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 long