The Physics of Health and Families
This sounds like the start of a long, boring research paper, doesn’t it? Instead it is the start of a discussion that most of us don’t want to have. We would almost universally rather read a twenty page, single-spaced, double-sided paper on physics instead of talking to our families about end of life care and arrangements.
Newton’s First Law - Every object moves in a straight line unless acted upon by a force. This is true for our lives as well. We will trundle along, not thinking much (if at all) about what the later years of our life will look like. For most, I think we just hope that decent health will continue until we reach an advanced age, and then we will quietly and peacefully pass in our sleep. No intervention needed. Unfortunately for most of us, the straight line begins to zig-zag at some point.
I am currently pondering multiple family situations and end of life care. My grandmother, who is 89, has not been in great health the last few years. She’s had a few falls that landed her in the hospital, but up until now has been ok enough that my uncle, who lives with her, has been able to care for her at home without much trouble. The few times she’s needed more, my mom will fly out, and I have flown out once or twice to help. This time she is in rehab, and they are trying to get her eat enough and get strong enough that she can go home. But what will that look like for her, when her advanced age means she is probably not going to recover to where she was before? She is at the point of needing a full-time caregiver or an assisted living facility but is refusing the idea of anywhere but home. Her body is frail, but her mind is still strong and she knows what she wants. How do you sort this out, when there is such a disparity between what she wants, and what will work logistically for everyone involved? My uncle can’t take care of her full-time. My mom lives 2000 miles away. Grandma is at a point where she cannot be by herself.
My own parents are 1000 miles from me and 2000 miles from my sister. They are in their late sixties, early seventies and still trucking along in their house, but this is another straight-line situation. Unless some external force acts upon them, they will continue until they can’t and then my sister and I will be forced to step in and make hard choices about how to care for them.
Mo’s parents are in better health, and fortunately they are here and close to us. Mo’s sister is also close enough that we will all hopefully have an easier time making decisions together when that time comes.
And then there is us. We are still young enough that this type of end of life planning should not even really be on the radar. Unfortunately, PD snuck in there and spun us around a little and is making us rethink everything.
My thoughts here are not really about the nuts and bolts of end of life planning, but the idea that no one IS planning for it. There is no conversation happening between anyone about what the plans will be, or what anyone expects to happen. I have mentioned a few times to various family members that we should be having these conversations – how do you see the end of your life playing out? What do you want to have happen? How do you want to be taken care of? No one wants to talk about it. It’s as if we all have these blinders on to the reality of the end, and we are all just firmly pretending that we will all die peacefully in our sleep and there is no need to think about it until it happens.
I’m telling you today, TALK ABOUT IT NOW. The reality is, your end of life is not just about you and what you want at the end, it involves the people who love you and who will need to make decisions for you. If you make no plans about where and how you might deal with assisted living, who is going to step in if you fall down the steps and no one lives close to you? Who will take care of you if your kids are still working? If your spouse cannot be your fulltime caregiver? If no one lives within 1000 miles?
No one can plan for every eventuality, but there should be conversations about the options. Especially in our situation, where I am looking ahead to my parent’s elder years, Mo’s parents, and Mo himself who may need more help than I can give him 15 years down the road.
It’s a scary topic, and much easier to put it off or avoid it altogether. However, no one wants to come up against this situation when you are in the middle of an emergency and say I wish we had talked about this and made some decisions when we weren’t in the middle of chaos.
Care partners, Parkies, people with parents 😉….. have a party…. Call it a Grim Reaper party and buy black balloons and be tongue-in-cheek about it. TALK. Tell your family what you see your role as a caregiver looking like. Be honest with each other about what your capabilities are and start planning.
I know my situation is NOT unique and lots of you are poly-caregiving to parents and grandparents and Parkies and kids all at the same time. Don’t be afraid to start planning how you will handle all of this – talking about the possibility of bad things will not make bad things happen, it will just make you prepared.
Thanks for listening, now go listen to each other.