I’m scraping my old website and came across this letter. I offer this only as a reflection on my own process and how I used the skills acquired helping people with AIDS die with dignity among family as applied to my own loving and complicated family. We came together and answered the calling we all had to be loving and supportive– and more importantly- forgiving for how different we all are. This is a flashback to a different time. It is all more poignant now as I recently watched my darling husband Chris (Mr. Yummy) facilitate the same process with his own loving and diverse family.
A chain of events: An open letter to the family.
Initially writing, and now posting this letter was likely one of the more poignant moments in all the “random” events of the last year. It was in November of 2002 that dad became seriously ill, that we all began to be more aware of the challenges ahead, and for one of the first times we came together in support.
What follows is the letter I sent after spending a long weekend in Blackstone with mom and dad, reflecting and planning- just weeks ahead of the train tragedy of November 2002.
Tuesday, November 12, 2002
An open letter to the family of Clovis and Lillian Marcotte, Nov 2002
I’m coming home from a pretty exhausting and exhilarating trip to be with the family and to spend time with Mom and Dad. Recent reports of dad’s declining health are accurate and I leave Blackstone for California aware that the remaining good moments are like drops of gold. The purpose of this note is to ask that none of them be wasted.
On Saturday Paulette and I coordinated a conversation with two intentions, 1) to establish a game plan for the purchase and sale agreement of the house to Steven and Sandra and 2) to set up the basic foundation for the way in which Mom and Dad can have their health care provided for. We achieved both.
The intention of this note: to give you my perspective. I send it with love after having been touched by some incredibly poignant moment during this conversation. I hope this opens the opportunity for greatness in our family: we did it on Saturday. All we did is have a conversation, but a real conversation about life and death and how we
can look at these next days, months and years in a way that is supportive for everyone.
The medical facts: Dad has cancer-induced anemia that is pretty severe. He has dizzy spells, has fallen down, is struggling with the bathroom and is often cold to the bone. He stays down in bed a lot because he is cold. While I was home he stayed up and was active, but could quickly fall back into new, old habits. He has lumps in his lymph nodes and is having a biopsy on Tuesday. Paulette and Ray will go with him for the procedure. No clue of the prognosis or the cause. His color fluctuates, but he’s still dad!! Crazy, loving, cranky, corny dad. He has that shine in his eyes when a grandkid comes by, and to each new person that comes through the door he said, “You just made my day.” When each person leaves he says, “Have a good day, every day.” And his doctor is glad that we are starting to take a more active role in their health care. The someday we have all wondered about is today. Mom and Dad need us in a new and exciting way.
So, we gathered with Ray, Steven, Sandra, Mom, Dad, Paulette and me. We started by asking mom and dad to share their dreams. Dad said his: “To sell the house and give mom the ability to spend down the equity on the property as she deems fit. To celebrate this as the achievement of their life.” Mom shared hers, “To be surrounded by family in the comforts of her own home for as long as possible. To be loved by her children and grandchildren.” We stopped there to recognize that both of them had arrived at their dream. After a long pause, the looked at one another and smiled. Imagine for a moment what it is like to be around people as they realize that dreams are real. I hope I am able to say the same when I am in my 70s.
And the conversation was not without its challenges. Dad and mom have grown bitter in their old age. They talk to one another in ways that seem downright angry. They sometimes say mean things. Staying married for 54 years could kill anyone. 8 kids and we all have had our drama… Not one of us 8 doesn’t have some way or another we have provided joy and stress to their lives. We’ve also provided joy. During our conversation, they both made assumptions about the intentions of the other—and they assumed negatively. I asked, “What if you assumed that the other person had positive intentions? Wouldn’t you react differently?” Talk to anyone else at the table during this conversation. It was incredible. We cried we smiled, we were angry, we were happy and we were sad. Out of it, we asked Mom and Dad to make some promises. And they both said sweet and heartwarming things. They will ask for help. They will try to react positively. When angry, they will deal with this issue, but focus on the solution. They will count their blessings rather than their problems. At least this is what they said. Dad doesn’t want his lasting memories in the family to be negative. Can we also rise to that challenge?
And this is a tall task. Old habits die-hard. But Dad knows he is dying. We all are, but as he put it throughout the weekend: “I’m walking more slowly, but I’m moving much faster.” Who knows how much time he has left… months, perhaps years. This weekend they realized that the coming days, months and years can be filled with the same old stuff, or better still they can get the most out of life. I shared a clipping we have on our refrigerator that reads, “Yesterday is History, Tomorrow is a Mystery, Today is a Gift… and that’s why it is called the Present.”
We spoke some about logistics too. Dad needs help and mom needs support. Steven and Sandra cannot do this alone either. The bottom line is that precious moments in all our lives are few and far between, so why not make the most of them? Dad said to me, “Why stay awake sometimes when there’s nothing to talk about, or people talk about themselves, rather than together.” What we did logistically this weekend to change that was to slow the conversation down. We didn’t talk over one another; we waited for people to finish their sentences. When we are together we can go back to our old habits. Hell, we have fun. But around Mom and Dad, it is our turn to be the adults and make sure they are included in the conversation. Ask any of us there on Saturday: it made a world of difference. Steven, Sandra, Ray, Paulette and I were exhausted and stunned.
And Paulette and I are exhausted, so we can’t do this alone. We need everyone to help to keep these promises. Assume positive intentions. Don’t get pissed off for nothing, venting is fine. Call out the elephant in the middle of the room.
So what’s left? I asked dad before I left if he is ready to die, or does he want to go? He said, “when I’m called, I’m called… but I don’t think it’s coming that soon. I am ready.” So I’m thinking… what an opportunity!! Have no regrets. Have the moments I’ve had with Dad now or else you have only yourself to blame. Find ways to support mom as her partner grows ill. Write him letters if you are far away in big type. Read those letters to him if you are near. Imagine what it would be like to be in her shoes. Imagine what it would be like to be Clovis.
And they made a promise to us: They will be less stubborn. They will hug with meaning. They will tell us when we talk too fast. Dad knows he’s spent part of 79 years yelling. He’s ready to have some moments of laughter. We all made sure they both know we love the great moments we have had, that life has been wonderful, that they have created a wonderful family. We all have stories of frustration in our past: nothing is perfect. Paulette shared a wonderful perspective that we do the best that we can and that when we work together the burden is less. No romantic historical review—we have had a lot of family challenges. But we have survived because we ’ve stayed together with love and a good dose of healthy boundaries.
My only regret is that everyone couldn’t be there. I’ve written this up because at the end of our conversation Steven, Ray, Paulette and I looked at each other differently. I hoped the moment could be frozen in time. We know we’ll have our parents around for some time, but who knows how long? With luck, dad will bounce back. If not, he has a rich life and a loving family… The rest is up to him and God.
I’m working on the practical considerations: setting up their medical records so they are accessible to us all. Paulette and I will begin talking to dad’s doctors and have release letters to advocate on their behalf. We are looking for ways to improve the family communication around all this. Sandra & Steven need help in the day to day tasks It is no longer appropriate for Mom and dad to go on doctor’s appointments solo. I am getting caregiver materials together so we all have a common baseline. Mom and dad need to maintain control as much as possible, but (again) they will start asking for help.
So we have some suggestions: reduce the amounts of “shoulds.” It is up to Mom and Dad to make decisions. If you want to offer a suggestion, find a supportive, non-controlling way to offer it. Mom and Dad are not stupid and they have figured lots of things out in the last 54 years together. If you want to help, ask what they need rather than telling what they should do. And they agreed to be more open to receiving help.
Again, I wish you all could have been there. I’ve tried to describe the morning here, but it fails to capture what we created. Steven, Ray, Sandra, Paulette, Mom, Dad and I had a great moment. With any luck, this is the first of many, many more. Have your own moments, they are worth their weight in gold.