Over troubling waters

via Photo Challenge: Bridge My local bridge always smelled of white bread baking when I was growing up and we came over it from Queens. In those days, it was just the 59th Street Bridge, now it’s named in honor of one of the city’s recent mayors, Ed Koch. The bakery on the Queens side […]

Over troubled waters

If you click on the link (as in a connection) you will see pictures of Burt and me from before.

There is a circuitous link to a book I wish I had read before for me.

Travelers to Unimaginable Lands was suggested by fellow carers while I was caring for Burt.

In it Dasha Kiper gives advice and sensible guidance that is very soothing.

She strikes at the commonality of experience during these journies of ours. If you are still caring for a p.w.d. this is a must-read. Well, there are no shoulds or musts, but you will find it of comfort. And, it’s not a long-read.

Travelers to Unimaginable Lands by Dasha Kiper is my book this week.

Yes, dear, I do

Do I miss you, darling?
You, of all people, know.
You know I miss you, 
And, even, I'll bet, how
Deeply I miss you. It is
Intense, this absence of
Yours. Yes, I miss you,
Dear. Yet, also, I live my
Life, a life different from
The one we shared, the
One I miss when I say 
I miss you, darling, so 
Much. I miss you, and I
Miss you and me, the 
We we were. Yet, I also
Live my life, one that's 
Different from the one
You and I, we shared.

I ran into…

Last week I ran into a friend who now owns a bar-restaurant that Burt and I frequented; we hug, she offering me condolences and saying now you’ll live your best
life. Then she’s telling me that Burt was a character. Hearing her assessment is a blessing.

That day, I also ran into a Social Worker I had consulted during the journey. She’s from a nearby community center where Burt had joined me for Caregiver Appreciation Days. After our meeting, and BTW, we exchanged hugs. I sent a photo of her with Burt from one of those events.

Seeing people who knew him feels so good. Burt still has this connection here, not just with me, but with our broader world.

The past

Finnegan’s Wake is on my path to the senior center.

I must have walked by dozens of times, but it’s only today that I ran into the woman who owns the place. We exchanged hellos and haven’t seen you in a long time.

I explained about Burt’s dementia and told her he’d died. It’s recent, she sympathized, and invited me to come by.

She said Burt was funny, he was a character. I agreed.

I had avoided going to Finnegan’s during his illness. It had been one of our regular lunch haunts. I did not return since he passed.

It’s likely I will now.

A second brush with the past also occurred today. Sometimes, it feels as if we conjure people, and in this case, my friend and I had mentioned N just last night. And now, here she was waiting at the elevator. We hugged as I had with my buddy from Finnegan’s.

The past made my eyes tear, and it felt like I had experienced such nurturing encounters.

An abundance of the past.

Soothing

What would your life be like without music?

Music was a big part of my care program for Burt. It is soothing to hear the lilt, the beat, the sounds.

Burt usually responded positively to music. Neurologists have done studies that show the benefit of music for p.w.d.s. It is interesting that our loved ones will respond to the music they loved earlier in their lives.

This was true for Burt who was happier listening to the music of his(our) youth.

His interests were eclectic, so sometimes a piece by Tchaivofsky or a jazz quartet drew a smile.

Going to the movies

It seems that Burt and I, having gone on our first date and with our second one scheduled for the Sunday, saw Pretty Woman on Saturday night, separately and at different movie theaters. I saw it with my friend M. Burt, as I recall went on his own.

This memory of our early history came via a book I was listening to this evening.

Burt and I saw Pretty Woman  together often over the next many years. We watched it on television all those times, and probably were lucky enough to have been able to recite all its plot points.

As the years went on, we did develop a regular cinema routine, going to the movies at Christmas time and often on New Year’s Eve. And we watched a lot of the film we enjoyed on TV.

We had our home-view favorites, like Pretty Woman….

It will be different

Everyone’s journey is their own

Your experience with your pwd will likely differ from mine. It’s never the same, yet there are the broad strokes.

Different and the same, there are symptoms that may be familiar or that you and your loved one may never encounter.

The saying among LBD carers is “if you’ve met one person with LBD, you’ve met one person with LBD.” Lewy Body Dementia is not the only dementia for which this is true.

I advise you, if you are starting this journey, or feeling at a loss, don’t anticipate. Staying in the moment will help you. This was a hard lesson for me, as I struggle with the adage to not buy trouble.

This advice does not suggest you proceed in darkness. I studied what I could about Burt’s illness. I allowed others who were caring to guide and support me. In fact, I sought out support groups and professionals to teach me what I needed to ease his path and mine. On occasion, I was able to learn from him as well.

You see, as time passed, I was able to stay mindful and to seize what the moment could instruct.

Protected

Were you my protector? Perhaps.
Yes, I can see you in that light; as    
My companion, and the one holding
Me tight, your arms a protective
Circle, you by my side, caring and 
Guiding. Protecting me, you, my
Champion always by my side. You
Were my protector. Yes, and my
Companion, my friend, my lover
My beloved. Yes, you protected me. 
Your love protected me. It was your
Care, caring that was my amulet.
Your love, my talisman, mine, it was
Yours. I protected you as best I
Could as long as it was possible, 
And you protected me, looked out
For me as best you could as long
As possible, but now, it is your
Memory that's here to protect me,
Guide me, a memory of love, our
Love, encircles me, holds me in
Its protective circle. Your memory
Is my protector, as I remember you,
I now protect you, your memory.
That is what love and care and 
Caring does. Were you my protector
And, yes, was I yours? That's love.
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