“Soul-mates are people who bring out the best in you. They are not perfect but are always perfect for you.” – Unknown
Something that is very important for us as caregivers and not so easy to do, is to remember, always, we are the support for the patient, but the patient needs to lead. While there will be times where we have to take the lead and “cover” for them when they are really struggling, it has to be as the 2nd Lieutenant supporting the General. In other words, you do and support in ways that you know they would expect you to based on your relationship, understandings and communication.
What I’m really trying to get at here, is that, for instance, Dave and I are as different as night and day. We very rarely view things in the same way, have the same take, solution or understanding. It has made for some pretty rocky roads in our almost 30 year marriage. But I learned when caring for my mother, and then for Dave, to keep in mind, I was not the patient. I was sharing in this journey with them, helping them, supporting them, but the choices and decisions about what to do, where to go, who to listen to, had to be their decision. They had to own it. It was not mine. I knew both of them well enough to anticipate how they would travel down that path and was able to help direct them to better choices through my research and support, but it was always within the framework of their comfort zone. In other words, I might not have chosen such a conventional medical path as a SCT if it had been me. I often tease folks that I’m way whacky, on the side of the unconventional/alternative/complimentary medicine genre. People are often surprised, given how they know me, through this blog.
But here is the thing, it wasn’t me, it was Dave. It is Dave. He has to feel completely comfortable with what is going on, where and what he is doing in his treatment. He can’t do it because I said so when he might be uncertain and prefer a different path. If you believe, as I do, that the mental/spiritual side of a person can impact their ability to recover, manage side effects, and have the treatment work, then you can begin to see why it was so important to me to find the treatment path that my husband could and would embrace. In that context, I was searching for what I believed to be the best course, without bias, utilizing all I knew and all I believed about medicine/mental/spiritual and my husband. Incorporating my ideas and opinions are ok, but the bulk of it had to be totally what was real to Dave, within his comfort zone.
Getting him to do the Hyperbaric Oxygen Treatment prior to his stem cell collection for instance, was a total “Lori Logic” sort of thing. He did it FOR me. It was harmless in the big scheme of things so it was OK. Make no mistake though, it was way out there for him to engage in such an endeavor. He would not have for instance, done well if I had pushed him to a clinic over the border that did some strange infusions to treat cancer. The patient’s belief in their treatment, their doctor, their ability to become well is part of medicine’s most intriguing mystery. It is the basis of the “placebo effect” still used in testing of new drugs and treatment as we speak. If your doctor doesn’t believe this or understand it, he is missing one of the most important aspects in medical treatment of the body. I’m not talking about your belief in God or how hard you pray and have faith. I’m talking about the fact that you are a spiritual being with a body and the body is unwell and you are doing an intervention to help it heal. Part of that intervention is medical. But there needs to be a comprehensive, multi-faceted approach, in my mind, and that includes the patient’s mental and spiritual state of being.
In light of that, my quest, my role, as I saw it, was to be unbiased in my search for a remedy for Dave, within the framework of what he would be most comfortable with, believe in, and willing to subject himself to. Add to that, family members and friends who all have their own views of things. His parents for instance, would have fought tooth and nail against me had I suggested weird, off beat, treatments for Dave in lieu of standard medicine. However, I will tell you, they paid for his HBOT for us. I presented to them the research and my concerns, and they didn’t hesitate to help us make that process of his stem cell collection and healing of his radiation damage a reality.
I had dear friends in the same mind set as me who asked, “Lori? Does Dave really have to do this? Isn’t there something else he can do?” I responded, “If it were me, something else might be the right choice, but keep in mind, it’s not me, it’s Dave.” To which they smiled and nodded and understood where I was coming from. So with all that I believe and practice, I simply put all that to good use in support of the more conventional treatment choices for Dave’s disease. I was able to offer alternatives to helping him spiritually, mentally and physically in dealing with the treatment process and recovery. I fully disclosed this to his doctors, which I rarely do in my own healthcare conversations, that I didn’t want anything I did to interfere with what they were doing. I told the doctor straight up, “I’m not interested in your opinion on these things. I just want to let you know, it is my way, but I don’t want to interfere with what you are doing. So we need to come to an understanding and have a compromise here.” He was terrific. He told me the Director would think I was nuts, but I knew that all ready. He’s an atheist. We laughed and I said, “Well he’s not our doctor, you are.” He asked me to refrain from my witches’ brews while Dave was receiving his chemotherapy. After he was finished with it, a couple of days out, I could resume. Fair enough and completely reasonable. I have practiced this process since. Our doctor then did something surprising. He provided me with data about Ginseng to improve fatigue and studies conducted to substantiate it’s claim. He began to be in my mind, a good doctor. Adjusting to his patient and the caregiver. Delivering care based on our wishes and beliefs. Not judging or belittling, but offering his expertise to the mix in a helpful way. It provided me with guidance and it gave Dave GREAT comfort to know that I wasn’t operating outside of the comfort zone of his doctor.
So as you travel down this road of caring for your loved one. Be sure to remember, always, it is their journey and you don’t want to complicate it by imposing your views on them in a way that causes them uncertainty or added stress. I will always tell Dave what I know, what I think, what I hope, but end with, “But it’s your decision Dave, and I will support you fully.”
When my mother was dying, she began to have anxiety. The cancer physician immediately wanted to prescribe Paxil. My mother knows I’m not a proponent of psychotropic drug use how it is so broadly used today, and she turned to me and said, “Lori? What do you think?” I responded, “Mom, it’s totally up to you. I want you to be comfortable and I will support whatever decision you make.” And I meant it. As it turns out, the hospice nurse figured out that my mother’s anxiety was not an emotional one, but actually resulted in her inability to breathe. The doctor figured she couldn’t breathe because she was emotionally distressed, and it turns out that with a very simple question, the nurse was able to uncover it was the other way around. The Paxil actually wouldn’t have helped her situation at all and I was always very grateful to this hospice nurse’s insightful experience. But never did I impose my own personal beliefs on my mother, her doctor, or the hospice nurse. I just wanted my mother’s journey to be as comfortable for her as possible – in the framework of “her comfort zone”. That was my job. She was in the driver’s seat and I did everything I could to empower her behind the wheel of her own life or the ending of it.
This can be a delicate dance between you and the one you love. Your own ideas and belief systems are ever present as you try to do everything you can to save their life and help them through the process. Juxtaposed with their own ideas and beliefs of one who is emotionally and physically compromised. It is, like many things in our lives, a work in progress. Dave and I still have hurdles to overcome in our journey with Myeloma. But…
at the moment, we are dancing and it feels really great!
Good luck with your caregiving efforts. I suspect you are doing a fine job and I hope that this helps put in perspective some things you may or may not have been struggling with. We are thrust into this role and it can be quite challenging at times. Although most of the caregivers I have had the pleasure of knowing or corresponding with, have also found it incredibly enriching and rewarding. It is a gift we are giving of ourselves for someone we love. My hat is off to you! I’d be proud to have you in my fox hole!