leiomyosarcoma caregiver

Lisa Kessler Griffin
December 7, 2019

I have been a caregiver at several points in my life for the past 36 years.  My first care giving experience began when was 23 years old. My infant son, Clint was diagnosed with a rare eye cancer at 8 months of age. As an adult, he had many facial reconstruction surgeries and was diagnosed with stage 4 LMS at age 32.  Sadly, he passed away from complications of LMS 19 months after diagnosis. 

My husband was first diagnosed with LMS of the maxillary sinus at age 36, with distant recurrences at age 53 and declared stage 4. He has been NED for 8+ years (now 62). My husband and I have been on a 25+ year journey with LMS being a continual part of our lives. 

When my son was diagnosed, I moved in with him and his wife to become a full time live in caregiver. Each time I have stepped into the caregiver roll I have learned many lessons which help me with the next care giving commitment. When caring for loved ones who walk this road the love, understanding and support of the caregiver is essential for quality of life moving forward after the initial shock (and sometimes denial) of the diagnosis.

The life of a caregiver can be fast paced, or a slow crawl…and sometimes bounce between the two. Quality care giving is not for the weak at heart and there is a definite learning curve. It can be both rewarding and heartbreaking at the same time, full of the highest of highs and lowest of lows. Listed below are just a few key lessons I’ve learned along the way, which may be helpful to those entering a caregiver roll or those who seek direction after an extended time of care giving.

  • Commit to the process. This is a marathon, not a sprint. Evaluate what this roll entails and commit to it. Identify yourself with the roll of care giver and understand what that means. If you don’t think you can, find someone who can and will. 

  • Identify your best coping skills. Do you need time alone? Do you find solace in prayer and/or medication? Do you find time in social situations to decompress? Do you need medication to help you cope and/or sleep? How about taking a ride in the countryside or a nice hike in nature? Time to decompress is critical for the caregiver. Not taking time to decompress leads to faster care giver burnout. 

  • Capitalize on available resources. Meeting with clergy or psychologist for talk therapy is helpful. Discuss fears, concerns, inefficiencies, insecurities and such and seek wise counsel. Tap into others knowledge of the care giving process to glean insight and experiences. Friends advice, books, support groups, podcasts and articles are all good resources. 

  • Make sure you are physically and emotionally fit for this journey. Know your limitations, including time constraints. Keep up with medical appointments for yourself to stay healthy. Make your health a priority.  Also, make sure you get enough rest and eat properly. 

  • Allow your loved one to lead. Never just take over everything just trying to be helpful. Your loved one should lead as to what they can and want to continue to do on their own according to their capabilities. Have a clear understanding of what their expectation of care giving is to them. Their quality of life depends on it. This tends to change, ebb and flow, with treatments and progression of the disease, or having a surgery. 

  • Have the difficult conversations. This is hard to do and usually very emotional. But it’s a necessity. Does your loved one have advanced directives?  Who has power of attorney? Are their wishes expressed in writing and where?  Is there a will in place? Are they financially ready for the cost of treatments and surgery? Is there someone else who can manage finances? These are just a few questions that need answered and addressed. It doesn’t have to be a morbid conversation, but rather factual information for those who may be left to deal with things if your loved one is not able to make decisions due to being incapacitated. 

  • Always respect your loved one’s decisions regarding their illness. It’s their life, not yours. Discussion regarding decisions is always prudent.  However, trying to sway or discredit their decision will only cause problems and increase stress.  As a caregiver, you are part of a team, not the one in charge. The final decision is always that of the patient, as difficult at times as that is for the caregiver. Accept it and support it. 

  • Know the signs of care giver burnout. It will happen if you give care long enough. Heading care giver burnout off at the pass is best practice. Don’t be afraid or ashamed to admit you have burn out. Find help and do what you need to do to make yourself better. You’re no good to anyone if you’re physically and mentally exhausted and unable to function. 

  • Have a plan and a contingency plan for appointments, transportation, overlapping care, etc. 

  • Accept help when offered. Don’t be shy about calling in favors and accepting offers from friends and family to help. Delegate a specific task and time frame, nothing open ended. It takes a village. 

  • It’s okay NOT to be okay! You’re human. Admitting to yourself and others that you’re not okay is cathartic and helps to release pent up emotions. The care giver’s responsibility is to care, not to always be the strong one. Admit you’re not okay, fix what you can, let go of what you can’t. Control is overrated. Let it go… 

  • Keep a daily or weekly journal. This will give an outlet to express things you can’t necessarily discuss with your loved one (such as symptoms of burnout). Read it regularly. This will give perspective to your journey. 

  • Humor is healing and helps put things in perspective. The gravity of disease, treatment, recovery and such is a heavy burden, not just for the loved one, but also for the care giver. Laughter is not disrespectful, but rather food for the soul when expressed tastefully. Keep conversations light. There is always another time for more serious talk when needed. 

  • Mindset is huge! A positive attitude is a tall order to keep 100% of the time. In fact, it’s impossible. But your loved one is counting on you to help them out of the depth of emotions which weighs them down. Do the best you can to stay positive and to insert perspective where needed. 

  • Be your loved ones most fierce advocate. Be their voice when they cannot speak, or are too exhausted to speak. They depend on you to have their back and take care of the things they may not be physically or emotionally equipped to do. 

  • Be a good listener. Know when to “zip it” and just listen. Listening is an art and skill many do not possess. Practice it. Listen and be empathetic. 

  • Giving our time, patience, compassion, and love is the highest form of love and service there is. It’s our highest calling. An empathetic, organized, committed and respectful caregiver is worth their weight in gold to a loved one. And whether you realize it or not, you are the example to so many who will at some point follow in your footsteps. Be and do the best you can. Your loved one and those closest to your loved one will be so thankful and grateful for your great sacrifice. 

leiomyosarcoma caregiver

I’ve made mistakes along the way…that’s life and I’m by no means the best caregiver. When I moved in with my son his prognosis was dire. Having hope in a situation like that is extremely difficult. However, I entered that care giver role committed to one thing. I was committed to having no regrets when it was all said and done. I wanted to express all I needed to express, do everything in my power to get him the best help possible, to have the difficult conversations, to laugh and love unconditionally and leave nothing unspoken. As a mother, it was the most heart wrenching things I have ever experienced. It’s still painful to reflect back on. But I can definitively say I left it all on the table… I gave it my all and I have no regrets. I did my best and beyond.

My strong faith kept me grounded and held me up when I couldn’t hold myself up. Family and friends were my rock and gave of their time and energy to listen to me and support me in ways I still can’t comprehend. I am grateful and thankful I had that very special time with my son. I wouldn’t trade it for the world. 

There is so much more to care giving and the process. It’s a very deep subject.  The above points are just a few key points which will make all the difference.  There is no handbook to be followed, as each care giving experience requires different levels of care. It’s a journey forged one day at a time wearing many hats.

leiomyosarcoma Caregiver