Caregivers have so much on their plate, and their lives are drastically affected by their role as a caregiver. It is not often discussed, but when a couple takes on the responsibility of caregiving, the effects on their marriage can be incredibly difficult. Granted, there are marriages that are strengthened, but there are many more that are not. When my husband and I first discovered our daughter had half a heart, we were devastated. Our lives were turned upside down, and we had medicine logs, sleep schedules, feeding logs, oxygen tanks, sat monitors, and other elements of her care that became wedged between us. We were told early on to work together, and that many marriages fall apart in situations like ours. I can see why, as it was a struggle, but our marriage strengthened. We learned to work together, even when the odds were against us. We became a team, and still found time to be a couple when we could.
We were lucky, and I am grateful that our marriage survived. However, I see the effects of long-term caregiving in my parents. They have been caring for my grandparents for over a decade. While my grandma passed a year ago, they now take care of my aunt who has terminal cancer. The road has been long for them, and while they were financially able to handle the monetary burdens in the beginning, the recession hit them hard, and shortly after, my dad was unemployed. They were stuck in a house in New York with high taxes and a high mortgage, and they had to take a loss on the sale of it. They lost everything. Savings, retirement, stocks, and so much more. They have to live a different life now, and while they had a bigger space to be caregivers in before, they now have a much smaller space. It leaves little room for privacy.
I have watched them over the years. They have taken on the overwhelming stress of caring for others with grace, but as each month passed, they lost part of themselves. They were now bound as caregivers to others, and there was no room for a life of their own. Their life was caregiving. Time together was shortened, tempers rose, and the spark they always had for each other was gone. They still love one another, but their love is now built around the foundation of being a team of caregivers. My father snaps at my mother, and my mom gets more and more emotional because she is lost in her role. They get weekly phone calls from family, and see Facebook photos of the life the rest of the family gets to lead while they remain in their job as caregivers. They say they are grateful for the moments of joy they can give in their loved one’s final days, but they no longer have joy outside of this life. Their marriage is a kiss goodnight, and in companionship, but the spark is still not seen.
It is difficult to watch a couple that always made me believe in the forever, fairytale marriage become so stagnant, but how could romance thrive in a caregiving home. Their home is filled with illness and impending death, it contains oxygen tanks, medications that must be sorted carefully, nursing aids that help to bathe grandpa and my aunt. Yes the home is filled with love and dedication as well, it always has been. My parents are good people, willing to give everything they can of themselves. Their home is sacrifice. But, on the outside, I see the change, and I resent the family members that get to live their lives. I know my parents feel this way sometimes too, as I have heard it in their voices, but they do not rock the boat. They want to maintain peace, so they do not say what is truth. They have been abandoned, and their marriage, their health, and their lives have suffered because of it.
This does not make them poor caregivers, it makes them human. It is the world that looks in on the caregiver that assumes they are superhuman and must be able to take on so much without loss, but they do lose, and it is swept aside as a small price to pay. I think our society has become diseased when it can be split so unequally. When only a small percentage of families will take on the role of caring, and the rest take that as their chance to cut and run. Where is the humanity in that? If whole families could share the role of caring, there would be less stress and health related illnesses because it would be a combined effort. Instead, often one person or one couple take on the entire gravity of caregiving. How can marriages possibly survive intact. It is time to hold people accountable and to bring the humanity back into families. They need to know that once a week or month phone calls are not enough. They need to realize that love cannot be seen in a heart that casts aside the weak because they can’t be bothered to adjust their lifestyle. They need to realize that there is no room for selfishness in a family. And, they need to open their eyes to the caregiving couple or caregiver who is suffering silently, hoping for a little relief.