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.

The walk-in shower

A visit to a friend whose walk-in shower was enviably better appointed than the one I had had installed was a reminder of why I ordered mine. I had hopes that it  would make life easier for Burt after his stay in rehab.

Bathfitters made quick work of replacing the tub with the easy access shower.

Burt had avoided showering for most of his illness. The carers at rehab had succeeded in getting him to take two showers over the course of a couple of months.

Once home, Burt showered on two more occasions with his OT.  He did not relish getting wet.

This reaction, I need to tell you, is not unusual for a person with dementia.

The shower has served me well, but it was of no help to Burt. The alternative for the caregiver is bedbaths. I used a soapless soap, one that didn’t require rinsing. There are many available, and I recommend you use a soft cloth for a gentle experience.

Dreaming

My friend wondered where our dreamscapes come from when I shared my dream with her.

My dream of Burt, probably last
Th or Fr was meant to be noted on the following morning.

I forgot to write it down then. When I did recall it, it struck me as odd, funny and pleasant.

We wanted to go out to eat, and there was a  fancy new Chinese place. We got on line for the advertised $25 dinner. I said you know it’s $25 per person. 

I suggested that Burt get one dinner to go. We’ll eat it at home. Burt went in to the restaurant and I went to a balcony across the street.

Burt rode a tricycle with an open work metal basket on its front with the take out bag. The bag was a proper paper shopping bag like one from Bloomingdale’s. He pedaled down the middle of the street. I believe I called down to him. Then I awoke.

When I awoke, I said to myself, I have to note down this dream.

I forgot then but, happily and gratefully, remember it now.

I remember

There is a phenomenon of memory that I am just now observing.

It feels like it happens backwards.

Let me clarify if I can:

I am not drawn to act on the memory, rather it coincidentally comes to me as I go about doing what I would do.

But, what I do is not coincidental. I am drawn to walk that street, drawn perhaps by the memory.

I do not recognize my memory, until I have walked that street, stopped in that shop.

It is then that I remember.

I act on a memory I am unaware of until it is embodied.

Then, I can say, with a smile on my lips, ah, here is the lobby where Burt and I would sit while waiting to go to a show. Now, I remember that.

In other words, where I am is not a memory tour it’s one in which  memories unfurl.

Honestly, there are so many good memories for me to uncover that perhaps I will encounter them one upon the other everywhere I go.

I hope so.

Grief, grieving

Is it possible to turn grief into grievance? I accept that grieving has no timeline; I don’t want to shoo my grief away. In a way, it’s my grief that honors Burt.

So what am I talking about? Is it the sense that long term grief is a kind of wallowing? Yes, that is part of it.

Get over it, enough already. I don’t know if that’s a societal attitude. I am hearing that from myself. Not imminently. This moment is too soon for me to stop grieving. But I think that such a moment should come.

I know that that is not true.

Grief and sorrow, mourning and sadness seem like kith and kin of a loss. We mourn in sorrow but grieving does not mean we are perpetually sad. Grief becomes a part of our normal, natural life.

I know that that is true.

Grief turns into memories and remembrance. It is our way to honor our beloved. My grief will always continue to honor Burt, not only in sorrow but in happy memories.

I was safe. I thought I was safe.

The above is a prompt from Wild Heart’s Miribai Starr- well the second half is. She is guiding the grief workshop to which I am listening. It debunks some myths about grieving. [Wild Heart and Holy Lament, a grief community, is led by Miribai and Willow Brook.]

I thought I was safe; it’s not the same as I was safe.

None of us is shielded from being human, being frail, being mortal. Our loved ones, whom we desire to keep safe, they too are mortal.

When death takes your beloved, as it did mine, we are perhaps more devastated than if we were stricken and died.

More surprised than we would be at our own dying. As human, we know of our mortality. It is our gift and our millstone.

I was surprised when Burt passed – although his death was fully expected.

He had been announcing it for four days when he succumbed. Yet, I was surprised, prepared and not prepared. I thought I was safe, but I knew I would lose him; I knew I was not.

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