The Reluctant Caregiver

This is the first in a series of guest blogs, written by caregivers with different perspectives and different experiences. I am thankful to all who chose to submit a story and to all who have lived these experiences.

I didn’t want to be a caregiver – and I still don’t.  I also never expected to be a caregiver, not in this way, not at this point in my life.  But for the last four years, I’ve been filling that role for my aunt, whose health deteriorated rapidly just at the start of the pandemic.  Because she never married or had children, the responsibility fell on me – the niece who lives nearby.  It is a responsibility I have carried out well, I think, but reluctantly.  Through handling it, however, I have learned what I can do to better prepare for my own aging.

I had assisted several older relatives, including my mother, in the last years of their lives, but mostly with minor things: balancing a checkbook, accompanying them to a doctor’s visit, and so on.  Now that they had passed, I could take a break, especially since my husband and I are generally healthy.  I knew that my aunt was not in as good shape, but from what she told me and what I observed, she seemed mostly to be slowed down by bad knees, extra pounds, and bouts of sadness she wanted to ignore. 

But minor problems became more frequent, until a fall briefly sidelined her.  And then something else went wrong, and she was admitted to the hospital in early March 2020, moving back and forth to short-term rehab for more than a month as COVID raged, including in healthcare facilities.  Without warning, and at the worst possible time, I had to coordinate her care without being able to see her or her providers.

She recovered and went home, but the pandemic and her physical limitations kept her stuck in her rental apartment.  I had to go to her, shopping for her and finally being allowed to be in her home (for years she had not invited people over).  That’s when I got to see how serious her health problems were, how ill-suited her apartment was as a place for her to live (for instance, it wouldn’t accommodate a walker or wheelchair) — and how little in the way of savings she’d been able to put aside.

My aunt left her apartment suddenly, and for good, about eight or nine months later when an emergency required major surgery.  From then on, she has been in institutional care – hospital, short-term rehab, assisted living, and finally a nursing home.  Every step of the way I organized everything; I investigated living situations, cleaned out her apartment (making painful decisions about what to keep and what to throw away), took over her finances completely, filed her taxes, spent down her assets, and hired a company to help with the Medicaid application. 

I have talked my aunt through medical decisions, including several involving end-of-life directives; one conversation took place by phone, when she was hospitalized and on oxygen with COVID.  When weighing work projects or choices about leisure or volunteer activities, I have had to keep in mind my caregiving duties, and the time and emotional demands they make on me.  I have lost sleep, cried, and gotten stressed, especially when the phone rings early in the morning or late at night.

My aunt is now in the nursing home where she will live out her days.  I visit and call her regularly, oversee her health care, and buy her clothes, toiletries, and snacks.  This will not end until she does – and that might be a few more years in the future.  The woman who once predicted that she would die young has lived more years than any of her siblings did. 

Clearly my aunt had not expected to be in this situation and had not planned at all for anything like it.  That lack of planning has hurt both her and me.  We might have had more options at points along the way if I hadn’t simply been responding to one crisis after another.  But I did my best, and as a result I have learned some valuable lessons about aging – lessons that my husband and I are already putting into practice.

It is essential, even though difficult, to do thorough financial planning and to understand various options for care and the resources available to you – before you might need to access them.  Besides saving some money and making me power of attorney, my aunt had not done that.  I got an unwelcome crash course in paying for institutional care when decisions had to be made right away.

It is also essential to share personal and health information with those who might be involved in your care.  Because my aunt has not really had any cognitive decline, some problems associated with aging, like forgetfulness, did not pop up to warn us.  Because she lived alone, she was able to hide her increasing physical limitations from the rest of the family.  Had we known their true extent, we might have been able to make other arrangements – help her move to a more suitable apartment, for instance, and thereby keep her out of institutional care for longer. 

Finally, it is essential to bring people in, not to shut them out.  Even before her hospital stays, my aunt gradually stopped wanting contact with friends and many family members – but her self-imposed isolation has only fed her unhappiness and severely curtailed the number of people who could have helped her.

I mourn the loss of the aunt I once knew and the relationship we once had.  Instead of fond memories, I sometimes have anger and resentment toward her – feelings that I have to keep inside when I see her.  But in continuing as her caregiver, I try to honor the loved ones we have in common – people who are no longer alive, but whom we both cared deeply about.  In caring for my aunt, I try to remind myself that I am showing my love for my mother, my grandmother, and everyone else who is with me in memory only.