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“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!


11 Responses to “What is good for you, may not be ideal them”

  1. Angie Murray says:

    Lori…you are the best!!!!!!!!!!!!!!!!!!!!!!!!

  2. Rene B. says:

    Very insightful “stuff” Lori, thanks!!

  3. Sarah Gorrell says:

    Great info! Bob certainly knows what he wants, and has finally found his voice! For that, I am so thankful.

    I really had to “put my foot” down where some others were concerned, and ask that they keep their opinions (about what he should or shouldn’t do) to themselves.

    Happy Easter to both of you!

  4. karen says:

    hi lori, my husband was dx’d in 2009 – he turned to put something in our jeep, and his left femur snapped in half. it was our 42nd wedding anniversary. the first 6 months were ones of trauma after trauma – extensive surgery to rebuild his leg, finding it failed on our last vs. with the onco-ortho doc, going back for more surgery and discovering several large tumors in his thigh, which nearly resulted in a total emotional breakdown for him – formerly a corporate attorney, a teacher and a beloved and wise patriarch of our family – our rock, protector and all round wonderful husband, father. it took me a while to realize that the shock of what had, and continued to happen for many months was so layer-upon-layer, that the anger, fear, loss of independance, and whole new world of physical and emotional pain left h with little ability to cope with any kind of research into his illness. he was truly one who had a need to NOT KNOW. i, on the other hand was a practicing hopice nurse at the time of his dx. i had to leave my job and be a full time caregiver, a role i was more than willing and able to take on – we’re married now nearly 44 years, and i’m still gaga for him! my need was to know EVERYTHING, and added to my professional experience of nearly 30 years as a nurse in the oncology/hospice arena, our family was extremely relieved that i would be h’s advocate and caregiver. when i recognized that h was hurting so badly, i sought out the professionals i believed could render the best support – h was having NONE of it. i soon realized we both were confined in seperate places, definitely not on the same page – he had his issues as a newly dx’d cancer patient/husband, and i had mine, as the WIFE of a newly diagnosed cancer patient. it took me a long time, even having counseled many spouses who had this same, sudden, disturbing seperation, unable to come together to grieve the loss of so many altered hopes and dreams – to realize that sometimes we cannot come together and meet each others needs. it was a real WTF???!!! moment to realize that after all the years we had been together, always there in every way for one another, now to know we each had to own our roles, and needed to be able to find ways to cope in our own way, in our own time. i have found it both a blessing and a curse (much of the time, a blessing for h, and a curse for me – in darker hours!) to be a nurse, let alone a hospice nurse. every caregiver, at one time or another, has felt the burden of having to be the “heavy”; i remember reading a post you wrote about trying to help dave acheive stability and balance with bowel movements, the frustration with his lack of cooperation, and feeling like you wanted to throw up your hands and say, go ahead, be constipated! i really loved it, really related to it.

    but i had to find my way through to acheive a delicate balance in dealing with all of what i know professionally translated into personal expereince. being in those 2 arenas at the same time can really mess with your mind, and your emotions. and it can be equally uncomfortable and downright maddening for the poor soul one is tending to. i would say what most always saves the day is to be able to look though the eyes of compassion, to realize h deserves to feel he has the ministrations of his wife who adores him, his best friend who has shared a life of great happiness as well as deep sadness, successes and failures, and that the love we are so blessed to have is what is most important in guiding my care of him. sometimes, in my desperate search to find and give the best care for h could have felt to him as though he was being “managed”. but thanks to our incredible good fortune, we were able to find the finest doctors, on the cutting edge of research and treatment, excellent facilities for surgery, physical therapy, and treatment for mm. i trust them, and even more important, h trusts them. h still is not interested in looking up things about his illness, following blogs, et. al. but after a successful 2nd surgery (he now has a prosthetic femur and knee), initial treatment for 16 wks with rev/lan/dex, a 1st asct in september 2010 (very good response), and a tandem asct 2 weeks ago ( at the initial stage, an even better response) he’s come a long way in becoming more involved in his own care. for example, he was given options – maintenance, wait-and-see, et al., as we knew he would prior to the 2nd asct . the situation of being in the position of making such an important informed decision was one that provided us the opportunity to work as a team – i took the research role to gather information, layed it out so we could discuss it and formulate any questions, but h was the one who ASKED tHE QUESTIONS at the next meeting with the myeloma specialist, MADE THE DECISIONS, and …well, it was a beautiful thing. and it works just fine for us. h relies on me for the leg-work and values my opnions, but he feels much more empowered now to be more of an advocate for himself, and to participate in his own care. i have gradually shed the role of over-nursiness, and it has been a great relief to do so. but it’s been a helluva rocky, lonely, and frustrating road – both for h and for me. much of the time i’ve felt bewildered and lost – it’s very hard to know things one wishes one didn’t know. and it’s very hard for for one’s partner who’s been devastated by receiving a diagnosis of the magnitude of multiple myeloma to feel they are simply not allowed to have a rotten day, pull the covers over their head, and say the hell with it. “in the end, in the grand scheme of things…” – this is how i often frame questions in my mind about how to deal with impulses to intervene. this, along with a healthy dose of trust, empathy, and undying respect for h’s dignity and his right to choose his own destiny has helped me navigate though a lot. i hope this response helps someone else who is struggling through a similar situation. it would be so wonderful to know that sharing our experience could give insight, comfort, and some measure of peace to someone who is hurting and feels adrift in a sea of rough and complicated waters. i wish you and dave and your family all the best, and want you to know your posts have been like a life-line to me over the last 19 months. your honesty, passion, determination, and committment to helping others is both an inspiration and a great comfort to so many people. i hope you feel tremendous fullfillment in being able to reach out with your amazing talent for writing, to provide such a wealth of information and personal experience. i think of you often with gratitude, and will keep you and dave close to my heart, wishing you both continued good health and a most happy life together. love,
    karen

  5. Lori Puente Lori says:

    Dear Karen,
    THANK YOU SO MUCH for sharing your struggles and ultimately your victory as a much more seasoned caregiver than I. Reading your story and all your previous experience and yet, a very similar struggle for so many of us, will help so many understand that the demons and difficulties they are facing is not a lack of background but simply tackling a new and difficult (putting it mildly!) situation that seems to just clobber us and our family over the head from behind. It turns our little worlds upside down and is so multifaceted we aren’t really sure which whirling debris to grab first! The key I think is to grab something and manage it and grab the next one. Using our instincts and life’s experience to get us through.
    I’m touched beyond words that my blogging and spilling out of my emotions and frustrations, successes and good news, information and suggestions has been of benefit. It is what keeps me at it. I didn’t want to become a Myeloma Guru, but I did want to ‘give back’ something after all that I had learned on this journey, about myself and about Dave. Being in a place like Little Rock and listening to so many of us in this journey, it became clear to me, that while our stories are different, they are insanely similar!
    I had some support from friends and some who did not, wanting me to get on with my life. They were both right of course, but my purpose and criteria was simple. It will be healing for me (lord knows I needed some healing) and if in that effort I help others it is time well spent.
    So thank you for putting your story out there for my readers to be able to take a breath and say, “Oh, it’s not just me!” and for me personally, thank you for letting me know that my time here has made a difference in your coming to grips with your role as a caregiver, which by the way is incredibly impressive!
    I’m happy to hear that your man is doing better. Dave too was able to take on more of his own caregiving as he moved out of the pain and devastation and began to feel better and have some hope of a life.
    We are quite blessed you know. Juxtaposed against the ones who go through all of this and don’t come out the other side and go home with their loved one recovering, but instead grieving for their loss, is very painful. My time with Dave now, is the most fulfilling and happiest it has been in our 30 year marriage. It changes you.
    Love,
    Lori

  6. Sarah says:

    Karen: Wonderful – wonderful!! You put into words, what we all feel. Just like the MM patient, we caregivers are “up” and then we’re “down”.

    We do this because we love, and strangely enough…..MM makes us love even more. After this disastrous diagnosis….nothing is ever again taken for granted!!

    Blessings

  7. Angie Murray says:

    Karen,

    Thank you for sharing your heart-felt response on Lori’s blog. It is a great bunch of people who follow her and wait for her inspiration! :-) But I just wanted to comment that your words were wonderful and it is comforting that even an experience nurse has some of those same “lost” feelings as the rest of us. It is a difficult road and I’ve only been on it for 13 months and I’m “tired”. But we all “suck it up” and continue living and caring and loving with the HOPE that soon a cure will be found. Please stay in touch.

  8. karen says:

    hi lori, your lovely message about my story was overwhelming; i thank you with all my heart for taking the time to let me know you understand, and for all your support and encouraging words. when i sat down to write it, it wasn’t a story at all; just a swirling of unconnected thoughts, and a feeling that h and i had come through something deeply healing. often, i feel things inside that are too emeshed and i NEED TO WRITE to make sense of them. and i’m guessing YOU know exactly what i mean! this morning i shared what i had written with h – we both cried. and he was so touched at your words to me as well. (also he was way bowled over that i refered to him as the “patriarch” of our family. in a good way, though.) i am so grateful that i could come to you and find the way to get all we have been through sorted out. thank you for being there, and know that all you have invested, emotionally, physically, and spiritually in writing your blog is such a gift to those of us who are at times struggling to keep afloat. love, karen

  9. karen says:

    hi sarah – thanks for your comment! isn’t it an amazing thing how bonds form and love can flow in such a heartfelt way; no one who hasn’t crossed over to the place we now find ourselves could ever understand how having something like myeloma in our lives really transforms us, makes our shoulders and our hearts wider, and so much more appreciate of the everyday gifts life offers us.

    hugs, karen

  10. Lori Puente Lori says:

    Karen, Please do share your insight and battle scars with others here anytime! The dialog is often more insightful than what I express. Several people called me and wrote to me about your entry. They thought it was “amazing” and it moved them deeply.
    Like many, I have no support group nearby and have found it online. I have learned immensely from all of us on this journey in “Myelomaville”.
    Give that big guy a hug from all of us. Thank him for doing the best he could and thank you for helping him get through it.

  11. karen says:

    hi angie, – just want you to know that if my words gave even a little comfort and reassurance, i am so thankful. no one knows “tired” like a caregiver knows tired. there should be a special name designated for it! don’t you often find it’s true that taking a break to do something nice for yourself is so uplifting, so NECESSARY, but your just too darn TIRED to do it?! i will send every positive thought i can to help you keep on the road of living, loving and caring, with hope that there WILL be a cure. meanwhile, be good to yourself, take any break you can to renew and refuel yourself. hugs, karen

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