Caregiver Perspective: One Day They Die

Last updated: May 2019

I try to stay optimistic about the future, but occasionally an event occurs that 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 meet the caregiver while my husband, Lynn, was a patient in Intensive Care (ICU). 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 be able to talk openly to someone else about how I felt about my new role, especially about my fears related to Lynn being in ICU. Those discussions lead me to start writing a blog about the struggles of being a caregiver with the hope of connecting 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. She posted a notice a short a few weeks ago 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 on 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 there are those who question why I have a right to complain. After all, I am the healthy one. I don't hurt every day and struggle to move or feel terrible half the time from MS symptoms. Shouldn't I be embarrassed to complain about anything? 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 instead.

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 worst 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 and the color of his skin indicating health and that indicating fever. When he has an infection, I can tell from the odor of the drainage. If he becomes confused or irritable, it might mean changes in oxygen or CO2 levels. I've come to know all these many signals of possible impending disaster that must not be 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, I know our answer will be, “No, he doesn’t want a ventilator.” In choosing hospice, he has the ability to 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.


When that time comes, I too must make a 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, 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 totally 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.

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