Dancing Hands

Dementia and decline. Decline and dementia. Disease and depression and doctors.

It can feel all consuming, as if all those "D-words" are the only things that exist, as if the person suffering is hardly there, crowded out by D's big and small.  My father's time these days is spent managing all those D's, trying to make sense of them, trying to respond to them, and trying to make BIG D DECISIONS about care for his wife of 49 years, 8 months, and 18 days.

My too brief visits with my mother these days are overwhelming for so many reasons: guilt that I cannot visit more often; anguish over what she is experiencing and our inability to help; compassion for her, and for my father; gratitude that I can be there at least in some small ways.  And great sadness over how much she has changed.

It is a painful time, but it is not without its bright moments.  As is usually the case, one such bright moment came to me, and to my mother, courtesy of one of my kids.

I brought Little T to visit Grandma Rose a few weeks ago.  Our stay was a mixed up, jumbled bag of good and bad.  When we walked in, Grandma immediately said: "Boy am I glad to see you!" and we proceeded, over the course of about 45 minutes, to talk about things Little T was doing in school, what her siblings were up to, the book Grandma Rose wrote, and myriad other things.  These brief interactions were punctuated by my mom's anxiety bursting forth in expressions of fear and struggle.  One minute she was talking about her book, the next she was wailing about how the staff was punishing her, the next worrying about spitting too much, or her hands trembling, or the pictures on the wall moving.

(A side note: One of the most challenging things for me, about my mom's dementia, is that I'm certain that many of these things are truly happening for her; she is not imagining double vision, for example, or the walls moving, and those things alone would make a person "crazy." It's easy -- but not accurate -- to lump all of a person's odd behaviors into the category of dementia. They do not all belong there. If my hands trembled all the time, it would drive me nuts and would be such a distraction that I'm sure I'd talk of little else. That's not dementia: that's just life. In many ways, it does not even matter where normal ends and dementia starts. She still deserves to be treated with respect and dignity. As do we all.)

Little T did an amazing job of responding to Grandma's now and then questions and of trying to respond to what she thought Grandma might need. She offered tissues, looked for a book to read her, and gave me little suggestions of things that might help.

After about the 6th or 7th time Grandma raised her hands from the bed to show us, with some force and agitation, how much they were shaking, my giant of a tiny seven year old whispered something to me that made me smile. I told her to tell Grandma. Here's what she said:

When your hands are shaking like that, 

you should pretend you have jazz hands!

Something amazing happened. Grandma laughed.

I had not seen that happen in months.  I wanted to grab that girl, swing her around, hug her tight, and tell her how brilliant and wonderful she is.  Instead, I laughed too, choked back a few tears, and joined in as Little T and I did our best jazz hands, in solidarity with my mama, whose hands now danced above her bed cover.

I thought this a rather remarkable interchange.  What I learned later is that not only did it make my mother laugh, but it stayed with her.  She told my dad the next day about Tallulah's suggestion to pretend to have "dancing hands" and since then, she will refer to her dancing hands frequently, with less agitation now.  She also mentioned those dancing hands to me, almost a month later, recalling that Tallulah had suggested them to her.

She's not happy that her hands shake.  But I think -- I hope -- that she now has an occasion to recall a small bright moment with her granddaughter when the shaking thing takes over.  It makes a difference.  It's a chance to smile, when she has too few of those chances these days.

I think, in the midst of my daily striving, while I'm trying to raise children right and do my (paying) job well, as I'm steering teenagers to good choices, and working with Rick to get the bills paid and the carpools accomplished and the house maintained, that the Jazz Hands moment is the single most significant event of the last several months for me.  That moment is proof positive that simply being present is, truly, the most important thing we can do in this life and for each other.

It was absolutely not an earth-shattering moment.  It was a quiet, simple laugh, almost no more than a smile.  But nothing has meant more to me than to see my mother laugh that day, or to hear that the dancing hands have stuck around.  Everything else swirling around me pales by comparison.

Jazz hands, dancing hands: take a small moment and transform it by saying something, anything, to make someone else feel better.

When it works, it will stay with you forever.

What's Happening to Grandma

My mother feels abandoned.

She is 77 years old, and suffering from Alzheimer's disease, or at least, that's the best guess of doctors who have been trying for over two years to figure out what exactly is going on.

This is not a post about who she really is, or how unfair it is that dementia has so utterly altered her.  I am positive I have words upon words to fill up posts on that topic, posts that may or may not ever get written.  Suffice to say that I cannot think about my mother without a torrent of thoughts and feelings about the difference between what she is like today and what she was like before "the troubles."  I think she would appreciate that reference, scholar as she is of all things Irish.

This is a post about watching my children struggle with watching their grandmother struggle.

I've read things before about the so-called Sandwich Generation, that place in a person's life when she is both dealing with aging parents and raising children.  Before being one of those people, I only ever thought about the difficulty of doing both.  But over the past couple of years, I've realized the emotional challenge of (a) not having my mother around to talk to about raising the children and (b) having to help my children deal with what's happening to their grandmother.  This part of the sandwich is all about feeling the weight of the two generations on either side of me.

It has scared me, having to tell my children sad and difficult details.  It has scared me, imagining how they will react to her continual decline.  But two experiences recently have helped me realize that these children of mine are strong, and that helping them "deal" with all of this is actually helping me as well.

A few months ago, I took my two youngest daughters, ages 7 and 9, to visit my mom.  Honestly, I wouldn't have done this if I didn't have another errand to do near my parents' house and the timing was such that I couldn't go without them.  I wouldn't have done it otherwise because visiting mom is hard enough for me, and I couldn't quite imagine what it would be like to have my little ones along.  I took them first to the local park, to swing and play and grab a snack.  When I realized it was almost 6pm, I hurried them away from the park, saying: "Come on girls, we need to hurry.  I want to make sure we get to the bakery before it closes."

7 year old, almost brightly: "And, we want to make sure we get to grandma's house while she's still alive!"

Kind of a shocking thing to hear.  I tried to take it in stride and hear it for what it clearly was: acknowledgement that things are not OK for grandma.  I told both girls that while grandma was sick and having a hard time, I was sure she would be there and happy to see us when we got there.

When we did get there, it was a tough visit.  The girls hadn't seen grandma in months, so there was the obvious and striking physical decline for them to deal with.  Also, my mom was feeling lonely, with my dad away for the day and her usual caregiver out for a few hours.  So she kept telling me and the kind woman filling in as caregiver that she has been abandoned.  We assured her this wasn't true.  But when it came time for me take my daughters home, it was pretty tough to be telling her goodbye while she kept wailing "Abandoned!  Abandoned!"

I was devastated that my girls had to hear all of that.  We talked about it on the way home.  They talked about it with their dad over the next few days.  Our seven year old, in particular, wanted to talk about it being sad.

But a few weeks later, when I was again going to see my mom, my youngest daughter begged and pleaded to come too.  She wanted to see grandma.  She wanted to tell grandma that she loved her.

She was not scared off by the dementia or the sadness: she wanted to run back into that house and be a force for good.  I tell my children, almost every morning, when I leave the house or drop them at school: "Be a force for good in the world today!"  Usually, I'm being goofy, although I do mean it, every time.  Apparently, the little one is listening.  Actually, it's probably not me: it's probably just her natural instinct to hug people who are sad.

The other story comes from my oldest.  He also came with me to see my mom recently, and he hadn't seen her for over a year.  He was shocked.  I was sad for him, and still am, because I know that what he saw that day is staying with him.  I know this from the questions he has asked me every couple of days since that visit.  First, he told me that it was really hard for him.  I told him I knew that it was and that I was so proud of him for being able to talk to her directly and kindly, even while it was hard.   Then he asked me these questions:

What is this like for you, mom?
Is grandma in pain?
Does she laugh anymore?

A few days later:

How is papa (grandpa) doing with all of the stuff grandma is going through?  Is he OK?

A few days later:

Does grandma remember her friends?  Does she still care about them?

A few days later:

Does grandma get to go places anymore?
Does she enjoy things still?

Each of those questions gave me a chance to say a little more about my mom and what she's going through.  And surprisingly, articulating the answers helped me realize that I was worrying over many of the same questions.  His questions also made me (again) marvel at the way his mind works, at the way he always pushes us, always wants to understand what other people are going through.  Talking to him about my mom is helping to demystify for me the whole scary process of helping my kids deal with what's happening to grandma.

These two stories from my children make me grateful.  Grateful that despite being uncomfortable and nervous and fearful, I have had the chance to talk to them about what's going on.  It has helped me more than it has helped them, I think.  They have what they need: the instincts to love the people they love, and the need to ask all the right questions, the ones about laughing and pain and remembering our friends.

All I have to do is pay attention.

* * *

Simply and Only

I wrote a brief post not long ago about my mother's declining health.  Since then, she has been diagnosed with Alzheimer's disease, or some other similar neurodegenerative condition.  It has been a difficult autumn for all of us, especially and of course, for my mother and father, for whom this suffering is a daily, hourly, minute-by-minute experience.

The utter unfairness of dementia takes my breath away.  The seeming annihilation of dignity and selfhood feels like a punch in the stomach.  The contradiction -- the desire to be present juxtaposed against the desire to run and hide -- is painful and confusing.

And everything is happening so fast.  We have no time to get used to any new normal, no time to make adjustments to our expectations.  There can be no expectations anymore.

What is left for us, in this moment, before things are as bad as they have the potential to get, while my mother is both suffering the effects of dementia and painfully aware that everything is going wrong?

Perhaps the lesson of dementia is that what we are left with is what is at the core of every relationship we have.  What we are left with is learning that dignity is not ability, or composure, or mental quickness, or eloquence, or any of the things that we miss in the person we love who suffers from dementia.  What we are left with is simply and only being present, without any agenda or purpose or need.  

What would happen if we were present to everyone in our lives this way, not for any other purpose but to show the depth of love we feel?

I have no idea what I am talking about.  I am sad, and scared, and I want my mother.

* * *