When are you most happy?
When Burt shows delight, as he chortles, happily laughing at his own jokes, I am happy.
My job 1 is keeping him at home, safe, secure, and comfortable.
If he’s enjoying himself, it makes that job so much easier.
Admittedly, my frustration trying to get his head back on the pillow last night soured his mood. He bounced back, and by bedtime, he was again chatting away. He was comfortable. He was safe. He was secure. He was at home. He was with me.
It’s been at least two years since I first met this sign on a stretch of East End Avenue. I took it both at face value and as an indicator.
Life, our life, had definitely hit a patch of the rough.
In our case, we had not had or did not heed or were not able to read the warning sign. Then.
It’s clearer now. We see it, or I do as Burt quite happily chortles over jokes he tells himself and his imaginary cohort.
We’re going to proceed with the necessary caution. It’s a «rough road« we’ve hit. The sign I passed yesterday was a confirmation.
Who said «The unexamined life is
Not worth living,« I have taken that
To heart, instilled it with a power so
I examine every thing as it happens
As if by tearing at it, I will find a gem
Of wisdom, learn a life lesson even
If it's from myself alone for myself
Alone. «Lest I forget« is a phrase I
Stick to as well. I have to examine
My life in the moment, «lest I forget«
And if there is pain in the moment, I
Have to look at that, too. Later it will
Be too late. "Don't turn those coals,"
You say, "Let them burn. They're still
Hot." «Too hot to handle,« I wonder.
It’s very exciting to hear that one of my favorites is taking on the role of Mama Rose. I could easily say one of our favorites. It’s a bit sad that we won’t be there to witness her interpretation.
For the 2003 revival, Bernadette Peters made her entrance down the orchestra aisle, stopping by Burt’s seat.
Shortly after that, she made an entrance, again stopping next to Burt, at Daniel’s. Her destination for that Thanksgiving dinner was a private room and therefore grander than our little table. But near.
We have seen a lot of Audra McDonald over the years. From Ragtime to an NYE at Lincoln Center, everything she did was a treat.
That is not to say that we have seen enough. So, as I said, I am sorry to miss her in Gypsy. Her performances were always clear and poignant. I know she’ll give Rose a memorable spin.
Playdoh makes an unexpected case for permanence.
Playdoh, it turns out, will dry. You can even put your creation on a tray and bake it.
I am looking forward to a chance to try to work with Burt with this material.
His current hobby seems only to be talk and lots of it.
Lately, it’s accompanied by plenty of chuckling. It’s a treat.
Burt had many anxieties when we first met, had had them for years. He feared train tunnels and getting stuck in them.
He always faced his phobias. He planned trips for us, often by train. In fact, trains became our favorite mode of transportation.
Our trips were special. We went to Mystic and spent a day with the grandchildren. They made a memorable mess at Mystic Pizza.
All the adventures he arranged for us are wonderful memories. The long weekend we spent at Saratoga, however, was magical.
We saw the sights via a tram or trolley. We went to the races.
We swam in a pool across the street from our inn. I have a surreal, dreamlike recollection of a bizarre and exciting restaurant.
Burt bought me a souvenir. I cherish it. I cherish all our life together.
We all die alone; it’s our own
Personal drama. Noone should
Take our spotlight. I will stay
As witness. I will not let him go
Alone. I will be the chorus to his
Agamennon, the Fool to his Lear
Burt’s decline, as I have mulled it over and over, is a dark time for me.
It is also dark for him. He speaks of dying. He is anxious, paranoid, and sleeping.
One night, he was up with the full moon, talking and talking.
The next, he slept on through the day and into the night as a big moon still shone through our window.
That day and night waking was intermittent as sleep had been the night before.
Death will come, I hope quietly, I hope peacefully, I hope with the light of the moon.
I will be there, in his shadow, to hold his hand, as witness.
It’s not imminent. I don’t know why I feel I have to prepare, to brace myself for its inevitability.
In the meantime, I just want to keep him safe, comfortable, and happy. These last couple of days, he seems to have accomplished the happiness card.
That’s wonderful to witness.
I am enjoying his pleasure. It’s delightful.
One of my fellow LBD spouses has been pushing the idea that a full moon influences behavior in our loved ones.
I was skeptical. I tend to be.
Serves me right that on Saturday with a full moon looming outside my window, Burt was awake and conversing until 2:30 in the morning.
Full moon. Strange behavior. Makes sense.
Let’s look at what being confused is really like. I think we often feel that it’s a pleasant state or, if not quite pleasant, a not-unpleasant one. You look around, and things don’t make sense, but you know, who cares: It’s all good.
In this assessment, confusion is confused with the “no worties” state of mind.
Those whom dementia confuses aren’t enjoying some form of just being out of it.
It’s not an exotic trip on a magic mushroom.
It’s decidely not fun and games. It isn’t a voluntary experiment.
Confusion is not knowing where you are, who is with you, or even sometimes who you are.
The confused are disoriented and frightened. Anxiety is a constant companion.
Mid-conversation about getting something to eat, Burt says, “Now you’re scaring me.” I don’t think he’s enjoying his confusion.
I started mourning…. I was going to say right away, well, that’s not true. The first losses kicked me in the gut. They perplexed me. I was angry. I was scared. I didn’t know what to do.
I started mourning as I got used to the loss. Losses, that’s the right word; they are incremental; each loss a little deeper, a little more refined. Stealing a little more of him from us, from him and me.
As I began to get my footing; to understand what was required of me. That’s when the mourning really began.
That’s when I knew my loss and felt his, too.
In the beginning, I was just so caught up in the ‘to do,’ and the ‘how to,’ the practical that made Burt’s diagnosis my own.
In the beginning, I had to learn how to take care of myself and him.
They refer to anticipatory loss, but it really isn’t. It happens in real time and every day as this disease progresses. They call it ambiguous grief, but there is little ambiguity in it. It happens in real time, and it’s with us every day, too.
I started mourning after the beginning.
this is our life