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Posts Tagged ‘dementia’

Nancy Deming-May

December 2015

I’ve truly wondered over these past years about the “whys” of dementia as my mother has descended down this seemingly endless staircase.  Why did she have to get this? Why does it make her more thoughtless?  Why does she say those hurtful things?  Why can’t she at least remember THAT? Why does she hoard stuff?  Why didn’t she take better care of herself?  Why didn’t she plan better – especially after seeing her parents?

There are also the “whens”.  When did this really begin?  When were her first mini-strokes?  When did she last have her wallet?  When should I take her back to this or that doctor?  When should I start or stop this or that medicine? When is it okay to decide to stop dragging her from doctor to doctor, and just do enough to keep her comfortable?

Then there are the “whats”.  What should, or could, I do differently, so this doesn’t happen to me or my children?  What is the best level of care and supervision to keep her safe, yet preserve her independence as much and as long as possible?

As we have maneuvered these endless questions, I’ve had to work hard to find the good in her illness.  I’ve read books and articles on dying and/or dementia with intense interest.  I was especially fascinated by the article in The Atlantic by Dr. Ezekiel J. Emanuel, “Why I Want to Die at 75.”  A quote of his that I find particularly on target is, “But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.”

I’ve vowed I won’t let myself get to this same level (as my mom) with my kids.  I’ll stop ANY antibiotic – even for the simple UTIs – so I don’t have to drag my kids through this quagmire of frustration, obligation, and guilt.  I’ve wondered about the meaning of it all – the articles that say how much the author grew or learned from their torturous experience of caring for an elderly parent.

With each step down the staircase, I’ve tried to be honest and accepting of myself and my feelings.  I’ve bristled at her “joking” comments that hurt – because she doesn’t have the frontal lobe to sense their inappropriateness.  I’ve done my best to hold my tongue when she demanded certain things – minute in their instance – huge in their history.  I’ve tried to look at the bright side – how things could always be worse.  I’ve been grateful for my sister, and cousins, and friends that I can be honest with – especially those who have shared the same experience and understand when I admit that though I am really good at caring for her (getting her to the right doctors, monitoring her meds, keeping track of her finances, protecting her from predators), I no longer enjoy spending time with her.  This too, brings me guilt.

Recently, my mother has taken a turn for the worse.  After a fall where she suffered an eventual compression fracture in her back, she was wracked with pain and wanted nothing more than to lie on her bed undisturbed.  After multiple, tortuous outings to various doctors’ appointments, we finally determined the source of her pain (it took five weeks).  We eventually brought in Hospice to help.  I found their greatest contribution was giving me permission to stop trying to “fix” everything and to just keep her comfortable.  In the meantime, she has lost over 30 pounds, and though her back has healed, her mind has further suffered from the prolonged period of inactivity.  So now she is “back” and semi-mobile again – though more frail and with just a shred of memory.  I now tell her stories for her, though sadly, she no longer recalls them, even with my prompting.

I wonder how much longer this will continue.  It seems to me that we are “lingerers” in my family.  We don’t go quickly – we hang on and suffer, or at least endure.  This is not how I want to go.

We are back to that Why question again.  When I discuss my thoughts about not lingering with my husband, his perspective is that simple things will be enough for us – one more milestone of the kids, grandkids, or great-grandkids will make it worthwhile.  We joke about what we will need to keep us content – how we love watching and listening to birds, gardening, straightening things up (OCD people understand).  I joke about giving me a flower bush to deadhead or taking me into woods for walks even if I’m in a wheelchair.  I get that, but I wonder about the effect of my likely disability and dependence on my children or primary caregivers.  His family history has not been one of lingering.  They have long independent lives and then slip away quietly and quickly.

As I ponder the “What is enough?” question, my mother continues her decline.  Where is the bottom of this dementia descent?  Over the past several weeks, her memory has been so vacant that she doesn’t even interrupt our dinner conversations to demand an explanation that she can’t understand.  And then, I’ll be walking her back to her room after our meal, and she’ll turn to me and say, “I just love you,” followed by, “I’m so glad you’re my daughter.”  To which I am taken aback, and reply, “Aw Mom, you’re going to make me cry, and I love you too.”

I take her back to her room and get her settled, and as I walk back out to my car, I shake my head and feel the gratitude wash over me.

And I vow to tell my children how much I love them.

Maybe this is enough.

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Best Year Ever!

Best Year Ever!
Nancy Deming-May
November 2012

As I was drying my hair the other morning, (this is when my mind feels free to ramble and think about whatever it wants), I thought about taking my mom with us when we go up to our lake house in upstate New York. We were looking forward to taking down the four different types of wallpaper in the kitchen and dining room as well as bringing in the New Year. I pictured the nine hour drive up where she’ll keep asking the same questions, and respond to our comments meant for each other with the same audio recording – an “Uh huh” followed by a completely rote laugh. We could get a good audio book though, and that might help minimize the repeat questions, but probably not the rote laughter track.

Then I moved on to the New Year’s Eve celebration.  We would probably be at our house up on the hill, watching the Dick Clark’s (or whoever his replacement is) New Year’s TV special, all the while wondering who all the entertainers were – in between our in-front-of-the-TV cat-naps.  And when it came time to toast in the New Year, we would clink our glasses together and wish each other a Happy New Year and my mom would say something like, “Here’s to our BEST YEAR EVER!”

I don’t know why that annoys me, but it does. It takes me back to my childhood, my whole life really, of her over-the-top encouragement and visions. When I got my first and only toe shoes for ballet and she cheered and said I could become like Maria Tallchief, and then she told me how Maria would dance and dance until her toes bled.  Yuck.  I danced a little bit and my toes hurt like hell, and I did a cartwheel and quickly moved on to cheerleading.  Fortunately, my mother didn’t know any self-flagellating cheerleaders she could hold out to me for a goal and I contentedly jumped, yelled, and clapped, and herkied (however you spell that jump we used to love to do) my way through high school.

When I was a senior in college and they read letters from our mothers at our last sorority meeting, besides the usually embarrassing stuff about the boys I had dated, along with the horrible photos from high school of me in my vinyl laced-up boots, my mom had to include her prediction of my being in the White House (as president no less) and how I would still be serving strawberry daiquiris (my signature drink).  The White House?  Really?  Puleeeeese.

As my hair dried and I meandered about my mother, I thought, she does indeed live in hyperbole. Everything has to be “the best” and any little achievement is surely a clear indicator of future world renowned acknowledgement and riches. After I walked across the stage to receive my diploma for my Masters of Science degree at the Air Force Institute of Technology, she giddily told me, “You were the prettiest one up there!” This one was odd because her superlative kind of missed the point of the whole ceremony.

Her hyperbolic enthusiasm continues on to her grandchildren.  When my youngest started showing significant improvement in his cross-country course times (up from one of the slowest on the team), she mused about his future in the Olympics – an absurd thought that almost diminishes his own personal achievement – which is where I prefer to focus.  What’s good for HIM – for ME – for OTHERS – NOT how do we compare to the BEST in the world!

She used to listen to a church TV program on Sunday mornings where their mantra was “The best is yet to be!”  (This was one of those outrageous church shows that were hilariously lampooned on Saturday Night Live years ago.)  I always kind of puzzled about this.  Why “to be”?  That means you never get there.  What’s wrong with right now?  Why do we always want to put this off?  And why does it always need to be “the best”?  As I have gained in maturity I have discovered that I’m okay with “okay” – and right now.

Does every wish need to be a superlative?  The ultimate?  It’s truly cultural – think of “Have a great day!”  I missed hearing that when I lived in Holland for a number of years and I couldn’t understand why they made fun of us with those little sayings.  The Dutch are notoriously matter-of-fact and perhaps I’m becoming more that way as I mature (though I still like to hear “Have a nice day!).  I value accuracy over delusion – no prejudice there right?  Too many Maria Tallchief and Olympic nudges in my life I suspect.

My preference is for accuracy and I don’t mind a positive spin – just don’t overdo it.  I realize that many of my friends have the opposite problem – a mother who is Eeyore incarnate – “WOE is me.  My life is TERRIBLE.  Nothing EVER goes my way.”  We all know the archetype and most of us avoid them if at all possible – family just makes it a bit tougher.

So, okay, I’ll take my over-the-top mother.  Better to be compared to Maria Tallchief than be told I couldn’t dance.  And that’s HUGE (if I can be a bit hyperbolic!)  Thank you mom, for always encouraging me and envisioning the “BEST-ever” for my future.  But this New Year’s Eve, it doesn’t have to be the BEST Year EVER!  I think it’s okay to just be happy and content with another GOOD year.

Clink!

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Okay, when I started this blog I thought it was going to be primarily musings and sharings about life with my parents with dementia.  But I have found that I have been resisting postings about that subject for the most part.  Well, recently I felt compelled to write a poem, something I haven’t done in years – it used to be a wonderful teenage-angst outlet when I was in high school.  Now I suppose it’s a more-than-middle-aged-angst outlet.  It’s a little darker than I find I’m wanting to post on here, but I want this post to be all about sharing – the experiences, the joys, the burdens.  I’ve been struggling with my mom’s dementia and wondering some of these things I captured below.   Hopefully, those of you who identify can share back and we can all feel more empowered or at least know someone else has “been there”or “is there”.   The amazing thing about when I write something – dark or otherwise – I feel cleansed, released, uplifted.

Please read my poem and let me know your thoughts/reactions.

I believe my answer to every question is yes, and that’s perfectly okay.

Without Regard

By

Nancy Deming-May

Will I feel regret

For not seeing your humor,

For not enjoying your company,

For not getting past the piles,

And reacting to the untrue?

Will I remember the anger and the sadness

In response to your political barbs,

Your invasive questions,

Your accusations

That MY memory has failed?

Will I miss the phone calls

And the demands?

Will I feel bad that I learned to lie to you

because you asked questions

without regard?

Will I set a good example

of patience

For my own children?

Will I plan better

So I am more prepared?

Will I make better choices

So my children aren’t forced

To make the harder ones?

Will I feel I made

The right ones?

Will I long for more time

And opportunities?

Will I remember the good

And tell my children

Funny stories of you

that make us all smile?

Will I learn more compassion

And more empathy

As you lose more of yours?

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