FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Sunday, November 29, 2015
Thursday, November 26, 2015
During the last two years of Gregory's life, we both really learned more about being in the now. His greatly diminished world at Lieberman was all he had and I believe that he really enjoyed not having to make decisions, the lack of stress, no pressure to perform, and no need to remember. In many ways he had always taken things as they came, didn't worry too much, and had confidence in himself that he would find the way when things got off target or lost but now his life was greatly simplified.
I learned not to spend too much time in the past and to really enjoy our time together at Lieberman as it unfolded. Again, how we spent our time together was diminished but for the most part, when I was able to accept the now, I was able to be in the moment without needing to regret the past or plan for the future.
Now that Gregory is no longer with me, at least physically, all I have of our love and relationship is the past and my memories of the past. Many of these memories are thankfully triggered by photographs. In fact as I have continued to clean out, rearrange, freshen and "re-claim" the condo for myself, I have been coming across more photographs of our time together.
The photographs represent vacations, family events, celebrations, holidays, and sometimes just posing in love. I have scanned some of these early, 36mm photos and am posting them here.
Of course I have a now and I will have a future. I am not putting too much pressure on myself to discover there future right now but rather to just let it unfold as it chooses. My future is based on all who I have been and all that I currently am and I hope that as I arrive at who I will be, that it is (as Gregory and I are found of saying)"More Than Ever."
Wednesday, November 25, 2015
- Where does the ability to play Chopin's Ballad #43 go when a person dies?
- Where does the knowledge to design a house that people see as beautiful go?
- Where does the ability to choose colors and furniture for a room that are peaceful go?
- How does the nurturing without qualifications go that came so easily?
- How does the creativity in so many areas like music, art, design, etc disappear?
- How does the culinary skill that helped prepared so many delicious meals retreat?
- How does one account for a life well lived?
The physical evidence of Gregory's abilities, knowledge, creativity, nurturing, and skills continue to exist in form here and there around the condo and also in memory and imagination but the physical evidence of Gregory himself only continues to exist in photographs and in his Grandma Carrie's sewing box in the from of its basic element: carbon.
I have not created this quote but you may use it: Death like birth is one of the great mysteries of life.
Monday, November 23, 2015
Today in session two of round 3, during our guided Resting Yoga Nidra meditation, we once again revisited our "Internal Resource." It is a place created in our imagination, in our mind, where we can go to feel peace, to escape to if we feel fear or upset during the meditation. It can be a place of refuge we can take a few minutes to visit whenever in life we feel sad or in need of a sense of peace.
Here is an excerpt from the post dealing with my "Internal Resource" post during a previous round of classes:
I revisited my Inner Resource, the place I have created in my mind where I feel secure, to which I can return at any time during the yoga practice or in my life when feeling over stressed, overwhelmed, or just in need of some peace and quiet.
I previously started out describing my Inner Resource as deep in a mature forest, with a clearing with dappled sunlight and flowers.
This time I added quite a few things to the image. Just across a path, I added a tiny one room cabin just big enough in which for me to live, in my mind, comfortably and simply with knowing how much is enough.
Next I added a rustic bench to the garden so I could sit and meditate and enjoy the flowers, the sunlight, and perhaps the mist dripping of the leaves during a rainstorm.
Later I added, about a block away at the edge of the forest, the ocean with waves that can be heard through the house's windows or while sitting in the garden.
Corinne suggested we give our internal resource a name so we can use it as a trigger to the inner peace and safety one feels there. I simply called it, "Peace."
Here is an excerpt from the next post dealing with my "Internal Resource" post during a previous round of classes:
This time while visiting my Inner Resource I added a few more things. While in the cabin I though I sensed a movement or shadow. First I decided that my RIP cats Mariah and Hoover and Broadway live there. When I visit I know they are asleep under the bed, or playing out in the forest, or whatever I want to imagine them doing.
Then I realized that my mother, the anniversary of her death coming up in less than a month, was there in the house with me. I decided that my "safe place" could also be a place where I could invite in and visit with family and friends who have died and whom I still hold in my heart.
It may feel a little strange to you, my looking forward to talking with the dead, but it makes me feel warm, and loved and will give me the ability to talk about things that I never had the chance to say while they were alive.
I went into today's session without any expectations, so what happened was surprise.
First during our stretching, when I was reaching out and upward with both arms I felt like I was opening myself up and searching for something. Not sure what I was looking for, I just stayed with the feeling and found myself crying silently with tears rolling down my face.
Next, today's visit to my "Inner Resource" was just as peaceful as it had been previously.
This time I stayed in the little cabin remembering that I had previously visited with our RIP cats, Mariah most recently (RIP) and my mom (RIP.)
Then I decided that I could "conjure" Gregory to join us. At first I pictured him on the comfortable, cozy, quilt covered cot, sleeping on his back. I did not like this image because that is how I last saw him in his bed at Lieberman after he had died.
So I turned him on his right side (in my mind's eye) thinking that he had not been able to do that for himself for close to two years. Before I knew it, my picture (without my thinking about it) had Mariah (RIP) curled up in the crook of his knee.
Next I climbed in with them, with Gregory "spooning" me. For most of his last year at home, I would "spoon" him with my arm around him sending my protection towards him.
I enjoyed the image and the experience but began to wonder if I was just being creative or if there was something deeper in my ability to conjure him into the cabin and the scene which was unfolding.
Without my needing to do much thinking I realized that his arm was around me as he was sending protection towards me in his embrace. I didn't really have to imagine his arm around me, it just was there.
After spending some time with Gregory, as Corinne began the "gently begin to return to the room and be aware of your surroundings,' the tears flowed freely. The experience was moving, emotional, and intense.
I had not expect something this "big" to happen so maybe that is why it did. Either way, I will not question it too deeply, but just enjoy having had the experience and know that I can go back there anytime I choose.
Saturday, November 21, 2015
Friday, November 20, 2015
I do appreciate all comments added to the posts, separate e-mails people send, and sometimes the in person hugs. In this case her compliments mean a lot to me if only because she is not only a wonderful person but a Librarian, avid reader, story teller herself and one of most articulate, intelligent, world traveled people I know. So "beauty" coming from her to me regarding my blog means a lot!
Her use of the term "Beauty of Grief" caused me to want to sit down and think, in writing, about what that means to me.
Grief | grēf | Noun. Deep sorrow, especially that caused by someone's death. Sorrow, misery, sadness, anguish, pain, distress, heartache, heartbreak, agony, torment, affliction, suffering, woe, desolation, dejections despair, mourning, bereavement, lamentation.
Actually, yes beauty. If one can allow oneself to see the beauty in grief and not just the loss. In loss there can be gratefulness as well, if one looks deep enough. Gregory has died. I am sad and at times my emotions resemble all the nouns listed above. But I also feel a sense of joy and yes beauty, when I allow myself to be grateful for the wonderful life he and I had together for 40 years.
I feel good that he was able to be mostly calm and accepting of his Dementia/ Alzheimer's diagnosis and that we, together, were able to make his life joyful and full as we compensated for the changes the disease gave us. I am grateful that we enjoyed each other and our condo and our sexy Audi convertible, and living in downtown Evanston.
Even with the diagnosis, we didn't lie down and die but rather hunkered down and kept going. We enjoyed cooking, entertaining, travel, theater, opera, family, and friends. For as long as he was able; he continued reading, doing crossword puzzles, taking walks, helping prepare meals, going shopping with me, helping around the house and with the pets. Slowly these abilities disappeared but he kept up the best he could and let them go with dignity while remaining content with what he was still able to do.
He trusted and deferred to me but more than that I trusted myself to take care of him when he needed it with regards to matters of home, health, finances, entertainment, etc. I didn't disrespect him by making decisions unilaterally or prematurely which would affect his life and his well being. Even though he usually let me take the lead, we continued to "operate" as a team in decision making. We continued to "fall in love" with each other more than ever.
The last phrase became one of our guideposts: MORE THAN EVER. It became the name of the More Than Ever Trust we established which would take care of him if I died or take care of both of us if I no longer could make decisions on our behalf. It protected both of us, with Power of Attorney of Health and Property and wills, in our "same sex relationship" when church, state, and national laws and opinions wouldn't.
The phrase was also used to name the education fund that we had talked about so many years ago but now were able to do something about. The More Than Ever Education Fund which will help provide scholarships for homeless youth and will be administrated by our long time charity friend, La Casa Norte.
I am grateful for his days at Lieberman Center which were spent with his usual grace and compassion for others. The care they gave him was superb and Manny, his private pay day care partner, was if not a Saint, a very highly placed Angel! Everyone on the staff at Lieberman and other residents and their families loved and enjoyed Gregory.
I was fortunate to be able to visit Gregory almost every day and we enjoyed those times fully with touching, talking, singing, fresh air, and sharing meals; musical concerts and other events in the Lieberman Community Room; and especially treating Gregory to his favorite cookies, chocolates, and rice puddings!
He died peacefully after four days of preparing himself to let go of this life and move on to his next adventure. Many of his friends were able to sit with him and help him to let go. Family who live far sent continuous prayers and love our way. He gave me one final kiss after being in a coma for three days and on the fourth day he slipped away. He didn't go out with a bang which would not have been his style. His death reflected his life: calm, simple, compassionate, and loving.
So BEAUTY? Yes BEAUTY! Gregory was a beautiful person, lived a beautiful life, shared his beautiful love with me and so many others, created beautiful friendships, designed and built beautiful homes and temples, and left much beauty behind in many ways for many others to continue to enjoy.
I miss him so much. Death is still one of the great mysteries of life. I am lonely, I am sad, but I am blessed. It was a good run, thanks Gregory!
P.S. I need to add some thoughts that people reading this blog may be thinking. Believe me, I have had some of them myself. Gregory's and my entire time of 12+ years dealing with Dementia/ Alzheimer's, let alone our 40+ years of being together, was not always beautiful.
Sometimes as we grew in our relationship, our earlier life was very difficult and at times our life with Dementia/ Alzheimer's seemed like the word CRAZY personified. Sometimes I was mean or impatient with him. Sometimes we did not resolve issues. Sometimes anger reigned. (Although we vowed and succeeded in never going to bed angry.)
Yes, there are things I would have done differently and yes, there are things I would still like to tell him. I apologized often and he always forgave. For the most part we did not leave too many things unsettled. I know that for a lot of people, and for me as well, we have regrets at missed opportunities or things not said.
How can there be beauty in that? Well maybe there can when the word forgiveness is added to the word beauty. Forgiveness of the other person and most importantly forgiveness of oneself.
I still talk to Gregory and believe that he is listening. No matter your believe system, if you want to believe something ... it can be true. So I believe that Gregory is listening to me, answering me sometimes, and watching me ... as well as watching over me. If I want to believe, and if this makes me feel better ... it is so!
Maybe you can do this as well. Sit down in a quiet place and talk to the person you love and tell them what you are thinking. Tell them what you are feeling. Tell them what you wished they had been able to give or say to you as well as what you wished you had been able to give or say to them.
There will be forgiveness and love shared, even if you feel it might be too late. But I believe that it is never too late to forgive and to love and to share ... and because I believe it ... it is true ... at least for me ... and maybe for you!
Wednesday, November 18, 2015
This often took more energy then I had and most often the family member or friend would agree, and then reiterate once more their idea on what I would be going through and what I should expect. “You are strong and have been dealing with this well. But one day it will hit you so be ready. You will grieve and loose it. It will not be easy. Be prepared.” Eventually, actually on short order, I just started saying, “Thank You” and leaving it at that. I didn't feel the need to explain, or educate, or council.
My own understanding of how I have been grieving is that I have been “HIT WITH IT” for over twelve years, especially during the last month Gregory was still at home, then hit hard with the realization for 18 months while Gregory was at Lieberman - even though he was well taken care of, and hit yet again during the four days he was preparing for his passage, and finally on the day that I sat with his empty body and held his hand and kissed his cooling mouth.
I have been processing and writing about Gregory and my journey with Dementia/Alzheimer’s for over five years on my blog of over 1,370 posts with 70,344 hits and this doesn't count the manuscript, consisting of over 300 pages, which I worked on before I began the blog.
I am often "HIT WITH IT" when I wish Gregory goodnight over my shoulder towards Grandma Carrie's sewing box where his ashes reside, when I find the need to cry myself to sleep, and when I feel the need to cry myself awake.
Grief does not happen all the time but when it arrives, I welcome the emotions and sit with them. Sometimes if I do not have the energy to cope, I welcome the emotions and thank them. I ask them to come back another time when I am feeling stronger. I do this out-loud. It seems to work and they leave me alone for the time being.
It happens when I write my blog as I process ideas, emotions, and experiences.
So I wonder to myself, "Either I am doing a wonderful job of grieving or I am doing a good job of hiding my emotions." I think that the former is true and not the latter. I think that I have been grieving for 12+ years, just to various degrees and with various triggers.
People say, "I am so sorry for your loss." And I say "Thank You." What I want to say is, "Thank you, but I have gained more than I have lost. I am NOT sorry, I am SAD but not SORRY! I am HAPPY, maybe even JOYFUL that especially Gregory, but also I, am no longer having to live in a Ménage à Trois with Alzheimer's being the dominant uninvited partner.
(Written July 4, 2012)
It came on unexpectedly and quickly.
Hospice expected him to leave that day or the next.
But he slowed it down, I believe, to allow me time to process as well.
He was unresponsive but most likely he knew I was there.
He most likely knew I was talking to him and loving him,
While I touched, stroked, and petted him.
So I did not feel the need to keep an overnight vigil.
He probably needed the time to himself to continue his preparations.
He was that kind of a private, compassionate (compassionate even with himself) person.
In the third day of his coma, he relied his energy and gave me one last kiss goodbye.
He was able to leave his body without anguish or pain.
He did so in the calm manner that reflected who he was his entire life.
I celebrate him more than I grief for him and I continue to love him.
MORE THAN EVER!
Tuesday, November 17, 2015
The ten session class was scheduled to run through the holiday season beginning two weeks before Thanksgiving and ending after the New Year. Corinne did it this way because for people dealing with grief and loss, the holidays are most often a very difficult time.
The first session consisted of sharing a little about why each of us were there, Yoga stretching and movement, focus on breathing, and a thirty minute guided meditation.
The energy in the room was heavy as people shared their reasons for signing up for the series and what they hoped to gain by attending. The the sense of community began to build almost immediately and as we moved into the Yoga and Meditation, I could almost sense, if only a tiny bit, the beginnings of healing for many of us there or at least leaving the grief behind for a brief period of time.
When asked to establish an intention for the session's practice, I looked into myself and came up with, "You need to re-establish you connection to JOY!" When I spent time at Lieberman visiting Gregory and the other residents I always felt so much joy at my ability to bring joy to others.
I felt joy helping a resident put the cloth napkin around their neck or getting them another glass of juice or helping to cut up the food into bite size pieces. I felt joy at providing treats of chocolate, licorice, cookies, and more to Gregory and to the staff who dropped by his room to help or just to say "Hi" and grab a mini Butterfinger or Babe Ruth.
I felt joy during the resident's arts and crafts activities or the sing-alongs or the rhythm bands. I felt joy kissing Gregory or telling Martha, "I love you!" with her giggling and saying "You probably tell that to all the girls!" I felt joy clapping along to the Sunday Concert performers or helping to pass out cookies and juice to the attendees.
While I still feel joy in my daily life, the dosage is not large enough. So I need to think about how I can put more back into my life. Thank you Corinne. See you next session!
Saturday, November 14, 2015
By: Kate Swaffer
Remember when the time comes
To breath in very deep
Take my very last breath
And make it your own
This poem was written by my blogger friend from Australia in her book of poetry Love, Life, Loss: A Roller-Coaster of Poetry. Of all her wonderful poetry, this poem moved me the most when I read it several months before Gregory died.
The day before he died, after three days of his being in a non-responsive state, I kissed him three times on his open mouth and on the third kiss, he kissed me back.
A short while after he died the next day at 12:04 on Sunday, October 4, 2015, I sat with his beautiful body and told him everything I needed to say. I held his still warm hand. Before leaving, I kissed his open, cold mouth and I breathed as deeply as I could.
He smelled of the sweet Gregory I have loved for forty years and will love for the rest of my life. He has been, is, and will always be part of me in so many ways.
His ashes sit in his Grandma Carrie's sewing box which lives on my bedroom bookcase and his breath lives within me.
-Gregory no longer has to live with Alzheimer's.
-I no longer have to live with Alzheimer's.
-Gregory died peacefully.
-Gregory never became non-responsive until his last four days.
-Gregory was able to let go of life in four short days.
-Medicaid was approved in three short weeks.
-we were able to find our condo where Gregory enjoyed living in downtown Evanston for close to five years.
-I continue to enjoy calling the 807 Davis Street condo my (our) home.
-Gregory didn't seem to be in physical pain for most of his 12 years with dementia.
-Gregory was in good health.
-Ernie was able to help Gregory reconnect with his body during massage sessions.
-so many people were loyal to Gregory and visited as often as they were able.
-Gregory remembered who I was until the end.
-Gregory never forgot my name.
-Gregory continued to enjoy his chocolates.
-Gregory was able to enjoy music.
-Gregory and Manny developed a loving relationship.
-Manny appeared in our life to support Gregory.
-we were able to afford Manny's services for close to two years.
-Gregory enjoyed his three square meals a day.
-Gregory stayed on his "regular" diet and didn't have to move to "mechanical" or "puree" food.
-Gregory still enjoyed watching TV.
-Gregory's spirit and soul always seemed to be present.
-Gregory rarely got angry.
-Gregory said he was happy at Lieberman.
-everybody at Lieberman loved Gregory and paid him a lot of attention.
-we were able to travel to Italy, Spain, France, Mexico and around the U.S. after Gregory's diagnosis.
-we had a loving support group in family and friends.
-the Lieberman Center provided such good care for Gregory.
-Midwest Hospice and Gita and Elisabeth provided such good care for Gregory.
-the doctors, nurses, CNAs, and staff at Lieberman provided such good care for Gregory.
-we found each other and instantly fell in love 40+ years ago.
Friday, November 13, 2015
I'm not sure you will remember me, BUT... Gary and I were your guests for dinner one wonderful evening years ago. We were Greg's clients. Strange, but I have been thinking about both of you lately. So much so that I just searched Greg on my computer.
Imagine my surprise and sadness when I read that he passed away only weeks ago. I am so so sorry for your loss. He was such a gentleman, incredibly talented and delightful.
May all of your beautiful memories be a source of comfort. Please know that we share your grief. We will certainly make a donation on Greg's behalf.
Wednesday, November 11, 2015
When Gregory and I moved into the condo this was our dining room table but for the most part we ate on the stools at the kitchen counter.
When we entertained, we would set the table as it sat against the wall and when dinner was announced, we would pull the table out from the wall. Easy peezy.
On a daily basis, Gregory used the table as his "office" and mine was in the bedroom. Slowly his table became a place for his collections as well. (I think he began collecting in response to and in deference to my collecting, which as you know is monumental!)
When we had more than four people to dinner, we started not wanting to clean off the table of all the collections. So we would leave it against the wall, sit four on the front facing the wall, and his collections) and one on each side. The table is large enough to easily accommodate six people in this way.
Finally, hate to admit it, we stopped entertaining more than four to sit down dinners. Too much trouble. If we were having more than four, we would do buffet which was much easier considering the ample counter space on the kitchen island and the wall counter behind.
When Gregory moved to The Lieberman Center, I made the Library Table my "high touch" place to read, be creative, etc with my "high tech" place still in the bedroom with computer, files, etc.
Over time, the Library Table has become a dust collecting collection collection. I wanted to make better use of it so have decided to move my computer out here, minimize my need for filing baskets, pen holders, messiness etc.
I plan on replacing my 9 year old computer with a new iMac 27" and the new 27" will not fit into the bedroom computer cabinet. Thus my "high tech" office joins forces with my "high touch" Library Table!
Everything will be stored in the filing cabinet end table next to the space. Supplies etc will be stored in my closet. Printing will be wireless as will backup and internet, so I hope to minimize equipment, cords, and electrical wires.
In the bedroom, in place of where the computer used to live, I am going to put a tall bookcase (never enough room for books) and create a reading corner with a comfortable chair, side table, and lamp.
When everything is in place, I'll add some photos. Meanwhile, I think I am going to love the new arrangement. As Pee Wee Herman says, "Then why don't you marry it?"
Tuesday, November 10, 2015
Click here to read article. Opens in a new window.
Sunday, November 8, 2015
Saturday, November 7, 2015
This is my paraphrasing of what Sharon went through when someone she cared deeply for was dying. It reflects what I slowly learned during the twelve years Gregory and I walked the Dementia// Alzheimer's path. It reflects what I finally knew to be true and held my faith in during the four days during which Gregory was preparing to die.
If we absolutely insist that things work out only as we want them to, our hopes become strategies to avoid facing what is, then we have nothing on which to base either effective action or real peace of mind. We're in the hope/fear dilemma.
What one really wants is that the person dying not feel alone, that he feel sheltered and held, that benevolence surrounds him, that he feel loved. This has nothing to do with demanding a specific outcome.
The person is going into the unknown, into a realm none of us can control. That is hard to accept. We cannot go there with him and we cannot really find out what that realm is all about. We feel fear for the person and we feel fear for ourselves.
When one sits side by side with fear and acknowledges it, one can befriend oneself despite the fear and one's heart begins to open.
One is able to meet the unknown without a plan for controlling something that is not within one's power to control. With fear no longer dominating the mind, love can rise freely.
The power of love doesn't shatter in the face of change or disintigrate in the face of ones's own terror of lack of control. One is able to enter into the mystery.
One can hold onto one's faith in oneself, and faith in the person leaving. Faith allows one to relax into the vast space of not knowing.
One feels sorrow but one remembers that life is bigger than its constantly, sometimes drastically, changing circumstances. This is the power of letting go in the face of unexpected changes and doing so with love and peace of mind.
Faith enables us, despite our fear, to get as close as possible to the truth of the present moment, so that we can offer our hearts fully to it, with integrity.
We might hope and plan and arrange and try, but faith enables us to be fully engaged while also realizing that we are not in control, and that no strategy can ever put us in control, of the unfolding of events.
Faith gives us a willingness to engage life, which means the unknown, and not to shrink back from it.
To have courage, just as to have faith, is to be full of heart. With courage we openly acknowledge what we can't control, make wise choices about what we can affect, and move forward into the uncultivated terrain of the next moment.
Experiencing Gregory's death with faith instead of fear meant experiencing him fully as he was and as he continued to change and when he finally left me. It meant that even though there was little I could do, I could continue loving him and to stay connected to him.
For many years I continued to love him in ways not based on language skills, mobility, or even his staying alive. The closeness, the understanding, the devotion of love did not diminish in my letting go of expectations.
By revealing the grace of connection with qualifications, no matter what is happening, love releases us from our efforts to control life and strengthens our ability to just love and to be loved.
Here is a quote from her book:
"... I was asked, "'Why do we love people?' I answered, 'Because they recognize us.' I think this is true. When someone recognizes a basic goodness within us, beyond our habits and conditioning, when someone recognizes who we fundamentally are, it is the most important thing that can happen to us, and we respond with great love."
Gregory did this for me. He not only encouraged me to be myself but he encouraged me to be more of who I was!
Friday, November 6, 2015
Click here to see the Windy City Times Obit for Gregory
Kate, Kate, Kate,
Not easy. Your post's ending shows you still have your sense of humor. Very important to keep that:-)
I personally believe, based on my observations of Gregory and on my own aging brain and memory (although I do not believe that I am experiencing Dementia but did notice more forgetting begin since I was 40 - thirty years ago,) that when I fight the loss of memory, fight the inability to recall pieces of information, am under a lot of stress, or am tired ... it gets worse. When I relax and release it, I have an easier time. So differentiating between your public self and the ability to relax at home is good.
Since both Gregory and I were 40, we invented what we called, "The Noun Disease." When we had trouble recalling a proper noun or someone's name we just announced "NOUN" and keep on with the sentence. Sometimes it would come later, sometimes the other person would substitute the noun, and sometimes it didn't matter.
In many ways there is so much of my past that I do not (or have chosen not to) remember. For the most part that doesn't matter. I am not trying to compare myself to you but in some ways there are similarities to "getting older" and "having dementia." We both know which one we would choose if we could.
Hang in there (as I picture that famous poster of the cat hanging from the window sill by its toenails!)
Thursday, November 5, 2015
LOVE LIFTS US UP...
This is about our experience in dealing with a diagnosis of dementia and the impact this dreadful disease has had on our relationship. I, Edie, was aged 59 when diagnosed with Younger Onset Dementia, Alzheimer's Disease five years ago this month.
My partner, Anne, noticed worrying signs and changes in me from 2005. I rely on her memory to be able to give you an accurate picture of the last 10 years. She says I started withdrawing to the study after dinner and spent hours at the computer playing computer games. Initially she thought I was doing paperwork for my business as a Driving Instructor but she eventually worked out I was playing Hearts. I stopped sitting and relaxing with Anne in the evenings as we'd always done and would only watch sports programs on TV. Previously we'd watch several programs together on Aunty or SBS.
I was becoming more and more negative. I didn't particularly want to socialise, especially when there were more than a few people. I told Anne some time later that I couldn't follow group conversations and didn't want to repeat myself. Anne says I used to get defensive or angry if she tried to talk to me about changes she observed. If she came into the study I used to shut down the computer so she wouldn't see what I was doing. We had developed strong and healthy communication over our years together. We were both committed to resolving misunderstandings and differences and working through issues which arise in relationships. We had no secrets. We had no need for them.
But now I was no longer able to put into words what was going on for me; I didn't want to think about what was going on in my head let alone my life. I didn't tell Anne that I was forgetting where to pick up clients from for their driving lesson and that I was going to the wrong house. My memory had been one of my strongest assets. My attention to detail and ability to remember dates, addresses etc was well known. We were stopped by a police officer for a licence check one night and I didn't have my driver's licence with me. But when I told the officer my driving licence number, he shook his head and waved us on.
I was progressively cutting off from myself, my thoughts, my feelings and Anne. In addition to increasingly disengaging, I was becoming more forgetful, easily frustrated, lethargic, defensive and negative, particularly at night. I'd get angry with Anne sometimes and stomp out of our bed into another room. I'd accuse her of saying and doing things I'd thought she'd said or done. Of course I'd forget about moving beds and getting angry and would make excuses about not wanting to spoil her nights sleep. I was in a bad place. Fortunately I don't have any memory of this time, because if I did I'm certain it would have been the most depressing, frightening and isolated time of my life.
Apparently we'd arrange to meet for lunch and I wouldn't turn up and I'd forget about arrangements which had been made to catch up with friends. Remembering events and dates and organising myself was becoming more and more difficult. I was increasingly leaving more to Anne to arrange holidays, shop, cook, and clean. We went on safari to the Kruger National Park in 2007, and to Vienna, Prague, Croatia and Norway in 2008. Unlike all previous travel, I didn't get involved in any of the organising, despite Anne's attempts to engage me in the process. I was very keen to travel of course, as we had travelled far and wide over the years. Twice at airports during this period when Anne went to the toilet, I went off looking for her and she found me wandering in a distressed state. I stopped contacting friends and initiating outings. I was leaving for work earlier and earlier.
Neither of us handled this period of our lives before diagnosis very well. I was blocking out everything and everyone, refusing to admit there was a problem and unwilling to share my fears, vulnerability and grief. Anne was getting increasingly concerned, frustrated and impatient with me. We were in unchartered waters withdrawing from each other as a way of trying to manage the situation. It was the worst time of our lives.
When I was having a knee replacement in 2008, our bank rang and told Anne we were two months behind in credit card payments and that a third payment was almost due. I had always been an exemplary bookkeeper and financial manager and Anne had left all financial matters in my capable hands. But when she found a mountain of unattended bills and a very late BAS statement she reluctantly inherited my role. I used to sit at the desk with those stupid, unpaid bills every weeknight and yet still managed to ignore them. When I think about that now, that was quite an achievement!
I had many serious falls from 2006-2009. The last one was when we away with family and I tripped, fell and shattered my patella. Fortunately the knee replacement I'd had four months earlier wasn't damaged. After it was wired we went on a planned holiday to North Queensland with friends. Although all this unfathomable stuff was going on and I was in a full leg brace and totally dependent for six weeks, we never at any point actually gave up on life or stopped wanting to be together. Although we were both depressed at the time, we are so grateful that in our darkest times, and there were many, our love for each other, though truly tested, remained steadfast and enabled each of us to go on.
Anne persisted in trying to get me to see our GP for two years. I finally agreed early in 2009. When I came home Anne asked me what the doctor said and I told her she said there was nothing wrong. I don't even know whether I actually went to see the GP, or if I did whether I'd forgotten to tell her why I was there. Anne insisted we'd go back together. My memory problems were finally getting addressed and I could start to believe that maybe we could get through this terrible time.
I underwent a comprehensive neuropsychological assessment over several weeks followed by appointments with other specialists. We now attended all appointments together and I was no longer feeling frightened or isolated. Our open and honest communication returned.
Anne had already decided in 2009 that she needed to either work at home or retire. She was concerned about safety issues so I came up with a master-plan to create a separate entrance, hallway and toilet at the rear of the house and convert the study into a practice room. It enabled Anne to continue to work for a further 3 ½ years in an environment which worked really well for everyone. I now knew that I still had something to offer and I wanted to take some pressure off Anne. I was no longer disengaged.
After the neuropsychological review in mid 2010 the neuropsychologist wanted to come to our home to give us the feedback. He said that significant deterioration had occurred in the 12 months, particularly in new learning and memory and indicated the likelihood of Alzheimer's.
We sat silently in the lounge room for a long time after he left, feeling appreciative for the thoughtful, caring way we were informed but numbed by the news as well. Eventually we stood up and cried in each other's arms for a long time. The silent presence in the room was the previous experience we had with Alzheimer's; Anne's mother had died in 2005 after living with Alzheimer's for more than 20 years. We had moved from Melbourne 23 years earlier to assist her father in her care and Anne became her primary carer after her father died in 2002. We knew a great deal about dementia.
The thought of Anne having to face this dreaded disease again had paralysed me and it was the main reason I shut down for so long and had so much difficulty in facing the situation and talking to Anne about it. My motto must have been “If a thought is unbearable, it's best not to think it and it'll go away”. It didn't work, because my denial and avoidance made our lives much more difficult than they needed to be. Anne says having a partner with dementia is a very different experience to having a parent with dementia. I must have felt guilty that I was going to be a burden for Anne, I didn't understand at the time that there was nothing for me to feel guilty about, and Anne had to overcome her reluctance to take command of the situation and not rely on me to make good decisions.
A specialist neuropsychiatrist in Younger Onset Dementia confirmed Alzheimer's in September, 2010 after a PET scan and a review of the earlier MRI. We now knew what we were dealing with; there was relief in that and a growing belief that we could launch ourselves to a better place, in time. It had been more than five years since Anne had first expressed her concerns to me.
The first two years were a maelstrom. I had to retire from the work I loved; we had to sell my car and try to sell the business. There was a succession of new people entering our lives, local, state and federal bureaucracy, financial institutions, lawyers and organisations and agencies which support people with Dementia. The required form filling was unbelievable but thankfully Younger Onset Key Workers assist newly diagnosed families through the process now.
We became actively involved in the Younger Onset Dementia world by participating in the three day Alzheimer's Australia “Living with Memory Loss” program. It was a great experience for us and helped establish a small, local community of care and support with people in a similar position. I joined Alzheimer's Australia Victoria Reference Group and Alzheimer's Australia National Advisory Committee. I'd been on committees throughout my work life. A whole new world was opening up for me again and I was now beginning to feel more positive.
We also commenced major renovations to our home which were completed within two years of my diagnosis. It was stressful and inconvenient, especially when we didn't have a kitchen, and then a bathroom, but it was worth it as it has made our lives simpler, easier and more comfortable. We also have a beautiful garden and a gorgeous 14 year old dog called Shinji. We have lived where we live for 16 years and we both love our home and its location, and we plan on staying there for as long as possible.
We'd be the first to acknowledge there are no short-cuts to truly accepting such significant change to our life circumstances, and that we didn't handle things as well in the first couple of years as we do now. Anne told me, I once said to her “I may as well be dead”. I can't imagine ever thinking or saying that now. Good communication between us is the key to where we are today as well as the support of significant others. We gradually learned to accept then embrace our new reality and the changes that happen along the way.
We both had to learn to manage our feelings in these new circumstances. When I was being fractious Anne had to learn not to react. We both had to learn to accept our limitations and not have unreasonable expectations of ourselves or each other. We both had to face the awful grief, terrible sense of loss and fear of the unknown that comes with truly facing a new reality. We had to accept that the future we'd planned, of travel and retirement and long, lazy lunches with friends were not to be. But in facing the truth together it became possible to accept it and this brought with it a serenity and even deeper love and respect. We gradually became more relaxed, contented and good humoured.
For five years now, since diagnosis, we have seen each other grow to a place of acceptance, contentment and peace. It's not devoid of frustration and stress for Anne, I know, but negative feelings soon subside because that's not what we want our lives to be. I used to be so hard on myself, but I'm not now. We choose to be on the side of life and we are grateful for what we have, and that helps us deal with our reality.
There is no doubt that dementia is disabling, challenging and life changing, but there is much more to the story than that. I choose not to allow dementia to dictate my thoughts and feelings. I prefer to think about my capacities rather than what I've lost. I have this moment in time and that's enough. And for us, dementia has actually strengthened our relationship, brought us even closer and given us opportunities and experiences we otherwise wouldn't have had. Love is at the centre of my life now.
Peace and calm descended on our household towards the end of 2012 and it continues. Anne retired in June last year and that has made life even better for both of us. We enjoy spending time together, but we also have our structure and routines that give us time apart. I so look forward to the end of the day when we're together again. We have been fortunate to travel to China, Botswana and Vietnam since my diagnosis. We may not travel overseas again, but that really doesn't matter. Dementia forces the end of some things, not all things, but it also opens us up to new things as well.
We acknowledge the importance of others in our dementia journey, people we've met through Alzheimer's Australia, Younger Onset Dementia community, couples and individuals who are in the same position as ourselves, and staff who support people with dementia; special family members and friends who stay connected as well as professionals who assist us along the way. We appreciate you and thank you for your help and encouragement.
My relationship with Anne is a very loving, positive and enjoyable partnership. We have known each other for most of our adult lives and been in a relationship for just over 31 years. We've had the most amazing life together.
We all know there is so much more to sexuality than sex. We're more playful and appreciative of each other. We embrace, cuddle and hold hands more, although we've always been very tactile. There is more tenderness, thoughtfulness, care and respect. We know we both want to be the best we can for each other. I am always telling Anne, “I love you with all my heart.” I write it on her back in bed at night and on any part I can find during the day. I have never loved her more, nor have I ever felt as loved by her. I don't remember a lot, but I know that the most important thing to me is our deep love for each other. What else could I possibly need?
I can honestly say I have never felt more contented in my life. I don't feel pressure, anger, frustration, fear or regret at all. I don't have bad memories. We are here for each other. We feel blessed. I often find myself looking at Anne and I'm overwhelmed and bursting with feelings of love and gratitude. And I just have to tell her, again and again, how much I love her.
I believe our intimacy has enabled both of us to experience deep personal and spiritual growth and healing. Together we are more than two. I describe us as “Team formidable”.
Recently Anne and I were having a conversation about the many good things which have happened to us and the many amazing people we have met since dementia has entered our lives. Actually Anne was doing all the talking, about dementia being transformational and giving us opportunities to grow and so on and so forth. I said, “Our hearts are bigger”. After a couple of minutes, Anne closed her mouth, shook her head, and said “Edie, you've just said in four words what I was trying to say in 100. That is the most profound and beautiful thing you have ever said”.
Our wish is, whatever your connection to dementia, we hope it makes your heart bigger too.