Giving Thanks and Realities

We have just finished our Thanksgiving holiday with family. I was in Salt Lake for a week before the holiday to baby sit my five grandchildren while their parents took a well-deserved vacation. My stepson flew over from Prescott to spend the week with his father while I took my "respite". The children are all in school full time now and aside from the busy mornings of preparing breakfasts, getting them off to school on time and the chaos of coming home from school, hungry, homework laden, figuring out who needs to be at soccer practice, singing lessons, church activities, etc, the days were filled with solitude and lots of time for reflection.

While I enjoyed those silent hours, my connection to my husband and concerns about his well being were strong and ever present. Which leads to the question....does one ever really have a respite, relief from this disease and the care giving involved?

I flew home just before the holiday to prepare for my family to visit for Thanksgiving. I had a houseful as usual and enjoyed the chaos and cacophony of children playing and swimming in the pool and family engaged in conversation. All the while, observing my husband retreating, silently trying to follow all the activity, hiding his confusion and his disease as best as he could. He managed with wonderful patience to play pool with the kids, teaching them how to put "english" on the ball. Some of his skills are not forgotten. I was proud of him.

We had our family holiday and everyone left. The house is empty and I had the usual letdown. I started to think about Thanksgiving and how much work it had been and how tired I was and given the current circumstances with portfolios tanking, my husband's illness and the bleak future we face, I wondered what this Thanksgiving really meant, not only to us but to a whole nation.

This is what I concluded after my small "pity party". First of all, when I look into my husband's eyes and his warm and totally open response to my love and affection and his "I love you", I am thankful that despite the effects of his disease, he has not lost his ability to show his love. It has changed him, it has made him gentler, softer, kinder and open to love in the most basic way.

I am also grateful that I am able to be with my family at this time of year and connect with my extended family and know that they are all doing well despite the economic crisis. My house is empty but my heart is full. I didn't take one picture the whole time of their visit but I have memories of my six year old granddaughter jumping into the pool with wild abandon and swimming to the side as she learned to do this time around. I watched as my grown sons teased each other as they played video games like two little boys. I have memories of my daughter-in-law Hannah, making homemade dinner rolls with her little niece. I enjoyed shopping with the "girls" at the mall. My granddaughter must have tried on every pair of jeans in the store before settling on the perfect pair.

While the realities of our own struggles do not disappear in a day or a week or even a year, it seems important to me to consider the currency of love and family and the blessings of the moment. Nothing but our own resolve can get us through tough times and even now as I face an uncertain future with all its concerns, I remind myself that we cannot change the past and all we can do is live the moments that are given to us in the best way possible.

Mr. Fix-it

My dear husband has many attributes, clever businessman, quick wit, great golfer, even tempered and a wonderful friend and lover. However, there remains a skill that he has never quite mastered and now with Alzheimer's slowly robbing him of certain basic skills it has gotten worse....his ability to fix things.

This is not to say that he doesn't attempt to fix something, he does with great determination. The joke used to be....if anything needs repair, do not under any circumstances tell George. Plumbers, electricians would be called in secret before he would find out about the broken faucet or burned out outlet. Sometimes, they would be called in to repair his repairs.

Now fear strikes in my heart when I hear him say...."honey, I fixed it". Last night, as he was cleaning up after dinner (which he does lovingly for me) he came to me holding the sink faucet in hand. As he observed my look of horror, he reassured me...he would fix it. Not knowing how he managed to pull the faucet out of its place...."it came off in my hands" I tried to figure out the parts and pieces as we tried in vain to put it all back together. There were a couple of extra parts that didn't seem to fit.

Now I can pretty much figure out how things are put together, having had to be the one to read assembly instructions to my mate as we tag teamed in assembling various complicated storage units, kids toys and the like. But here I had some rubber parts that didn't look to be a part of this unit. He kept trying to fit the round pegs in the square hole. I kept asking again and again, where did you get this part? His confusion and distress kept getting worse. I looked around and discovered where he had gotten the extra parts....from the sink drain. I surmised that he had taken the drain apart in order to fix the faucet. I started to laugh. My Mister Fix-it was at it again.

The plumber has been called.

We, his family, call him the "duct tape king", which is his tool of choice. I have now hidden all the duct tape from him...sometimes it is a matter of survival.

Creating Space

One of the most difficult aspects of living with an Alzheimer's patient, particularly a spouse is defining anew the concept of space. My husband and I, from the beginning of our marriage, were two independent people who created our own spaces in our lives and our home. While being interdependent on one another, we respected our separateness allowing us to come together with renewed and ongoing interest in each other's lives. He developed an interest in art galleries, theatre, and movies (my world). I took up golf and learned to appreciate and enjoy Jazz music(his world). While he played golf with his cronies, I went on art related excursions with my friends. We both enjoy the theatre and our weekly movie date has been a tradition that we started early in our marriage and still enjoy doing. Our yearly trip to Carmel is where we share the common joy of exploring the art galleries, the Monterey Jazz Festival, and an occasional round of golf.

But as I said before, my space, his space is no longer separate, definable...it is our space. We are connected "at the hip" as they say. He cannot function independently very well now without me. He is still able to perform all the normal functions of daily living...he seems strong, fully cognizant, able to have conversations with a rational exchange of ideas....however, he seems to need me to be present at each moment. I am told that this is a normal symptom at this stage of this disease. He seems insecure, fearful, clinging at times. I go to my art class. "When will you return? What time? Will you stop anywhere else?" I try and reassure him. When I am upstairs in my studio, I know he will come up in a few minutes and ask, "What are you doing? When will you come downstairs? How long will you be?"

We go on walks together and he holds my hand tightly, afraid to let go. He now shadows me in the grocery store, when before he would go off and come back with some new item he wanted to try. At the book store where we would lose each other for hours exploring our own interests in books, he now just follows me, closely. I know his fear is losing track of where I am and getting lost.

My vital, independent, adventurer is now a fearful child. I am accustomed to this behavior in my small grandchildren but not in my husband. I steal small moments of privacy, when he naps or is distracted. I have moved my drafting table to the family room so that I can paint while he watches television. I am now trying to create a world, a space that comforts him as well as allowing me to enjoy the time we have together without losing my own space.

Profiles in Courage

I am constantly amazed at the strength of the human spirit in the face of terrible events and unexpected crises. Most of us have witnessed this in past and current events and up close and personal some time in our own lives as I have. My admiration and respect for those people in my life is beyond measure.

My husband never ceases to amaze me. He has faced tremendous challenges in his life with dignity, courage and a philosophical attitude that I try to understand and let it inspire me. He lost his first wife and his oldest daughter to cancer. He has had his own bout with cancer and a quadruple heart bypass and now the diagnosis of Alzheimer's disease. I have never heard this man say "Why me?" I have never heard anger or bitterness from him. Of course, he has shed tears at the losses in his life, he has worried about the consequences of the illnesses he has faced and the disease he now battles but he remains constant in his calm acceptance of what life brings.

My sister is my best friend, my surrogate mom, and mentor. She faced breast cancer years ago at a time when she was completing her studies for her Master's in Education. She had a radical mastectomy and underwent chemotherapy while still attending school and working full time as an elementary school teacher. In class she would sit as close to the door as possible so she would have quick access to the bathroom in the event she had nausea caused by her chemo. She got her Master's degree and is a 25 year cancer survivor. She continues to provide wonderful nurturing service to others. Although, she retired after 36 years of teaching, she remains dedicated to the education of children as a volunteer and advocate. Her husband, ironically, also has Alzheimer's. She faces all of this with an unending unshakeable faith and optimism.

And there is Pam...our daughter. No, she was not my biological child. I did not carry her in my womb but I carry her and will always carry her in my heart. She was her father's child, smart, glib, a wonderful sense of humor and a life force to be reckoned with. She lived a year after her diagnosis of stage 4 colon cancer but what a year. Two months after surgery that removed 3/4 of her colon, she went on a 24 mile hike with friends in the High Sierras, she completed her oral examination for her PHD in clinical psychology and she courageously did Disneyland with me and the grandchildren that summer. She bought the car of her dreams and drove it with delight. We laughed and enjoyed the days. As she was undergoing chemotherapy, she would go in for her session wearing gorilla feet or martian ears telling her doctor that she was having curious side effects from her chemo. Every visit was an event and curiosity as to what her imagination would produce. On one of her final visits, she brought a lifesize "Creature from the Black Lagoon" to the doctor's office and covered it with a sheet and said she had finally succumbed to the total effects of the chemo. She fought to live till the very day she died. Her energy and spirit still permeates our home, our lives.

I am sure there are numerous stories out there of similar kind. These are mine. I carry them with love.

Finding Middle Ground

I really believe that the early stages of this disease are the most difficult.

When George was diagnosed, I went to work reading everything I could, preparing myself for the future. When the going gets tough, the tough get going. I was determined that we were going to be optimistic and face this head on. With expert medical care and "superwoman" in his corner, my husband was going to be alright for a long time and I....great wife that I am..would be there to hold his hand and lovingly go with him into the sunset. Denial is a wonderful thing, isn't it?

Well, as I am sure others have experienced, I learned quickly that Alzheimer's is not a predictable disease in terms of its progression or pathology. George has been a "normal" healthy functioning individual this past year. Some small "brain fades", every now and then, but only noticeable to me. He was forgetful and to all who interact with him, considering his age, this seemed understandable. But slowly, the obvious memory dysfunction started to show. His inability to read a calendar, unloading the dishwasher of dirty dishes, not knowing how to turn on the microwave, etc. The other day I found him pouring over the manual of his car because he couldn't find the fuel gauge on the display near the odometer. Small lapses of confusion....nothing big but enough, just enough to put our otherwise perfect world off balance. I see him every day...we talk...we share our moments and life seems normal...and I get sucked into believing it is in check, it is in remission. And I absentmindedly ask him to be my partner....put the dishes away, water the plants.....do the same mundane tasks that he has done in the past...without a thought, with skill, with efficiency. He asks me....again and again...with confusion and I lose patience...I answer with annoyance and then I see his face, his wounded and fearful expression , and like a sudden blast of cold water, I am aware of where we are today and the fear, the reality, the guilt and the sadness wash over me. It is like a chess game I play with this disease. A good day for me, for us. And when our guard is down....a bad day...something happens and we are back at altering "the plan". Trying to determine what he can do and cannot do. How much do I step in and take over without destroying his self confidence, his independence. Trying to find a middle ground.

The journey begins

It's been a year since my husband, George, has been diagnosed with early stage Alzheimer's Disease. It has been a good year. Yes...it has. Sounds crazy but let me explain. Having retired about two years ago, I had envisioned the fairy tale retirement, travel, playing golf together, doing all the things you see in the brochures that espouse "the golden years". Life happens and I have learned that you cannot plan your life, but you can be prepared.



We have learned a lot about this terrible disease and we have learned a lot about ourselves in the process. We have learned patience, determination, and above all, living in the moment. With Alzheimer's, the moments are unpredictable, sometimes heartbreaking, sometimes frustrating, sometimes funny and sometimes wonderful connections of love. He is getting the best of medical care from a team of doctors who work in tandem with us. As a result, he is for the moment doing exceptionally well. I am not naive to think he will be cured. But I am hopeful about the many ongoing clinical trials and new medications that are on the horizon. I do and continue to do extensive research on Alzheimer's and I will share what I know. But most of all, I will share our journey with you.