An Open Letter to Our Dear Friends and Family
Lewy Body Dementia, Parkinson's, and George's Last Battle
This Lightshare Letter is dedicated to anyone who is, or who has ever been, a caregiver for a loved one. Our stories are heart-wrenching and our experiences are certainly among the greatest challenges of our lives. And, yet, those we love and have loved, are worth everything we could possibly give.
At the end of March 2018, although we were struggling mightily with the symptoms of the Parkinson’s Disease and Lewy Body Dementia and their effects on our life, I believed George would be with us for a few more months at least, if not a year or so. But, on what had become a regular call with the hospice doc to adjust meds, the truth finally registered. I was standing outside on the back deck for this conversation and I remember my knees buckling when she said that George had only a few days to live, perhaps a week. (The hospice nurse came regularly and reported his progression to the doctor.) I was in perfect denial, even as a nurse practitioner.
That was the worst conversation I’ve ever had.
Because George had such a vast network of treasured friends, and because I had insisted on honoring George’s privacy during the worsening dementia and Parkinson’s symptoms, many of those who loved him did not understand the extent of what was happening to Doc Flynn. And, after that call, I realized it was time to tell them.
The following is the email I sent. Some of you may remember receiving it. I omitted a few lines that are still particularly tender.
An Open Letter to Friends and Family
30 March 2018
Never did I think I would be writing a letter to inform our loved ones of the battle we have been waging against dementia and Parkinson’s over the last 2 1/2 years. I have wanted desperately to protect my husband’s dignity and privacy by not speaking too openly about what we have been experiencing. He is, after all, Dr. Geroge T. Flynn III, MD, former Vietnam surgeon; ER physician extraordinaire; unabashed and freely-giving helper of the sick, hurt, injured, sober, and more often, not; lover of good books and great women; friend to most everyone; generous to all he met; purveyor of off-color humor; larger-than-life; brilliant, brilliant, brilliant. But, this Lewy Body Dementia (LBD) - this damned, accursed thief - is rendering my husband’s pride a moot point and it is time to finally share with you this, our final chapter.
He has suffered so many losses in such a few short years. It makes me almost breathless to think of it. The first sign was his decreased ability to perform simple calculations. Then retaining a few pages from a book became impossible, then a few paragraphs, then a few lines, then a few words, then…he just stopped reading. And, worse, he was aware that this was happening. I cannot express the heartbreak of witnessing this voracious reader become unable to comprehend the written word. His neat, small script [many of the nurses reading this will remember how neatly he wrote and how easily it was to read his writing in the ER, which was quite unusual for physicians] became unintelligible. We had hard, hard conversations about not renewing his medical license, not driving anymore, giving away his guns. When Stinson Beach or ranch friends would call for medical help, I found myself watching and listening acutely to make sure the information George was giving was accurate. We finally decided together that I would help our friends who came to the house or called seeking help. George allowed me to take over the suturing at home and he would hold the light for me. (This was particularly heartbreaking because I worked with him for 10yr at San Joaquin Community Hospital in Bakersfield as an ER Tech and ER nurse while he was the ER Medical Director. I was the one who held the light for him and frequently here at home in Stinson after that.) The role reversal hurt and was extremely hard for me to swallow and I’m sure it was as difficult for him to accept. Although this had to have hit his sense of self like a punch to the gut, George is an extremely pragmatic man: it was at this point he started telling me, grimly yet with his typical courage, “Renate, we have to play the hand we’re dealt.” Yes. We’d been through many rough times in the past, both apart and together, and we would handle this by facing it head on.
And, we have. We tried Vitamin B12. Omega3’s. Concerted blood pressure maintenance. I read The Mind Diet by Maggie Moon and we incorporated even more blueberries, leafy greens, fish, nuts, beans, poultry, and olive oil into our diets. With my gentle prodding, we decreased the amount of alcohol he was consuming (but he was already not drinking too terribly much anyway) due to its worsening effects on the dementia symptoms. I, surprisingly, managed to graduate from school. [I completed my doctoral degree in nursing after postponing for a couple semesters as the symptoms worsened.] We tried Namenda and Effexor, with horrid adverse effects. We had an Occupational Therapist come to the house for a safety evaluation.
The cognition continued to decline. It also became apparent very quickly that there was also some sort of movement disorder occurring. After prodding (he probably saw it as extreme nagging, a specialty of mine, but I like to think I was as gentle as possible) from me and an important and timely visit from his sister and brother-in-law last summer, George agreed finally to a neurological consult. Parkinson’s was diagnosed and medications prescribed. The medications wreaked havoc on his already often-unstable BP but seemed to help his motor symptoms somewhat.
I cut back my hours at work again. There were a few falls. I couldn’t leave him home alone anymore due to the fall risk and the increasing impulsiveness. The waves kept coming so fast that we couldn’t catch our breath. He was having ever-increasing feelings of overwhelm with too many visitors at once or too much stimulation. We tried to go to the ranch but he was afraid that something might happen to him way out at our isolated home and he really started to become anxious when I tried to plan trips there. Family started asking me to consider help in the home.
Then at the beginning of this year, George was hospitalized for the flu. I took leave from work. Delirium set in likely due to fever. We brought him home with a caregiver and hospice. We agreed to hospice even though I knew that we would have many more months and probably years before George left us but, because of the dementia diagnosis, we were still eligible for hospice services of which we were both great proponents. He seemed to be recovering really well, my strong husband. But then, on his first outing with a friend, at the beginning of February, he was left unattended for two minutes and in that span of time, fell and broke his right patella. I hate thinking of the pain he had to have experienced when all of him landed hard on that knee. He (and I) spent a couple weeks in a convalescent/rehab place and then came home and I looked hard for 24/7 care for him and started accepting the fact that this was our new reality: someone had to be with him at all times to prevent him from falling again. And, that someone couldn’t be me anymore. I had not slept more than a few hours at a time for likely at least a year as the nighttime wakefulness worsened and I was…so tired.
It was a huge process to find the right caregivers and I continued my leave from work to make sure we had the right people for the (huge) job. I’ve learned so much through that process, had to let one caregiver go, and now am very clear regarding what we need for George: someone who will above all treat my husband with respect, understanding that the dementia is not who he is, that although he would be the first person to admit that he is far from perfect (in fact, he has long told me that his epitaph is to read, “Nobody’s perfect”), he is also a truly remarkable man. I found myself introducing George to hospital staff and caregivers by saying, “This is my husband, Dr. George T. Flynn MD, former Vietnam surgeon, recipient of the Soldier’s Medal for heroism, ER doctor and medical director and the most generous man I know.” I was always gratified when hospital staff and fellow physicians addressed him as “Dr. Flynn.” He deserves that recognition and so much more.
All has worsened much more rapidly since the fall and fractured patella and the tears come unbidden as I report this. The dementia is progressing now to the point that finishing sentences is very, very challenging. He still recognizes me and most of his family, I think, a large part of the time…Transferring from bed to recliner requires maximum assistance. He incorporates news or pictures or bits of conversation into his own reality. (Just a little while ago, he asked me where the “Girl from Ipanema” is because he heard the song.)
The very worst part of the dementia process has been the new onset (in the last week and a half) of great fear and anxiety and consequent aggression. We have worked with hospice and now have him on a medication regimen to keep him calm and at peace. After a very difficult talk with the hospice nurse two days ago, I am very much committed to ensuring this peace and comfort. But, unendurably painfully, this means that he will sleep a large part of the time now. And I cried to the hospice nurse when I came to this realization; that, in order to keep him from suffering, I will have to give him seriously sedating medications. And this means that he won’t eat as much as he needs, and he won’t drink as much as he needs, and he won’t move as much as he needs.
And those months or maybe even years I thought I was going to have with him will now turn into weeks, perhaps even days.
Oh, I don’t want to lose him!
But it is going to happen. We are going to lose him. And, likely, soon.
I talked to the hospice nurse again yesterday and told him that it hurts so badly to think that our story, George’s and mine, is almost over. And, the nurse gently and immediately said to me, “I do not believe that, Renate. Your story will go on forever.”
Yes, I needed to hear that. And I believe it to be true. But it is still so painful.
I thought that I could stem the tide. I thought that, by virtue of my great love for this man, that I could hold back the waves that threatened to completely overwhelm us. But, just in the past two days I’ve realized that I have to relinquish my futile stand and let the upsurge carry us inevitably where it will. I’m not going to fight to keep my husband awake and alert and with me. I’m going to ensure that he is comfortable and free of fear and pain. My daughter, Jacque, reminded me yesterday as I wept into her shoulder that the pre-dementia George, if he could see what I am doing, would say, “That’s the way Renate. You’re doing what I asked; keeping me home and as comfortable as possible And, letting me go.”
It’s what he always said he wanted. (But, still, don’t go George, please don’t go. I am not strong and I don’t like this one bit…And, yet. It is not my place to dictate to you your desires. You made sure everyone knew that you would not want to continue this way.)
And, so now, a few requests of you, dear friends and family:
Please limit your phone calls. We are nurturing a peaceful environment at home free of loud noises, including the ringing phone. But please send letters or emails.
Visits will need to be limited. It is best, now, to think of George as you remember him to be.
There are countless stories you all hold in your hearts about my husband. Many of these are unexaggerated tales of his saving your life or that of someone you love. I myself have witnessed him save lives innumerable times in the ER. Other stories bring outright laughter. And so many of you have been recipients of George’s almost super-natural generosity. Please share your stories with me. Please let me know what it was like to attend “George Flynn Day” back in the 1980s here in Stinson or if you travelled with him on one or more of the river rafting adventures he led. Or, the time he did the C-section on the cow. I’d love to know more about all of his cars and motorcycles - which was your favorite? Which was the most strange? Didn’t he once after diving for abalone, while still wearing what must have been a huge wetsuit, stop and intubate someone on the side of the road after a car accident? And, then walk away, snorkel mask on the top of his head and flippers on his feet after the ambulance arrived? I’d love to know the details. Did you ever go sailing with him? Or, if you knew him at med school or Vietnam, please let me know your stories. He could be quirky and whimsical and serious and a real pill - if you have a story in that regard, too, please send it to me.
The hospice spiritual support counselor yesterday reminded me that love transcends our consciousness. I promise that I will read any letter or story you send to George and I am certain he will feel and know your love. Please also give me written permission to perhaps use your story in a future book on George’s life.
Thank you for your love and support. George loved with passion and counted his friends and family as his greatest blessings. Thank you for bringing him such joy. How he spoke of his friends. How he loves you…
Other than my two incredible children, George Flynn III MD, has and will always be my greatest adventure, my best friend, and the love of my life. I don’t want him to go I don’t want him to go. But he must. That’s what he would tell me. He must. And it’s time.
With love and appreciation,
Renate
P. S. Please forward this letter to whomever you think would benefit from the information.
We had four more days with George from the date of this letter.
My heart goes out to you. You wrote a wonderful letter to your friends & family, at a time when it must have been so hard to even cope with the situation. I understand your pain. My father-in-law had Lewy Body Dementia and Parkinson's. My husband had Multiple System Atrophy (MSA) and I nursed him at home until his death. We loved them, and we fulfilled our marriage vows.
Ah, beautiful friend. I so feel your love in this letter. I cried and laughed and cried reading it. Though I never knew him, I could feel him through your writing. What a beautiful man!