This episode begins the final season of Caregiver Tea Time. It's called "Let's get Real" and is about Val's toughest times as a caregiver. In this episode, Val talks about end -of -life decision making. She shares about the Ottawa Personal Decision Guide, a very helpful process for making important healthcare decisions.
01:09 Val warns listeners that in this episode she talks about end-of-life events.
01:34 Val shares that her situation is unique because her loved ones were young when they received their diagnosis. Her husband was 39 when he developed cancer in his tonsil and 50 when he developed leukemia from the radiation treatment 10 years earlier. Her son developed MDS because of a genetic disorder he had called Fanconi Anemia. https://fanconi.org/
These events were unexpected and Val's family didn't have the life experiences to understand what they faced. Val felt a constant inner tension and she feels that our health care system is not set up to help young families like hers discuss end -of -life issues. This is what has led her to create this podcast.
04:11 Val shares she is working on having compassion for herself and everyone involved in the situation. And especially compassion for just thinking things could have been done differently. Val feel her life lesson at this time is "go with the flow, and let go of the need to know".
05:04 Val shares the memory of the day her husband decided to go against his doctor's recommendation to try another treatment. Her husband had relapsed after a bone marrow transplant and his doctor wanted him to go through the process again.
06:32 A second doctor from the team presented a different point of view that was in line with her husband's wishes. Her husband decided to live his final days at home and not in the hospital undergoing more chemotherapy. She shares the immense appreciation she has for the doctor who took time to explain in detail what was happening and probable outcomes, even though others on the team disagreed with his approach.
08:49 Val shares about the events that led up to her husband's passing. She reminds listeners that in Season 3, Episode 4 she shares the beautiful story of what happened after her husband passed.
10:08 Val shares about the Ottawa Person Decision Guide. https://decisionaid.ohri.ca/decguide.html
A PDF copy and an explanation of this guide can be found here: https://decisionaid.ohri.ca/docs/das/opdg.pdf
12:26 Val's personal message today comes from Corrie Ten Boom, author of "The Hiding Place."
"Worry does not empty tomorrow of its sorrow, It empties today of its strength."
13:15 Val says, "Here's to the strength we have today! Cheers!"
Welcome to season four of caregiver tea time. I'm Donna Hemingway and I feel very grateful to be here with you today. If you are new to my podcast, I'll take moment to introduce myself. I've been a caregiver four times over a 25 -year period. Both my husband Paul and young adult son Loren needed me close by through very difficult illnesses and treatments that included radiation and eventually bone marrow transplants.
Today I'm about to finish something very important to me. I'm winding up my caregiver tea time podcast with this final season about my toughest times as a caregiver. I'm calling it "Let's Get Real" because these are deep stories. Even now, as I start the season, I'm not sure what I'll be able to share. I wantto warn you that I will be talking about what it was like for me to be walking through the end -of -life processes with my loved ones. You may be in the part of your journey where you aren't ready to face these things, and that's okay. This podcast will be here if you ever need it.
An important aspect of my journey as a caregiver is that my loved ones were so young. My husband was 39 when he developed cancer in his tonsil, and 50 when he developed leukemia from the radiation treatments. My son was 24 when he found out he had MDS, or myelodysplastic syndrome, something that can be compared to leukemia but is actually different. He developed MDS because he had a rare genetic mutation that caused Fanconi Anemia. We had no idea he had this potential problem until his bone marrow failed and a simple paper cut became severely infected because of his weakened immune system. These life -threatening illnesses were altogether incredibly unexpected.
Both men had healthy births, childhoods, and were fit and active as adults. We later found out from blood tests that they shared a genetic mutation that put them at very high risk of developing cancer at a young age.
We just didn't have the life experiences to know or understand what we faced. I felt this constant inner tension. It was between acknowledging the gravity of the diseases and its difficult treatment and facing each day as if it were just a normal part of life. I tried to focus on the best and most positive outcomes, believing that they would get better and have a good life ahead of them.
We really never discussed the future and possibilities of what to do if the disease came back or if side effects of the treatment wreaked so much havoc that recovery was not possible.
So the point I want to make in this situation is that at the time, the health care system was not set up to help our young family discuss end -of -life issues. In the best of all worlds, I wish our health care system would make this a priority for young adults with life -threatening illnesses. This is one of the main reasons I decided to do this podcast because I would have liked guidance about how to have an open discussion with my husband and young adult son who are very ill.
These issues were constantly in the back of my mind. I wondered what my husband and my son thought about their futures and I didn't know how to ask. And when I did, they didn't know how to answer. I look back And I wish we could have had these conversations, but I have to let that go. I'm working my way towards having compassion for myself and everyone involved in the situation. And especially compassion for myself for just thinking things could have been done differently.
My life lesson now is to go with the flow and let go of the need to know. It's especially good for me to remember today when I'm facing uncertainties in my own life, particularly when it involves other people. I'm trying to just take the time to let my emotions out in a safe way and let go. I'm going to repeat that one more time for myself:
"Just go with the flow and let go of the need to know."
I have a clear vision in my mind of the day my husband, Paul, was faced with that difficult decision to either continue or stop treatment. It was in January and he was laying in a hospital bed on the bone marrow transplant unit. I sat next to him as we waited for his transplant doctor to come in and give him the news of next options.
The leukemia cells had returned. Bad actors is what his doctor called them. Experimental treatments could not stop them. A year ago at this time, Paul was preparing for a stem cell transplant, cells harvested from his sister's blood that would give him a new immune system and the ability to make new blood cells. This was something that he thought would bring him a few more years of life. But sadly, leukemia cells resurfaced after just eight months.
His bone marrow transplant doctor said at this point he would like Paul to be admitted into the hospital again for another round of chemo and then they could start fresh with something called a lymphocyte infusion. It would take about a month, he said, and Paul's first response was, "No way." He was tired, and he said he does "not want to go through another round of chemo."
"Well, think about it," his doctor said, and he left the room.
A few moments later, there was a knock at the door, and a familiar face came in. It was the doctor who diagnosed Paul's leukemia. He was not a stem cell transplant doctor, but part of the team of doctors who saw patients with blood diseases. He has always been honest and upfront about the fact that Paul's leukemia cells were very aggressive and would be hard to treat. At the first appointment, when things were explained to me, he stood at a chalkboard and diagrammed everything out to make sure we understood what was happening and what the options were. I look back and I appreciate so much the extra time he took to satisfied that "need to know" I had at the time.
Now that Paul had been through his treatments, this doctor was checking back to see how he was doing. Paul shared about the transplant doctor wanting to do more chemo and a lymphocyte infusion. This doctor understood the plan, but he felt it was important for Paul to know that it was unlikely this additional treatment would stop the leukemia. Paul probably would not survive the treatment, which means that if he was admitted to the hospital to get it started, he would probably not make it home again. He listened to Paul's thoughts on it, and then he left us so Paul could decide what he wanted to do. Wow, this really was the moment of truth.
Or as I would find out in a few weeks, the moment of truth leading up to that final moment of truth. We were alone and I climbed in the bed with Paul. We held hands. It was the first time since his diagnosis I felt the inner tension ease with the clarity given to us by an honest, compassionate doctor. Paul felt clarity too and I felt relief flood over both of us.
I think I remember hearing comments from staff members who thought this doctor was too harsh, but I disagree. This was the news that we needed to hear. Now we could focus on living each day. Our minds could be turned to things that mattered most, and we could let go of the things day -to -day that concerns us about what to eat, whether or not we were getting enough sleep at night. For me it made it easier to just relax. For Paul, though, I think it was still difficult, and in the days ahead I could feel his tension.
One day he went to the clinic to see his doctor about getting a blood transfusion to relieve the tiredness he felt. He ended up being admitted into the hospital where he passed away later that night. Before he was admitted, Paul signed the documents that said he did not want to be resuscitated if his heart stopped, and he did not want to be kept alive by artificial means.
Even so, the staff doctor in charge of his care asked several times over the next few hours if he wanted to go to the intensive care unit to be put on a respirator. I understand why he asked this, and I'll always be grateful that Paul had the courage to say no.
This was the first time that I shared final breath with someone. One moment he was there, and then he was gone. I thought this was the end, but it wasn't.
And if you listen to the last episode of season three called "Beautiful Connections,"I share a very sweet story about what happened a few days after Paul passed away that night.
Each episode of Caregiver Tea Time, I like to share something useful. And today I have a very helpful tool called the Ottawa Personal Decision Guide. It was recommended to me by a counselor from the National Marrow Donor Program, also known as Be The Match. This is a wonderful organization prepared to help people like me, caregivers for bone marrow transplant patients. I
'm so glad I still had the link to find it. I used it just this past week when I was making a big decision about where to live. It really works. It's perfect for people making health decisions, including ones that involve other people like their family members.
So here's how it goes. It starts with clarifying your decision.
What decision do you face?
What are the reasons for making this decision?
When do you need to make a choice?
And how far along are you with making a choice? Are you just thinking about it, close to choosing, or have you already made up your mind.
To explore your decision, this guide leads you to put down on paper what you know.
List the options in a column, and next to each option, list the benefits of choosing this option, and then in a column next to that, list the reasons to avoid this option, its risks and disadvantages.
Then go back and rate each benefit and risk using stars to show how much each one matters to you. Zero stars for not at all and five stars for something that means a great deal.
To have the greatest certainty about your decision, choose the option that gives you the benefits that matter the most and avoids the options with the risks that matter the most.
This guide leads you to further choices about getting support, who to share your decision with and planning next steps based on your needs.
There will be a link on my caregiver tea time website for downloading a copy of the Ottawa Personal Decision Guide for you to use next time you have an important decision to make.
And now for my special message. It is based on a quote from Cori Ten Boom.
Cori lived in the Netherlands during World War II and hid Jews, protecting them from arrest until she was finally arrested herself. She survived the Nazi concentration camp and told her story in the autobiography called "The Hiding Place." Cori says,
"Worrying does not empty tomorrow of its sorrow. It empties today of its strength, because worrying is like carrying tomorrow's load with today's strength, carrying two days at once."
And so that's my special message. Worrying won't take away the sorrows of tomorrow, but it will rob you of the strength you have today. So here's to the strength we have today. Let's not waste it by worrying about the days ahead.
Cheers!
Nothing but the good things in this world, living in my heart.
Care Giver Tea Time was recorded at the Coop Studio, Irvington, New York. Engineered by Sammy Wags and produced by Bianca Groves.