You Need A Hierarchy of Representatives, Not a Committee
“i took her home last night with a headache. This morning she was unresponsive on the kitchen floor so I called the ambulance. She didn’t have a stroke. The tests show a growth in her brain!”, Lori told me choking back sobs. Later we got the diagnosis. Glioblastoma. Our vibrant friend Marie, only in her late 60’s, barring a miracle, had less than a year to live. The worst part is that she now has the cognition, language and behavior of a small child. She is incapable of participating in her own care decisions. And she will never recover to her former adult self.
I’m in North Carolina. My friend Marie and our caregiving support group are all in Florida. I feel helpless. The amount of frustration I am feeling is astronomical. Not because my friend is sick, but because there are too many people that have been given authority. Decisions have not been made. The more publishing worthy expression my mom used to describe this, “Too many cooks in the kitchen”! Everyone has an opinion. No one wants to make a mistake. Marie is dying faster.
Since this all happened about two months ago, we’ve seen how Marie has received not a single dose of treatment since she got out of occupational therapy and moved home with 24 hour aides and her incapacitated brother living with her. This is not the forum to write about the forces at call here. It would be lengthy, and too emotional for me right now.
The lessons coming from this, are what I want to share. We all now see the value of making the few correct choices and not swinging a wide net to make sure all the bases are covered!
The most important thing is to create a hierarchy, not a committee.
- If something happens to me, [my sister name] should make my health/financial decisions.
- If she is unable or unwilling to take on this role, [my brother name] should make these decisions.
- If he is unable or unwilling to take on this role, [my friend name] should make these decisions.
Three people to help, one in charge. All can contribute. One is the voice that speaks to the doctors or lawyers or hospital or senior community or whatever. #JustOneVoice speaking on behalf of the incapacitated person.
If you choose to have one person for financial #PowerofAttorney or #DurablePowerofAttorney and a different person for #HealthcareProxy, health decisions, that is fine. Do a similar hierarchy with each. Can be the same people, can be different order, can be totally new people. But read below for guidelines on how to select the right people. You can choose an entirely different person as #executor of your Will. That job kicks in after you kick the bucket.
Marie has already had one health care proxy representative decide these health decisions are too much for her and she’s dropped out. Marie’s closest and longest friend has decided to drop out because the Power of Attorney brother is making her life a living hell even though she is the one taking Marie to the doctor because he is obese, can’t walk and is legally blind and cannot drive. Why were these decisions made by Marie? No one knows. But there are lessons I’ve learned and wanted to share them with you.
Once all of this happened with my friend Marie, all of my single friends especially are now realizing that they need to be more specific about what they want. They have to be more deliberate about who they select to take on the roles in an emergency.
Choosing Your Representatives
You might think you want your family to be there for you, but there are reasons why that might not be the only or most logical choice.
1) Location: If they don’t live nearby, what happens if you’re in the emergency room? Who is going to make the decisions while you are unconscious? Who is most likely to accompany you to the ER to begin with? Who knows where your papers are?
2) Emotions: Will your chosen representative have the capacity to make the decision you would want them to make, or will they freeze up with emotion? Will they act on what they want? Who would direct your care the way you want?
- Do they know how you feel about organ donation?
- Would they sustain life by removing an organ or limb? Is that what you would want?
- Would they sustain life even if you are unresponsive or brain dead or can’t move or talk? Is that what you would want?
- Will they pull the plug if you need mechanical support to stay alive or will they keep you alive and drain all your resources and theirs? Is that okay for you?
- Or would they choose whatever is the least expensive, most expedient answer – when you would choose otherwise?
- Will they explore holistic measures instead of science ones? What do you prefer?
3) Resources: Does your representative have the resources to get to you? To stay with you? To gather information to make well-researched decisions about your care? To access your funds to hire staff/aides/nurses for you? To drive you where you need to go? To use technology (medical portal, apps, zoom) to keep people in the loop and to keep informed?
4) Strength: Does your representative have the physical capacity to lift you, move you, if you are incapacitated (faint, fall)? Can that person call, hire and/or manage someone who can help? Can they get you in and out of a car and drive you to your appointments?
5) Stomach: What if you need injections or pills? If you’re throwing up will they be there for you? Who will be able to be with you when you are bandaged, scarred, have wounds, etc.?
6) Intention: Too many people are looking out for what they get for themselves or their families or their business or their causes, and that could impact their decision making. Does your representative inherit something if you are incapacitated or dead? Do they get to live in or own your home? Will they take your things they’ve always wanted? Will they rummage through your things while you’re not aware or sleeping? Will they behave with integrity? Will they read your journals or go through your finances or steal?
7) Schedule: Does the person you’ve selected have the time to support you in whatever comes up? Would they make the time or find that they need to get back home or take care of business and thus not really take the time to make the best decision?
SOME ADVICE TO HELP PEOPLE HELP YOU:
1) Do Not Manage by Committee: We need to create a plan with ONE designated person. Doctors and lawyers will ask for one point of contact. If you have four people involved, how do they choose who the rep will be?
2) Consent: Be sure to ask the people you’d like to take on the role if they are okay with that.
3) Skills: Ask yourself, do the people you’re considering have the experience, and mental and physical capacity to take on the role you’re assigning?
4) Information: Have you discussed your wishes with your selected team to make sure they understand your wishes? Have you documented your wishes in writing and had those pages notarized or signed by witnesses? [See FiveWishes.Org for great resources.]
5) Notification: Keep your emergency contact people on your phone and on a card in your wallet.
- In the phone, put in your person’s name with ICE (in case of emergency) after it [i.e.; Fern Pessin, ICE.] Then include those ICE people in your favorites. That’s where medics and hospital will look if you come in alone or are taken to hospital by a stranger.
- The card in your wallet will have your representative’s name(s), relationship to you, phone (preferably a mobile #), and location (local or long distance?).
Going through this decision making process of selecting your representatives now, before something happens, will be a blessing to you in your peace of mind, and to your friends and people who love you. You’ve covered everything and people know how to do things the way you wanted, no guessing. Less stress for them.
Consider reviewing all of your paperwork and representative decisions every year just like you make new year’s resolutions every year. Be sure to keep the right people in the correct roles as we all age and evolve.
In the end, the people you choose as your representatives need to have your interests at heart. Be judicious when making this decision. The results can literally mean life or death, financial well-being or loss, to you.