Dear Friends, hope you are well; I would love any advice you may have.
my 90 year old relative has terminal cancer; he doesnt want the carers in; we all work full time; How can you convince some one that they need care, otherwise they will fall and end up in A and E. I am going to have 2 weeks off and just let the relative and his other relations deal with his moanings and groanings; I will say I have done my best
Thankyou; any comments would be warmly welcomed
Susan
Hi @susan_170912
May I ask how heās doing right now - mobility, ability to shower, dress, toilet etc
He doesnāt want carers but how ādelusionalā or disconnected from his actual NEEDS is he?
Wants and needs to do simple tasks / daily functions are 2 different things - so howās he/everyone been managing his needs so far?
Reading between your lines heās been recently diagnosed with terminal cancer? or had a recent accelerated decline in his symptoms?? So thereās a disconnect in what he thinks he can do and what he can realistically do now??
When a mid-70s terminal prostate cancer relative started going downhill there were a few months of increased care-supportā¦With that context in mind hereās a few things we did at the start of the decline:
- we got a hospital go bag ready with key documents and agreed actions for when an emergency happened, whoād be called
- started making his main space he used easier and got nutritional drinks like Ensure or Fortisips
In the process of making things easier, it also made him more aware of whatās less possibleā¦We started at what heād agreed to and then worked back into awareness of inability to do things
This all depends on your relativeās mental capacity and ability to reason things
Explaining how his needs and comfort can be met is difficultā¦but often we canāt āconvinceā or pre-empt and unfortunately something will happen.
Iām glad youāve reconciled with yourself that youāve done all you can, its hard to see others in pain knowing that help is out thereā¦Even with increased risk, you can only do your best
Hope that offers something and makes sense, bit tired over here!
How long is he expected to live?
Any plans for hospice care?
Claiming disability benefits?
Made a will? Power of Attorney?
End of Life Plan?
a thousand thanks to you ; thank you so much susan
thankyou so much Victoria ; totally wonderful help here ;totally wonderful
thankyou so much susan
It would really help if one family member is in charge of things, with others dealing with various aspects.
There is so much that needs to be considered.
Iāve now lost all four parents, husband and brother, several unexpected sudden deaths.
If the family can accept the inevitable, and consider things like the formalities of death, in advance, it will be so much easier.
Starting with finances, how much is available for a funeral, for example.
thank you so so much to BowlingBun and Victoria
Thank you so so much; I have tried to encourage conversations about palliative care, hospice, end of life but other family members are reluctant to talk about the end of life stage; i have decided to be me, be me and not try and change the father in lawās views anymore; I know it sounds selfish but it will have to be the social worker or some one else who says he needs care; it will be taken out of the familys hand and for that I am grateful; thank you so much Susan
@susan_170912 Youāre very welcome.
Death, end of life and hospice can be loaded-with-baggage conversations and very emotionalā¦all about coming to terms with reality, mortality and that weāre not superhuman.
Itās NOT selfish.
If thereās a social worker or Doctor involved you can always ask questions if that makes you feel better to voice your concerns - after all a Doctor needs to point out the medical management of pain, etc with nurses. Perhaps the family and Father in law will listen to the doctor.
Sometimes, unfortunately the ādoingā is not in our remit/responsibilities and we can only sit in the pain with people/the ones with PoA or the main responsibility - even when given our experience, we know thereās things that could be doneā¦we donāt have magic wands.
what a wonderful thing to say Victoria; that makes wonderful sense
thank you so much; a thousand blessings
susan x
My brothers always left everything to me and buried their heads in the sand!
Forget about what the others will or wonāt do, for the time being.
My next suggestion sounds awful, but was the best thing I did when mum was very ill.
I Googled āSigns of Dyingā and found lots of good articles written by people working in hospices. They explained how the body gradually slows down, over months or years.
When dad had prostate cancer, I knew that would leave me with my housebound disabled mum to care for. The GP wasnāt helpful, so I got in touch with the prostate cancer charity, who told me all I needed to know. Then rang the GP back, who was then more forthcoming.
I did a similar thing when father in law had bowel cancer.
There is nothing to stop you contacting a few funeral directors for quotes.
We used the same one for 5 relatives. I had a holiday booked when mum was nearing the end, my GP told me I must go, whatever happened, as I was utterly exhausted. I spoke to the funeral director and nursing home so that if anything happened, they knew what to do.
In fact, mum lasted a few more painful months, but having already spoken to both undertaker and Matron it all went smoothly.
My husband died suddenly in his sleep, nothing could be worse than making arrangements under those circumstances!
At some stage heavy duty pain relief may be required, often only available in a hospital or nursing home via a morphine driver.
How much, or little, of this you do is entirely up to you, but at some moment those with an ostrich mentality burying their heads in the sand will have to face reality.
@susan_170912 hi Susan. My mum has now been in residential care for a whole week! I have run myself into the ground all my life really and it got to the point where I just couldnāt manage her any more. Thereās only her and me left in the family now, so it was all up to me. Boy did she grind me down. She literally ran rings around me, played her carers off against me, you name itā¦ā¦ā¦ā¦.anyhoo about a month ago I took her to the GP again, having rang the surgery and telling them I just couldnāt do it anymore. Mum has a complex heart condition and she was getting her medications muddled and basically refusing to use any of the aids I put in her home. The GP let her ramble on again for about three minutes, then he just looked her in the eye and told her she had to go into care! She said āIāll think about itā. He replied āyou wonāt think about it, you will do it and you will do it today. If you refuse your daughter will phone me and I will personally hand you over to Adult Social Careā. Mum sulked for a day or two and then instructed me to find her a Care Home and put her house on the market.
The point of telling you this rather long tale, is that you just need a really good GP or medical professional to see the situation for what it is. There are still some around. I find that our loved ones of that generation will still listen to a professional (in my Motherās case a male professional) even if they are saying the same thing you have been saying over and over. Please get a GP or similar onside and ask them to explain the options to your relative. I am sending you hugs
Dear Bowlingbun a thousandthank yous for your most compassionate sharing and your profound comments; this is so so so so helpful; I am going to follow your suggestion immediately about googling signs of dying; that is so so so so helpful. I will light a candle for your husband and your Mum; I cannot thank you enough Susan; this is so so so helpful and I feel overwhelmed with joy to have this help; thank you so much
Dear Jayney a thousand thanks for telling me your story; I hear you ; I really do; I will ask palliative care and the social worker to talk to the relative and set the scene for this
a thousand thanks
Susan
I forgot to say that itās a good idea to have a ring binder with some sleeves, or the electronic equivalent.
You are probably going to speak to a lot of people, write down who you speak to, address, phone number and what was discussed and agreed.
I usually have a good memory, unless Iām stressed or upset. For a few months after my husband died I struggled to remember anything. Natureās way of protecting someone grieving, Iām sure, but very annoying!
Be kind to yourself. Try to look after your own health and fitness, and perhaps have a few short breaks to get away from it all.