Saturday, May 26, 2018

The Grief Continues ... but Differently

Came across this today, a post which was written approximately one year ago, almost two years after Gregory died. It merits re-posting with an addendum.

Knowing Gregory is dead takes many forms. Not necessarily in order of importance:

Reading an earlier post and seeing his name associated with  "Today my love died."

Reading his obituary when it appeared in the Tribune, the Sun Times, and the Windy City TImes (Gay newspaper.)

Seeing the death certificate.

Filling out and signing all the paperwork for his cremation.

Canceling various accounts in his name.

Picturing him in his bed in his room at Lieberman and knowing that the life had left his body.

Dreaming about him, waking up, and remembering that he is dead.

Admiring the plaque on the memorial wall outside the Synagogue Room at Lieberman.

Looking at his portrait on the shelf next to his remains and flashing back to arriving at his room at Lieberman on the day he died.

Hearing someone tell of his death as well as me telling someone of his death.

Rewatching the documentary: ALZHEIMER'S: A Love Story.

Talking about our journey with Alzheimer's at various presentations I have made and getting to the part where after being in a coma for three days, he gave me one last kiss before he died.

Knowing that he was going to die but getting the call from Manny.

Having been on the Alzheimer's path for so long, and changing myself as Gregory changed, I knew intellectually but refused to know emotionally that he would ever really die.

Celebrating without him, the various holidays like Valentine's Day (the most difficult it turns out,) Christmas, Halloween, Birthdays, Anniversaries.

With great love comes great grief, they go hand in hand. But it does get easier and I have done a good job learning to live without Gregory's physicality but still having him be a large part of my every day life!


It has gotten easier, as they said it would but not in any way they or I could have predicted and not in any specified time frame. One never gets over or through grief, one just learns how to live with it, to let it in full force when necessary, to avoid it at all costs when necessary, and mostly to continue to do the best job you can living without being able to share life with the person you loved and continue to love even after their death.

Last night I pictured him in his bed at Lieberman when I went to visit him for the last time and when I returned the next day to see him lying there dead. I cried again which I haven't done for a while. Then I comforted myself by telling him, "Gregory I am glad that you are dead. You have no more problems or difficulties and I have been able to reclaim and get on with my life. I miss you so, but that is OK and I conetinue to love you more than ever."

When continuing my editing of GYROSCOPE: An Alzheimer's Love Story, the working title of my memoirs, I end up re-living the day to day joys and sorrows, gifts and struggles of Gregory's and my journey with Alzheimer's. Some entries are difficult to read, some reinforce the good work we both did in living well with the disease. Some make me laugh, some make me cry.

Preparing for and presenting the documentary to a group brings the journey back to the surface and that causes a deeper level of grief than those times when the only time I really think of Gregory is when I wish him a "Goodnight, I love you." Two extremes and every degree inbetween is part of the continuing grief with which one learns to live.

Another way to look at never getting over or through grief is that it remains the same, you grow and expand so the grief seems smaller and further away. When an important reminder like a holiday or birthday occur, you regress and contract so the grief seems the same as it was in the beginning. And then you are able to grow and expand again.

Realizing that he is with me now more than he was during the 12 year journey with Alzheimer's  is interesting to me. It is as if I am carrying him close not only in my heart but in everything I do, everything I say, everything I witness. He is part of every decision whether major like planning a vacation or minor like deciding what to have for dinner.

The most difficult part of Gregory's dying was the loss the the physicality of our relationship. Even when he was at his worse with dementia, there was a physicality to our day to day interactions: visiting, holding hands, watching "South Pacific," sharing a meal, offering a drink, walking to the park, telling him of my day.

I have been able to create a new physicality. I talk to him often, outloud! I sit by his "shrine or alter," on the bookcase next to his side of the bed, I sound the "singing bowl," I look at his photograph and we have a conversation. I keep a candle electrically burning next to his photograph kind of like an "eternal light." I buy him flowers and dark chocolates to put in his alter, the chocolates I eat later.

By telling Gregory and my love story, showing the documentary ALZHEIMER'S: A Love Story, and fielding Q&A afterwards I keep Gregory alive in my heart and am able to introduce him to new friends. When people can identify with our story and find solice or at least realize they are not alone, Gregory shares in the glory. By telling our story, Gregory and I are are promoting understanding of dementia and Alzheimer's, understanding and respect for same sex couple relationships, and giving others a glimpse of what love can do even in the most difficult of situations. 

As I am writing this I look forward to:

1) An essay to be published in Teepa Snow's Positive Approach to Care's Online Dementia Journal  (ODJ.) It is a free monthly e-newsletter designed for families and professional care partners who are looking to grow their awareness and knowledge in order to provide better care for people living with dementia. There are over 2,000 stubscriber to the journal. 

2) Makeing a presentation to the "Alzheimer's Disease International 33rd World Wide Conference which will take place in Chicago this year. While at the conference, I am looking forward to spending time in person which friends made on facebook from Austrailia, Nigeria, New Zeland, England, and Canada.

3) Doing a presentation at the Evanston Art Center showing the documentar,  talking about film making, and being part of a panel discussion on the importance of art for those diagnosed with Dementia / Alzheimer's. Gregory's art work will be on display at the center as well.

4) Having an essay published in an anthology for caregivers of those with dementia / Alzheimer's. 

5) Having a fourth guest column in Chicago's gay newspaper, "Windy City Times," dealing with aging gracefully!

6) Continued work on my memoirs. 

7) Continued work on "Alzheimer's: The Musical, writing the book and then finding out how to go about the details of creating a musical. 

8) Continued work on "Alzheimer's: The Opera, selecting which of my poems to use for the 12 arias that will make up the opera and then finding out how to go about the details of creating an opera. 

9) Approaching Chicago's gay community center, Center on Halsted, about making a presentation on Dementia/ Alzheimer's.

As I am writing this, so far during 2018, I have previously been able to:

1) Make a presentation using the documetnary to the Pritzker School of Medicine Students. 

2) Do a "one man show" at a local Chicago gay theater "Pride Film and Plays." Approximatly 30 ticket paying patrons were in attendance for the 90 minute experience which again including a brief slide show of Gregory and I arm in arm from when we first met until shortly before he died, a 30 minute presentaiton on how we were able to "Live Well with Alzheimer's," followed by a question / answer session and finished with fellowship over wine and cheese in the lobby. 

3) Help plan and attended the third annual More Than Ever Education Fund Luncheon at the Orington Hilton Hotel in Evanston. Approximatly 150 people attended and we raised over $50,000  to support La Casa Norte's Youth in College Program. The fund was founded in memory of Gregory and helps the primier not-for-profit provide scholarships (and housing) to youth confronting homelessness who otherwise would not be able to get an education with prospects for their brighter future. Over the three years the fund has been in place, we have raised close to $150,000!

So addendum and all, you can see that life does go on after the death of a loved one and in some ways helps those grieving gain a better perspective on the importance of living to the fullest extent during each moment, taking some time to ABSOLUTELY DO NOTHING, and then getting back to doing good works while one still can!

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