Caregiving

 I realized I have been a caregiver to my parents in one form or another since my dad got parkinsons.  That's longer than a decade.  A time that started out relatively uncertain with his diagnosis and watching both of them decline to my mom's death last year and my dad's continued decline.  It started out with check ins.  And progressed to supporting their decisions and taking them to medical appointments and being a sounding board as their capability declined.  To the point they weren't eating properly and were malnourished.  They couldn't live in their house because they were hoarders.  I moved them to an assisted living community.  Then to memory care.  Then to another assisted living room in the same facility.  After my mom died, my dad pursued radical treatment for parkinsons and had to move him to a skilled nursing facility or a private care home.  And now I am dealing with his decline on multiple fronts, managing his medical care, trying to manage his psychological care and managing the relationships be continually manages to strain every other week.  And I realize he is a challenging and complicated individual.  I've gone from including him in discussions about his finances and medical care to worker around him and providing him with a summary.  I've watched him mentally decline whether he admits it or not.  And now I deal with a guy who thinks he has something to prove he's still got it when he clearly doesn't.  It's exhausting and it feels like it will not end any time soon.  The situation will not improve.  It will get worse as his decline continues, parkinsons marches on and I'm left to hold his life together. While holding their lives together as best I can - I've damaged my own life. My own psychology, my career, my well being and the relationships with my immediate family.  Because I'm worn down.  Tired.  Burned out.  And just don't care anymore.  

The bottom was leaving my career before being unable to adequately perform.  Things have gotten better as I've made decisions to work on myself and take control of things I am able that don't relate to caring for my Dad.  But he is always needing something and can't say I could have held on to my job.  I can say that the auto parts store would not have put up with the last 3 weeks of responsibilities that have popped up tending to his medical appointments, procedures and breakdowns in the institutions that are needed to get him what he needs.  Sometimes the best run medical practices go through personnel transitions and cases fall through the cracks.  Thankfully the neurology office is a football field away from my house.  They may not answer the phone or return telephone calls, but being able to "pop in" to see them in person for resolution has been the only way to get this train wreck back on track...

I was perusing the facebook and a guy named Neal K Shah found his way to my feed.  He describes himself as America's chief elder officer and CEO of careyaya.  I watched a few of his videos.  The hit my right between the eyes and the center of the heart.  Caregiving is hard.  It sucks.  It is documented to re-wire the caregiver, evolve (strain and damage) relationships in unforeseen ways, sucks the life completely out of the one providing the care.

I don't know what I'm complaining about because I'm not as far in as other people.  At least my father invested and saved to fund this stage of both my mom's life and his own.  I can't imagine the strain other people are under where a declining parent moves in or doesn't have the financial resources to partially shift the burden to professionals. 

I'm pleased with the relationship my sister and I have cultivated over the last few years.  While she is not in the thick of caregiving for my mom or dad, she has been through the wringer with her own husband's demise after an auto tragedy.  She has been instrumental in giving me a space to bitch and moan about the situation and we've had quite a few good laughs about dad, his stubbornness and the fact that he's a demanding and obtuse pain in the ass. 

While Mr. Shah's shared information isn't revolutionary, it's concise and manages to explain the burden along with the emotional, psychological and relational cost and incurred damage associated with caring for elderly parents in decline. Interested to see if he has any ideas to dig one's life out of the hole that is long-term caregiving for elderly parents on the decline.