I have been near a dying person in scenarios that were end-of-life. I’d rather not say which were friends, family or otherwise acquainted. There are aspects of dying that are not really spoken of very often. I’ve observed factors that brought unforseen pain to the family and to the dying. This is as far as dying goes in pallative care.

      Here’s a few things that go wrong during pallitive care.

The family of the dying does not get along.

One thing I have seen around the beds- literally around the beds of dying persons, is aggitated, hateful people cursing and swearing at their relatives. I’ve seen caregivers screamed at, abused and threatened. Also, a word to the wise- if you are the kind-hearted family member who just spent a year and a half taking care of your mom, your uncle might come in or a sibling who is a doctor come in and rail you for anything they feel you do wrong. In the end, others may come in and take over, having used you to do all the hard stuff, they go for grandma’s jewelry within a day of the passing. Watch for vultures. Especially make sure you know the law, who the power of attorney is- even if you are closely related. Gain maximum power of the correct person over YOURSELF so YOU can tell disruptors to leave if you are dying. You don’t need it. It takes planning to prevent, because you will be too weak to speak at some point. Build a stronghold for your sacred time on the way out! You deserve it.

Pain medication is mismanaged or stolen.

You don’t have to be trusting. Have a tight knit family team. See who is with the team and who is a not up to it and just wants to stay and visit. Discuss if there are family members who use drugs. Nothing personal. We all want to feel better. But the dying need to forget their pain, maybe even if they are hardly conscious due to strong dosing.

Make sure the nursing staff check out. Make sure upon time of death, no one rips off the remaining narcotics. I saw a hospice chaplin start to take charge of narcotics ONE HOUR after a death. He sent the FAMILY out to dump medicine in shavings. It was suspicious. That same hospice worker chaplin was fired not long after for criminal behaviour. So if you lean on clergy- lean on one you know and trust. At the time of your loss, you don’t need things stolen or to be tricked. It happens and it really sucks.

Advance Directive is not explicit enough, doesn’t work or doesn’t exist.

Don’t think of only what is best for others. Why care how expensive care is- whether you die in a week, or nine months. Don’t END your life… LAND it. Don’t have regrets if you suffer and cannot speak… decide NOW on DNR or limited life support. Don’t risk shortening your time to save money or to “spare others the sight” of you dying! Hey, we “living” are tough, but we love you. Its not too much. If we are in the room, we are strong.

Make your directive as descriptive as possible. It IS possible to be on the fence on life support for years where, in my opinion, NATURAL DEATH should have happened and ALREADY DID OCCUR, but like a basketball stuck under a hoop, its a “miss” even though the ball doesn’t come down. The ball needs to be pulled to keep playing.

Power of attorney mismanages estate and health matters.

Pick your spouse as power of attorney, or close relative. Someone who will not “hope you die” to hurry “it” up. I’ve seen this. I’ve seen people who frankly are totally successful in life yet are total losers as power of attorney because they do not care. They are mean and powerful.

Its not convincing that dying went well and was as stress-free and pain-free as possible for the now-deceased loved one.

So something went wrong. Find your true core person, your best friend, spouse (hopeful spouse is both!) and talk. Talk a LOT about how things made you mad. Talk, do fun stuff in the name of your loved one. Set a place at the table for them, as a “wish you were here”, even though they aren’t coming. Maybe they have a place just like that in heaven, set just for YOU to join THEM in a very nice place with all your people. One day.

Until then, plan. Make sure no one screws up your family’s sacred time. Live healthy! God bless.

Andy of D.M

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