I hadn’t planned on writing this blog. It would be easier to simply close this chapter of our lives and move on to the next thing. It’s not a travel adventure and it’s not funny, so you may want to skip it altogether. But I’m going to share these experiences because writing is therapeutic for me, and I’m in need of therapy. Also, our experiences may help others facing similar challenges or decisions in the future.
My precious mom died a few days ago at 77 years of age after a long battle with cancer originating in her bile duct. My dad, sisters, and wife, along with a handful of other caregivers, joined together to care for my mom over the past several months. I will spare you some of the details because they are too sensitive and not appropriate to share outside of our family. I really just want to reflect on some of the decisions we faced and some of our lessons learned from this experience.
- Be Tough. Watching a loved one slowly die is a gut-wrenching, emotionally draining experience. Being a personal caregiver for the person, and not just a visitor to a hospital or nursing home, makes the whole process even more difficult. If you ever have to do this, you better come with a soft heart surrounded by a layer of toughness, because this will test your compassion, toughness, and resiliency like nothing else. Initially, I compared the process to that of parenting an infant or toddler. But there is a key difference. In most instances, the parent of a baby is anticipating that their infant will grow and reach milestones like their first step, first word, or first day at school. That’s pretty motivating. With a dying person, the milestones involve a progression of physical deterioration and other seemingly “bad things”, at least until the very end when your loved one’s pain is gone. Although the period of time was much shorter, we found caring for a dying parent much more difficult than anything we had to do while raising our two sons.
- Weigh the Care-Giving Options. It seems there are 3 basic ways a person’s life can end. 1) quickly, as in a car accident or sudden illness that takes their life immediately or in just a few days. Case in point: My paternal grandfather was in seemingly good health for a 79 year old, but died instantly following a heart attack while out walking his dog. 2) a prolonged illness in which the final weeks, months, or years are spent in a nursing home of some type. This was the case with my other grandfather, who spent the last several years of his life in a nursing home suffering from chronic health issues. 3) a long-term illness in which the person remains at home for several months or years and is cared for there until the end. The decision on whether to care for a loved one at home or place them in some sort of facility can be really difficult. We seriously considered putting mom in a nursing home and even visited a couple of local facilities. But, ultimately, dad decided that he, along with his family, hospice workers, and friends could work together to provide for my mom at home during the last several weeks, and that’s what we did. I’m glad we did that, although there were moments when I would have voted for the nursing home. Dad even said that had it not been for his network of family and other caregivers, he would have had to place mom in a local facility. Each situation is unique, but I think you have to factor in the condition of the person, type and expected duration of care, availability/willingness of family and other caregivers to help, availability of long-term care insurance, and possibly other financial considerations (the two facilities we visited would have run over $6400/month, although that was not really a factor in keeping mom at home).
- Minor in Pharmacy. If you decide to care for a dying person at home, you will need to become proficient in understanding and administering a host of medications. Our hospice nurses were beyond wonderful and guided us through the process. However, on many a night, we had to make judgment calls on the amount or frequency of morphine and other medications, within the parameters set by the nurses. This becomes even trickier when your loved one can no longer verbally communicate pain levels, and so you must rely on signals like a furrowed brow. Another difficult stage to navigate is when the person is medicated and cannot think rationally, but is still mobile. If you’re a heavy sleeper and/or are not physically in the same room as your loved one, you may need to consider child-proof locks on doors or turning off the gas to the stove. This will help prevent your loved one from roaming at night and harming themselves or others.
- Work as a Team. Difficult end-of-life situations can either bring a family together or tear it apart. I’ve heard horror stories of families fighting over a loved one’s possessions or arguing over the care-giving options. Stress can bring out the worst in people. I’m so thankful that was not the case with my family. We came together, worked as a team, and encouraged one another. One of the benefits of this is that it allows others on the team to take much-needed breaks from caregiving. Janet and I were able to go on several morning hikes, and take quick trips to Nashville and St Louis, because either my sisters were coming in for the weekend or some other caregiver would be there. We were also able to get my dad out of the house to attend church services and for two rounds of disc golf, which allowed him to get a breather and re-charge his spiritual battery. There was also a stage where mom would call out for assistance every few minutes for hours at a time, and we took turns on sitting with her and responding to those calls. We were a close family already, but this situation brought us even closer. Our team was also blessed with some amazing, non-family caregivers…Lynn, Sharon, and Faye from AseraCare Hospice-Nashville and Tina from my parent’s church. In addition to caring for mom, they were constantly encouraging us and were sympathetic to our needs. Thank you, ladies.
- Marry Up. On a similar note, I couldn’t be prouder of my wife, Lil Jan. If you want a classic case of rising to the occasion, she is it. I well remember her wedding vows to me, which involved loving, honoring, and cherishing…for better or worse…in sickness and in health, etc. But the context there typically involves doing those things for the spouse…not necessarily the mother-in-law. She did very difficult, exhausting things for my mom that went well beyond even a broad interpretation of those vows. She had my mom’s back and she had our family’s back. Her love and compassion for my mom was extraordinary, and truly modeled the unconditional love of Christ. We sometimes kid Janet because she has a “bossy gene”, and both sides of the family will often defer to her on what restaurant to go to, where to go on vacation, etc. It takes the pressure off when we “just let Janet decide”. Whether we call that bossiness or simply leadership, I can only say her determination and boldness in ensuring mom got the right care and right dosages…often at 3 in the morning…was needed and appreciated. I married an amazing woman and I will always remember the compassion she showed my mom.
- Expect Bizarre Words & Actions. When cancer spreads throughout the body and your loved one is taking morphine and other medications, they will eventually become “not themselves”. By that I mean they may begin to say things or request things that are bizarre or nonsensical…similar to a heavily medicated toddler. As an example, my mom began to request Oreo cookies almost hourly for several days, and ultimately went through several packages of them. I don’t think I’ll ever be able to look at a package of Oreos again without thinking of her. They also might make odd requests, like wanting to sit in the car at midnight or walk up and down the steps at 3 in the morning. Towards the end, I found myself regularly saying, “that’s mom, but that’s not really mom.” I guess my point here is to not take things said by a dying, heavily medicated person too literally or personally. On the other hand, don’t be too dismissive, as your loved one might surprise you and recall a sweet memory from the past as you sit and talk to them.
- Cards Still Matter. The outpouring of love and support for my mom and our family was so uplifting and encouraging. As an example, we used to worship at a church in Brandon, Florida, and I was generally aware of and appreciated a card-writing ministry done by several of the ladies there. But when you are sitting next to your dying mother and see numerous cards from these same ladies…ladies who are 1000 miles away and have never met her…it takes on a whole new meaning. So thank you Bell Shoals ladies! And thanks to all the others who called or sent a card, text, or Facebook message. My dad also mentioned the support given to him by his dear friends, the Balls and the Elders, and others in the neighborhood who have waved at him, said an encouraging word, or provided food. Just as we rallied around my mom, I feel like our friends and extended family rallied around us.
- Do Your Homework. For anyone facing a similar situation, I recommend doing some reading on care-giving, end of life decisions, and the specific medical condition your loved one is facing. One of the best things we read was a pamphlet entitled “Gone From My Sight, the Dying Experience” by Barbara Karnes, RN. It was given to us by the hospice ladies and describes in some detail what to expect physically and behaviorally from a dying person. We found it to be highly accurate and we felt better prepared having read it. It also allowed us to get a general idea of how much time mom probably had left, although that is an imprecise science.
- Decide on Burial Plans. Your loved one may have specific instructions on this or may leave it up to the family. Some families may live in the same town their whole lives, and have a family burial plot on their land or a nearby cemetery. That is not our family. We have lived all over the world and consider “home” wherever we are currently together. Some families want to have elaborate, expensive funeral services with all the bells and whistles. Nothing wrong with that, but that’s also not our family. Some families like to honor or remember their loved ones who have gone on by travelling long or short distances to a cemetery and placing flowers at a tombstone. Again, nothing wrong with that, but we really don’t do that. We have grandparents we love dearly and remember often, but we rarely drive to their cemeteries for a visit. As for great-grandparents and more distant generations, I don’t know where they are buried. Together, we decided that mom would be cremated. Her soul, the thing that makes her who she is, has gone to be with the Lord, and her physical body is just a shell. God will be giving her a new body when Christ returns some day. Mom’s ashes will be placed in a very special wooden container hand-made by Ellie, her granddaughter. Dad will place that container on the mantel in his living room, and some day his ashes will join hers in that same container. At some point we will spread a few of those ashes at a nearby park or waterfall and say a prayer for mom. And with the family’s permission, I plan to carry a teaspoon of ashes with me during my 2180-mile hike of the Appalachian Trail next year, and spread them at the summit of Mount Katahdin in Maine. As for the ceremony, we have planned a small service at my sister’s farmhouse in Franklin with family, and a few friends and caregivers. We’ll sing some of my mom’s favorite songs, read some of her favorite Scriptures, and take some time to celebrate her life. There will be some tears, but there will also be joy as we reflect on her life and our precious memories with her. As for the money that will be saved by not having a fancy funeral with bells and whistles, my dad has an interesting plan for that money that will be revealed in time.
- God is Working. It has been amazing to see God work throughout this whole experience. It was God who placed on our hearts a desire to leave Florida and travel the country in an RV, which positioned us to eventually provide extended care for mom. At the time, we had no idea God’s first mission for us would be spending the summer helping my parents through this challenging time. It was God who guided us through all of the previously discussed decisions to make, and who gave us just enough energy to get through a difficult day or night. It was God who worked through the hearts of our extended family and friends to encourage us with cards, calls, and visits. It was God who arranged schedules and guided travel decisions so that we would all be there at mom’s bedside, praying and comforting her and each other, during her final few moments. It was God who ultimately answered our prayers to take mom home with him, so that there would be no more pain or suffering. Sometimes sickness and dying can cause us to question God, and there were times when we questioned God’s plan and timing. But mostly, we just stepped back and let God work His plan on his terms and timing. Our faith in him is even stronger, and we look forward to the day we’ll be reunited with mom and see God face to face.
I apologize for this long, rambling blog. It was good therapy for me, and I hope it may help someone as they face similar circumstances and decisions. As for us, Janet and I are taking dad for some Mexican food tonight, followed by Wednesday night Bible study at his church. After church, we plan to watch McFarland, USA, and I suspect dad might shed a few tears when the overweight Hispanic runner helps his cross-country team win the state championship. This weekend we’re taking dad on a road trip to St Louis to hear Kyle preach, which will be really cool for him (and us). Yes, we are in a good place now, and we know mom is in an even better place…a place with no morphine, and lots of Oreo cookies.
Big Steve
P.S. A link to mom’s obituary… http://www.cremationsocietyoftn.com/obituaries/Margaret-Peggy-Johnson/#!/Obituary
