ESSAYS ON GRIEF

 
 

EXPLORING THE DIMENSIONS

OF LOVE & GRIEF & DEMENTIA

A Presentation by Michael A. Horvich


ESSAYS ON GRIEF


Alzheimer's Association of

Minnesota-North Dakota

and the MAYO Clinic

March 2, 2019



My life partner of over 41 years Gregory was diagnosed in 2003 with Young Onset Dementia/Alzheimer’s at age 55. He died at age 68 on October 4, 2015. We were not only best friends and husbands but also, toward the end of our journey, I was his primary caregiver.


Michael writes a BLOG which features periodic essays, poetry, life observations, anecdotes, and other musings; as well as selections about Dementia/Alzheimer's Disease.


http://mhorvich.blogspot.com


Previously he wrote a BLOG specifically dealing with Dementia/Alzheimer's Disease which contains close to 1,500 posts, written over a period of five years and receiving over 150,000 hits. Even though inactive, it serves as a great source through which to  browse.


http://mhorvichcares.blogspot.com


I hope that by sharing some of my direct experience with grief, you will gain a stronger understanding of grief and empathy for yourself. If a professional helper, perhaps my story will help you with the clients with whom you work.


The essays in this collection were written between 2010 and 2019 and are taken from my BLOG, “michael a. horvich cares.” The BLOG began in 2010 as a way of processing my thoughts, beliefs, experiences, and growth during Gregory and my twelve-year journey with Dementia/Alzheimer’s. Its purpose also was to share our progress with family, friends, and others who might come across the BLOG and benefit from my experience.


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TABLE OF CONTENTS


Circular Grieving

Horoscopes and Breakdowns

Today’s Dose of Grief

A Love Affair With Loneliness

Separation

The Intensity of 12 Years vs the Longevity of

It’s Been A While

The Seven Faces of Grief

Reinventing Self

A Room Full of Grief

Personal Aspects of Dealing With Grief

Separation

Will I Date Again?

The Worst Part of Dementia/Alzheimer’s

Different Intensities of Knowing Gregory is Dead

The Grief Continues … But Differently

Grief. Forever!


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Circular Grieving


In a model introduced by Elisabeth Kübler-Ross in her 1969 book "On Death and Dying,” the stages of grieving have become well-known.


Stage 1:  Denial "It can't be happening."

Stage 2:  Anger "Why me? It's not fair!”

Stage 3:  Bargaining"Just let me live to see my son graduate.”

Stage 4:  Depression:"I'm so sad, why bother with anything?"

Stage 5: Acceptance"It's going to be Ok."


Kübler-Ross originally applied these stages to any form of catastrophic personal loss (job, income, freedom). This also includes the death of a loved one and a divorce.


Kübler-Ross also claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all people, though she stated a person will always experience at least two.


I have modified her stages of grieving to ongoing grieving when living with Alzheimer’s:


Stage 1: Denial: Try to live your life a day at a time without dwelling on the worst. Live in denial by being optimistic and living your life with joy  and love regardless of the disease. Is denial so bad? I relish those days when our relationship can seem “normal” or what I like to call “even.” Not thinking about Dementia/Alzheimer’s 24/7 is a good thing.


Stage 2: Anger:  Anger in this situation is most about losing what you have with the person, while they’re still physically standing there in front of you ... losing them little by little each day. I work at not being angry with Gregory. Usually anger is directed towards a person, how do you deal with anger at a situation? On days that I am sad, angry, depressed and fearful all at once, I fear that I will never come to acceptance of the hand that we as a couple have been dealt.


Stage 3: Bargaining is a constant.  “If only it would stop here, I would be happy.” or “Maybe they will find a cure before it gets worse.” “Help me know how to deal with this.” Some people pray, some meditate, some chant. All efforts seeming to try communicating with some supreme being who has power over such things.


Stage 4: Depression. Not a fun or healthy place to be. But a fact of life when living with one living with Alzheimer’s. They say that depression is anger turned inward. In this case not true. I am not angry with myself. I am angry with the disease.  When I was dealing with cancer a number of years ago, my oncologist told me "It’s ok to cry. It’s ok to be depressed. But not for more than fifteen minutes at a time.”  So if I have to wallow in depression, and believe me, sometimes it helps, I do it for fifteen minutes at a time, and then try to move on with my day.


Finally Stage 5: Acceptance. We will get through this but I don’t think that I will ever reach acceptance of Dementia/Alzheimer’s, but I strive to accept the changes as they come. Acceptance here refers to getting through to the other side of a situation. Eventually the other side of Dementia/Alzheimer’s is death.


Gregory’s grandma used to say, “There is no future in getting old.” I often feel that there is even less of a future in getting old with Dementia/Alzheimer’s. I work at emptying my fears through writing and I feel much better. Writing does that for me. Once I’ve aired all the bad, I work on positive affirmations. I list them, in no particular order, free form, just as I listed my fears when I began writing “My Sad Day.” With positive affirmations the most important part is to state them in present tense in a way that accepts that they already exist. 


“I am loved.”  “Life is good.” “I can do this.” “I am strong.” “We are safe.” “We are blessed.” “We will do this.”


If you make your own list, try posting it somewhere you can see it throughout the day, on the refrigerator, the bathroom mirror, on a bedside table, someplace unexpected so it surprises you and lifts your spirit. Then speak those affirmations aloud.  You will be amazed at how much saying what you need and want out loud can do for your mood.

Every time I fall briefly into sadness, anger, depression and fear; I remind myself that this day too will pass and tomorrow will be another day. A fresh start. Not without its difficulties but none-the-less a fresh start.


With Dementia/Alzheimer’s one does not work one’s way through the stages of grief as Kübler-Ross proposes. With Dementia/Alzheimer’s, one seems to cycle through them, again and again and again. I have invented a circle of grieving which I have found, as part of our caregiving team, helps.  I will:

(1)engage in denial of the situation by trying to not think about Gregory’s Alzheimer’s too often. I will try to live in the “here and now,”

(2)have anger with the situation but not with myself and not with Gregory,

(3)allow depression once in a while but not too often and not for too long,

(4)not bother with bargaining but live realistically,

(5)not expect to gain acceptance of Alzheimer’s but rather learn to live with it,

And my own Sixth Stage of Grieving:

(6)Realize that the grieving process is circular. It repeats and repeats in an unpredictable fashion. 


Horoscopes and Breakdowns


“No one -- not even you -- can be selfless and generous all the time! It's okay to mix a few selfish acts in with your good deeds today. Don't do anything too egomaniacal -- just put yourself first a few times when you usually wouldn't. This isn't an excuse to forget your manners -- you should still hold the door for old ladies, and say 'please' and 'thank you' -- but it is a reminder that you need to treat yourself like the star you are a little bit more often.”


  1. • •


While it is hard to say this horoscope was meant for me alone (how many people in the world were born between March 21 and April 19?) … it does apply.


Last night I cried myself to sleep wondering how I look to the rest of the world. Strong? Together? Even? Supportive? Loving? Giving? While recognizing those adjectives as part of who I am, I was not feeling them. I was sad, lonely, and feeling devastated as I walk along the path with Gregory and his Alzheimer's - every morning, every day, every night.


I don’t expect you to comprehend this life we’ve been forced to lead; however, I do expect and need your understanding. I want to be treated as normally as possible with the knowledge that my life has been turned upside down. The love of my life is dying before my very eyes. Each day he dies a little more. I’m in a continuous state of grief. It is like having a funeral every day of my life. I try to spare you my pain, but it’s there. If our lifestyle appears to be the same to you, I’m doing a good job of camouflage. I do what I do for Gregory, for myself, and for you.


No one really to turn to in the hopes of making "it" go away. The Alzheimer's? The feelings? The tears? Last night, I just needed to cry, to howl. I needed someone with whom could cry but not someone who would try to comfort me for there is no comforting in dealing with this INSIDIOUS disease.


In some ways, even with loving family and friends, there is no one there for me since the only one who truly matters is Gregory, my life and soul mate of 35+ years, and he is less and less available. To himself? To me?


He seems content, happy, loved. He bumbles along day to day in a good mood, laughing at his inabilities. When I am at my grumpiest, he forgives me or lets me know that my role on the path is a difficult one. He appreciates me, he loves me.

So last night through my tears I heard a voice in my head say, "Tomorrow you die." No not death, but another part of my life gone as I constantly re-evaluate Gregory's needs and try to accommodate them. Accommodate them not in what I consider my recently, once again gruff, impatient, angry way but only with patience and love.

Instead of treating him like an invalid, which I have been avoiding although sometimes without the use of language that is all that is left, I will be there to assist him for what might be or feel like 24/7.


For example when I tell him at bedtime that it is time to brush his teeth, I usually go about the own business of closing up the house and getting the cats and myself ready for bed. Now I will wait to help him find his toothbrush (if he can't this time) and put the toothpaste on the toothbrush (if he can't this time) and run just a little water on the toothbrush to wet it (if he can't this time) and then make sure he knows how to get it into his mouth to begin brushing (if he can't this time) and when he is completely, and successfully brushing his teeth, I'll look back to my needs.

And so tomorrow I die.


This process is the same for almost every life skill that Gregory attempts. Recently, at bedtime, he had on his shorts but not T-shirt (which I always put in the bathroom and announce, "Your night clothes are in the bathroom.") Having come into the bedroom without his T-shirt, he no longer knew where it was or even that he needed the shirt ... just that something is wrong.


Another time, when he was getting his night shorts and shirt on, I came back into the room to find him with his feet through the arm holes of his T-shirt trying to pull the body of the shirt up around his bottom.


After my having taken the time to get his "stuff" and putting it in the bathroom for him and letting him know where the "stuff" is, you can see why I get a little frustrated (angry?) that even with all my help, it isn't working! And not only the anger but also the fear and worry about what the future will bring (although I try so hard not to worry about the future since I cannot control it.) "Don't worry about those things you can control and don't worry about those things you cannot!" A Buddhist saying.

Having to do EVERYTHING for us, you can see how easily it is to fall into the frustrated, angry, gruff, impatient, fearful mode.


With Ken, Gregory's companion living with us since April, my life has been a bit easier. But Ken will be leaving at the end of June to go back to Japan and then return to Vanderbilt University to begin his Master's Degree. So last night, I was also grieving not only Gregory but also our loss when we send Ken on his way. We have come to love that man with his gentle, loving, respectful, helpful ways! I have come to depend on him for help with Gregory.


So tomorrow I die but know that somehow I will survive. In last night's grief then, I realized that the next step has to be follow through, follow through, follow through. Not on Gregory's part because he is no longer able, but on mine.


When I hand him his vitamins and medications I will wait there until he knows how to begin taking them. When I tell him to "fill your pockets" with wallet, keys etc, I will wait there until he begins doing so (and I will double check after while that he got everything he needed.) I will no longer ask him to wait in the car when I have to run into the drug store for a quick purchase, I will have him come with me. Recently he got out of the car and came into the store looking for me. The potential of what could have happened frightened me so.


These activities and follow throughs will be difficult for me and I will have to learn how to attend with patience and love but they are a necessary next step. And like other "next steps" once I have mastered the step, I feel better able to cope, am less angry, less frustrated.


The additional energy I have to spend in support of Gregory's daily needs is made up for by the less emotional energy I have to spend on anger, frustration, fear, guilt, etc etc etc. So tomorrow I die, but I am also reborn and continue on the path.

Today’s Dose of Grief


Earlier today at the Lieberman Memory Care Facility, Barbara died. I do not remember what she looked like but I did notice her empty place at the table just behind Gregory's. She had stopped eating some three days earlier.


And I heard that Marie was probably on her way out as well. I do remember what she looked like. She sat at the other end of Gregory's table, or better said, was brought into the dining room and placed at the end of the table.


In stark contrast to the other active, somewhat responsive people at the table (Greg, Betty, Julie, and Fred,) she spent her time in the dining room asleep, waiting to be fed, crumpled into a fetal position in her tipped back wheel chair/bed. At times she would be staring off into the distance but never responded to a "Hello" or "How are you today?" Her world was limited and internal.


On earlier days, I remember looking at her and even in her disheveled condition; imagining the loving, sophisticated woman she must have been. But no more.

After kissing Gregory goodnight and on my way towards the elevator, a nurse was headed to Marie's room where family had been sitting with her all day. I asked the other nurse who was just outside the room how Marie was doing and she told me that Marie had just passed.  And I grieved her death.


No matter how "far gone" some of these residents may be, or how angry and non-communicative, I cannot walk by a fellow human being in the hall and not smile real big and nod my head or say, "Hello." In turn, over time, some of the residents regularly now smile at me and say hello.


When in the dining room and someone needs help, if I know how to help without getting in the way and for example only if I know what to do, like getting thickened juice for someone who needs it to be thickened so they will not choke when drinking, I have to help. When Freddy is upset and cursing, I hold his hand and he holds my hand back and settles down.


My love for Gregory continues to grow, my expectations for him now are in the present moment and mostly in line with his abilities and not my hopes or fears for the future, and my love of fellow humanity continues to be tested and stretched. There is such great love and beauty to be experienced at Lieberman.

I grieve and am also grateful for Barbara's and Marie's deaths.


A Love Affair With Loneliness


I have written about loneliness often in the past. If I thought that I was lonely as Gregory slowly was diminished by Dementia/ Alzheimer's; if I missed having a partner with whom to make decisions, to share responsibilities, to support me through our journey; it is nothing compared to the loneliness I feel now that he is dead. I now face the rest of my life without being able to talk to him, to hold him, to kiss him, to doze off in his arms.


Every time I think I have a hold on this beast called grief, it bites me, it grabs me in its jaws and thrashes me around until I am beat up, broken, and bloody once more. The more I grieve the more obvious the obvious becomes. My grief has nothing to do with Gregory it has to do with me. My pain, my sorrow, my fears, my loneliness.

I am not so much grieving his death as I am grieving the future of my life. I don't mean to bring you down with me. I will feel better in an hour, later today, or tomorrow. But right now the tears flow freely, and I am sad. I am not sorry that Gregory has died, I am pleased he has moved on, I am sorry that I continue to have to live without him.


This is not a suicide thought, taking my own life is not what I mean here. More painful is having to wake up each morning to face the day and find meaning, purpose, and love in my life when the person who meant the most to me can no longer be part of that, except in my thoughts and in my memories.


I read recently somewhere, "Can one have a love affair, a love relationship with someone else when it does not involve the human body?" I am not sure but I sure have been having trouble finding peace in myself without Gregory's presence even though he is at peace.


Separation


There is a separation that takes place. The grief if still there but it is not at the forefront! You begin to realize YOU are YOU, and HE is HE and, WE are We even though HE and WE now exists only in memories.


WE is what has changed. You grieve the WE, you miss the WE. You want to hug, kiss, hold, talk to, touch the WE; but that is no longer possible in a physical way.

So you invent ways to keep in touch. You set up an alter or shrine to him, as a place where you can direct your conversations, or you talk to him in your mind. You make decisions based on the way you used to make decisions together. You feel him with you in spiritual ways. You try to see the world through his eyes as well as through your own.


The world seems to be more magical because of this separation. Slowly you begin to question his death less, you appreciate your life more, you begin to appreciate the here and now once more, you do not wonder why Gregory and you had to walk the path of Dementia/ Alzheimer’s, you just did it because the path was presented and you BOTH loved each other so very much and you walked.


Gregory did not suffer from Dementia/ Alzheimer's, he lived WELL and we were able to compensate for the losses as they occurred. Most of the time he (we) did NOT suffer but rather lived and loved joyfully to our fullest.


The pain, the sorrow, and yes the suffering which was present at times, no longer exist now and in many ways, the separation of the WE into the ME and HE, makes the pain of his death more tolerable when compared to our being in the middle of the Dementia/ Alzheimer's path, with no idea what direction it might take or where and when it might end.


Slowly you let the memories return, you allow yourself to go through the photographs of your times together in the past and you can be joyful at the times you had, not sad at what no longer is possible. The difficulties, shackles, pain, confusion, frustration, fear, anger, and general “craziness” of dealing with Dementia/ Alzheimer's has disappeared, and that feels good. Gregory has physically also disappeared and at times that does not feel good.


You are happy and living life to its fullest, day at a time. Keeping happy, busy, productive. Taking care of yourself, your body, your mind. You love the condo, your new car, just about everything about the way you live your life. You feel good about family and friends. You feel good about being kind and compassionate and giving to others when you can.


I assume Gregory is happy, wherever he may be, no longer dealing with the tribulations of Dementia/ Alzheimer's. Perhaps in a dimension that allows him to further develop his enlightenment, learn lessons still waiting, keep tabs on you, watch over you, protect you when possible. He no longer has wants, needs, desires, oughts, shoulds; or at least it would seem so.


It is the WE that suffers. I love the ME in the condo. I miss the WE in the condo. I love the ME who attends the opera. I miss the WE that used to attend the opera together. I look forward to travel. I am sad that it will not be WE that are traveling. I find that when I am feeling sad, I have begun to be able to separate the ME from the HE and I do not always need the WE to feel good.


I am able to separate the situation into ME, HE, and WE. For example, for the first time ever I saw Nabuco at the Lyric Opera. I enjoyed Verde's music, the beautiful set and costumes, the glorious voices, the story line. In some way I felt that Gregory, possibly through me, was able to enjoy those things as well and perhaps they pale when compared to the beauty of his present existence.


In this separation, I do not allow or even need to succumb to sadness that WE are not experiencing this together. Not having the WE, should not diminish or take away from my life even though I have to do it with Gregory only being there in Spirit.


The Intensity of 12 Years vs the Longevity of 41!


The other day I was feeling blue again. This is the nature of grief. It comes and goes, comes and goes. And when you think it has calmed down, it once again tantrums!

A new skill I have been working on is to be able to allow my emotions while at the same time asking them if they are valid. Instead of just feeling down I ask myself, "Is what I am thinking, is what I am feeling real? Is the nature of this memory true?"

The other day a bevy of erroneous thoughts were the cause of my grief. I knew they were not the truth but they were affecting me anyway. They ran, kicking and screaming, past my mind in single file, one at a time.


Was I as good to Gregory as I could be? Did I make the right decisions on his behalf? Did I go out of my way enough to be there for him. Did I spend enough time with him? Did I make sure I communicated my love to him in ways he could understand? Did I tell him often enough how much I love him?


And the thoughts got worse! Did I spend enough time with him as he was dying? Did I sit with his body long enough when he was dead? Was he really dead or is it possible he was just more deeply in a coma? Should I have kept all night vigils with him? Did I let him know strongly enough how much I would miss him and how I wanted him to stay with me?


I knew that these thoughts, these memories, these emotions were not the truth. I did not want to allow them to get me down. So I started trying to think about better times. About my great love for this man. Of the good things I did for him and he for me. But I realized that my thoughts were still of him fairly advanced with Dementia/ Alzheimer's. They were still memories of me alone, as caregiver, Gregory at Lieberman Center and greatly diminished.


So I tried to think of earlier times and earlier joy and love. And I couldn't. I pictured some events during better times but the emotions of those events did not help me feel better. Did not lighten the depth of despair or grief I was feeling. I realized that I was having trouble recalling or recreating those earlier times in Gregory and my life when we were young or even those times before the diagnosis of Alzheimer's when we were so much in love, happy, healthy.


This next set of untrue emotions replaced the earlier erroneous feelings of not being there, not doing enough, not communicating etc with new and just as painful emotions. I cried, I felt depressed, I felt alone and lonely. Where had those 41 years gone and why couldn't I use them to help me feel better. I just couldn't picture or feel or remember clearly the earlier, happier days of our relationship.


I shared all of this with Isaac, my God Son, over dinner last night. I knew the lack of truth in all of my processing but didn't know how to turn it around. Talking about it with him felt good, he is a good listener, he didn't try to tell me I was wrong or "buckle up!" He thought for a moment and asked if he could share a thought he had on the situation. "Of course I replied." This is what he said:


"The difficulties of Gregory and your life over the last intense 12 years of living with Dementia/ Alzheimer’s, as well as Gregory's death, is still what you are dealing with. There is so much love and joy in the 41 years you and he have been together but right now those years are overshadowed by the 12 difficult years. It only makes sense that you need to spend more energy dealing with, grieving, those 12 years before you can get back to enjoying the memories of those 41 years."


We summed it up with this sound bite: The intensity of 12 years vs the longevity of 41! Just having this insight, as shared by Isaac, made me feel much better, able to put my grief aside for now, and to feel OK. Like I am going through the normal process of grieving. That it will get better!


The more you love someone, the more you grieve. The more you love someone, the harder it is to let go even though you know that because of that love, you must let go. Yes, the intensity of the 12 years Gregory and I walked the path of Dementia/ Alzheimer's is strong, but the 41 years of our love is stronger and will prevail!


It’s Been A While …


Dear Gregory,


It has been a while since I stopped to think about, process, share my feelings and emotions with you (and with myself for that matter.) For some reason I have been feeling a little depressed, NOT dysfunctional, but grieving your leaving once again.

Maybe the "up" feelings of being on the west coast, being in San Francisco and the excitement of our documentary, ALZHEIMER’S: A Love Story being screened with 1,300 other people at the theater and Pride celebrations; spending time with Pat, the God-Family, and renewing the friendship with Les and Irv; has caused me to be missing you more.


It just seems to be stronger in my thoughts that I am here at the condo alone and that you are dead. I haven't been hysterical or overwhelmed but feel like I could be if I let myself. So I thank my emotions and ask them to come back another day when I feel more up to dealing with them. Scenarios of difficult times float past my memory.

While it is understandable, on the way back from taking out the recycling just now I found myself talking out loud in the hall saying, "I would really rather cry over thinking of the joyful times, the happy times, the good times and not be sad about the difficult times."


As Isaac so sagely put it, and it still seems to hold true, "The intensity of our twelve years living with Alzheimer's takes priority over the longevity of our forty-one years together." The fact that I cannot roll over during the night and hold you, that I cannot hold your hand or kiss you, that I can no longer nurture and take care of you, that we cannot share our experiences, travel together, share a meal; these all weigh on me.

I buy flowers pretending they are for you, I buy dark chocolate believing they are for you and in some ways they are. Eventually I eat the chocolate. But the physicality is not the same. When I am about to off on an adventure I hear you say, "Can I come along?" I say, “Of course!” So I take the little bronze bear amulet, which contains a little of your remains, and pop it into my pocket. I wish you a goodnight each bedtime and thank you and my Spirit Guides for a good day. But I miss you!


And each day IS a good day. I can do as much or as little as I choose. I can do what I want, when I want, with myself or with a friend. I can eat whatever I want to each at home or at a restaurant. I can watch TV programs or not according to my whim. I do not need to negotiate with ANYONE on how I want to spend my life. There is nothing in my life that I do not like or that I dread doing. Each day IS a good day, and for that I am grateful.


But you are not here with me and that colors everything. Your absence doesn't change the colors to shades of gray but they are definitely not as bright as they could be. I am working on the "what's next" in my life and that also makes me feel a little lonely.

As you slowly lost the ability to be present for and available to me, I used to say I felt lonely. But I did not really know what lonely really felt like until you, however greatly diminished in ability, died. Death is forever, grief is forever ... I did not really understand that until October 4, 2015. For those of us left, life feels like it will go on forever but a little voice in the background whispers, "No, not possible. Get your act together, life is passing.”


Each day I do feel a little better and that is good. I expect that before too long I will be able to grief you less, but know that you will always be with me in my thoughts, my emotions, my love.


The Seven Faces of Grief


Grief is a very real thing. I only say this because experiencing it through Gregory's death, has allowed me the time to notice and think about it. It is real. It is a process. It unfolds and realizes itself in its own way, not really under the control of the person grieving. It never resolves although it does become easier.


It not only has emotional but also very real physical and bodily function effects. Not only does Grief make you feel sad but it also affects your energy, your appetite (in how you enjoy or digest your meals,)  your gut (in nervous stomach and toileting,) and whether or how well you sleep.


Grief seems to have a mind of its own in when and how it visits. A blooming flower, a song on the radio, an item in the grocery store can all be triggers to grief expressing itself. Sometimes Grief visits you at the level of a "suggestion or hint," sometimes in a wave that quickly disappears, sometimes in a torrent that seems like it will never end its flooding.


Lately I have learned to sit with Grief and accept the lessons it can teach me. It is painful to closely look at or accept Grief but pushing it away only makes it worse. So I allow myself times to grieve, but not for long periods of time!


At other times I thank Grief on its arrival but tell it that I do not want a visit right now. Usually, Grief will respect the timing and my request and will leave me alone for the time being. I remember to invite it back at a later date and welcome it then. Trying to forget or suppressing Grief only makes it worse when it finally does break through your defenses.


As I began sitting with and taking a closer look at Grief when it visited, I noticed that there seems to be at least seven types of Grief that one encounters: 1) Grief with the permanence of loss, 2) Grief in missing the past, 3) Grief on not being able to remember the past, 4) Grief over missed opportunities, 5) Grief and fear for self in the present, 6) Grief and fear for self in the future, and finally 7) Grief with the Mystery of Death itself.


1️. PERMANENCE OF LOSS: Missing Gregory is big. We will never again hold each other, or kiss, or enjoy an experience together. I will only hear his laughter in my memory. I will only appreciate his creativity and talents in photos of things he accomplished and not as he executes them.


He is no longer an interactive, physical part of my life. I miss holding his hand. I miss our talks and our love making. I miss hearing him play his grand piano. I miss having someone to lean on when sad and with whom to make decisions. I cry over the "never agains!"


2️. PAST MEMORIES: Memories of times past remind me that he is gone. Often instead of fond memories making me feel better, they make me sad. They bring on tears at best and sobbing and keening at worst. I am told this gets better over time, and it seems to be doing so, but still the overwhelming grief continues to visit at unexpected times.


3️. MEMORIES LOST: Time goes so quickly. It has been 41+ years since I first met Gregory and while I still have memories of much of our time together, there are so many that no longer hold office in my mind.


This is the nature of growing older and in having had a long term love relationship but now that Gregory is dead, the grief seems to allow me to spend more time realizing all the memories that no longer are clear, if they even still exist, and without the hope of inquiring to amplify them or find out the truth.


4️. MISSED OPPORTUNITIES: The mind begins to wonder about things I could or should have done more of, done better, or done in the first place. I am sad about the times I neglected to tell him how much I loved him and how important he was to me or the times we argued or when I was mean to him. I feel so bad that I wasn't as good to him as I could have been as we worked through many of the Dementia/ Alzheimer's bumps, pot holes, and turns in the road.


I realize that now that I know "how it all ends," it is easier to criticize my actions of the past but in reality when you are in the throws of day to day dealing with life, let alone Dementia/ Alzheimer's, your behaviors are the best ones you can muster at the time. I also need to take the time to remember all the things I did well, the ability to apologize immediately when I acted poorly, and Gregory's compassionate loving acceptance of me no matter what.


5️. PRESENT: Grief also finds its way in as I try to rediscover how to spend my days without having Gregory here to share my life (like in the earlier days before Dementia/ Alzheimer's) or having Gregory to care for and to be the center of my life (while he continued to loose language, cognitive, physical and other abilities,) and finally when he moved into the memory care facility (now with a great support team but my still spending a lot of time involved.)


At times it still is difficult to fill my days after having shopped, put groceries away, cleaned the condo, made dinner, watched a few TV shows, read for a while ... only finding it is just 7:00 and I am ready to end my day. But who wants to or is able to go to sleep so early? Also, doing all these things by oneself when used to having a partner with which to do them is lonely.


6️. FUTURE: Grief arrives when I realize I am 70 years old. Feel young but none-the-less am getting older. What will it be like to grow older alone? How brave will I be to travel the world by myself? What will my life be like as I slow down? Who will take care of me when I need help? What will become of me if I can no longer make good decisions for myself. I have trusted my "next in line" trustees for my protection, I love them dearly, in fact I trust them with my life (literally!) but still Fear of the Future is real.


A lot more fear could creep in, especially seeing what Gregory went through for so long, but I try to keep optimistic, and positive; and I am able to keep the worries at bay. I remember that with Gregory's illness, so many fears that I had never materialized so I needn't have worried. I also realized that spending energy on "working at not worrying" is as bad as the worrying itself. Big waste of time and energy for both!


7️. MYSTERY OF DEATH: The last, but not necessarily the least important, is the grief of wondering what Death is all about. Of course Death is all around us but when it comes so close, courtesy of one you love so dearly, the mystery magnifies. In many ways I cannot really picture myself dead, and that is part of the Mystery.

I believe there is something after and that gives me a little consolation. But where is Gregory? What is his time like now? Can he see me or hear me? What makes up  a life when it seems to end to easily? Where do all those skills, abilities, and talents go when all is said and done? What is the bigger picture of Life and Death?

Gregory and I had opposing views of the process of death. I used to think that as I was dying and my soul/spirit was leaving my body I would look back and say, "Ah, now I understand!" Gregory's view was that he would look back and say, "Ah, more questions!"


Reinventing Self


As I am writing my views about Grief, I am celebrating the fifth month anniversary, almost to the day, of Gregory's passing. I am less bereft, cry less, feel less depressed. I am better able to spend my time, better able to be alone, better able to speak to and learn from my emotions and my Grief, better able to brave the future, better able to slowly let joy back into my life.


I have worked at reinventing a physical relationship with Gregory; not bodily, but through talking to him, imagining his replies, setting up a shrine with his photograph and items he cared for, revisiting photographs of past vacations and adventures, imagine I am enjoying things for both of us when I visit the Botanic Garden or go to the Opera.


I have created ways to make my life meaningful, to be of service to others, to give back. I have made financial contributions, supported others in need, helps establish the More Than Ever Education Fund in Gregory's and my name, continue my blog writing with many followers, promote the documentary "Alzheimer's: A Love Story," and still hope to publish my memoirs with the hope that many of Gregory's and my lessons will help others know they are not alone on the path of Dementia/ Alzheimer's.


The hole which was torn in my chest by Gregory's Dementia/ Alzheimer's and by his death is still there. It is the sacred place where we can still be together. When he died, I felt like his soul/spirit began to fill that hole so we could heal together. It has been working. The pain of Grief never goes away but it does get easier.


A Room Full of Grief


Praying in groups, what is that all about? This post will take a brief look at Judaism, Catholicism, Christianity, and Buddhism and think about group prayer.


It was the firm belief of the Jewish sages that wherever ten Israelites are assembled, either for worship or for the study of the Law, the Divine Presence dwells among them. In rabbinical literature, those who meet for study or prayer in smaller groups, even one who meditates or prays alone, are to be praised, however, the stress is put upon the merits and sacredness of the minyan of ten and the ten must be men or boys who are Bar Mitzvah, women and girls do not count.


In Catholicism, it is believed that His mighty workings increase exponentially and His purposes are accelerated when people pray together. This message is not given to minimize personal prayer, instead, it is to show that personal prayer alone will not result in the working of God to the degree needed for spiritual transformation in people's lives, churches, cities, and nation.


Group prayer among all Christians is important and rewarding, devoting themselves to the apostles’ teaching and to fellowship, to the breaking of bread and to prayer together.


Buddhist thoughts includes three gems: Buddha - the historical Buddha and one's own potential for awakening, Dharma - the teachings of the Buddha; the truth of the way things are, and Sangha - the community. The Sangha generally refers to the fourfold community of monks, nuns, men and women lay followers.


Monks and nuns are respected for their good conduct and for their experience in meditation. They are also respected for their diligence, mindfulness and calmness. Wise and learned, they are able teachers of the Dharma. They can also be like trusted friends inspiring the lay followers along the path of Good Conduct.


Prayer itself can mean different things to different people. It can mean having reverence for a God, talking out loud or silently to oneself, having a personal experience with a God or having that experience through a priest or guru. It can be being grateful for what one has, begin grateful in advance for what one is asking for.

It can for some be bargaining, begging, and pleading for change or for better or for the fulfilling of a lack. It can mean getting quiet, calming the "voices in the mind," or distracting oneself.


This brings me to the topic of my post: A Room Full of Grief. You may have read on my other blog that I am involved in a Yoga Class on Grieving and Loss with my "Guru," teacher Corinne Peterson. I have taken a number of classes with her and when I heard she was doing this one I signed up last, I believe, August.


I wanted to spend some time with Corinne to recharge my meditation practice and knew that in many ways I have been grieving Gregory' Dementia  Alzheimer's for the last twelve years since the diagnosis.


Gregory and I have lived well and made the most of our journey but never the less, it has been a slow loss and slow grieving process. Little did I know that shortly before the class was to begin, Gregory would die.


The class has twelve members plus the teacher and has met for two hours every Monday for the last ten weeks. At the first class we shared a little, if we wanted to, about why we decided to take the class. Then we do stretching and movements and finish up with a quiet meditation practice.


A number of realizations have taken place in these sessions. First, I am not alone in grieving. I think when one is in the middle of grief, it is easy to forget that so many others out there are grieving and suffering loss as well. Next it was nice to be able to share with total strangers, a little about how I was feeling and grieving.


In addition no one was telling me to get over my grief, or calling me "poor you," or trying to "make it all better!" As people told their stories I could feel empathy for them even as I was feeling emotional myself. I could see that each of us was dealing with various levels of grief but there was really no hierarchy or evaluating whose grief was greater or lesser.


I could feel the heaviness of grief and loss in the room as the session began and I could feel it slowly dissipate for everyone including myself as we were able to focus our practice, awareness, time, and thoughts more on breath, movement, body, chanting, candle light and less on the weight of our grief.


No doubt the grief, loss, sorrow, emotions would return but hopefully with less wallop and it was nice to have the grief at bay for at least a few hours. At the end of each session I felt lighter, more in control of my emotions as well as more able to let my emotions ride when I needed them to but not to feel out of control or hysterical. So maybe this has shown me that there is some strength in groups and community and sharing with fellow humankind even if it is in a room full of grief.


I will need to continue my grieving, I know that it will jump out at me when least expected, but I can also get on with my life without Gregory and feel that I am in a good place, as he is now in a place which is more comfortable than he was while dealing with the slow decline cognitively and physically with Dementia/ Alzheimer's.

(The information about religious groups was taken in part from Google and in part in my own words.)


Personal Aspects of Dealing with Grief


Personal thoughts on how I am establishing a non-physical relationship with Gregory as our love continues and grows stronger each day. I love him MORE THAN EVER!

As you know, when we first received Gregory's diagnosis of Dementia/ Alzheimer's Disease, we reaffirmed that we loved each other More Than Ever. And sure enough we did continue not only to love each other more but continued to fall more in love with each other each day as his, my, our needs continued to change.


So we named our trust which safe guarded his continued care in the event of my dying before he did the “More Than Ever Trust.” And now we have named the education fund that will help provide financial support to homeless youth, the “More Than Ever Education Fund.”


As I continue the process of grieving Gregory's death I have taken Yoga and Meditation classes, read daily inspirations about Grief, found a wonderful book by Karla Helbert on Yoga and Grieving, and am taking again after many years a class in Tai Chi. I laugh, I cry, I giggle, I sob.


In many ways I have been able to create a new non-physical body relationship with Gregory by talking with him and in my mind, hearing him reply. I know that this is nothing new to any of you who have grieved for the loss of someone you love(ed.) I use the love(ed) construction if only because we all know that the love never stops, it just changes.


Another thing I do is sit with Gregory's remains, located in his Grandma Carrie's sewing box which lives on the book case shelf in my bedroom. I sit on the edge of the bed and we have a conversation now and then. I tell him about how I am doing, I tell him that I hope he is also doing well on his new journey.


I tell him about my adventures, new things I'm doing around the condo like growing a succulent garden, making his old office into my new office, creating a reading corner in the bedroom.


I discuss my plans for upcoming vacations and travel I hope to soon begin.

I buy things for Gregory and put them on his shelf. For Christmas I bought him a bar of his favorite chocolate and some Walker's Short Bread Cookies. The chocolate is still there but I ate the cookies shortly after Christmas.


How is that any different than children putting out cookies for Santa Claus and their being pleased to see that the cookies were eaten when Santa delivered their presents?

How is that any different than when Mexican families put out the favorite foods and drinks on their Día de los Muertos (Day of the Dead) oferenda (altar) celebrating the people they love who have died? Later the food and drink is shared with the living members of the dead one being celebrated.


On Gregory's shelf I have some favorite objects of his for example the "counting beads" made of beautifully polished natural seeds. A deck of cards sits there to remind him of how he loved to collect playing cards with unusual patterns on the covers.


Tonight as I was eating dinner at Johnny Rockets, hamburger and fries being my favorite meal, I imagined him enjoying the meal with me.

When I walk around the Botanic Garden of Chicago I share with him and remember his love of gardening and nature.


I talk about him to others least they not forget and so I do not forget that he is no longer with me. A couple of times I had dreams which on waking up caused me to forget that he has died. Those times are more painful than when I wake up knowing he is gone.


Tonight I bought him two pieces of Lady Godiva dark chocolate as an early Valentine's Day gift and put the bag of candy by his photo. I'll probably end up eating them before the holiday arrives but that will give me an excuse to buy him some more

Every night after I finish reading, I put my book away, glance over at the photograph of Gregory on his shelf and wish him "Good Night!" Sometimes I imagine (or really do) hear him say, "I love you too, Michael. I love you more than ever!”


Separation


There is a separation that takes place. The grief if still there but it is not at the forefront! You begin to realize YOU are YOU, and HE is HE and, WE are We even though WE now exists only in memories.


WE is what has changed. You grieve the WE, you miss the WE. You want to hug, kiss, hold, talk to, touch the WE; but that is no longer possible in a physical way.

So you invent ways to keep in touch. You set up an alter or shrine to him as a place where you can direct your conversations or you talk to him in your mind. You make decisions based on the way you used to make decisions together. You feel him with you in spiritual ways. You try to see the world through his eyes as well as through your own.


The world seems to be more magical because of this separation. Slowly you begin to question his death less, you appreciate your life more, you begin to appreciate the here and now, you do not wonder why Gregory and you had to walk the path of Dementia/ Alzheimer’s, you just did it because the path was presented and you BOTH loved each other so very much.


Gregory did not suffer from Dementia/ Alzheimer's, he lived well and we were able to compensate for the losses as they occurred. Most of the time he (we) did NOT suffer but rather lived and loved joyfully to our fullest.


The pain, the sorrow, and yes the suffering which was present at times, no longer exist now and in many ways, the separation of the WE into the ME and HE, makes the pain of his death more tolerable when compared to our being in the middle of the Dementia/ Alzheimer's path, with no idea what direction it might take or where and when it might end.


Slowly you let the memories return, you allow yourself to go through the photographs of your times together in the past and you can be joyful at the times you had, not sad at what no longer is possible. The difficulties, shackles, pain, confusion, frustration, fear, anger, and general craziness of dealing with Dementia/ Alzheimer's has disappeared, and that feels good. Gregory has physically also disappeared and at times that does not feel good.


You are happy and living life to its fullest, day at a time. Keeping happy, busy, productive. Taking care of yourself, your body, your mind. You love the condo, your new car, just about everything about the way you live your life. You feel good about family and friends. You feel good about being kind and compassionate and giving to others when you can.


I assume he is happy, wherever he may be, no¡ longer dealing with the tribulations of Dementia/ Alzheimer's. Perhaps in a dimension that allows him to further develop his enlightenment, learn lessons still waiting, keep tabs on you, watch over you, protect you when possible. He no longer has wants, needs, desires, oughts, shoulds; or at least it would seem so.


It is the WE that suffers. I love the ME in the condo. I miss the WE in the condo. I love the ME who attends the opera. I miss the WE that used to attend the opera together. I look forward to travel. I am sad that it will not be WE that are traveling. I find that when I am feeling sad, I have begun to be able to separate the ME from the HE and I do not always need the WE to feel good.


I am able to separate the situation into ME, HE, and WE. For example, for the first time ever I saw Nabuco at the Lyric Opera. I enjoyed Verde's music, the beautiful set and costumes, the glorious voices, the story line. In some way I felt that Gregory, possibly through me, was able to enjoy those things as well and perhaps they pale when compared to the beauty of his present existence.


In this separation, I do not allow or even need to succumb to sadness that WE are not experiencing this together. Not having the WE, should not diminish or take away from my life even though I have to do it with Gregory only being there in Spirit.


Will I Date Again?


This question, again, was asked of me recently. Good naturedly, with love, and with sincere caring ... but always unexpected. It caused me, in my explanation, to once again have to articulate my feelings and I decided to share them with you here, even though somewhat personal. How is that for a set up?


The question usually runs like this: Have you started dating yet? Are you going to be dating? Are you looking for a partner? And with lower implications: Are you going to get a roommate?


The answer runs like this. "While I do not rule out all possibilities, NO, NO, NO and NO!" With a smile but emphatically. The question always takes me by surprise, if only because it is the last thing I want, desire, or even think about (unless asked.)

I have had the LOVE OF MY LIFE. Gregory, who died approximately 18 months ago, is still a large part of my life, especially after 41 years. Why would I want another partner? life mate? lover? roommate? Just because I am a widow (prefer that word to widower :-) Why would people automatically think I am on the lookout for  the next relationship or a roommate?


Relationships take a lot of work. I often referred to Gregory and my "union" as one based on "The 49/51% Controlling Interest Principal." The give and takes, negotiations, conversations, and arguments that are involved in any relationship are difficult. The ones that are part of a love relationship can at times seem close to impossible.


While the 41 years of our relationship were not always pieces of cake (I especially love Devil's Food with Vanilla Buttercream Frosting,) being on the side of being in a relationship (51%) always won out when compared to spending a life without one (49%.)


But often the race is a close one and the work involved in maintaining a successful relationship is ongoing and not always easy. Roles should be subject to change on a moment's notice, (another quote Gregory and I often used,) respect (including self-respect) is a key factor, compassion is always the rule, and giving up part of oneself is a necessity ― in any successful love relationship.


For Gregory and me, having stepped outside of societal norms by declaring and accepting our homosexuality, we often times had to set out our own norms, expectations, and milestones along with the accompanying millstones. (Poetic isn't that expression "Milestones and Millstones?"


Up front let me state, YES, I am a gay man and therefore find other men sexually desirable. Like most Gay Men, I guess I am always checking out those around me and would not turn down a sexual advance if the occasion arose. But just because I am a widow does NOT mean I am looking for a new relationship!


I enjoy my solitude. I love having the condo to myself ... to keep clean or to mess up as I choose. The cats, Emma and Gigi, greeting me when I arrive home, their mad chasing each other at least three times a day, and their warm purring when snuggling in at night will NEVER replace my Gregory, but they provide more than enough "human contact" and a fair amount of responsibility.


My friends and family fill my time comfortably and are there when I need extra support, for example picking up a few groceries for me if I am ill. They are there to help meet my "nurturing quotient" as I support them. Calls and e-mails are exchanged, meals in and meals out are shared, events are jointly attended, movies and theater are shared. More than enough comfort for me.


I am never lonely, except when my emotions choose to visit, unexpectedly, with their life lessons and my grief for Gregory's having died takes over. But after some tears and some introspection I come out the other side feeling OK again, if not stronger!

I need to add, in relation to relationships: Who would want to look at me, a seventy two year old man who has seen a few? Yes I am vibrant, yes I am well-groomed and dress well, yes I am attractive, yes I am experienced and interesting ... but I am no longer (if I am to be honest with myself) fuel for sexual conquest.


When younger, every man passed was a potential sexual partner. Every waiter or clerk was a potential adventure. Every glance, every brush of knees in a movie theater or on the bus, was a possible sign that the other one was interested. Most "signs" didn't pay off, but in those days, that was one of the only ways of "Homosexual Communication." When most things were still underground with very few places to go where you could be your "Gay Young Self," except maybe one of the few then existing gay bars, this is where the potential action was.


Also, I need to add, that I "came out" when I was 18. I was young and was attracted to other young men my age. For me, and I believe for lots of us, that youth culture still holds sway even though one grows older.


So here I am, now 73 and by force of habit (and fantasy) I still prefer younger men. In looking for a relationship, as an invisible 73-year-old at whom no one glances or is attracted to anymore; what are my chances for finding a relationship?


With Gregory, we were young, with youthful bodies and desires. Over 41 years we grew old together and our love grew stronger together (even though the losses of the Dementia/ Alzheimer's) without having to depend of the excitement and lust of youth.

Older men do not interest me and younger men do not notice me. For those older men in their 50's, 60's and 70's, I say "No thank you." For those younger men who would like a "daddy" (not necessarily a sugar daddy with money,) I say "No thank you," that turns me off. For those younger men who would charge me for their services, I say "No thank you," that turns me off as well.


So as for finding a new lover, “NO!” Besides the slim chances, Gregory is resting in peace ... so the 51%-49% issue is resolved in favor of not being in a relationship. The 49% wins out.


I enjoy my solitude and privacy, I enjoy the condo to myself (in or out of order.) I come and go as I please. I eat when and what I please. I have no major day to day responsibilities to anyone but myself (and my kitties.) I wake up when ready and go to sleep when ready and take a nap when I choose


I buy what I want to buy and usually can afford to do so. I choose where I want to travel, stay as long as I want, meet new acquaintances or old ones on the way. I do not need a roommate for company or to share the expenses, I am fortunate!

And finally, as a 73 year old man, (who might still like a sexual tryst or two :-) who would have me ... not that I would NOT want to be had!


The Worst Part of Dementia/Alzheimer’s


Last night as I was drifting off to sleep, I was thinking about the worst part of being on the Alzheimer's Journey with Gregory. At first so many visions assaulted my mind that the answer to my own question was one of numbness. The losses? The frustration/confusion? The sorrow/loneliness? The joys/sorrows? The inability to understand, and at times even to know how to understand the trajectory of the disease?


Then, like a flash, the answer/insight came to me: Life. Living. Being alive ... that was and is the worst part of the Alzheimer's Journey.


"To be alive is to suffer" according to Buddhist understanding. In part we long for something, feel pain and loss in our lives, look for stability and predictability. We want things to always be the same, the good life; but in fact things change and what is ... is ... and it is not always good.


Our lives are defined by dissatisfaction. We want better and we want good. Those are not bad expectations but it is not possible to hold on to them forever either. So dissatisfaction is how we deal with the reality of being alive. Things change, things are not always good, everything dies. Everyone changes, everyone dies.


Dissatisfaction arises out of our own ignorance of our reality, wanting it to be something other than what it is. Our longing, craving, thirsting is what dissatisfies us as does the changing of our reality.


The study of Buddhism tells us that if we are able to sit with our dissatisfaction, look closely at the reality of life, live in the here and now; we can learn to accept this human dilemma and live wholeheartedly in the here and now, in the face of impermanence, knowing that someday we are all going to die, and that is part of life.


We can increase our tolerance of instability and change and learn to appreciate today!

We are different people than we were when we went to sleep last night. We will be different people when we go to bed tonight than we were when we woke up this morning. These differences, at the basic level, are due to sloughing off cells and growing new ones. These differences are also based on our experiences as individuals: what was done today, what was seen today, what was heard today, what was said today.


These differences are what make life and love interesting and vital and in turn make relationships interesting and vital. There are failures and there will be successes. There are illnesses and there will be wellnesses. There are problems and there will be solutions. There are arguments and there will be "making ups." There are tears and there will be laughter. There are sorrows and there will be joys.


Even armed with this knowledge, I so still lament not being able to hold on to the physical interactions which Gregory and I used to have. This part of Gregory's death has been the most difficult part for me to let go. I want to kiss his lips, look into his eyes, smell him, tell him in person that I love him. I want to hold his hand, talk with him, share, hear his voice, walk along the beach together. I want to buy things for him, cook dinner for him, get him flowers and dark chocolates.


But those things can only exist now in memories and when I visit those memories, at times, I panic at the finality of these physical interaction losses. I want to hold on to them and not let them go but that is not within my control. Death arrived, in Gregory's case bringing completion and peace for him as well as for me. In my case it also brought deep grief for the change of a deep love, and is a constant reminder that nothing is permanent. Everything changes! The love has not been lost, but is has changed.


I have learned to "be with" Gregory physically in new ways: I talk with him at bedtime. I still bring him flowers and chocolates (which I eventually eat.) I acknowledge him as I pass his photograph which sits with his shrine in the bedroom. I sound a Tibetan Prayer Bowl to say hello. And periodically I dream about him.


In my heart I celebrate holidays with him. I buy myself little gifts from him (which I used to do with his permission while he was alive.) I tell his stories and I tell our stories. His name lives on with family and friends, at Chicago Children's Museum, in my blogging, in the More Than Ever Education Fund, in the documentary Alzheimer's: A Love Story which has been accepted to over 75 film festivals worldwide and has won over 35 awards including two from the most prestigious American Pavilion of the Cannes Film Festival.


So to be alive, to live, is to encounter changes including the ones death brings, including the ones Alzheimer's brings. We will all die. That is not a profound statement. We will also live and hopefully learn to accept that everything changes, that the reality is that we cannot hold on to things permanently, hold close for ever anything, except in our memory while we still live, and that is profound.


Living with Alzheimer's teaches that lesson so well and if you do a good job of giving and receiving unqualified love during the journey you will survive. You will suffer but you will survive, until it is your time to move on.


In some ways the most important part of the story of Gregory's and my life together is what happens between the lines of: Gregory was born. Gregory lived. Michael was born. Michael lived. Gregory and Michael met each other. Gregory and Michael loved each other.  Gregory lived with Alzheimer's. Michael chose to walk the Alzheimer's Path with him. Gregory and Michael continued to live and to love and received many gifts of understanding from each other. Gregory died. Michael grieves but continues to live. Michael will die.


That is the reality, so why waste time being dissatisfied? You are doing everything correctly. Be forgiving if you back-step knowing you will again move forward. Observe, acknowledge, accept your reality, and get on with the miracle and joy of being alive, no matter what it may bring!


Different Intensities of Knowing Gregory is Dead


This post was motivated by today's work on editing my memoirs, through my blog posts. I arrived at October 4, 2015 and today's editing dealt with his death. Of course I cried as I worked through to October 15 and then stopped for breakfast.


An aside is that as I was editing the memoirs through November and December, I was looking for evidence of Gregory's failing or changes in him that might have foretold of his passing. But there were none.


I find that kind of amazing because in thinking back, I think I saw some changes in energy, availability, his taking more time to recognize my arrival, more time spent napping, and difficulties swallowing at mealtime but I never wrote about them.

Back to the topic of the post. Knowing Gregory is dead takes many forms. Not necessarily in order of importance:


Todays was 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.


Re-watching 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 everyday life!


The Grief Continues … But Differently


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 continue 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 in-between 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, out-loud! 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 and 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 solace or at least realize they are not alone, Gregory shares in the glory.


By telling our story, Gregory and I 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 subscriber to the journal.


2) Making 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 Australia, Nigeria, New Zealand, England, and Canada.


3) Doing a presentation at the Evanston Art Center showing the documentary,  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.

  1. 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.


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


  1. 2)Do a "one man show" at a local Chicago gay theater "Pride Film and Plays." Approximately 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 presentation 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.


  1. 3)Help plan and attended the third annual More Than Ever Education Fund Luncheon at the Orrington Hilton Hotel in Evanston. Approximately 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 premier 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!

Grief, Forever!


Having gotten some new insight into what it is like to live with Dementia /Alzheimer's, and feeling badly about some of my past behaviors with Gregory because of having not known what I now know, I wrote that, "I will probably grieve until I die."


My niece, who loves me dearly and whom I love dearly in return, send a comment which said, "Heavy.  Grieve forever? I hope you can forgive yourself someday.  Greg has."


She and I talked about this on the telephone after I had given it some thought. I thank her for enabling me to write this!


I tried to explain that I have forgiven myself for the most part but when something new comes up, it brings along the next round of grief and therefore the next round of forgiving.


But more importantly, I really do believe that I will grieve Gregory's death for the rest of my life. I will probably love him longer than that if I am correct in my thoughts of the afterlife!


It is NOT like the traditional wedding ceremony says, "Until death do you part." It goes on and on, even after death.


GREAT LOVE brings GREAT GRIEF!


I have previously addressed the idea behind the bland statement, "Grief gets easier." My theory is that because I continue to live (and Gregory does not continue on this physical plane) I continue to grow and become larger in my understanding of life and death. (Not all people are able to do this for themselves!)


Because I am larger in my understanding of what it means to me to be alive, the grief I carry for Gregory is proportionately smaller! It becomes smaller if only because it is fixed in time and does not continue to grow the way it used to grow when Gregory was alive.


In one way the good times are fixed and get smaller when compared to the continued good times I experience without him. Also the difficult times have ended when every day there were new losses to grieve and to anticipate so they are fixed as well.

Every now and then something triggers a return of grief: a song, a place we visited, a favorite restaurant, a season, holiday, birthday, etc. For a brief period of time (and the time lengths vary with time as well as in intensity) the growth I have made in the past, and "being larger" quickly unravels and I am back to where I was when that memory was fixed in my experience.


Because I no longer exist at that moment, after the brief period of grief's return, I am able to quickly return to my new, larger, current moment in time and continue on. Recognizing the grief and sitting with it helps that brief period of time resolve itself more quickly, sometimes with greater understanding, and allows that memory to continue as either a good one or if a difficult one which has become a better one!


A few other soundbites:


I have learned to carry GRIEF on one shoulder while at the same time carrying JOY on my other shoulder.


I no longer fear GRIEF, I have learned to sit with it as a FRIEND with a message

What would it mean about Gregory's and my relationship if there was no GRIEF?

Never tell someone else HOW to GRIEVE or WHEN to stop GRIEVING.


GRIEF is a very individual activity.


The most you can do to support a loved one with their GRIEF, is to sit there with them quietly. Allow them to TALK if they want to, allow them to CRY if they want to, allow them to REMEMBER if they want to. HUG them if you ask and they agree. You may speak when asked to join the conversation but usually, a conversation about GRIEF is between the person still alive and the person now deceased.


If you share grief over the same person, it may be part of your conversation as well but you will have to get support when it is your turn. Do not add "Me too!" to the conversation when it was initiated by the other person first.