Preparing for Loss
I try to stay optimistic about the future, but occasionally, an event reminds me of how tenuous life can be. One of those events happened recently with the passing of a fellow caregiver’s spouse.
Similar Health Histories
About eight years ago, I met a caregiver while my husband, Lynn, was an Intensive Care (ICU) patient. Her husband and Lynn shared similar histories (both had Primary Progressive MS-PPMS), though her husband was much younger. During the month Lynn was a patient in the ICU, the caregiver and I had many conversations about the challenges of being a spouse/caregiver. It felt so good to talk openly to someone else about how I felt about my new role, especially about my fears about Lynn being in the ICU. Those discussions led me to write a blog about the struggles of being a caregiver, hoping to connect with other caregivers in similar situations.
Primary Progressive MS Decline
As the years passed, the ICU caregiver and I stayed in touch. We knew from periodic contact that both of our spouses had continued to decline in their physical abilities. I followed her family’s activities on Facebook, and she did likewise with mine. A few weeks ago (early 2019), she posted a short notice that her husband could no longer tolerate being out of bed. She opened a CaringBridge page and notified friends that they had made the decision not to return to the hospital for further treatment (i.e., he was in hospice) and asked for prayers for the family during the coming weeks. He died not long after that notice.
Right to Complain?
Living with Primary Progressive MS brings many challenges. I always hesitate to write about the difficulties of being a caregiver because I know some question why I have a right to complain. I am the healthy one, after all. I don’t hurt every day and struggle to move or feel terrible half the time from MS symptoms. I should be embarrassed to complain about anything because I can leave home walking, feed myself, see our grandchildren at their homes, and perform my own care. Right? However, let me make this clear to those who believe I have it so easy in comparison. When someone is alert and on assisted breathing, watching them struggle to communicate when they can’t write or speak hurts as much as post-op pain. I know; I’ve experienced both. Being their voice during a crisis takes strength and determination of the strongest type available to push through emotions and frustrations while you stand firm instead of lying down and crying.
Must Be Prepared Daily
For me, living with someone who has PPMS means that I struggle every day to keep him as healthy as I can. Daily, I watch for signs that indicate a decline in one of his primary, life-sustaining organs. I must be prepared for my husband to take a sudden turn for the worse at any time. Since 2010, he has had multiple emergency admissions to ICU stays, all occurring with quickly acquired changes in his condition.
An Expert on Danger Warning Signs
I have become an expert on my husband. I know the sound of his normal breathing patterns, the color of his skin indicating health and that indicating fever, smells that indicate digestive disorders or infection, behavior and cognitive changes indicating oxygen or CO2 changes, so many signals of possible impending disaster if ignored. Just this week, I averted a crisis when I came home from helping my daughter and immediately realized his carbon dioxide levels were rising when I saw his bright pink face and how sleepy he was behaving. High CO2 levels can lead to a decrease in the desire to breathe. If I had not noticed, he could have stopped taking as many deep breaths during the night and began to develop pneumonia.
Advanced Directive
I know it is likely that one day, Lynn’s diaphragm may become compromised, and he may need the use of a ventilator. If that happens, our answer will be, “No, he doesn’t want a ventilator.” In choosing hospice, he can stay at home with family in a familiar environment until he dies. We can surround him with music and conversation about things he wants to remember and keep him comfortable with items he treasures. His passing can be as peaceful as possible that way. Our family and our primary caregiver have received a copy of his Advanced Directive explaining his choice regarding various life-sustaining procedures.
Transitions
When that time comes, I, too, must transition from caregiver to non-caregiver. During the end, I will make him comfortable as he struggles to breathe until he takes his last breath and enters the gates of heaven. He will go home to be with our Savior, but I will be left behind to establish a new life. Since 2006, I have provided full-time care to him. I have given up my career, and my health has suffered. Furthermore, I have no hobbies, no friends, and no interests outside of what I do with my immediate family. I will have to find myself again because, at this time, my life is wrapped up and around his; nothing I do is unrelated to his care. Once he is no longer here needing my help, there will be a huge void to fill, so, as I prepare for his ending, I also prepare for my new beginning.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC and has been reposted with permission.
