What needs to be done as a family when you realize someone is terminally ill or dying? What can you do prior to that to ensure your decisions are honored at the time of your death? I know these are uncomfortable thoughts, but the discussion need to happen.
A hundred years ago death was a natural and expected part of life. Families held wakes in their homes (we now call them “viewings” and they are now at a mortuary or church for two hours most of the time). Flowers became a part of funeral culture because they were used to surround the body to combat the odor of the deceased, who was not embalmed. We didn’t have TV dramas falsely portraying CPR working like magic making all of us think we could beat death the first few times. We died at home, not in a hospital or care facility. Death went from an intimate family experience to a medical issue, and from home to a facility. Hospice has served to bring some of that back to home, but not a majority of the time. As a result, talking about death and planning for it has become almost taboo in many families. How many times have you heard “I don’t want to think about my funeral (or making a will) because it will make it too real, or bring bad luck, or make me uncomfortable?”
I want to bring end of life back home, and back to “normal.” I would like to see families and friends having those discussions. Death happens. It’s inevitable. And it’s better to know what your loved one wants if they are approaching their own death, and that your loved ones know what you want before they have to make decisions.
What do families need when a loved one is dying?
What have you needed in the past when a loved one was dying?
The basics for the caregivers:
o Rest- even if you think you can’t sleep. You will be exhausted.
o Nutrition- even if you aren’t hungry
o Disengaging with outside demands- you do not have to do that errand.
o Help with responsibilities – ask for help. It’s ok. They want to help.
o Time to cry and grieve as death is occurring.
o Help with kids being impacted if needed – select someone to help each child
o A support system of your choice
o Not to have people present you don’t want there- if you are the primary and your loved one does not want or need them there.
o A comfortable chair at the bedside. That’s imperative.
The biggest piece that’s usually missing? Education about what is happening.
o Do you know what to expect?
o Does your family?
o Does your loved one?
What do you understand about the dying process?
What do you understand about the comfort care interventions that may be offered?
Does anyone think that CPR should be initiated?
Do you have a safe place to talk with someone in confidence? To vent without criticism?
Can you give yourself permission to take a break and leave the room?
Do you need spiritual support?
Has advance planning been done for:
o Funeral care?
o Cemetery? Or no cemetery?
o Are clothes picked out for your loved one leaving the house or hospital?
o Have you considered wanting to help bathe and dress your loved one afterward?
o Have you set limits on others (if you are primary) regarding removing “stuff?” If you’re not primary, has it been discussed?
o Do you know who to call after the death occurs if you are at home?
What’s the business end of death at the time of death?
If you are at home: Call hospice if they are involved, or emergency if not
Hospital/SNF : They will call you if you’re not there, and they will call the agency needed
For all: You will need a mortuary provider
If the coroner has to be involved, they may take the deceased initially, then release to the provider you select. If there is an autopsy it may be several days or more.
The next of kin need to be listed with phone numbers and addresses. It’s easier to put that together before it’s needed.
If there is a Power of Attorney done it should list who may make decisions. If not, the mortuary can tell you the order of priority for decision makers. If the decision making falls to adult children, 51% must sign for arrangements. Can you reach them?
The mortuary prepares the death certificate together with the doctor and county or state agency involved, depending on which state you are in- it’s not yours to deal with. Keep that off your plate. You have enough. If your help is needed you will be notified.
If you are interring/burying your loved one you will need to purchase a plot. If there is already one purchased, it must be completely paid for, and there will be charges that can’t be pre-paid for opening and closing the grave.
If you have a pre-paid arrangements, there will still be costs that can’t be included and will need to be paid. Pre-paid arrangements cannot be changed. That’s the only way to ensure your wishes are fixed and will be honored. If you think there may be conflict after your death or your loved one dies, you might want to make plans now. Then make sure the family knows where they are made. It doesn’t help if nobody knows about it.
Most survivors in the immediate time after a death have difficulty with good judgment, but may not know it. Some suggestions:
· Do not drive. Seriously. You won’t be able to focus enough the entire time.
· Eat even if you aren’t hungry
· Lay down even if you can’t sleep
· Let the professionals help: your funeral director can order flowers and help with sites for services and receptions, and even caterers. They frequently have discounts made available they pass on to you especially if they are locally owned. Large mortuaries may have rooms for receptions.
· Family owned mortuaries are almost always less expensive, and offer discounts chains do not allow.
· Mortuaries are required to provide an itemized list for services and the fees. If you are purchasing a package of services they are already at a lower cost, and usually cannot be changed.
· Allow others to help, but don’t relinquish your needs being met in terms of the service or anything else.
· Don’t allow anyone to dispose of clothes, sheets, etc. unless you or the primary survivor are ready.
· Arrange for someone to watch the house during the service
· Cremations can be witnessed, but you need to decide if that’s something you want to see.
· Don’t expect anything from yourself until you feel ready. Immediate grief is a tough time, even if you thought you were ready.
· Grief recovery support programs are an excellent place to find support while not involving your family. Your experience is different from everyone else’s. Let yourself grieve your way.
I hope this helps you to get through a tough time, or to start the conversations with those you love. Remember, this isn’t inviting death. It’s taking care of your loved ones and yourself at one of life’s hardest times.