What experience qualifies as a setback? July 26, 2015

I've been doing a lot of walking in the city this past week. The weather has been glorius and my                    thoughts have been inward. I am not much interested in my surroundings yet. I came across this sign in a store window and I took this photo. 

Perhaps my husband's death is one of these setbacks that I will be fine if I learn how to "handle " it. As a caregiver for my husband who was diagnosed with Alzheimer's disease nine years ago, I thought I had done my mourning. The terrible wrentching grief experience his dying evoked in me, I understood and I feel that is ebbing, slowly. I still tear up on occasion. At times it is totally unexpected.

Many of my reactions this week are completely surprising to me. I think about my husband so often now, not as he was when he was ill, but before. I want to share with him how our neighborhood here in Manhattan has changed. My first thought when reading a menu is what my spouse would have ordered and enjoyed.

But this is not a "setback." A setback occurs when the progress of something is interrupted, a roadblock is put in our path and we need to figure out how to get around it.

It is not a "crossroads" either. A crossroads exisits when there are choices and we are choosing one and letting another choice go. My husband's death was not unexpeced. We only didn't know precisely when it would occur. Alzheimer's disease is chronic, but no one ever recovers from it.

So my discomfort is about me. I am not unlike the young mother who cries when her child gets on the schoolbus for the first time. My feelings are similar to those experienced by folks who return to civilian life from a war zone. A very important, scary all-consuming part of my life is over and I don't know what is next.

Widowhood July 15, 2015

I've never been a widow before. I've worn many identities however. I was an only child for four years which was a great privilege as my parents and my aunt Lisa and Uncle Willi doted on me, as did my teenaged cousins, Murray, Walter and Saully. After the war, I was fortunate to be a granddaughter to my three grandparents who survived the Holocaust. I became an older sister, twice, an identitiy I only practiced actively until I married young and became a wife and mother of three.

I've always been a student, then a teacher, a PTA president and then a member of a school-based support  team and a psychologist. My longest past role was as a daughter to my mother who fortunately for me, lived until I was 62. I am still a long distance sister, aunt,  great aunt and cousin.

In between I morphed with the century from being "one of the girls" to becoming an independent woman. I became  a divorcee and a single parent and a caring friend. I became a lover and married a man who was the love of my life. My daughter married and I became a mother-in-law, then a grandmother. Fifteen years later I became a long term caregiver to my husband who developed Alzheimer's disease and I became a writer and a public speaker. Two weeks ago I was handed this new role.

Every other role added joy to my life and people to love and to care for; this one took away. Every other role added responsibility and purpose to my life; this one does not. Every other role came with expectations, parameters, goals to work toward. This one looks back.

After a time of looking back, I will look forward again. I will complete the manuscript for the third book aptly titled "I Want to Go Home." It will tell our story and those of others I have met whose loved ones were placed in residential settings. it will help people choose residences by providing more options for loved ones with different presenting problems--and tell funny stories as well. Although our loved ones cannot remember or create new memories, their families can and they shared their stories with me and with my son Steve.

I am so lucky this is not my only role.I will honor it and my husband's memory and I will devote myself to wearing my other hats proudly. Who knows what new identities will be added to this list?

Grieving July 10, 2015

Grieving is a visceral experience. It bypasses the intellect completely and results in a torrential release of liquids-tears, mucus, phlegm and for me the contents of whatever is in  my digestive system.

Gireving began right after the taut anxiety and stress of waiting was over, once the hospital bed was delivered by Hospice to the time my husband took his last breath. Grieving in that strong manner ebbs and flows and leaves me exhausted, so tired I sleep as soon as my head hits whatever pillow it touches. I feel as if grieving has an effect on the digestive system as well. All I want to eat are carbohydrates and sweets.

This week I bask in the attention of my relatives, my friends and my community as you all physically and emotionally hold me and comfort me, send me cards and bring food, permitting me to just sit and allow others to care for me. A new expereince for sure, one that I resist until reminded that it's okay.

I am comforted as well by all the belongings, all the mementoes we brought back from our many trips, all of the things we shared from our lives. I am surrounded by wonderful memories, every one of which remind me of a funny story or a lesson or an adventure we shared.

My feelings, thoughts and reactions to the physical loss of my husband surprise me. I well up with tears as I  remember how his hand felt in mine, how his shoulder touched mine, even as I know how much I mourned his loss and adjusted to life without him during the long nine years of his Alzheimer's disease.

With dementia the process after the death of the loved one seems reversed. We mourn the loss and adjust slowly to life without our spouse or parent before they actually physically stop living. But when they die, we grieve.

Peace at Last July 2, 2015

My dear readers,

Alzheimer's disease took my husband completely yesterday. He passed away in his sleep in the afternoon. He was diagnosed in September 2006 with "some form of dementia." The disease robbed him of everything he loved ---his music, his recipes, his books on all sorts of subjects, his foreign films and his all-time favorite film stars whom he no longer recognized.

His memory left him, but our memory of him is still alive and intact. The family will gather this wekend to remember   the sweet, fun loving, joke telling, but very serious father and grandfather he was. He loved to share what he knew, always teaching somebody something.

We will remember how much he loved to cook and to try out new recipes--most of which came out well. We will remember holiday dinners and visits in

South Jersey, Virginia, Arizona and New York.

Slowly the memories of his illness will fade and the memories of him as a healthy vibrant generous sweet soul will remain. 

Whenever I pick up a tool, I hear his voice in my head telling me how to use it safely. When I drive the car, I hear him asking me to remember to check the gas gauge and the oil levels.

In the park, I remember how he loved to take the little ones to feed the ducks--he loved feeding the ducks himself as much as the children did! He loved each picture the grandchildren drew and each skill they showed him they had learned. As we go on to new achievements we will know how proud he was of each of us, so pleased with us and with himself for being the head of such a wonderful family.

But as we try to erase the toll Alzheimer's disease took on my husband, we all cannot stop our fight to help raise money and to advocate for more research so we finally put an end to this devastating illness. We need to find a cure, so our grandchildren will be spared this awful decline. We need to support the many caregivers who care for beloved spouses and parents who lose their skills and memories as we watch, helplessly.