Angry Karagözis: Debating the ideal limits of family caregiving

Angry Karagozis - image from John Sanidopoulos' blog post on the debate about whether Greece or Turkey can claim the puppets as their own (click on picture for link)

Yesterday, I wrote to you about making lemonade out of lemons, looking for “silver linings in the cloud” and so on.  I also wrote about the comfort of a glass of çay or a cup of chai during tough times. We are struggling, this week, with how to address the care of a disabled family member.  While the immediate crisis has been addressed, our discussions on our views about family caregiving in Turkey and in the United States continue – with each other, with friends on both sides of the big old pond.  All of the guidebooks and websites on Turkish-American cultural relations websites talk about how Turks are so very loyal – fiercely so – to their family.  Family comes above all.  To some extent, we saw this with the whole “Sicilian message” thing in M.’s family.  In my head, I think I can feel the Turkish family judging me for having my younger family member in out-of-home care, not understanding, thinking it is a betrayal -and what does this mean for how she will care for M. when he is old?  Who knows if my head is the reality. 

Most of all, the discussion about the limits of family caregiving is raging in my head – in the form of a band of now angry Karagöz shadow puppets, while they often seem to collectively strike a balance between Turkish and American values and views, their Turkish roots are showing on the present issue, for the most part.  Karagöz himself is showing a set of different colors, and I don’t much like the palette. While always the agent provocateur, twisting and turning in gleeful silliness, Karagöz is showing a slightly mean, sour side.  Today, in the midst of my Skype call with a dear Turkish friend to whom I was trying to explain the situation, he started jumping up and down on my shoulder, taunting me with a phrase that went something like this “what a big mess, she’s in such distress, you must confess, this you didn’t address…you could have known, you should have known, if you had, you’d have flown, their cover totally blown.”  I dissolved into tears at this. 

While the chorus of little dancing ladies have been just super supportive about it all this week, delivering round upon round of tiny çay glasses with extra lemon and sugar, even they are looking a bit askance at me.  I heard one of them whisper in sotto voce, so I would hear it,  “well, why didn’t you notice what was going on? If she was in your house, this never, ever, ever would have happened, after all.  Maybe you should consider that.”  Ever the grounded one, Hacivad remarked on this too – quickly moving to chide the bravado-filled dancing lady by saying “it is not wise, to do this, the needs of this person are too much for this marriage to manage, a happy medium must be struck, she must remain in the care of the state, but the watching must be more vigilant, the planning different.”    Hacivad’s voice is the one that M. agrees with…he worries that without the affordability of home-based care for people with disabilities in Turkey, we would be divorced in a hot minute if we took care of this young person ourselves.

For our Turkish friends and family, it has been hard to explain why our family member is not in our home.  It is pretty much just-not-done to have a family member with a disability in an institutional setting somewhere.  I do think this is largely driven by market realities that allow for staffing that can assist people round-the-clock.  Of course, there are exceptions – and reports about institutional care in Turkey are horrific and this has made the International news.  I hope that this report (in the hotlink to the left) is focused on outlier places – but you never know. 

I hope that the bid to enter the EU causes different standards to be implemented.  The spectre of these placements that have hit the news in recent years are not discussed outright in our conversations with Turkish family and friends, but I feel them there.  I have noticed how very ashamed I feel when my Turkish family and friends ask – “but why didn’t you see it?” or “why isn’t she home with you – in Turkey we would not let her out of the family house.”  Deep-seated beliefs about someone’s care make understanding another culture’s approach pretty hard.  I find that just accepting that for what it is, is the most helpful thing.  We-just-think-differently-on-this.  Of course, it helps that M.’s family had a history of one person needing so much care that an out-of-home placement was needed, and accepted – long ago.  Perhaps this makes it easier for him to accept from the baseline.

As for me, having been raised in a home that valued our own efforts to care for elders and younger folks with disabilities – it wasn’t until things got really bad that we turned outside for help.  After living 2 hours away on her own for years, my Granny had a bad fall, and needed so much medical care that she came to live in a nursing home nearby.  She quickly receded into the fantasy of her memory, speaking Castilian Spanish and worrying about General Franco’s revolutionaries taking over the nursing home.  My mother encouraged her to speak Spanish with the range of workers from Latin America there, but she turned up her nose at this inferior form of Spanish.  It was mortifying.  You can’t make this stuff up. 

On my father’s side,  I can remember a parade of housekeeper/personal care attendants that came in and out of my paternal grandparents’ home whilst both were in the throes of senility and/or Alzheimer’s disease.  It was tough going.  I have one particular memory of my Grandfather, who was sure to wear a new shirt every day, just without taking the former day’s shirt off.  My Dad, no doubt feeling the tug of guilt and need to get Grandpa clean, basically wrestled him into the shower – peeling off shirts as best he could in between curses and physical protest. 

As for Grandma, she was primarily over-medicating herself as a result of memory loss – it was perpetually morning, or lunch, or dinner, and she just kept taking her medications – and kept cooking.  Even if our lovely breakfast had ended just 15 minutes before, there was stretch of time when she was cooking it again, or starting on lunch right away.  Time had lost meaning.  My Dad was over at their home constantly managing a melee of confusion.  It was nuts.  Add to this a young person with a disability back at home – and a wife with cancer – and we had a crisis.  It was longer than it should have been before my folks decided to place both grandparents in a nursing home down the street from the house. 

I think that the shame about having to do this – strangely coupled with the relief of having to do this propelled my mother into uber-daugher-in-law mode.  We visited our grandparents every single day after school, getting to know the nurses, the orderlies, the administrators.  I can remember my father telling me “you have to make sure that they know that we are a loving family, and that we are watching them.”  These early experiences taught me our family’s strong value on doing as much as you could yourself, but knowing when too much was just that, too much.  However, these experiences also taught me the importance of watching, observing, making one’s presence known.  It is perhaps for this reason that I feel as badly as I do about what happened to our younger family member, who was neglected in a facility responsible for her care – it is that I didn’t see it, didn’t catch it myself.  I know better than to be angry with myself, but I am still furious at myself. 

So, we continue to muddle and puddle through, and somehow, our different cultural orientations to family caregiving, our different family experiences with out-of-home care  and our different views about how to respond to a situation synch up just enough in a way that makes sense for now, although the conversation is by no means over.  I just hope the Karagöz puppets will ease up on me a bit, so M. and I can move on with our lives a bit…