Here’s an article written by Ann Ludwig, leader of the Phoenix-area PSP support group and breast cancer survivor. I believe it will be published in the CurePSP newsletter at some point. Ann sent me an advance copy; we were in touch last year to make “emergency” arrangements for her husband’s brain donation as it didn’t appear that he would get out of the hospital. When she contacted me last year, her husband Tom was in the ICU and there was discussion of a ventilator. In the article, she notes the inadequacy of Tom’s living will. He was placed on a ventilator, and had a tracheotomy. Surprisingly, he did get back home. And, more surprisingly, she recently weaned him from the assisted ventilation. It’s not clear from Ann’s article what sort of quality of life Tom has at this time.
This may be one of those articles that is good to discuss as a family. If you are in the ICU with aspiration pneumonia, would you want to be put on a ventilator if the thought was that this was a temporary measure? What if you’d be on the ventilator for 9 months?
Lots to think about….
by Ann Ludwig
LOVE-TRUST-HUMOR-PATIENCE…one can not give or accept care and function fully without all four. The following is a brief account of my individual journey as I continue to partner husband Tom Dezelsky along this rocky path strewn by the presence of Progressive Supranuclear Palsy in our lives.
Here I am, 76 years old, and until a dozen years ago ‘caregiver’ was a sad word about some unknown good soul caught turning his or her life over to the integrity of those infamous words…’til death do us part…in sickness and in health…for better or worse….and so on. My resume reads wife, lover, mother, grandmother, friend…professor, choreographer. I can now add caregiver. Odd one out is choreographer yet I would argue that profession, especially, has helped foster in me the ability to think outside the box.
And how important that ability has been. There are suggestions, good ones, from many sources, on procedures to follow, but almost always a ‘slight to significant difference’ in the many faces of the disease leaves the nonprofessional, the caregiver, feeling insecure and stressed about the best actions to take .
When was Tom diagnosed? Seems such a simple question…yet the diagnosis and the disease don’t necessarily start on the same line; reminds me of a track meet where starting points on the oblong circle track all look different yet the finish line looms large and inevitably the same. In retrospect it seems Tom has been in the grip of this disease for at least eight or nine years. I found the symptoms which matched Tom’s actions on the internet, printed out and took to Tom’s primary physician, neurologist, and eye doctor. The physician had not heard of the disease; neurologist said couldn’t be; eye doctor considered the possibility.
Looking back I see images of Tom leaping from rock to rock in pursuit of the trout….its hiding place…the deepest hole…agile, surefooted, quick to change directions. The initial subtle loss of those capabilities did not go unnoticed by me, but too often unrecognized by him…he was sure this time he could make it….eventually from chair to walker to kitchen window to look out at the unusual desert storm. Then 911, again. Balance turned to missteps, falling, need of tools/walkers, wheel chairs, then loss of any of his individual input into getting around; finally almost total loss and in the hands of others.
Tom was on the davunetide clinical trial at Mayo Clinic. It involved periodic sessions with a battery of tests, both physical and psychological. Within the last few months the trial was aborted “although davunetide was safely tolerated by those participating in the study, the drug displayed no significant effect in relieving the symptoms of PSP or slowing the progression of the disease.” (CurePSP Newsletter, Jan/Feb 2013). Tom was in the study for eleven months; he was notified in February that he was taking the drug and not the placebo.
June, 2012, Tom entered the hospital with aspiration pneumonia, oatmeal in the lungs, and started the beginning of what will surely be the last stage. ICU, then a nursing facility, the medical wisdom that he might never go home; a tube for nutrients to prevent more episodes of aspiration pneumonia; a trach to become his mode to insure a living breath.
Procedure for the trach and tube required sedative. Doctors associated with that procedure, but unfamiliar with PSP, felt that Tom was taking much too long to wake. Whenever doctors came through Tom silently lay there listening, I know, but not with any response. On one occasion after a doctor left Tom opened his eyes and shook his hand from side to side with, familiar to me, his ‘what is that all about’ gesture. I finally came to taking video with my smart phone to show him awake and exercising his feet, gesturing thumbs up or down in response to my conversation. The medical profession is late to the little information that is known about PSP and often makes assumptions based on a thumbnail sketch.
But what is his wish? He signed a living will tied to brain function, a traditionally written document of matter over mind…”if I can’t do a, b, or c then let me go…wouldn’t want to live like that” implied in the text. To me, those phrases are overrated, like ordering a new blouse online. Looks great until it is put on.
Finally, home for that illusive and ill defined quality of life; the caregiver, the lover, the friend, the family becomes the quality of life that is directly reflected in the patient. Tom’s past three or four years have served to adjust his responses and some sort of acceptance to a different way of being. We have both become acclimated to making this new normal a means of existence. He still hugs…still puckers up to give me a kiss…my measuring stick of his presence. He allows my bad jokes, my singing over the constant music we play with only that hand wave talked about earlier putting a perspective on it all.
Where am I, the caregiver, in all of this? I had breast cancer from July 2010 thru March 2011. As caregiver, however, it was necessary to continue ‘caring’ thus surgery, chemo, radiation was business as usual. Tom went along to all the radiation treatments…(66 of them). He sat in the car, it was the cool time of the year in AZ, and listened to audio tapes until I returned. Maybe all that is saying is that thinking outside the self helps maintain a positive approach to the circumstances in which one exists.
Tom is the journey, I am the sub-journey. From the time my mother moved into the Alzheimer’s section of an assisted living unit in her mid eighties…I made it my ‘pleasure’ to call my dad every day…usually around 4 or 5 to miss the long silences that came as he watched the Diamondbacks play ball. Now I know how important and what a gift that was to myself and to him. That is one of three best things I take credit for. Add having something to do with bringing three kind and courageous children into the world, and now, being a partner in Tom’s journey. I don’t want him to go this alone…I am there by choice; it is a quality of life choice for me.
But the big question hangs around the edges. How will Tom leave us…we have come so far yet gained so little. He will die in this house…with me and Samantha, his loving and faithful dog…like in the old movies. I feel satisfied that will be OK with him much as he loves the whole extended family. We always did make a good team.
With the blessing of the doctor I weaned Tom from the vent assist program (SIMV) to the machine that sounds when its settings are not being recognized yet does not jump in to help. That made him qualified for hospice philosophy and an assist on the front line, already fortified with some very caring and helpful others.
This is the second to the last missing link to the final chapter. Then comes the donation of his brain to help further investigation into what and why and when and who. Finally, closure that all has not been in vain…someone out there is finding an answer.
With both curiosity and a desire for sharing and comparing hope and information about the struggle, Tom and I, in April of 2010, at the suggestion of the CurePSP office, formed a support group in Arizona; sessions are held at the Pyle Adult Center in Tempe the first Saturday of every even month. Caregivers, patients, family, and medical professionals are urged to attend. We have had as few as six and as many as 26 people present. On occasion a speaker knowledgeable about some of our needs comes to answer questions, share information.
Talking with the Support Group I continue to be impressed how each caregiver responds to his or her spouse, friend, or family member. We all have questions, yet most have a sense of boldness in the face of undetermined solutions.
LOVE, TRUST, HUMOR, PATIENCE are working tools that support the caregiver’s back. NO doubt about it…I would not choose to write the story this way. It is a different world; no sense trying to make it the world you once knew. That will rob you of the possibilities, without a doubt the challenges, that do come with living outside the box.