Technologically Speaking: Revisited

Humor helps during times like this and over the twelve years sharing the Dementia/ Alzheimer's path with Gregory, I have developed a number of "sound bites" to describe transitions, experiences, attitudes.

Also, humor related, Gregory and I laughed a lot. Even when he had very little or no language left, something would happen, or he or I would say something, and we would both get the giggles, like to pee our pants!

After Gregory died and I said goodbye to the beautiful temple that was his body and home for 67 years, I developed this technological sound bite which helps me deal with his passing. Over the last several days I have been fine tuning it.

I have been referring to Gregory Version 1.0 to reflect the Gregory I have known and loved for the last 40+ years. All the changes through his life would be Version 1.1, 1.2, 3.1-2-3, 7.8, 9.9 through Version 9.999 etc.

Gregory Version 2.0 was Gregory during the 10 years he lived with Dementia/Alzheimer's at home with me at the condo. There were many upgrades (or downgrades) for this version as well.

Gregory Version 3.0 was Gregory during the close to 2 years he lived at the Lieberman Center for Health and Rehabilitation on the Special Memory Care Unit. There were fewer upgrades with this version.

Gregory Version 4.0 was as Gregory lie comfortably and peacefully in his room in his bed preparing to leave this world. There were even fewer upgrades with this version if only because by now he was close to perfection.

Gregory Version 5 as his body lay in his bed at Lieberman, at rest but definitely an empty vessel. I was worried that I would not be able to face him this way, but it was still my Greggy and I was able to hold his still warm hand, kiss his lips, and sit with him a while.

Gregory Version 6 as “Gregory in a Box” or his cremated remains. I was frightened of this experience as well but it turned out to be loving, comforting, and easy. His "carbon footprint" rests in his favorite Grandma Carrie's Sewing Box. The final Version will entail returning his remains to his favorite place that held his favorite activity: Swimming in Lake Michigan. I'll know when it is time to take Gregory to the beach.

and 

Gregory Version 7 as my Guardian Angel. I am sure he will be "large" enough to be your Guardian Angel as well so feel free to ask him to be there for you!

Welcome Home

Picking up Gregory's ashes was easier than I thought it would be. Accompanied by our long, long time friend (I'd call him an old friend but that would be true both ways;-) John Hnilicka, we went to the Cremation Society of Illinois' beautiful victorian apartment building (ironically with an insurance company on the same floor) on Addison Street in the "Boy's Town" neighborhood.

After presenting my driver's license to prove who I was (I could have told them!) I received several copies of Gregory's death certificate, the memory cards we had printed, and last, but not least, Gregory's ashes. I say not least because of the heaviness in receiving them. I do not mean emotional heaviness but rather ounce and pound heavy.

I wanted a quiet moment, placed my hand on top of the handmade paper covered with dried fall leaves box, and as an acknowledgement of the reality of it all; lovingly, gently, picked up the box. Holy SHIT! He is (was) one heavy Fucker! (Cremation humor ;-)  The box really was quite heavy. It felt between 5 and 10 pounds.

Brook had explained earlier that "Ashes" is not really what they are but rather more like a fine sand. (I have not yet looked at them.) In the olden days there was the carbon and left over bone fragments, not necessarily completely cremated. (Hope I'm not grossing you out.) Now days, the cremation process is so sophisticated (including "Green" machines) that the nature of the "Ashes" is different than it was in the past.

To celebrate, after picking up Gregory, John and I went out to an excellent dinner and attended a Broadway musical, the tickets of which we had bought more than a month ago, called: "A Gentleman's Guide to Love and Murder." The show was magical, brilliant, and a romp! Gregory stayed behind safely in the trunk.

When I arrived back at the condo around 11:00 PM, I opened the trunk saying, "Hello Honey," and put Gregory, resting safely comfortably in Grandma Carrie's sewing box, in my arms and carried him over the threshold into our home saying, "Welcome home my love."

I placed the box on his side of the bed as I got ready to go to sleep. The cats, Emma and Gigi, visited with him a while, lost interest, and went on to have some more "Paw Likin' Chicken." Isaac, God Son, came in and gave his "Welcome Home" to Gregory.

I placed the box back on the bedroom bookshelf where it had been kept during Gregory's tenure in the condo, back in place again, and wished Gregory another "Welcome home ... and goodnight."

I didn't know how I was going to handle all this but as I said, it was easier than I thought. Instead of the frightening, sad, morbid, disgusting, macabre; I was happy to have him home with me, all his troubles behind him, me ready to grieve and move on.

Having Gregory's ashes helped complete the process and experience of his death and I am feeling a sense of closure to this chapter and am eagerly looking forward to the next.

Sound Bite: I know that there is a cloud still following me and every now and then, when least expected, it will make my eyes rain. But that is OK and Gregory will be my umbrella.

I slept very peacefully.

The Sewing Box and The Sponge Bath

Hi Barbara,

Picking up his ashes yesterday was not as hard as I thought. Gregory is gently resting in the sewing box of his Grandma Carrie, his father’s mother. 

Gregory tells the story of how sorry he was that he was not able to see her when she died and was not able to go to her funeral because he was across the country at school.

He tells of their time together on overnight visits when he was a young boy, when they would sit on the font porch of her house, across the street and a little way down from the Goshen, Indiana court house. 

Gregory loved to play by the court house, walking up and down the grand stairs, and balancing his way around the building on the first floor parapet. 

They would watch the sun go down, and the cars go by, and talk of things. They would always have popcorn for dinner and oatmeal for breakfast. 

She was either poor enough or stingy enough (and probably a little crazy enough) to not bother wanting to light the water heater. She would boil a pot of water, let it cool down, and instruct Gregory how to take a “Navy Bath,” also known as a sponge bath. 

She would instruct Gregory saying, “First you wash as far up as possible, then you wash as far down as possible, then you wash possible.” 

I had ordered a bio-degradable box covered in handmade paper with dried fall leaves affixed to it. For me it was the best of the available choices (and there were many.) 

The night after making his arrangements with The Cremation Society of Illinois, I was sitting in the kitchen folding dusting rags (just realized the significance of “dust to dust”) and it came to me (might you say insight or might you say Gregory or Carrie whispering to me?) that I could use Grandma Carrie’s sewing box for Gregory’s ashes. 

And so the beautiful handmade paper box is now lovingly placed in Carrie’s sewing box and they are both resting peacefully. He loved her very much and is happy to know that his resting place, for now, is with her.

P.S. This will be today’s post that was written especially for you and Les.

Another Milestone

Another milestone passed today as Gregory's body was cremated. Depressing. Morbid. Macabre. Frightening. Surreal. Sad. But these negatives are supplanted with JOY when you think that his earthly body was currently the home of Dementia/Alzheimer's and all that the disease brings. Now he is free.

Now that his body is no longer his address and after 67 years of serving him well (minus a few for Dementia/ Alzheimer's) his body is reduced to its essence and if the remaining carbon was put under great pressure, he would become another version of the bright, shining diamond which he was throughout his life.

Although he never complained and settled in at Lieberman in his usual calm, confident way; he no longer has to face being confined to a wheelchair, his newly acquired narrow life, shitting and peeing himself, not being able to feed himself, to frustration and confusion (although dampened by Rxsperadol,) not being able to communicate and often not being able to understand. He no longer needs to deal with reduced mental, physical, emotional, and cognitive abilities. He is free to fly and to dance.

That is not to say (especially reminded when looking at photographs of him) that his days with Dementia/Alzheimer's were also not filled with love and joy for him and for those who love him. Even in his reduced state he kept his sense of humor and gave freely of his love and smiles to others around him, including no only me but also family and friends and his fellow residents.

So we reach a new milestone in Gregory's life. His moving on to the next adventure: whatever, wherever, and however that may be. I believe that there is something greater then here. Just because I cannot see it, that doesn't mean it doesn't exist. Just because I cannot prove it doesn't mean it doesn't exist. What I also know is that I cannot prove that is doesn't exist, so I will err on the side of "he is in a better place."

Before or After the Elephants

I am sharing this post from my writer's blog (http://mhorvich.blogspot.com - opens in a new window) here on the Alzheimer's blog as it applies as well to Gregory and my journey with Alzheimer's.

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Euphemistically "Memorial Gardens" stands for CEMETERY!

Yesterday I spent a little over an hour at Memorial Gardens, which conveniently happens to be neighbors to the Lieberman Center.

For a while I have been thinking about educating myself about pre-paid end of life arrangements for Gregory and me. I met with Lynn,  who was very nice, well informed, understanding, and helpful.

At one point she asked Chris for help and I think after hearing me talk about planning for me and my partner, he decided to stay in the meeting. Turns out he is Gay, much younger than I, and his first lover passed away a short while ago. We had issues in common to talk about.

Not easy planning for your best friend, life partner's demise let alone your own. I told them I wanted a "no frills" cremation for both of us. Discussing the details was less difficult than I had imagined and only twice the emotional pushed the intellectual out of the way and I got choked up.

No service, no flowers, no catering, no obituary, no web site of remembrance, no coffin. Just a cardboard box. Ashes are delivered in a plain urn ready for scattering. There are two jokes about the scattering of our ashes which Gregory and I tell.

I want my ashes scattered at the circus. I just don't know if it should be before or after the elephants!

Gregory wants his ashes scattered in Lake Michigan since he so loves the water. So a few friends will gather in our bathroom, say a few nice words, and flush the ashes down the toilet. Fastest way to Lake Michigan!

Gregory and I had discussed this many years ago when we first wrote our first wills. It was hard for me to decide "Cremate" or "Bury." I still hadn't decided on the night before we were to visit the lawyer to draw up the wills.

Gregory and I were talking about the pros and cons of each when it dawned on me, "It isn't an issue of  'Do I want to be cremated or buried!' I DON'T WANT TO DIE!" After that it was easy to decide: cremation.

There are a lot of legal issues about dying and how to handle the remains. I have Power of Attorney for Health over Gregory. His nephew Mark and his wife Colleen are next in line to make decisions for Gregory if I pre-decease or if I cannot make decisions for myself they also take over that responsibility for me.

You could say that I trust them with our lives ... and I do ... and I have ... by making them next in line trustees.

Lynn suggested I look into one issue. Usually when a person dies, the Power of Attorney is terminated. I should make sure it states that I retain rights to dispose of Gregory's remains (and M&C for G and/or me!)

It gets a little more complicated. There is insurance for me in case I die while traveling and have to get shipped home. There are provisions for the pre-paid arrangements to transfer to another city if I move. The funeral director has a specific role to play as does the cemetery even thought there is no burial. There are additional fees that go to the state and city for various certificates and registrations. It goes on and on but both Lynn and Chris made it easy to understand.

So while I was dealing with something that could be very difficult, I felt empowered to be able to make decisions about the things I can control. And to have everything paid for in advance.

When Gregory and I leave this life, there will be no tangible evidence of our having been here. No grave, no stone, no tomb, no bench, no niche, no urn. What will remain is the love we were able to share with others, to be carried in their hearts until it is their turn to leave this life to go home.

Thoughts on End of LIfe

Writing this is no easy task. Based on having seen Lieberman residents rushed to the hospital in an ambulance, I began wondering under what conditions is this necessary?

While Gregory was still sentient, he and I decided that we wanted to be cremated, not buried. We also decided in the event of stroke, heart attack, catastrophic illness, etc ... "no heroics," "no resuscitation," "pull the plug" if there is one if quality of life is not available.

But how does one decide on quality of life (QOL?) Gregory's QOL today is very low compared to before the Alzheimer's, but there still is quality! He is still enjoying his narrow life, feels safe in his new community at Lieberman, is eating well and enjoying the food, laughs and gets silly, is communicating somewhat if you know what to listen for, sleeps well, likes listening to music and watching TV, is healthy and not in pain.

So for now, lets leave him "plugged in" since he is plugged in by himself and not ill or on a machine or suffering. But with Alzheimer's it will get worse. Much worse unless death takes him sooner rather than later. Mental/ emotional duress and pain is much more difficult to measure but I believe I will know when that time comes and at least we will be able to control it with medication.

Being in charge of making decisions like this for another person is overwhelming. My decisions are and will always be made with love and only with Gregory in mind, not any suffering I may experience as he fails. But none-the-less deciding that a person should end their days in a drugged stupor is difficult. Luckily the nursing staff at Lieberman is thoughtful and well informed and have advised me well so far.

Gregory's latest round of increased medication, is Risperdal. It is a antipsychotic medicine that works by changing the effects of chemicals in the brain and is used to treat schizophrenia and symptoms of bipolar disorder as well as irritability in children with autism. While it is not approved for use in conditions related to dementia, like many other drugs, it serves dual purposes even though dementia was not what was tested for the drugs approval.

Gregory was beginning to be uncontrollably combative, irritated, frustrated, angry, and was unable to sleep well. The Risperdal, as I was warned, caused him to be lethargic and unavailable emotionally/ socially for two to three weeks until the dose was balanced and his system adjusted.

He is now back to what I call his "former diminished self." While the drug did not bring back any abilities it did calm down most of the negative ones and that is good.

Next I need to put into writing my directions to the Lieberman staff as to when Gregory might be "rushed" to the hospital. Holding, with Gregory's permission long ago, the rights to Power of Attorney for Health (and Finances,) I am able to make life and death decisions on his behalf.

What I do not want to do is prolong his life if he is on his way home! I like that expression as it makes me feel like we came from somewhere and we will return somewhere even though I might not be able to understand under what circumstances that might be.

I especially do not want to prolong his life inadvertently, under duress of his illness, or because of the "best actions" of doctors, hospital, and medical staff.

If Gregory is working his way towards dying, I only want him to be comfortable, free of pain, and I will sit there and hold his hand or lie down next to him and snuggle until the end.

I need to think about these last things and put my end of life directions into writing. I also am aware that what I put into writing for Gregory should also be used in the event of my needing them. That's the next task.