Among us lives a population of people who find themselves providing care to a loved one, either directly as in hands-on, or obliquely as in managing services, or, a combination of both. They are called ‘caregivers.’

Caregivers may feel as if they have been dropped into an alternate universe, one in which they cannot escape, not even for an hour. There isn’t a roadmap to guide them. There are few rules. But ever present is the driving need that requires them to provide care, whatever form it takes.

The vast majority of these caregivers will be women – women who are also breadwinners, mothers of young children, wives, sisters – who are pulled in various directions all day long every day, sometimes for years. Most won’t seek help and, if they do, it may be hard to come by. Their journey is a lonely, exhausting one fraught with pitfalls. Yet they will try their best not to let any of their many jobs suffer, even to the exclusion of their own needs.

There has been much written and the media has jumped on the Alzheimer’s bandwagon telling the stories of caregiving. I’m here to say it isn’t enough.

The variations on the theme of caregiving are as different as the humans walking the planet. No two stories will be the same. There will be some common side notes, similarities, experiences, but how those are managed or mismanaged won’t be the same.

Local councils on aging may provide some outreach services to families dealing with specific pathologies such as Alzheimer’s disease and dementia. COAs may be able to network caregivers with service providers, support groups, therapists and the like. But not every COA functions in the same manner, and not every caregiver’s situation is easily remedied.

One thing caregivers don’t have is time to waste sourcing help. What oftentimes ends up happening is the caregiver continues to plug along, alone or with very little assistance, or completely unaware that some help is available.

Maybe a caregiver is a younger person whose familiarity with services for elderly persons is non-existent. Maybe the caregiver can’t recognize the fact that they are actually caregivers. They may believe they are simply performing tasks that aren’t truly related to an illness, thinking “Its just old age problems,” or, “This is my mother; she needs me to do this,” without questioning, are there alternative choices or others who might be able to help? It may be that only when a caregiver is in crisis himself or herself that intervention happens. Generally by then, years may have passed.

And what happens to the caregiver once that job ends, when the loved one dies? Does the caregiver just go back to where they left off before they began taking care of a family member? That answer is absolutely not. The caregiver more times than not will be left in an emotional morass not unlike PTSD.

How do I know these things, you might wonder. Simply put, I am still recovering from taking care of my father.

Dad has been gone three years. I oversaw his care for over a decade. It’s actually a blur to me in many ways. Why I ended up in that role isn’t really important now. It’s behind me, not in front of me, but the impact remains. There were so many things I didn’t know, so much that could have been handled differently. The snapshots of taking care of Dad affect me all day, everyday.

In the beginning of those final years, he functioned fairly well with daily visits from my husband or me. CNAs provided meals and baths, some housekeeping, and company. But overall, the person managing his care was me.

There were many days that went by in a wonderfully unremarkable way. Those were the days we had some fun either going to the grocery store or out to eat, or family visits in my home. I’d take him to visit his wife in the nursing home, trying to mediate between my deaf to semi-deaf parents whose natural way of interacting is best described as contentious. Still, we enjoyed each other’s company a great deal of the time, in spite of my level of high alert in all things related to Dad.

As his disease progressed, as he began to try and find his lost boat that had a million dollars stashed in it, as he sought his new wife and small children who were waiting for him in their new home, it quickly became apparent that even his smallest grasp on reality was gone.   The thing about dementia or Alzheimer’s disease is that there might not be a component that requires skilled nursing care. In that situation, health insurance – either private or government issued – doesn’t cover nursing home care. Such cases are considered “custodial” and most nursing homes won’t accept a patient unless, of course, you can pay cash. This leaves families coping with increasing levels of mental health dependency at home. For many years that was my reality. Dad’s body was perfect for a man his age; it was his mind that was sick.

At the every end, he was admitted into the hospital with pneumonia that then allowed him to be placed in skilled nursing care for about 100 days. I had no idea what would happen after that. I was just trying to stay afloat, navigating this new unknown ocean – the nursing home.

During those 100 days, Dad’s mind crumbled and fell away in great chucks until he no longer was aware of anything. He didn’t speak, eat, drink, move, nothing. It was over. On a beautiful May afternoon with a gentle breeze outside his darkened room, Dad slipped away peacefully. For that I am eternally grateful. He didn’t fight. He let go. That is something I am still trying to do.

Regardless of the comfort I get in knowing that I did every single thing I could possibly do for my father when he needed me the most, it is still hard. I haven’t returned fully to where my life ended before overseeing Dad’s care. I wonder if I will.

More needs to be done to address the varied emotional as well as practical problems that arise for caregivers. As the numbers grow of people identified with Alzheimer’s disease, more caregivers will be needed. The demand on these caregivers will be great. I ask, what can we do as a society to support them? We need to think about this now. Societies are comprised of people, many of who will become caregivers trying to go it alone, and many who will one day be the care-given.

By Marilou Newell