Negatives and positives ... both are so very real...

I'm having quite an internal reaction to my last post (where I describe why caring for aging parents can be so fraught with negative emotions, and why it's not really comparable to caring for children).

My reaction is partly embarrassment at having said it so directly.  But, I am also reacting because it doesn't tell the whole story.  I need to shine a light against that darkness.

I'm sure there are many whose distaste for their imperfect elders makes them do the minimum possible to help their parents, or to support them with thinly veiled resentment, or who abandon them altogether.  We even read of elder abuse, those who have victimized their parents physically.  Horrible.  Horrible.

On the other extreme, there are those who have a wonderful tender relationship with their parents, and who treasure every moment even if it is cleaning up a messy bathroom. I congratulate these blessed folks.

But where there is some degree of difficulty or even distaste for caring for elderly parents, is that the only thing that we see? That I see?

I started this journey without knowing.  Without knowing that there are such nice things I get out of it, like learning how to sit quietly. How to be OK with not having anything interesting to say. Finding out that there ARE little moments of laughter and silliness.  My mother has more of a wit than many of her contemporaries and it's fun to see aides or others enjoying her humor (usually, unless the barbs are too sharp).

This time has also allowed me to have a loving relationship with my mother, against whom I have held considerable anger (not unfairly) for many years.  We got to refresh, to reboot, even to restart.  And I'm so glad and grateful to have had this time.

I have been able to glimpse into Elder-World, and make decisions about how I want my old age to be.  I am determined to retain rich friendships and stay intellectually active.  I want to be fully alive and contribute to others until my dying day.

I think other posts have talked about other positives.  I just wanted to put that other darker post behind me.  Shudder.  That wasn't all there is, and I needed to say it.  There is also laughter, joy, purpose and even fun.  I'm grateful for this time, even with its difficulties.  I'm grateful.
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Why do many of us adult children feel (mostly) negative about caring for elderly parents?

Is that just the dumbest question? Is it (presumably) so painfully obvious?  Or is there more to it?  (And, if you don't have negative reaction to caring for your elderly parent, then I truly congratulate you.)

Is it fair, is it equivalent, to compare our parents' care for us when we were children with our caring for them as elderly parents?  Is it the same?  Are we merely 'giving back', tit for tat?

In the sense of familial duty, yes of course it is comparable.  They gave us life.  We owe them respect, dignity, honor.  Absolutely.  It is the right thing to do.

At the same time, we may have feelings about performing that duty that feel ... uncomfortable. I've talked about those feelings (resentful, impatient, frustrated). We are not proud of feeling this way, but it does REALLY feel quite different, my caring for my mother versus raising my daughter.

Why?

My sister's friend shared the essence of a newspaper article on the subject of caring for aging parents.  The article said the difference between caring for elderly parents versus children is that no matter how well we take care of elderly parents, they keep getting worse, unlike with children who grow up and become independent.

Maybe. Maybe that's part of it, anyway.  But I really think there's more to it.

Children bring hope, laughter, and the future.  Children allow us to dream. They touch a part of us that remembers our own youthful days.  They are innocent, clean slates. They are forever.

Parents... they bring (to most of us anyway) baggage of past failures - theirs, ours. When we walked away from home some years ago, we set aside unresolved issues - until now.  And now they are sick, needy.  Confused. They have awful smells and physical needs - needs that will only grow. They are confused and irritating when their own frustration or demands or moodiness hit us in the face when we are least prepared for it.

Children are fresh, new and hope-full.  Aged parents are damaged, pained, and used-up. 

Plus, the demands of an aging parent coincide with a time in our own adult lives when we are trying to finish some of our own accomplishments, help our own adult children, strengthen our own marriages, meet our own various needs in the last phase of our career before we retire. We're tired.

Further, as we look at elderly needy sick parents, we see ourselves in just a short 25-30 years to come. Who will bring us flowers, toilet paper, wine, toothpaste, Advil?  Who will hold our hands at the doctor's office?  Who will care if we live 'well' - or, if we live at all?  Can we afford our future? Will anyone even notice our existence?  Seeing our parents can be frightening, terribly uncomfortable.

As I'd mentioned before (and as others have secretly echoed) we adult children have horrible thoughts that we know they will die soon and that we actually hope for it to be sooner rather than later.  And the guilt and shame of that reality is just awful.

Honestly, my mother feels the same way, and says she is ready to die.  Waiting to die.  Maybe even yearning for death.  I'm aware of no particular purpose she serves except to boost Dr Phil's ratings by one viewer a day. She and I have nothing new to say to each other. There is no meaning to life that she is somehow holding back from sharing with us. She's marking time, waiting.

Of course, there are some nice moments we enjoy together, and I really work toward supporting her in a positive joyful way. But overall, there is the waiting, and secretly hoping, for the end. But still, it sounds like an awful thing to say, that I am looking forward to ending this.

So, there are some superficial comparisons that can be made between aging parents and young children.  But the real differences are complex and layered and uncomfortable and so very sad.
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About the title of the blog, "As my mother slowly disappears"

"As my mother slowly disappears."  Have I explained that title?

I have been struck at the changes in the size of the footprint of my mother's life.  She, as do all of us, had a big footprint in her adult life.  Owned a house. Cars.  Travel for pleasure, travel for family.  A job. Influence in her community. Children. Grandchildren. Edited some community newsletters. Hosted dinners.  Attended Elderhostel.  Was active, engaged.

And over the last 20 years, her footprint has been diminishing.

Her husband died.  Whoosh, in a heartbeat, her life footprint diminished by half.

After a bit, the house then went. Sold.  The possessions in the house gone, as my sister and I and my niece (representing our absent brother) pawed through boxes and piles.  At first, we were happy to have this or that thing; toward the end, whoever simply let their gaze linger too long on an item was 'stuck' with it, as we tried to avoid enlarging our own piles.  But the Stuff had to go...

... to get her into an apartment.  She stayed there for maybe 5 years.  They provided her dinner meal; she only prepared breakfast and lunch in her tiny kitchenette.  Visits from family sleeping on the sofabed. Until fires in her kitchen and other health risks meant she could no longer live there.

More sorting through the remains of a lifetime. More reducing her footprint. More passing along to family.

Next, she moved into Assisted Living.  Two rooms. They provide three meals. Housekeeping.  And during the last years, she has added services including administering her medicines, giving her showers, helping her get around. Hospice even helps her urinate (with a catheter).

Her life is sitting in her red chair, watching TV and waiting for Dr Phil. And for me.  And waiting to die.  To disappear.  Poof, and she's gone.

Then us kids come in, sort through whatever remains, and then she exists only in memories and photos.  She takes up no space at all.

Disappeared. Gone.

I kinda like those old folks

I must say that I rather enjoy being around the old folks in mom's assisted living center.  A few are just too far inside to reach, but most are reachable in some way.  It's kinda cute to see the parade of folks with walkers, trying to make fun 'crashing' into each other, talking about putting on their blinkers as they pass on the left, etc.  There's Dean and Bob and Lois and Margaret; Evelyn, Betty and some nameless ones.  Elegant and outspoken Mildred and her feisty friend Geraldine.

I always try to speak to each one, whether they respond or not; most do.  I have a bright smile and they seem happy to see me.  I want to show personal friendly interest in each one - I think it helps my mom, too, when she is rude or abrupt.  Maybe they'll be more forgiving of her attitudes if they remember her daughter is nice to them.

When I've come in to teach a genealogy event, we get few attendees but they are eager to talk about what they've done and where they've been.  It's been nice to hear their stories, though sad to know that their own families may not care much.

I've overheard them talk about me (there are no secrets in nursing care as too-loud voices carry), and they say nice things that make me feel good. It's an easy crowd to please - an ego-boost!

There's something about really looking into their eyes, with a smile and a greeting and sometimes a conversation.  I used to be like most, looking beyond them, a little nervously, a bit uncomfortable.  But now I'm enjoying my little visits with 'the ladies' and the men there.  

Opening up...

So, I've kept this blog as my own secret place to talk to the void.  No one has known about it, not my sister, not my husband.  Just me.

And it's time to share with my sister.  Welcome Marilyn!  And, if Marilyn wants to share it, welcome, oh friends and family of Marilyn.

I wonder if I will write more or less or differently if I now feel like I have an audience?  I don't know if it's good or bad - just different.

I've found another blog I really like:  http://midlifemidcape.wordpress.com/.  A man writes about his caring for his father in his home.  Of course, that's different than my situation, but I have enjoyed reading it.

And I wonder if I might do a blog (a public, visible, public-service kind of thing, like for MONEY) about elder care.  Lots of us baby-boomers that may embrace some help.  Or maybe not.  Right now all this feels pretty ... close.

And marilyn and friends, I apologize for any unguarded comments or any blathering on or looooooonnnnnngggggg posts.  And Marilyn, let me know if there's anything I need to edit out.  When one is writing to the void, one speaks frankly.

I love you, Marilyn.  You are loyal and loving and supportive.  Even if you can't be here to lend a hand with daily stuff, your words bolster and comfort and balance me.  THANK YOU.  I love you.

Honestly - how do I feel about all this?

I had an interesting chat session (AIM) with my sister Marilyn (oh I really love and appreciate her support).  (I have never told her about this blog, and I think it's time.)  And, the chat session brought up something I haven't dealt with so much here ...

How do I FEEL about this whole Mom thing?  About ... Mom?

I've written here in my secret blog about the frustrations of all ... this.  About being overwhelmed with tasks.  About resenting my mother's self-absorption. About just practical details of being an elder's 'person'.

But how do I feel about ... my mother?  About my life?

Honestly, I can't wait until she dies.  Is that shameful thing to say?  Well, there it is.

I want my mother to die.  To stop being so needy.  So craving of my presence.  Just to die.

I'm tired.  I'm done.  (sadly, no, I'm not done.  not yet)

Further, being really honest, we were never close.  She wasn't ... nurturing.  She has always been self-absorbed. Her own mother wrote in a diary that if she (my grandmother) was in some crisis, she (my mother) would finish her bridge game before she came. My childhood as I recall it was filled with my father's anger, my own fear and silence, with my father's rigid obsession with being perfect. I feared him and she never really was much of a presence.  I'm only glad he is already dead, and there is not a single day that I mourned him.  Or even thought about him or regretted his being gone.

I left home 3 days after graduating high school.  At 17 years old.  Moved to NYC.  Never looked back. My sister stayed another two years, and has been a loyal support to my parents for all these years. Marilyn has been there doing the routine boring support things for decades.

Now it's my turn to pitch in, and I'm doing it.  I'm doing it. 

And after I left home at 17 I found friends and nurturing and recovered from devastations I suffered previously.  And, I am really REALLY good now.  Many years of therapy, three (four?) hospitalizations and decades of great friends and a spirituality that has brought me tremendous joy and peace and... context.

But let's be really honest.  This is not a case of a grateful daughter giving back to a wonderful, nurturing mother.  This is a case of a woman choosing to take this on.

I hope this doesn't come across as my being some kind of a martyr.  I'm not.  Really. It's just my turn.

And, from a selfish point of view, I wanted the opportunity to develop a side of myself that I hadn't stretched as much. I had protected myself for years from having much direct contact with my parents ... by design.  And now it was just a good time for me to develop that side of me.  A giving-in-spite-of-everything-else side.  I have become strong, and I have learned how to say No, absolutely NOT, I learned how to feel like I was SAFE, now it was a time to CHOOSE to say Yes - not of duty (lack of choice) but of pure choice. Because I was ready. (I wonder if this makes sense.)

and if I'm going to do this, I want to do this with joy.  I choose joy. I want to find the positive side of it.  If I'm going to spend "x" amount of time, I may as well do it with gusto. With full awareness.  Without reservation (to the extent possible - honestly this all sounds a little.... much).   But I am really working at it, trying to stay in each moment, not resent the incursions in my life, in my schedule. To release 'outside' stuff when I walk into her building. Try to remember that old folks just want to gaze into the eyes of a loved one.  Time, gazing. Like infants.  And trying not to fidget remembering the things that I really wish I was doing.  Not to be coiled, ready to spring out the door when my time is up. Just allow myself to be in that moment. The joy of a Wendy's Frosty.  Of grapes. Of warm feet.  Of a good BM.

(and I do NOT remind her - as I sometimes wish to do - that she was a crappy daughter to her desperately lonely father, seeing him maybe once a year until he died in a urine-smelly nursing home). 

And I can be honestly say I've had moments when I've truly enjoyed some moments.  I've been surprised to reflect, "wow, I am really enjoying this moment, this laugh, with her".

She is grateful. At least once a week she remarks how amazingly lucky she is to have me.  She says "I couldn't have done this without you."  and that means a lot to me.

And yes, I am also very very aware that this is an enormous honor, a very intimate thing, to be called on by another human to be their 'person' as they face death.  Whether I was working for a complete stranger as a volunteer in hospice or doing this for my mother... it is something so very ... intimate.  Talking to someone about how they want their death to happen.  To be that person that someone else relies upon to ensure a death that doesn't offend or violate them.  Intimate.

But oh. lordie, I wish it would happen soon.  Her death.  And, I know from our conversations that she wants that too.

And, I am sad that when others look at us, they assume a wonderful history that has preceded this last era of her life.  I am sad, I grieve that we didn't have that, that she didn't give that, that I didn't get it.  I am not defective.  Our relationship was defective, and it is not my fault.

But I am just doing what I now choose to do, to be her 'person',  Until she dies.  Every new disease, new symptom, every fall she has, every weak episode, I wonder, is this time?  Is this her last winter?  Her last weekend? Her last Wendy's Frosty?  Will I get that call from her caregivers, "You need to come".  When will she die?

I hope soon.  Honestly.