"If Alzheimer's Could Speak..."

This was posted on Facebook one day last week and really touched me.  I admire the empathy of the author who was so able to "get inside" the mind and heart of her loved one.  I am sure, if he could, Bob would tell me this is exactly how he feels:

If Alzheimer's Could Speak...

by Tara Reed

Talk to me...

I can hear your words

and they still touch my soul.

Smile at me...

My eyes can see you and feel your heart

even if I don't remember how to smile back.

Hold my hand...

I can feel your energy when our hands connect.

It makes me feel safe and less alone.

Love me...

 My heart can feel your love even if

my words can't express mine.

Live your life...

Help me on my path but don't press pause

on your life.  Be the vibrant person I know and love.

Trust the process...

I know this is hard and not what we planned

but trust the process.  We can't control it but 

we can choose our focus.  Remember the good

times, know that I am ok and that

you are in my heart always.

Reflection on our Walk

We walk in silence.
Both of us know
you are leaving.

Neither of us can change it.

You have no choice, no say in the matter.
I don't beg you to stay.
That would only make it
harder for you.
You have no choice.

Even though you don't want to leave,
you will keep on going,
keep leaving--me, all of us,
and everything you've ever known,
done, been able to do, loved.

You will keep on leaving
little by little.

And all I can do is
hold your hand,
wait and watch
until you're gone.

You know this.
I know this.

We walk on in silence
holding the knowledge in our hearts
where we don't need words.
We already understand.
Our hands hold on
for our dear life.

                                --May 25, 2016

Good Friday Grief

     This morning, after watching Bob struggle to figure out where his fork was (sitting next to his plate), I offered it to him.  Then I watched as he tried to figure out what to do with it.  So I put some pancake on the fork and held it out for him to take.  He took it, but then struggled with what to do next.  Ultimately, for the first time, I ended up feeding him.  This was followed by his not being able to drink his orange juice.  I put it in a cup with a handle, thinking that might help.  He didn't know how to pick it up.  Twice I helped him put it to his mouth and he managed to drink some, but it was difficult so we have put it away for later.  Maybe this is a passing dilemma, as many Alzheimer's losses are--they come and they go for a while.  Or, maybe it is the beginning of a new place along the way.  We will just have to wait and see.  For now, my heart is even sadder for him.

Words to Cherish

     Last week during her school's spring break, Hope and her brothers were both here the bulk of Monday and Tuesday.  At one point during one of those days, I was outside when Hope came running out the front door and exclaimed, "Grandma, Grandma!  Grandpa just said his second word."  I couldn't imagine what she meant by "second word" and so I asked her to repeat what she had just said, thinking she might not have said exactly what she'd meant.  She repeated it word-for-word.  Of course, then I asked her what Grandpa had said.  She was obviously deeply pleased to report to me that Grandpa had said, "I love you, Hope."  What a treasure he had just given her!  What a sweet memory she had just given me!

Witnesses to our Story

     Susan Sarandon's character says, in the movie Shall We Dance?:    

“We need a witness to our lives. There’s a billion people on the planet…I mean, what does any one life really mean? But in a marriage, you’re promising to care about everything. The good things, the bad things, the terrible things, the mundane things…all of it, all of the time, every day. You’re saying, ‘Your life will not go unnoticed because I will notice it. Your life will not go unwitnessed because I will be your witness.’”

As the abundance of family has been arriving and departing here these past weeks, I have begun to realize that "witnessing" is also part of the gift they are giving me and Bob--witnessing our lives and reminding us of the worth of them, especially of ours together.  Who else but family would drive for two whole days just to be here with us and wash dishes, do odd-jobs, run for groceries?  Who else but family could recount the hilarious and not-so-funny stories of our past, and stir up the poignant feelings that go with those memories?  Who else but family would take whole days, weeks, and even months out of their own lives and give them to us--to support and encourage us, to rejuvenate our spirits and remind us of where we've been and what our story means to others? 

Tonight I am feeling so blessed by the love of our families, by their willingness not only to support us but also to witness for us and with us "the good things, the bad things, the terrible things, the mundane things..."  Their witness has been invaluable to me, filling in the gaps that have begun to grow in my own ability to witness and "care about everything."  The stories they've recalled, the moments they've observed, the concerns they've reflected have moved me deeply and reminded me who I am, as well as who Bob and I are--and have been--together.  

More Sweet Moments

     All three grand kids were at our house today--spring break.  At one point, I was out in front of the house doing something in the yard when Hope came rushing out.  "Grandma," she said excitedly, "Grandpa just said his second word."  Not sure I'd heard correctly, I asked her to repeat.  She said it again, exactly as I'd thought I'd heard.  So I asked what Grandpa had said.  With a big smile, she responded, "I love you, Hope."  Oh, my heart.  Such a beautiful gift to her and she was obviously delighted.

     Then later as we were picnicking at a popular Taos outdoor play space, Frankie--who was seated on the ground near Bob--looked up at him and asked, "You doing okay, Grandpa?"  It makes me so happy that the kids love and care about Bob so much; I know it means the world to him as well.

Of Greetings and Goodbyes

     This Thursday, Bob's sister Barby will be returning home to Florida having spent exactly one month here.  Her help and cheerful presence have been more valuable than I could ever fully describe.  She instigated a major rearranging in our kitchen cabinets which, other than causing both of us to be disoriented a bit for the past few days, has also made our kitchen much more efficient.  She also helped with other big "projects" that I had been postponing, the biggest being cleaning our oven.  She took on lots of daily tasks which have made it easier for me to focus on Bob, and to get some brief time out on my own.  Besides all these really helpful tasks, her loving presence has made everything easier and lighter for me.  I have literally felt myself relaxing more just because she's here, and I have been grateful to have her here to generate memories for Bob, to help me sort out decisions we have faced or may face soon, as well as to share "sisterly" conversation on topics both light and serious.

     In the last hour, I said goodbye to my brother Kevin who came down from Denver for the weekend.  He, too, was a source of great help and loving support.  I had a "to do" list for him when he arrived and he only needed to hear about it once and managed to get everything done, including "teaching" me the fine points of washing our car at a nearby car wash--something Bob has always done and which I've been reluctant to do because I hesitate to hold up a line of cars behind me while I muddle my own way through the directions!   Yesterday, we all piled into our van and took a fun driving tour of the Enchanted Circle, a scenic byway in northern NM.  Kevin and Barby bought our lunch and dessert in Angel Fire, then we stopped by the Vietnam Vets Memorial, and took pictures of New Mexico's highest mountain--Wheeler Peak.  From there we traveled alongside the ice-covered Eagle Nest Lake, took time to play in a park in Red River, walked a bit at Eagle Rock Lake in Questa, and finished our tour at the fish hatchery where we fed the trout.  A good time was had by all.  

     As Barby leaves, she knows more help is arriving.  My siblings have begun setting up times to come, and the first one will arrive next Sunday from Macomb, IL.  Ginny and her husband Bill will be here until the 16th of March, and then my brother Pat, and perhaps my sister Mary, will be showing up at our door on the 17th until the 22nd, coming from Peoria.  My sister Lee Anne and her husband are hoping to come from their new home in Florida in early April.  Meanwhile, friends in Michigan and Montana are looking to fill in the time-slots not covered by family.  I am overwhelmed with gratitude for all the love and support that's being lavished on us right now.  I guess my initial blog entries were heard as a cry for help; it wasn't my intention, but I'm glad it was "read between the lines."  I am also really glad to be part of not one, but TWO, large and loving families, and to have such wonderful friends who are so much like family that they, too, want to be with us in this journey.

     We will also be getting help from hospice beginning this week.  Bob was discharged on Friday from home health and I expect to hear Monday or Tuesday from the hospice coordinator to get that set up.  I am feeling very thankful for the many resources and loving hearts in our lives.