycologist. I foung in each of their
sessions things that reasonated with me and also found things tangibly improving in my outlook.
On the flip side, in a couple of instnce the sessions sooon had become more of an update session, where I described my how my week had gone, in
these instances I stopped the meetings and focused on those thst were value adding.
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Via charities - Macmillans are probably the biggest / most well known
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Via GP referral and local prescribers - There'll be general councellor support via social prescribers and
most specific cancer trained councelling at a regional level. Personally I found the general councellor support
the most useful. I got a quick referral, it gave great continuity and the prescriber was excellent. All too often there tends
to be a push towards more 'qualified' support. Whilst this might be true on paper, some of the best experience is gained through working with people
and life, not through courses per say. Also for me I couldn't see why having cancer as a chronic illness was any different
to any other chronic and terminal illness in the main from a councelling perspective. Therefore made no odds to me whether cancer
specfic.
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Via private insurance
- I tried this and personally did not work for me. The operating model was inflexible, I got passed betweeen different people and was often watching the clock.
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Clinical phsycologist - In a general sense these differ slightly as link in support as part of your cancer treatment
. I tried some such support via my hospital and via the charities. I experienced quite a difference in approach, some following
quite a structured clinical route, others starting more holistically without the struture, instead focusing on my biggest challenges.
I found the later much more useful for me Dr Andrew Maleknia who is excellent.
