A personal story of care giving….

I have practiced elder law since 1990 and been the CEO of Legal Services for the Elderly, Disabled or Disadvantaged of WNY (LSED) for 14 years.  LSED’s target population includes elderly & disabled persons, so I have been around care givers for my entire career. I have spoken on elder law and long term planning in hundreds of community presentations at the local and state level.   However, everything I thought I knew went out the window once my parents got sick.

I was extremely fortunate, my parents were fairly independent until the last year of their lives, despite both having chronic conditions.  Nevertheless, at the same time when I was busy being a wife, mother and attorney, my parents needed me.  I had heard all about the “sandwich generation”, but it never really worried me.  I had been multitasking for years.  It was what all my friends did- juggling family, careers, and community commitments.  Honestly, what was one more responsibility added to the mix?

I should have asked for help.  I, of all people, knew of the resources out there.  Erie County Senior Services has wonderful Caregiver Support Center.  I personally know Miriam Callahan, who runs the Center (858-8526).  I’m not sure why I didn’t call.  Perhaps I was embarrassed that I couldn’t handle it on my own.  At the time, part of me didn’t want to share my personal business, thinking it could negatively impact how I was perceived and, as result, my ability to represent the agency. But I think partially I just didn’t want to accept that it was happening.  My grief was too large- talking about it would have put me over the edge.  Keeping insanely busy meant that I didn’t cry all the time (or actually, at all).  Busy and focused suited me and I approached care giving like a project.  Except it wasn’t.

So I made mistakes.  When I finally did call a friend about Medicaid for my father, she told me what I should have known. My dad was eligible months earlier and we had privately paid for his nursing home when we didn’t need to.  I, of course, had advised clients on this issue, but somehow I couldn’t see things as clearly for my parents as I had for others.  While I had enough sense to talk to them both about health care proxies, I never really thought how those conversations would happen.  When the pulmonary doctor came in and told me that my mother should not be intubated again, I naively thought he actually would say something when we went in to talk to her.  But he did not.  My mother turned to me and asked me what to do.  So no- I didn’t see that coming.

When my parents died 10 days apart from each other I knew that I could not handle their estates.  I hired a well-respected estate attorney to take over.  My aunt couldn’t believe that I would “waste” money in this manner, but I had learned my lesson.  Care giving is different when it is yours to do.  I was no expert and I had no special skills.   I was struggling to get through each day and I was no more prepared for the task, or their deaths, than anyone else.

-Karen Nicolson

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