The story I am about to share with you is very personal. I’m comfortable with crying in front of you, however it is very difficult to cry ... and speak at the same time. So if I do get choked up, I will pause, take a few breaths, and be right back. Probably before you even notice I have gone! Thank you for your understanding.
I am NOT presenting my story to you today as an EXPERT in the field of GRIEF ... NOR as an EXPERT in the field of DEMENTIA/ ALZHEIMER’s ... but rather as someone with the DIRECT and INTENSE EXPERIENCE of having LIVED with both of these issues.
Let me tell you a little about me … I am an educator, have worked with children in regular education as well as those with special needs.
I was an administrator for a Talented and Gifted Education Program, taught Junior High Spanish, and taught a number of university level education courses and seminars.
I have been retired for 20+ years but have been more than active as an educator, speaker, writer, poet, blogger, actor, opera supernumerary, children’s museum curator, Flea Circus Ring master & Dementia /Alzheimer’s caregiver partner.
Gregory earned his BA at Wesleyan University in Connecticut and received his Master’s Degree from Harvard University where he studied Architecture, with Phi Beta Kappa recognition.
He ran his own high end architecture and interior design firm and served as architect of record for renovations at the Baha’i National Shrine in a suburb of Chicago, Wilmette, Il.
Gregory was a writer, an artist, was well versed in music and art history, was a concert level pianist, spoke French, and won many awards for his architecture and interior design skills.
GREGORY, my husband of over 41 years, was diagnosed with DEMENTIA, most likely ALZHEIMER’S, in the 29th year of our relationship. He was 55 years old. He died 12 years later at age 68 due to complications from Alzheimer’s Disease.
I might say that Gregory & I lived WELL with Dementia/Alzheimer’s, refusing to accept the diagnosis as a “death sentence. Also, I never referred to it as HIS diagnosis but rather OUR diagnosis.
There were more GOOD times than there were BAD and we PREVAILED!
GREGORY, for the most part, dealt with HIS CHANGES and GRIEF in his usual CALM manner.
Eventually the Alzheimer’s created a BUFFER which kept him from fully being aware of the changes through which he was going.
Not everyone is as FORTUNATE as we were.
How I dealt with MY GRIEF is a different story. After a number of years, the GRIEF over Gregory’s losses my often playing a guessing game at how to understand what he was going through and how to support him and my increasing responsibilities for both of our lives over time, was beginning to take its toll.
But rather than wallowing in our situation, I actively worked to make our life and days as normal and enjoyable as possible and that helped me to cope with the situation.
My bouts with MILD DEPRESSION and GRIEF increased over the twelve years Gregory & I walked the Dementia/Alzheimer’s Path.
Early in the experience, I turned to my computer to write and to process my experiences, since I could no longer talk things through with Greg.
I learned to cry myself to sleep at night without shaking the bed so I would not wake him.
Sometimes he and I would have a cathartic cry together ... or a MEAN exchange followed quickly by an apology; but for the most part, I dealt with my GRIEF alone.
Many long term “friends” deserted us. I understood their not being able to witness the changes Gregory was going through but none- the-less, their desertion HURT! I was SAD as well as ANGRY.
Family and friends did the best they could to support us but what could they really do considering they had their own lives to live and many lived in other parts of the country.
I pretty much was on my own. About four or five years into our journey, I looked for and was fortunate to find, Peter, my Jungian Psychologist who really met my needs. He supported me when I was on target with my thinking and challenged me when I was off.
For many people, their religion and their faith community provide the needed support. I do not fault this, but Gregory and I never found peace of mind in religion. He considered himself a RECOVERED CATHOLIC and I consider myself a CULTURAL JEW.
What IS IMPORTANT, is to find someone, someplace, or something to provide one with the much needed “shoulder to lean on!”
Both Gregory and I had studied various Buddhist teachings and felt comfortable with them. I read more about Buddhism and learned how to meditate. I found Corinne ... I call her my Guru ... and she helped me continue on my path to understanding meditation and Buddha’s teachings.
To this day, I attribute my studies in Buddhism in helping to keep me sane, to supporting me through our journey with DEMENTIA/ ALZHEIMER’S, and to cope with GRIEF. It gave me HOPE ... at least on a day to day basis ... that our life would be OK.
HEALTHY vs UNHEALTHY GRIEF
For this presentation, I wanted to make clear in MY mind ... ways of thinking about GRIEF.
HEALTHY vs UNHEALTHY. This is probably the most obvious difference. All types of GRIEF, while causing various degrees of suffering and pain and duration, can be experienced in a HEALTHY way or in an UNHEALTHY way.
Each person grieves differently, there is no one right way
The main differentiation is that with HEALTHY GRIEF, a person can for the most part continue to function. The grief becomes more tolerable over time. Initially the grief seems terribly overwhelming but quickly the person is once again able function at increasingly more functional levels. More on this later.
UNHEALTHY GRIEF is disabling and crippling and can limit the normal life activities of the grieving individual for a very long duration or forever forward! This person seems to quit life and can find no reason to “go on!”
I cannot say why one person hangs on to their grief (maybe as a crutch and/or attention getter) and another uses it to grow. Why does one deal with GRIEF in one way and another does it in another way.
Each person is unique but one person is eventually able to continue with life while the other cannot.
DIFFERENTIATION: ONGOING GRIEF, ANTICAPATORY GRIEF, COMPLEX GRIEF. END POINT GRIEF.
ONGOING GRIEF continues over the years. It becomes a 365x24x7 activity that can last a few years or decades.
ANTICIPATORY GRIEF, actively hides in the background and is additive as one anticipates loss after loss, change after change. Wondering what the next will be and when the next will arrive.
COMPLEX GRIEF, to clarify my thinking further, deals with the combined effects of ANTICIPATORY and ONGOING GRIEF.
Finally, the GRIEF which arrives with the DEATH of the loved one, I labeled END POINT GRIEF.
I do not mean that GRIEF for the loved one ever really ENDS, just that the ALZHEIMER’S has ENDED. More on this later as well.
ALL GRIEF affects a person PHYSICALLY as well as EMOTIONALLY.
COMPLEX GRIEF MAGNIFIES the effects. This makes dealing with GRIEF while also having to cope with the effects of being a care partner for DEMENTIA/ALZHEIMER’S much more difficult.
EMOTIONALLY the person deals with, among others: increased irritability, numbness, bitterness, detachment, frustration, preoccupation with loss, and inability to show or experience joy. Grief often looks like depression.
PHYSICALLY the caregiver deals with among others: appetite and digestive problems, fatigue, headaches, chest pain, back pain, sore muscles, illness, difficulty breathing, and difficulty sleeping.
I have experienced ALMOST ALL of these, emotional and physical symptoms!
These symptoms can wreak havoc when experienced short term, but can affect the caregiver more with ONGOING GRIEF (365 days a year / 7 days a week / 24 hours a day basis.)
COMPLEX GRIEF takes a MAGNIFIED toll on the caregiving partner causing depression, allowing for neglecting one’s health, turning to comfort eating which usually becomes unhealthy eating, use of alcohol or drugs, fosters illness ... and can cause early death.
Again, depending on how you handle the GRIEF, how you let it affect your daily life, how quickly you can “feel better,” it can be either HEALTHY or UNHEALTHY.
GRIEF is usually STRONG in the beginning, can seem DEBILITATING in the beginning, but it does get better over time. Again, more on this later.
IN LOOKING BACK, however, sharing those 12 years of DEMENTIA with Gregory were VERY IMPORTANT to me AND to him and I am grateful for having had them.
Over time, learning to sit with, experience, understand, look for lessons in, and accept the diagnosis, to accept my EMOTIONS with a THANK YOU and to try to learn from them, helped me to ride it out.
My continued studies in Buddhism, working with my therapist and my Guru, doing what I could to keep Gregory happy and safe, taking a few short three or four day vacations with respite care provided for Gregory, reclaiming my life as I could with support from family and friends ... all helped with the GRIEF.
I looked for ways to cheer myself up. I went shopping, out to dinner, to the movies, the opera, worked out at the health club, took long walks, remodeled and rearranged the condo, watched TV, cooked, continued my writing.
I took a class called “Yoga and the Art of Grieving,” and found a few excellent books on the subject.
While I still GRIEVED, and while Gregory continued to lose abilities, over time it was more tolerable and less debilitating. Once again, more on this in a bit.
END POINT GRIEF
One day in October, three plus years ago, due to complications of end stage Dementia and Pneumonia, Gregory took three days to prepare himself to die.
With the help of Hospice and the Memory Care Facility staff, he passed peacefully and with the help of Hospice, it was easier for me to understand, live through, and accept his dying.
When he died, I said my goodbyes and left his body to Hospice for final handling.
It was a warm, clear day. I stopped when I reached my car to analyze what I was feeling. Besides AMAZING SORROW, I felt JOY at Gregory’s having moved on to his next adventure, JOY at MY being able to move on with life, and FREEDOM.
And I had the insight, that at the moment Gregory left his physical body ... the Alzheimer’s … DISAPPEARED … POOF, up in smoke, gone! All the difficulties of Alzheimer’s for both Gregory and me: the confusion, frustration, anger, fear, losses, pain, GRIEF; had disappeared and Gregory was OK again!
... And so was I!
OR SO I THOUGHT ...
I had not yet begun my END POINT GRIEVING over Gregory’s death and never really UNDERSTOOD the FULL nature of GRIEF until he died. I wasn’t ready when it hit!
I cried, I howled, I learned a new word: KEENING. I felt ill, I didn’t sleep or eat well, I just felt numb. I felt guilty, I felt angry. I was frightened by my future living alone.
Often I felt on the verge of panic and felt that if I gave in fully to my emotions, I would have to be sedated and possibly never be sane again. In the beginning, END POINT GRIEF always seems very UNHEALTHY.
In looking back, it turns out that the COMPLEX GRIEF: ANTICIPATORY and ONGOING GRIEF, was DIFFICULT ... but it was NOTHING compared to the END POINT GRIEF which arrived when Gregory died.
Before there was always hope, there was always tomorrow, there was always nurturing. I was able to change as Gregory changed, but now the FINALITY of death ... began a new experience for me.
Just a short note, some people delay their END POINT GRIEF and refuse to face it. Sometimes that is due to the necessity of continuing to work, or support ones’ family, or because of personal health reasons. While this is a HEALTHY approach to grief, eventually one MUST grieve, not just suppress it.
The most difficult part was the loss of a PHYSICAL RELATIONSHIP and I have had to work at establishing new ways of having a physical relationship with him. We could no longer hold hands, I could no longer hug him, I could no longer talk directly to him, I could no longer see him.
To help with developing a new PHYSICALITY, I set up a shrine for him on the bookcase in my bedroom. Each night I sat by the shrine and told Gregory how I was feeling. Told him how I spent the day. And then laugh, saying, “Why am I telling you all this. You probably already know.” I still talk with him but less often and about more important things.
A framed photograph of us shortly before he died sits on my desk. I carry a small amulet, a bronze teddy bear, filled with a small bit of his cremains, in my pocket. At all times, I carry him with me in my heart and mind.
I found that talking about him with family and friends, and mentioning his name helped to “keep his memory alive.” Over time I have been able to visit memories of the past and our times together, including revisiting our photo albums.
Besides the legacies of the love that Gregory shared with me and so many others, there are three major legacies left by Gregory which have also helped with my GRIEF.
First, hundreds of thousands of people, including YOU now, will have shared Gregory’s and my love story.
Second, a fifteen minute documentary about Gregory and me towards the end of his life has gone on to be accepted at over 90 film festivals: locally, nationally, and internationally. We have won over 35 awards, the most prestigious of which included two from the American Pavilion of the Cannes Film Festival.
The third legacy was the creation of the MORE THAN EVER EDUCATION FUND, in Gregory’s memory, which provides college scholarships to Chicago Area youth confronting homelessness and administered by the premier Chicago not-for-profit, La Casa Norte.
Besides working on the PHYSICALITY of relationship, slowly, I began to realize a NORMALCY in the process of grieving, its UNIQUE character and pain, the inability to CONTROL it.
I held on to the BELIEF ... and HOPE ... that IT DOES GET BETTER OVER TIME! Which it did.
I came to understand “GETTING BETTER” differently than I had up until this point. Again, more on this later.
I learned to ignore other’s ideas about how long I should GRIEVE and in what way. I was able to accept that the pain of DEEP GRIEF is the cost for GREAT LOVE!
For the most part, I believe that people are uncomfortable with other people’s GRIEF and can be embarrassed by their own.
They don’t know what to say or how to act. They don’t realize that sometimes the best thing to do is just sit there and silently BE THERE for the other person.
This is the FIRST PART of my having said MORE LATER ON GRIEF GETTING BETTER. “The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one, you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but, you will never be the same. Nor should you be the same, nor would you want to!” Elizabeth Kubler-Ross and John Kessler.
This is the SECOND PART of my understanding that it does get better. I believe that no one EVER gets OVER or THROUGH grief, one just learns how to LIVE with it, to CARRY it, to let it show up to revisit in full force when necessary, to know that that is OK. SOMETIMES to AVOID it when necessary but then make sure to welcome it back at a more convenient time.
It is important to welcome the GRIEF when it revisits, sit with it even though painful, thank GRIEF as if it were a friend and ask it what LESSONS it has brought you to think about. If you can do this, the visit should be short and sweet and you should feel somewhat better.
The best job you can do is to continue living as well as possible, without being able to share life with the person you loved and still love even after their death. The LOVE never ends. Now, three years after Gregory’s death, I feel more comfortable in my GRIEF even when it visits periodically, unexpectedly, and/or stronger than usual. It has gotten easier, as they said it would, but not in any way they or I could have predicted and not in any special order or specified time frame.
The THIRD PART of never getting over or through grief is that GRIEF remains the same, YOU GROW and EXPAND, so the grief is smaller and further away. The person who passed is now finite, no more struggle but also no more growth or change. Predictable vs unpredictable. You are infinite, continuing to grow anew each day, trying to get on with your life, as you become a bigger, different person.
When an important reminder like a holiday or birthday occur, you regress and contract, so the grief seems the same at it was in the beginning. But then you are able to re-grow and expand again, only more quickly, more easily, having done it so often. So in some ways the GRIEF does not get BETTER … YOU DO!
I BELIEVE THE MOST IMPORTANT LIFE LESSON IS,
“LOVE AND BE LOVED!”
IN SUMMARY: How did I survive the ordeal of living with and then GRIEF of Dementia/Alzheimer’s?
First, I truly believe that GREGORY’S AND MY LOVE for each other is what made the difference for both of us.
Next, by actively working for the twelve years we walked the Alzheimer’s Path, to make Gregory’s life as safe, comfortable, peaceful, engaging, and loving as possible … and … by taking care of myself when I could, made the EXPERIENCE more tolerable.
I attribute some of my ability to grieve Gregory successfully, in a healthy way, to the fact that while my ONGOING and ANTICIPATORY (COMPLEX) GRIEF was not easy and took its toll, because I have been grieving for the twelve years of our living with Gregory’s Dementia/Alzheimer’s and now for three years since his death. I have had a lot of time to process his illness, the changes in our relationship, and his eventual death.
I have had time to FORGIVE myself for those times when I was not at my best in dealing with the situation. I have been able to FORGIVE Gregory for LEAVING me.
So in some ways, COMPLEX GRIEF, the combination of ONGOING and ANTICIAPTORY GRIEF, while it takes its magnified toll, can help prepare for the arrival of END POINT GRIEF.
Telling my story at conferences like this, hoping that it will help others, letting others know they are not alone … helps with MY grieving. As I hope it has helped YOU.
The diagnosis of Dementia/Alzheimer’s does not have to be a DEATH SENTENCE. It can be a time of RENEWED LOVE AND GROWTH. It can be a time of COMPASSION and UNDERSTANDING.
You can get through this, it will not be easy, but with love, respect, support from others, and SOME creativity … you can invent a NEW life that will be OK … DIFFERENT … not always easy … but none the less … you will be SUCCESSFUL!
Gregory did not SUFFER with Alzheimer’s but lived as well as he could. Gregory was not a VICTIM of Alzheimer’s. He was a HERO. Recently I have been able to say that neither of US were VICTIMS but rather HEROS.