Post #32
Considering the increase in deaths throughout the world in the past few months, I feel that grief is a timely topic. There are many situations where the act of caregiving occurs because death is imminent. When faced with this situation people usually begin to grieve the inevitable, which can be especially difficult if you are caring for a family member. Besides Covid 19, both cancer and Alzheimer’s are all too common these days, as are a host of other illnesses/conditions that create grieving situations for family members and friends.
(photos: My mom, ages 2 and 82)
Of course, those family members who are far away are grieving as well as those who are everyday caregivers. Having lived in both situations, I can say that both have their specific difficulties. I lived 300 miles from my Dad while he was declining from Alzheimer’s, and I frequently spent the night crying out of frustration that I couldn’t do anything to help. I really wanted him to come and live with us instead of a nursing home, but I was working and keeping up with my full-of-life teenagers. Besides he needed to be close to Mom. Part of me wanted to go home and help, but I couldn’t leave my immediate family for a lengthy period to help care for him. I think I also mourned deeply because this was in the late 1990s, and we didn’t know as much about how to care for someone with Alzheimer’s, which caused an even greater sense of hopelessness. The care facilities he stayed in were rather depressing. When he was first placed in a memory care unit, he spent his waking hours walking the halls trying to find home. He cried when each of our visits came to an end. It really broke my heart that I couldn’t do anything to give him a happier life.
On the other hand, my situation was perfect for caring for Mom when she needed me. It was now 2012 and the kids were living their own lives. My work was flexible, my husband supportive and trained in the medical/counseling fields. Because I could be involved in her care, I didn’t outwardly grieve as much—I was too busy. I think that being able to find ways of making Mom’s life enjoyable in her last years helped me to grieve less. However, don’t get me wrong, the grief was there—especially when an obvious decline occurred. And there were many.
In prolonged illnesses where definite declines can be seen, there are always new normals to get used to. Caregivers can become depressed thinking about the differences in their loved one’s life. Perhaps they can no longer walk or travel . . . or they experience some other large change. Some major changes that Mom went through were related to her self care. It is very difficult to see someone who had always been fastidious in cleanliness and clothing become oblivious to or even aggressively against any hygienic tasks. These new attitudes and/or behaviors produce within the caretaker and other family members both an anxiety to fix the immediate problem and a dread that the loved one is one step closer to death.
Because I’m a problem-solver by nature, I tried many ways of dealing with Mom’s hygienic anxieties. Sometimes they were successful, but most often not. I learned to live with the new normal and change my expectations. Minimal requirements (as advised by the doctor) were now okay. I focused on ways for Mom and I to enjoy this opportunity to live together. Focusing on the things she could do (work children’s puzzles, listen to music, watch Andy Griffith), rather than grieving over the loss of past skills, was better for my emotional health . . . as well as Mom's.
*One grief a caregiver may need to work through is their loved one’s move to another environment where their needs can be met as they decline. Some of us would like to be completely involved in our family member’s care, and we grieve this loss of responsibility and intimacy. Relief may be mixed with the grief, which can cause us to feel guilt as well. I battled these strong feelings by setting up Mom’s new room in a way that would help her feel comfortable, and I visited as often as I could given my own work schedule and health issues. Although I couldn’t escape grief and other emotions completely, I tried to focus on ways that I could continue to make Mom’s life fun and relaxing--through communication with the staff, providing things she liked to do, and enjoying time with her biweekly. In Mom’s last years I I had the opportunity to create joyful memories that I can hold onto for the rest of my life.**
When Mom died it was totally unexpected. Two days before, I had an unusual afternoon free of work, so we spent a relaxing three hours together. Then Thursday morning I received a call that Mom was choking and the ambulance had been called. It took two minutes to throw on clothes and thirty minutes to drive across Austin traffic to the memory care facility. She had been placed on life support because they hadn’t located her DNR. Actually, when I signed the DNR it was for natural deterioration— not for choking while she was still able to enjoy life— so I was relieved that the papers hadn’t been found. The support was too late, however, and in the hospital they found there was no brain activity. After calling my kids and siblings, and singing some of her favorite songs together with my husband and my daughter, I said a tearful good-bye as the life support was discontinued and she breathed her last.
Does the grief for a close loved one ever dissipate? Some experts say that it remains, but that most of us eventually allow the pleasant memories of the past to override the pain of loss. For some mourners the belief in the afterlife gives hope of seeing their dear one again. For me, I have always felt she is still here with me—a feeling I might not have had if I hadn’t been so close to her in her last years. Because of those four years of caregiving, I have a clearer understanding of the depth of a human relationship that lasts throughout life. I rejoice in past memories, rest in the feeling that her life continues in me, and have faith that one day I will see her in eternity. The job of a grieving caregiver is tough, but it certainly has its rewards.
*I discuss this grief over a change in situation in a previous post
**Look through my other blog posts for ideas about setting up a room in a care facility, ways to enrich your care receiver’s life, etc.
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