Cookes

Evening Get Together

When you first get off the elevator at the fifth floor, you enter the main living room area of the memory care unit although it is somewhat more institutional than it is home living room. It is also known as the "Music Area" in which one CD or another is usually playing, classical, Frank Sinatra, etc. A very calming area.

After dinner the other night; Gregory, Manny, and I were joined by Gerrie and her son and son-in-law Howard and Robert as we sat in a circle in the living room. With music playing softly in the background, those of us who could carry on a conversation did and the others enjoyed being part of the group.

I noticed at Ben and Edward were hanging out around the corner listening in on our discussion. I invited them to join us which they silently did. Ben sits in a baby stroller type PVC pipe construction that enables him to walk around the unit. Edward, formerly a doctor, uses a wheel chair and "kick walks" himself around.

So picture this, here is a group of 8 people sitting around in the "living room" after dinner having a friendly conversation. If you can stay in the moment and see through their eyes, a good time was had by all. What a strong sense of community!

Heart Advice

Understanding two terms is necessary in understanding this week's "Heart Advice." It has implications, if read carefully, for the person with Alzheimer's as well as those who love him.

Prajñāpāramitā in Buddhism, means "the Perfection of (Transcendent) Wisdom." It is a central concept in Buddhism and its practice and understanding are taken to be indispensable elements of the Bodhisaatva Path.

A Bodhisattva is an enlightenment being. Traditionally, a bodhisattva is anyone who, motivated by great compassion, has generated a spontaneous wish to attain  Buddahood for the benefit of all sentient beings.

Joy and Sorrow

Reporting on a number of experiences for me this evening at Lieberman.

When I arrived at Lieberman this evening, Gregory was having dinner (with Manny's help.) Greg was alert, smiling, eyes wide open, head sitting much more comfortably on his shoulders (lately he has been having supporting his head.) I was so happy and joyed to see him probably the most together since his seizure. He talked a little, responded to questions, smiled, ate well.

Meanwhile Eddie, who is a table mate of Gregory's, was a little grumbly. I tried to engage him a little and he responded meanly. I reached over and stroked his hand. He calmed down a little. I held his hand through the rest of my time at the table. He held my hand with sincerity, what ever that might look like expressed by a 99 year old man with advanced dementia. He calmed down and seemed to thrive on the touch of another human being.

I found out that "B," the female at the table who told me it was none of my business how many times she and her husband had sex (even thought I never asked) was an actress. We talked about theater a little and she perked up as well. "Now I am retired and that is good." she told me with a smile.

New to the table is "J." Just arrived in the area to be closer to her son "H" (a gay man who was there with his lover "R.") She is beautiful in her old age, sophisticated, kind, and friendly. At the end of the meal she told "H" to make sure he left a nice gratuity for the waitress. I have to admit, it made me feel good to have other gay men with me in that environment.

Turns out that "H" is an interior designer/architect and asked the name of Gregory's firm. I told him a little bit about the kind of work Gregory did and boy did Gregory perk up. Greg said me, "Tell the story," so I continued telling.  I almost cried right there. I have been telling both Gregory and my stories for many years now but since Christmas and his drastic down turn I not only haven't had to tell his stories but had almost forgotten they exist.

There was a wonderful camaraderie among the people sitting at the dinner table this evening, some satient and some less so. At one point I turned to "H" and said, gesturing to myself, "This is all a front. But it feels good."

Later, after Manny had left, Gregory and I were in his room watching TV. Gregory started getting upset in the way that I have identified as his needing to go to the bathroom. I tried to calm him down and asked, "Can I talk to you?" He looked at me. "Since it is so difficult for you to get up on your own, there is nothing for you to do but pee or shit in your pants. You should not feel bad about that. They will clean you up and you'll be fresh as a daisy again.

He grabbed his penis area saying, "Oh no not this again." I stroked his hand and purred "Just let it go. Don't worry about messing yourself. Just let it go." Slowly he calmed down and I could smell the results of our conversation.

I mentioned to the passing aide that Gregory needed to be changed and when might that happen? I have learned not to be too insistent and to not only recognize that they have so many others to attend to but let the aides know that I recognize how much work they have to do and that they cannot do my bidding instantly, no matter how painful it is for me to know Gregory needs to be changed.

While we were waiting for help, the nurse arrived with Gregory's medications. She was impressed that I spoke Spanish. She is from the Philippines and while she doesn't speak Spanish fluently, it is a common language for many Philippinos.

She shared her sadness at what Gregory has been going through at such a young age but assured me that Lieberman is one of the best places she has ever worked at and over the years she has worked in everything from public assistance facilities to high end suburban places. "Lieberman is the best," she said again.

I showed her the photographs of Kai and Paz, our two Philippino/American God Sons. She commented, "What an honor that must be for you to know that people you care for in return love and trust you so."

In ten minutes or so, Gregory's aide and the one I caught in the hall came in ready to help. There was no one else readily available so I said I would help, "You just need to tell me what to do so I won't interfere." I think they appreciated that.

It was at least a three person job to get Gregory from  the wheel chair into bed and not without a shout of what? pain? fear? disorientation? from Gregory. But I knew from past experience that whatever it was, it would be gone and forgotten shortly when G was all dry and clean and in bed ready for bedtime.

So there is Gregory in bed, a male and a female aide helping him and his lover as well. Gregory, nude as a j-bird while the male is cleaning him up with a wet towel. Gregory began to cry. From what embarrassment? Who knows. I leaned over and hugged him and again purred, "No no no. No need to get upset. Everyone here wants to help you get comfortable. Everyone here loves and cares for you. It is not your fault. No need to be upset.

And Gregory did calm down, stopped crying, and just was. Once he was dry and in his sleep shirt, with blanket nicely pulled up around his chest, he was happy and back in the moment. I sang him a lullaby and he closed his eyes and dozed off.

Wish that I could just be in the moment and leave my what? pain? behind!

Change

It is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.

At Lieberman Center his needs are being met
Although never as well as I was able to meet them.
I was always there for him when he needed me.
Now he waits, in a wet diaper, for the aide to arrive

I go to visit, to hold his hand, to read aloud
At meals I help him cut his food or manage his fork
I rub his neck and his swollen ankles,
And then an hour or two later, I go home.

He continues to live in the moment there
Seems to be enough, and he is content again.
He has never asked why or when or what or where.
The narrow world that is now his life, his home

The minutes, to me, seem to go so slowly
But his days pass easily and without variation.
The place through my eyes is painful to witness
He doesn't seem to notice the difference.

And then the fall and the eight staples in his head.
And the pain in his back and neck from the fall.
And the Grand Mal Seizure with its hospital stay.
But he doesn't complain, or cry, or need.

And the raised rails on his lowered bed,
And the increased difficulty moving around
And the need for the wheel chair to get around
But he doesn't resent, or anger, or demand.

So, it is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.

Now, with most of my previous emotions put to rest;
Fear, frustration, anger, resentment,
My sadness and grief and despair
Can be more purely felt and therefore more strongly.

All I can do now is wait, patiently wait.
Wait for the end of life to arrive.
His blessed end,
or mine.

A Letter to a Friend

Hi Susan. I am doing well. Still numb and very sad but at this point Gregory is being well taken care of. He is no longer the man you knew just a short while ago. I am grateful for his current home, one of the best Memory Care Facilities in Chicago, and am grateful to begin learning a new role as Secondary Care Giver. I do not have to go it alone but have a team of nurses, social workers, dietitians, doctors, therapists, etc to help Gregory as his needs continue to change.

Eventually I'll get on with my life. I never martyred myself to Gregory's disease and continued to have an identity of my own but did devote a lot of time, and energy, and love on an increasing basis as Gregory's needs increased. My identity, however, did include having a life partner with which to share my days. With him in his new home and me in the old one, I have to figure out who I am as a single person and what the angle of my days will look like.

Now, while I see him a couple of hours every day, I have lots of time on my hands and not yet the motivation to do anything with that time. I think the first thing I'll involve myself in is tailoring the condo to my needs and removing those things that met Gregory's needs. I will continue my writing and begin again to pursue a publisher for my memoirs which were organized at Ragdale during my residency in 2010. I hope to begin traveling again.

What I do not seem to have, and being good to myself since it has only been two weeks since this major upheaval, is any idea of what the future will hold. No goals. No ambitions. No hopes and desires. Except that Gregory be well taken care of and that I continue to be healthy and alive.

In some way, it is as though this moment has always been arriving and always leaving at the same instant yet doesn't exist in reality. Gregory is very visibly living in the moment, no past and no future and not really much of a present as we know it, and perhaps for now, I am living in the moment as well.

Love you, miss you, keep your guest room ready as one day I will arrive at your doorstep (with notice :-)

Fondly,
Michael