The Conversation about Aging You Need To Have With Your Parents

Everyone talks about money…nobody talks about pills

For many years I had no idea what medications my parents were taking, or why.

Then my Dad died, and my Mom started having more health problems. Eventually, she developed macular degeneration, which affects a person’s close and reading eyesight, and which made it difficult for her to drive. Soon my siblings and I were taking a more active role in taking her to doctor appointments and in making up her weekly pillbox.

Aging is an insidious and progressive process. One year my Mom had a stroke, and the next year we started to notice that she was showing signs of cognitive decline. In addition to not being able to fill her own pillbox with her daily medications, she started forgetting to take her pills in the morning and at night. So my siblings and I naturally began to take more active caregiver roles, with all of us taking turns to be with her at times of the day when she needed to take her pills, to give them to her.

Fast forward through two years of caregiving that eventually became all of her children taking “shifts” to make sure someone was with her 24 hours a day, 7 days a week, until the time when her decline became so clear that even with one person there all the time, we were unable to keep her safe in her own home. (Making a home safe for an elderly person— especially a home with stairs and hard ceramic tile flooring — is a topic for a whole other article.)

My mother is now in a Memory Care facility. It’s as nice a place as we could find, and one of her children visits every day. We take her out of it to visit relatives, or we take homemade meals to her, as often as we can. She is lucky in that, although she is nearly blind from macular degeneration, her health is generally good and she is not typically in a lot of chronic, physical pain.

But to me, she seems unhappy every single day. She doesn’t really understand where she is, but that doesn’t stop her from demanding, loudly and angrily, to go home (“I can take care of myself just FINE”) nearly every time we visit.

My family and I, and my mother to some extent, are so lucky. My parents were insanely hard workers who were able to save sufficient money that we were able to get into (and Mom is able to pay for) one of the better dementia care facilities in our area.

Now, you can’t take anything for granted. The cost of good Memory Care is very, very high. Even the good facilities, the ones for which you pay a premium, are facing staff shortages like nobody has ever seen before. It is a rare, rare, pretty much nonexistent day that they are fully staffed at my Mom’s facility. And there is always a lot of work to be done. The caregivers in these facilities help people with a wide variety of physical problems — many are downright immobilized by their Alzheimer’s and have to be periodically repositioned in their beds, assisted with bodily needs, and fed. They also have to work with a variety of people’s dementia-related behavior issues, including sundowning and yelling and aggressive or sexual behaviors. Staff in these facilities also have to make sure everyone gets their medications and uses the bathroom in a timely and hygienic manner, and they also have to be housekeepers who do laundry and help prepare and serve food. They create and run recreational crafting, movie-watching, and game-playing activities.

I’m sure I’m only scratching the surface of what nursing home and care facility workers do. So many of them are so amazing, you wouldn’t believe it.

So yes: talking with your parents or other relatives for whom you are responsible about money matters is very, very important.

But here’s another conversation you need to have:

“Mom (or Dad, or whoever), what medications are you currently on? Why are you on them?”

And then you need to follow up with this question:

“Do you want to be on these pills forever, at all costs?”

Bear with me now. I am not saying that elderly people or even people with dementia or other physical and mental challenges do not have lives worth living, or are not capable of loving their lives and wanting to keep on living them. I believe all of that very strongly.

I am saying that when my time with dementia comes if I make it that far, I would like to follow a different path than my mother is on with her medications. I would want it for me, and I would want it for my children if they have to help make my care and medical decisions. And this is the path I am hoping to take:

At a certain point, when the writing’s on the wall that I can’t take care of myself and am moving to the nursing home or memory care, I would like to stop taking any life-prolonging medications I might be on. I’m talking about things like blood pressure medications, heart failure medications, blood-thinning medications.

I am fully aware that going off such medications, particularly if I am on them to alleviate physical discomfort or to minimize the chances of debilitating heart attacks, strokes, or constant dizziness and falls, might not feel good. I get that a lot of time you just end up on medications in the wake of a short-term medical or health crisis, and then BOOM, there you are, on a new medication for good, that you are afraid to go back off of.

I am aware that if I reach this decision, I might still be afraid to go off my medications.

But I am also aware of this: Doctors are very, very good at putting you on pills, but they never, ever talk about taking you off of pills.

There are many reasons why doctors don’t want to have any conversation about people coming off of medications, even in end-of-life situations where their patients are never leaving care facilities, or who have Do Not Resuscitate (DNR) orders in place.

First of all, putting people on medications makes money for big pharma and big healthcare. It just does.

Secondly, doctors are often very good at and very focused on what they do. Particularly specialists. Cardiologists want to keep your heart going boom boom. Neurologists want to keep the blood flowing to your brain. And so on. Many doctors are very good ones, who feel a responsibility to provide what they feel is the best care for their patients, to keep them feeling as good as possible for as long as possible.

Thirdly, doctors also know that elderly people in particular often have more than one relative, and those relatives might differ widely in what they view as “necessary care” for their loved ones. Some people believe life must be maintained at any cost, no matter what the quality of life is, and will feel that doctors are condemning them or their loved ones to die if they are not offered every single life-sustaining medication. Other people believe that quality of life should dictate pharmaceutical treatment and that individuals should be able to reserve the right to say things like “I will accept the risk of a debilitating stroke if it gives me a higher chance of a fatal stroke that will end my days in this nursing home.”

NO doctor in the world has the time to have that conversation (or conversations) with family members and whoever might have the healthcare powers of attorney for others. They just don’t.

I really don’t mean to sound like a monster.

I love my mom and am happy to visit her. I don’t want her to feel physical pain and I don’t begrudge any choices she’s made up until now.

But I can see that she is often very, very unhappy. I can see she is confused and doesn’t know where she is who her caregivers are and why she can’t just go home. When she is agitated, I believe it doesn’t even give her any comfort when we visit. On those visits, she seems to exhibit feelings of betrayal — why can’t you just take me home? Why are my kids so mean to their mother?

It is heartbreaking, and scary, to watch. I can only imagine how scary it must feel.

I don’t have any techniques, or five-step plans for how to talk with your parents about their future life (and end-of-life, however many years that process may take).

But I do know this: We all need to start talking with our loved ones about what we believe constitutes a “high” or “desirable” quality of life. And then we also need to talk about whether that quality can be attained after one has dementia or other debilitating and unsolvable medical problems.

And we definitely, definitely need a better understanding of what medications we are on, what they are for, and whether or not we want to be on them until the absolute end. It may not be an easy conversation to have, but it might also be a very, very important one, for parents and children and other family members alike.