A Terminal Illness Primer for Caregivers: Engaging Hospice & Selecting A Funeral Home

My latest installment of A Terminal Illness Primer for Caregivers discusses hospice: what it is, how it functions, and what you can expect once hospice has been engaged to assist with the care of your loved one.  I’ve also included a few paragraphs about a place we would all like to avoid – the funeral home.  Please visit this page to read the full text (scroll down to reach the chapter entitled Engaging Hospice & Selecting A Funeral Home).

10 thoughts on “A Terminal Illness Primer for Caregivers: Engaging Hospice & Selecting A Funeral Home

  1. tearoomdelights

    This is very interesting and informative. I don’t know how hospice care differs in the UK from the US as I haven’t had anything to do with it, but one of the things that surprised me when reading your post was the number of different specialists involved. I didn’t know you could obtain more than one copy of a death certificate either, I wonder if that’s possible here. I’m not sure how I’d feel about visiting funeral homes, probably pretty upset, but I do think it’s very helpful to discuss the patient’s wishes before they die.

    I don’t know if you have this option in the States but my dad wants to donate his body to medical science, and in order to do that he first visited his lawyer and then wrote to a university medical department to state his wishes. If, when he dies, they have the resources to take his body then someone (whoever is dealing with his estate) needs to arrange the delivery of it to the university, but in the event of them not wanting it (they sometimes have more than they can deal with) alternative arrangements need to be in place. It would be extremely difficult for loved ones to make decisions about this at the time, so forward planning is really helpful. I think Charles’s idea of having his ashes scattered in the desert is a beautiful one.

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    1. An Unrefined Vegan

      Lorna – I think it’s amazing and wonderful that your dad wishes to donate his body to science. I’m not sure I could do that myself – it doesn’t make sense to be squeamish about it since I’ll be, err, dead and won’t know how they will use my body – but yet it makes me feel slightly uncomfortable! How do you feel about your dad doing this? Yes, we also have that option here as well as organ donation (which we can choose to do when we get our driver’s license). There is another option as well. A place nicknamed The Body Farm which is where forensic science research is done. I’ll leave it at that, but it is a truly fascinating, if macabre, place.

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      1. tearoomdelights

        I know what you mean, Annie, and although I feel okay about it at the moment I’m not sure how I’ll feel when it happens. On the plus side, however, I know with certainty that it’s my dad’s wish to donate his body to science, and he feels strongly about it so that makes it easier – I don’t have to make a decision about it. I also feel (although I realise it’s one thing to say this now and quite another to deal with it in the event of his death) that once the body has died, all that remains is an empty shell. The essence, soul, or whatever you like to call it, of that person is no longer there and so in a way it won’t be my dad that goes to the university medical department, but just somewhere he lived for a while. If he were to be buried, his body would decay naturally which, if you think about it, is pretty gruesome. My mum wants to be cremated and, like Charles, has a specific request about where her ashes should be scattered. I find it very helpful to know this about them both now, and I hope that in some small way it might make laying them to rest that little bit easier, or in some way comforting – in the future, if not at the time.

        We have an organ donor scheme here too and there’s been much talk about making it compulsory with an opt-out possibility, rather than leaving people to opt in, because there’s such a shortage of donations. I hadn’t heard of The Body Farm and it does indeed sound like a macabre, although fascinating, place. I’m starting a course in Forensic Science tomorrow, I only hope I have the stomach for it!

  2. narf77

    Another sensitive, enlightening post Annie. I am always impressed by your ability to deal with subjects that people would rather run away from than face in a straight forward yet completely approachable way. My dad and his partner moved to Tasmania because they both found out that they were dying of lung cancer. We didn’t know this, we only worked it out from a series of x-rays that we found taken in other states before they moved. She died an horrific death very slowly and my father, when he started to sucumb to the same symptoms, decided to end his own life. He had nothing but glowing reports about the local hospice that helped care for his partner right up until she died but nothing can stop the stark reality of the pain and suffering that some people go through until they find peace from invading the ones that have been left behind after caring for them.

    Having thoughtful, caring posts like yours can help people to deal with thinking about eventualities prior to the event rather than having to be dragged kicking and screaming through the process as it unfolds, or like my dad, thinking that he couldn’t face going through what his partner had gone through and simply choosing to opt out of it. It happens to all of us but it is a sad fact of life that until we face death either in our family, friends or ourselves, we don’t realise that there is an entire undercurrent of processes that most of us are completely unaware of. Thank you for sharing this valuable information with us all Annie. We might not want to face it or deal with it but you have put it out there for everyone who needs to know and you have given people who might be desperate to find it out, a way to do so in the comfort and safety of their own homes with the option to read it slowly and digest it as and when they see fit.

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    1. An Unrefined Vegan

      Oh wow. You know, I get it. I’m not sure I’d want or be able to handle day upon day of pain – or of being dependent and helpless – of being a burden. The option of ending one’s life is there…a strange kind of comfort, though I’m not sure I’d have the courage to do it. I talked to my brother about it. I thought he might drive into the desert one day and that would be it. He told me he couldn’t do it. How did you feel about your dad’s decision?

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      1. narf77

        None of my siblings believe that dad deleted himself. I know he did. He died on the 7th of the 7th, he was 77, his “lucky” number was 7, it was 7 years after his partner had died and the estimated time of his death was 7pm. Steve and I found some prescription medication in the bathroom leftover from his partners journey and he told me often that he wasn’t prepared to be old and infirm. As soon as he noticed the obvious symptoms he paid for an old friend to come and visit him, he sorted out all of his affairs. He died looking at a portrait of my grandfather with a glass of very expensive whisky half drunk beside him. I doubt they thought to test that whisky as he had cancer and a bad heart and no-one (including his doctor) wanted to do an autopsy. For some reason, completely out of character, he had $1000 in his wallet by the side of his whisky. He knew that my brother couldn’t afford to make the trip back for his funeral and that we wouldn’t be able to afford to cater for everything that happened over that first week. Sometimes people can be incredibly brave when it comes to life and death situations. My dad was proud, fierce and stubborn and I KNOW that he died how he wanted to and when he wanted to. I think it was his decision and no-one else’s to make. When it boils down to it, your life is your own. Aside from the choices that you make in your life that direct your pathway from beginning to end, it is the only thing that you actually have. I doubt I could be as brave.

  3. annesturetucker

    Thank you for doing this Annie!!!! I hope this will be published to help, support and guide people through. I remember when my mom was sick and dying, how lost and alone I felt – in total distress and pain and at the same time having to deal with so much and not having a clue…… wish I had had something like this to read!!! XXXX

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