As my sister is in hospice care I can attest with experience that this article is spot on.
I like the “Niagara Falls trajectory”: To live as well as possible for as long as possible, followed by a rapid final decline. It even has a pun in it.
I have a few thoughts to add from my experiences. There are going to be lots of surprises. "Surprises" means, by their very nature, you can't prepare for them; but maybe I will be able to spare you a few dear reader.
I like the “Niagara Falls trajectory”: To live as well as possible for as long as possible, followed by a rapid final decline. It even has a pun in it.
I have a few thoughts to add from my experiences. There are going to be lots of surprises. "Surprises" means, by their very nature, you can't prepare for them; but maybe I will be able to spare you a few dear reader.
The system of password protected websites that we have now, is a nightmare for someone with cognitive issues, and for their loved ones who must untangle the mess. Make a list of current passwords, or use a password manager like KeePassX, and put that information in a secure place where someone trusted can access it in need.
If you want certain things for your funeral etc., tell people. Write it down. Put it in your will, or with your will. Even better, go ahead and pay for what you want now. There are ways to do this, even with payment plans and 'themes' for your life celebration like Fiesta, Irish Wake, etc. I'm not making this up. https://www.dignitymemorial.com/plan-funeral-cremation/prepaid-funeral-plans
Hospice is great - it can allow someone to pass away at home with their family, pets, familiar surroundings and peaceful setting. No beeping monitors, no hospital room. A nurse will come twice a week; a bathing nurse several times a week; they provide things like wheelchairs, oxygen, chucks and diapers; medicines are free. But hospice does not include someone to stay with you or your loved one. If you are the primary caregiver of someone, and you have a full-time job, you will need to find help. If you can get volunteers, great. There are services; they are expensive (sitting is expensive no matter what). I found that word of mouth was a better way to hire sitters. I have been fortunate in this way to find outstanding, wonderful people for care. You'll need to gather a bunch of people, available for times when a sitter might be sick or have to take the day or night off. And know that you, yourself will always be the backup sitter.
Hospice will send someone to stay with a patient for a couple of hours if needed. But that person cannot assist the patient to the bathroom, or dispense medicine, or really do anything but be there.
Oncology teams are heroic, amazing people. But they can be so focused on trying to treat the disease that they may not focus on quality of life vs. longevity. So you must do that. Be your own advocate, or be the advocate for the person you are primary caregiver for. Tell the people who may end up being your advocate what your wishes are, now while you can be clear about it. Make a living will.
Get rid of stuff, now. Seriously. Do not burden your family with a bunch of stuff they have no idea what to do with. If you have things you wish to pass on to others, put that in your will. If you just want to make sure your nice pottery collection doesn't end up in an estate sale with $2 price tags on it, label things with information about what you paid for it, who the artist who made it is, and when you bought it.
If you want certain things for your funeral etc., tell people. Write it down. Put it in your will, or with your will. Even better, go ahead and pay for what you want now. There are ways to do this, even with payment plans and 'themes' for your life celebration like Fiesta, Irish Wake, etc. I'm not making this up. https://www.dignitymemorial.com/plan-funeral-cremation/prepaid-funeral-plans
Hospice is great - it can allow someone to pass away at home with their family, pets, familiar surroundings and peaceful setting. No beeping monitors, no hospital room. A nurse will come twice a week; a bathing nurse several times a week; they provide things like wheelchairs, oxygen, chucks and diapers; medicines are free. But hospice does not include someone to stay with you or your loved one. If you are the primary caregiver of someone, and you have a full-time job, you will need to find help. If you can get volunteers, great. There are services; they are expensive (sitting is expensive no matter what). I found that word of mouth was a better way to hire sitters. I have been fortunate in this way to find outstanding, wonderful people for care. You'll need to gather a bunch of people, available for times when a sitter might be sick or have to take the day or night off. And know that you, yourself will always be the backup sitter.
Hospice will send someone to stay with a patient for a couple of hours if needed. But that person cannot assist the patient to the bathroom, or dispense medicine, or really do anything but be there.
Oncology teams are heroic, amazing people. But they can be so focused on trying to treat the disease that they may not focus on quality of life vs. longevity. So you must do that. Be your own advocate, or be the advocate for the person you are primary caregiver for. Tell the people who may end up being your advocate what your wishes are, now while you can be clear about it. Make a living will.
Get rid of stuff, now. Seriously. Do not burden your family with a bunch of stuff they have no idea what to do with. If you have things you wish to pass on to others, put that in your will. If you just want to make sure your nice pottery collection doesn't end up in an estate sale with $2 price tags on it, label things with information about what you paid for it, who the artist who made it is, and when you bought it.
I was sitting on the bank of the Middle Fork of the Salmon river in Idaho last year, with my toes in the water in that glorious, cell phone and internet free wilderness, and I realized that I want to make the rest of my life resemble that moment as much as I can, while I can. So while I may joke about living in a van down by the river, that is really where I hope to one day be. My stuff, as little of it as I can manage to own, stashed in a cabin, and my boat on a river, many rivers, somewhere, every day I can do it.
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| Scene from the Middle Fork of the Salmon river in Idaho |
What is your life dream? Your retirement dream?
There's more, and I may end up archiving this post after a while, it's hard to write about. But then again it may help someone, I don't know.
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