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.
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.
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
Horoscopes and Breakdowns
Today’s Dose of Grief
A Love Affair With Loneliness
The Intensity of 12 Years vs the Longevity of
It’s Been A While
The Seven Faces of Grief
A Room Full of Grief
Personal Aspects of Dealing With Grief
Will I Date Again?
The Worst Part of Dementia/Alzheimer’s
Different Intensities of Knowing Gregory is Dead
The Grief Continues … But Differently
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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.”
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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.
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