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Wednesday, December 23, 2015

Blessing or Obligation December 23, 2015








How easy it is to complain about the holidays. How much time and effort it takes to find and purchase "just the right" gift that our relative might not appreciate fully. How much money it costs to make the family dinner or to travel to our relatives' home where the food is what it always was, but our tastes and nutritional needs have shifted. How much we really don't enjoy the company of the relatives or perhaps of their friends who are invited this year. On and on we go, finding fault with our families and with ourselves for "doing it their way" instead of sticking up for our own needs and wants.
What's so special about getting together with folks we seldom see except at holiday time, weddings or funerals?
Why not make holiday time about us, about our friends, with the foods we want to eat and the people we want to socialize among?
Why should we do something if it doesn't make us happy in the moment?

What is it about the holidays that leaves many of us feeling empty, like we're "not good at family" relationships. What is it that makes us judge the relatives who don't show up?

Maybe we feel that since we make the effort, after a lot of quiet complaining, everyone else should too. It's only fair, right? How do we feel if we don't participate? What is left to feel special about?

What holds the holidays in place? If everyone feels as the complainers do, why are so any people crowding the airports and highways to get to these mediocre overstuffed dinners with relatives we see so seldom?

There is no right answer, no one way to handle these stressful times. We remember when we were children, we idealize the past where we can, we whitewash the sad or angry moments, the disappointments. We make jokes of the minor calamities, but we hold on to the relationships we have because in a heartbeat or a series of years, they will all be taken from us. We need to carry on the traditions of our families, to keep the connections, to provide fun times and good memories for the children because we were there once and our children and grandchildren, nieces and nephews will be in our position sooner than we think. We need each other, even those who see or speak with each other only a few times each year.
Call if you can't visit with family and find people to share the holiday spirit, open up your heart and let the good shine in.

Wednesday, December 9, 2015

Responses to Loss December 9, 2015

I lost my husband to the scourge of Alzheimer's disease on July first of this year. I felt not only the terrible loss of my life partner, but the huge loss of the resonsibility of caring for him during the length of his illness.
I wondered for a time how I would fill the hole left in my life by his loss and by the removal of that daily, hourly responsibility. I reveled for a while in the freedom I now had, to choose how to spend my time, where and with whom. Thre were so many relationships that had been put on hold, so many lectures, books, performances. I threw myself into a kaleidoscope of activities.

From July until the beginning of December. And then I caught pneumonia. Even though I was at the gym every morning, took three yoga classes and three execise classes each week plus a dance class and a Zumba class. I worked on my posture with an Alexander Technique person and a Feldenkreis instructor. I hosted two dinner parties and a tea.I ate well, walked miles every day, I felt energized and healthy.

So where's the connection? Coincidence? I can see coincidence if I developed a cold. Or even the flu from being in the confined air of an airplane cabin. But this is more than that. I'll tell you the clues.

One: I cleaned out my husband's "stuff" that was special only to him from his New York hobby room. I gave away his clothing, except for two sweatshirt jackets I couldn't part with, not that I would wear them. Two: I have yet to clean out his special "office" in our Arizona home. I just can't get myself to do it, although I did find his Army dogtags that his son asked me for.
Three:  The health insurance company sent me a new identification card. I went for an xray on Monday and I was obliged to fill in the forms. For the first time I circled "widowed." And in "relationship to subscriber" I entered "self " instead of "spouse". Twinges of pain I have been running away from for the past five months entered my system not directly at my heart but just behind it, in my left lung. 

Sunday, November 22, 2015

Gratitude November 22, 2015






It is only in the last 10 years or so that I have begun to feel truly grateful. Before that I felt entitled. Certainly not by being born white or Jewish, or the daughter of Holocaust refugees. But I felt that the good things in my life came to me because of my efforts. Either my parents or I had worked hard to achieve them or to deserve them.  I felt I was the passive recipient of good genes. I earned good grades in school. I learned how to be a patient and kind teacher and a listening psychologist. I read and worked hard at being a good wife and a good parent.
On the other hand, when hard times occurred, disappointments in relationships, or jobs or when I experienced losses, I had the feeling I was being punished for perceived failures. By not living up to the standards that were set for me, I had let myself and others down and consequently had "earned" the failures I encountered.
I also never believed in luck. I can't gamble; I am too afraid of losing.
And since I was born on the cusp of the Second World War, I studied about God and learned the language of the prayers and observed the rituals of my religion, but I never trusted in a personal God who would be there to help me in any way.
So what changed?

I was faced with a problem that could not be fixed by my efforts or anyone else's efforts. The fact that my husband developed Alzheimer's disease could not be attributed to any fault of mine, to any misbehavior or lack of concern, love or effort. His illness was not a punishment to him or to his family or to me. It just was.

Alzheimer's disease transformed me, made me realize how lucky indeed I am and how we are not in total control of our lives. Even though I exercise and watch my weight, I am grateful each day to wake up healthy. I am grateful for the sun when it shines and for the rain. I am grateful for my children and grandchildren who are healthy and thriving. I appreciate  my friends wth whom I can share a meal or an event, a greeting or a conversation.Thank you for being there.

Friday, November 20, 2015

Thanksgiving November 20,2015



Remind me, folks, lest this dinosaur forgot. Why  did the Pilgrims designate this day of celebrating with the Native Americans when they had survived the first harsh winter in their new land and harvested their first fall crops?
They thanked their God for what? Turkey? Corn? Sweet potatoes?

They were grateful they had chosen against all odds to flee the countries that were persecuting them. They had made the difficult choices and had experienced significant hardships not only reaching a new land, but learning new skills, weathering storms and cold to which they had not been accustomed and relating with the people who already lived here.In order to be free.

Where did they flee to?

America

And every so often, since then, we become "isolationist" and refuse entry to others fleeing harsh conditions, persecutions, discrimination, war and death. WHY?

And how do we justify all the Thanksgiving holiday hoopla without welcoming the stranger into our midst?

Wednesday, November 18, 2015

Life is Good November 18, 2015





Surely, turkeys play a large role in Thanksgiving. Mine will be donated to the food bank and we will have a vegetarian feast.
But most important are the family and friend reunions at holiday time. I am often surprised when I see people I haven't seen for a while. How did they age so much? Have I as well? I guess so, but I recognize the process in others more than I do in myself. That's normal. The changes in ourselves occur gradually over time, just as the changes occur in the people we see every day, slowly. Often we don't see the changes at all. So if you are visiting your parents or older adults, please look carefully.Gauge how they are dealing with life. What is their mood like? How has their behavior changed? Are they more mellow, easier to get along with or cantankerous and moody? Do they need assistance with the tasks of daily living they didn't need last year? Life is good when we can be with family members we love and can care for.

Have the conversation. Which one? The end-of-life one. What do your parents, aunts, uncles, friends, siblings want for themselves as they age and when they die? If you will be responsible, you need to know what they want you to do.

I will be reconnecting this week with folks I have known for 15 years. For ten years or more, the group met every six weeks for a Shabbat dinner in someone's home. We each brought part of the meals.Of the thirteen who were part of the group when we joined it, six will be present. One couple is out of town, which leaves five to be accounted for. One woman retired and moved out of state to live with her daughter and granddaughters. One woman died a few years ago and two men died this summer, including my husband. And one woman moved to an assisted livng home because she has dementia. We will rejoice at being together and by rememberiing the ones who are no longer with us.We'll drink a toast, but it will most likely be grape juice! Life is good when we can be together with friends. 



Wednesday, November 4, 2015

Recalculating November 3, 2015


We reach crossroads often in our lives, but many of them are "forks in the road." We have two or three options and we need to choose one. What we do changes the course of our lives. In today's fast-paced world, we choose often and change course regularly, which does not stop as we age. 
For older adults that change is often not easy. We are used to the pattern of our lives and of being swayed by life to "go with the flow" without deciding for ourselves what action to take.

I had lunch with a friend yesterday who has a better ieda. She recently lost her beloved husband of the past thirty-five years. He attained the age of 89 in good health until the last few years when he survived a few surgeries and nagging physical problems. A gracious, loving man, he never complained, he kept up his interest in his world, they traveled, they visited with their blended family, He died at home, in his sleep attended by a hospice nurse as his wife slept nearby.
Now, friends and family ask her "How are you?" and she has found the perfect metaphor for her feelings. Just as the GPS in the car responds when you make a change in the direction the car's voice has indicated, my friend replies, "I'm recalculating."
Now, many of her friends are inviting her to concerts, luncheons, dinners and she is quite busy with the  seemingly never-ending financial and governmental details following a death. She is also determined to "clean house" and to part with many things she no longer feels the need to keep. This attention will decrease with time and she, like the rest of us who have lost beloved spouses, will recalclate the direction  her life will take next.

Sunday, October 11, 2015

We All Need Support October 11, 2015




Image from https://img0.etsystatic.com/034/2/5862974/il_fullxfull.657925498_qdg0.jpg.



Nothing is more important for the people who are direct caregivers to a spouse or parent who has Alzheimer's disease or another of the dementias than participating is a support group. I found that out for myself when my husband first attended the Day Club, a day program for people who cannot remain home by themselves all day while their caregiver is at work, or those who need socialization. Mostly the Day Club gives the senior caregivers a break in their non-routine, stressful days.

I wrote about being a caregiver in my book Put That Knife Away-Alzheimer's, Marriage and My Transformation from Wife to Caregiver. I am pleased to report that more copies are now being purchased as the customers go to Amazon to find my second book which just got published. The new one is called The Key, the Turtle and the Bottle of Schnapps-In honor of my parents and grandparents who survived the Holocaust. It tells the story through my eyes as I remember what I heard as a child and what I validated for myself by traveling to Europe to discover the path they took for myself. Readers will see how the title's objects were very vivid to a child hearing these stories repeated as each new relative or friend came to our apartment to see my grandparents.

When I was a child, our milk was delivered every morning  by an Alderney Dairy truck. The bottle you see here is like the ones we received. The milk was pasteurized, but not homogenized, so the cream rose to the top of the bottle. I remember the bottle now as I think about the Alzheimer's Association support group I first attended. We were from 6 to 18 people every two weeks. We came from various parts   of the country. We were of all different ages, mostly women, but a few men as well, just as the milk in those days was collected from many different farmers from many different cows.

We poured out our stories to each other about the challenges, joys and tragedies we faced on a daily basis. We were nurtured by sharing our complicated trajectories.

Now my journey has ended. Three of the original members of this group whose spouses have also passed away, still meet every second week to share our life stories. Our relationship has become richer and more complex. We reminisce, we mourn, we celebrate our life successes. We are separate from the   rest of the group who continue to share their stories, but we are still very much a part of the whole.


Sunday, October 4, 2015

Put That Knife Away October 5, 2015








It is so gratifying to me to receive letters from readers who have been helped by reading my book. Now that my new book is up on Amazon, folks are also purchasing the first one.

So many people know someone who has Alzheimer's disease. It seems to be spreading rather quickly and since no one wants to read about it before they see it personally, the people who are responding now are grateful for the information, but also for the insights into how to care for a friend or a relative who is caring for someone with Alzheimer's disease.

Caregivers have such a hard time. One woman we know from our support group is wishing for her husband's suffering to be over. He does not know what to do or where he is supposed to be. He resides in an assisted living facility, but she is there every day, feeding him, changing him and trying to make herself and her spouse feel better about this longlasting illness.She is ready for him to die, but is making every day he lives as rich and as rewarding as possible.

Another woman feels her husband is "not that bad yet." But he has delusions and accuses her of not being caring enough--of his sisters who presumedly are awaiting her to pick them up at the airport! Unfortunately, they passed away many years ago.He was so upset about her failures that he kicked the chair on which she was sitting. How soon before she is injured?

What can you do when you hear these stories? How can you help? You can text or phone or visit. You can send a humorous card or note. You can help the caregiver to feel less alone. You can invite him or her to your home for a visit or offer to go to the market or do other chores which the caregiver does not have the time or energy to do.

Paying it forward through acts of kindness goes a long way toward helping the caregiver. I know how important it was for me.

Tuesday, September 15, 2015

What Does it Mean to Be Alone? September 15, 2015







I am blessed by many friends, many colleagues and family members  in New York, in California, in Florida, in North Carolina, in Oregon, in Denver Co. in Arizona and in Montana in the summertime. My husband who had Alzheimer's disease was not living at home with me for the past four years. But all of a sudden, life is so different for me. 

My husband's passing which was neither unexpected nor unanticipated has changed my perspective on life. I am for the first time, alone, really and truly alone. My son who has shared this burden and the joys which accompanied caring for my spouse with me, understands all too well, what this loss means to me. It means almost the same thing to him.

I returned for the first time since my husband died in July to Arizona last week and my son met me at the airport. My daughter and one grandson met us for dinner to welcome me back before I came back to our home, the home we built to be a safe haven for my husband where he could have his garage workshop and his garden and be able to wander freely and safely in our enclosed, gated community.

I never gave up believing that he would one day return to live here. Now that dream can be no more. I threw myself into holiday preparations. I cooked, I even baked a cake which is very unusual for me, to ward off the uncomfortable feelings of Ioss I find difficult to accept. I challenged myself at the gym. I actually published my second book. More on that later. When we read on the New Year holiday that this is the time of year that God decides who shall live and who shall die during the coming year, I remember asking last year, for a peaceful end to my husband's  suffering and debilitation. Gratefully, I thanked God this year for hearing our prayers.

And my dear son decided, I should not live totally alone. I needed another living creature, plants were not enough. He purchased a betta fish whose aquarium sits to my right, to keep me company as I write.



Thursday, September 3, 2015

Friend or Caregiver What are the Boundaries? September 3, 2015







I have always been a care provider, both personally in my childood family, as a parent of course and professionally as a therapist. I married a most independent man who relieved me of that responsibility at least toward him for many years. He taught me I no longer had to worry about pleasing other people. I could leave food on my plate in a restaurant and not need to take it home or finish it after I had already had my fill. I could state what I wanted directly and we would discuss it, rather than one of us always asking "What do you want to do?" We each had true freedom to be ourselves.

But when he began to develop signs of memory failure and he began to depend more on me, I slid into the old behavior gladly. I was happy to be able to care for the man I loved so much. By being in a relationship with him I had grown so much. I was able to relax my cynicism, trust his support and bask in the fruits of letting him do what he wanted, which included cooking, planning vacations and treating  me so well.

I denied the severity of his illness for a long time. I took charge of his wellness by providing vitamins, supplements, modifying our life style. I stretched his willingness to be helped to his limit.He was such a proud man, the best provider for me and for his children. Ultimately, he had no choice but to let me and others care for him. The balance in our marriage shifted.

Now he has left us and I am left with reevaluating my life choices. I see that I no longer want to slip into a caregiving role with anyone, not my adult children, not my grandchildren, not my friends who are growing more limited in their ability to join with me in what I want to do. I stand on the hilltop of my experiences with my children and grandchildren who walk the other way if I give a hint of a direction for them to take. From my experience with other caregivers, I see many things that could benefit those around me. I see who uses a cane, but would be more stable with a walker. I see whose memory is failing and could use perhaps a diagnosis or a change in life style. I see who is isolating and could use my help. Do I have to let them be free to do as they please? 

I have an idea who has made plans for the future and who has not. Where does my responsibility as a friend lie? And how
do I stop before advising, helping, providing, enabling, facilitating so they can join me in my activities and just care about finding new interests and new activities for myself?

Tuesday, August 11, 2015

Jersey Shore Summer August 11, 2015

The awnings billow, the flags protest, the drainpipes are busy as the wind blows the summer rain, diagonally it seems,  in drifts from southwest to northeast. The ocean rages, its white wavecrests crash against the jetties and each other as they hurry toward the shore. 
I sit safe and protected on the porch of the inn I have been visiting for a weekend every few years for the past forty-five summers.
In my wicker chair near a glass-topped white wicker table, I have a view of the ocean not even a city block away.
"Would you like to leave a day early?" asks my host since it will most likely rain all day. Quite the contrary. I love the summer rain.
As a child not one mile from where I now sit, I spent every summer at the Jersey shore. We children walked barefoot in the puddles after the rain, played "knuckles" on the porch, or "jacks." A community jig-saw puzzle was often on the table. Not only our family, but the several families who rented rooms in the large roomy houses added at least one piece to the puzzle each time they passed by.

As I sit and watch, nature is expressing my protesting, raging feelings, just as yesterday the hot sun blanketed me in peaceful, quiet restfulness. As I mourn the last past phase of my life and before entering the new, yet to be discovered next stage, I observe the world and the people around me. I choose to interact very little and quite shallowly with the other guests at the inn. My interests are inward as I reminisce about my childhood experiences at the shore and the many happy memories of spending the summers with my children and their father at the beach.

The families I see today are together on the beach with men caring for young children as well as women. They wheel large aluminum-pole framed mesh bags into which the umbrella, the pails and shovels and the blankets are packed and onto which the chairs are hung.In my day, we mothers carried all of the equipment or pulled little red wagons or pushed old strollers. We made a semi-circle of our beach chairs and watched our youngsters frolicking at the water's edge as many did handwork, knitting or crocheting. The men arrived for the weekends and fished, listened to the radio broadcasted baseball games and took the children "deep" into the ocean.
Inside myself, I am enveloped in the loving
memories of my life with my husband before his decline into Alzheimer's world. Its all good.

Saturday, August 8, 2015

Aging and Alone August 8, 2015


 






Many retired couples live in Arizona in communities where the neighbors become friends and help each other.
Many families across the country live in neighborhoods where close bonds endure after the children have grown and left home.
Many folks belong to religious groups that meet regularly not only for prayer services but for socializing as well.
Some adults have lived alone all their lives and know how to care for themselves. Some never learn.

And often some of these bonds fail when a member of a couple develops Alzheimer's disease. Then, if the caregiving person is perseverant, (s)he joins a support group which replaces the other groups in whole or in part for conversation, and sometimes for socializing purposes as well. Or smaller groups within the support group form and the people become friends.

But what happens when the caregiving ends when the partner dies? The former neighbors and friends have also gotten older, their lives have moved on and the basis for friendship may no longer exist. Meetings or dinners out together become shallow images of the former close relationship.

The same may also be true of former support group members. The glue that held you together dries up when there is nothing further that binds you and the communication becomes more distant.

Sometimes it is difficult to return to group life after many years of isolation, moreso after the intense experience of caring for a loved one with Alzheimer's disease. It takes a lot of effort to make new friends, to join new groups, to invest in new ideas, hobbies, interests, and to become active once more in defending your ideals and values.

But what happens when you are alone, if you have an emergency? If you don't feel well in the middle of the night? If you are lonely or need help? Even if it was necessary to call for help for your loved one, can you do the same, can you care the same strong way for yourself? A new challenge.



Sunday, July 26, 2015

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.

Saturday, July 11, 2015

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?

Friday, July 10, 2015

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.

Monday, July 6, 2015

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.


Friday, June 26, 2015

The Next Most Difficult Stage of Alzheimer's Disease June 26, 2015

Every new stage of Alzheimer's disease is difficult. Early symptoms which reveal something "off" when we relate to our parents or our spouse frighten us because we suspect what may be coming.

As our suspicions are validated, it is difficult to confront them and get ourselves or our loved ones diagnosed. When we hear the diagnosis and know, it is so hard to realize there is nothing we can do to alter or halt the progression of Alzheimer's disease.

If you have been reading and are prepared, you know how hard it is to change your wills, your own powers of attorney, manage your money and take charge of events you either always shared or left to your parents or spouse to sort out for themselves.

Each change which shows your loved one is losing his or her judgment, decision-making skills and short term memory hurts them, if they are aware of the changes and is hard for us to maintain our cool and not expect what they have lost to be regained.

As caregivers, we attend support groups, we pray, we do what has to be done. We don't talk about bathroom accidents or bedroom concerns--they feel too private to share, but they are so hard to manage, to get used to, to accept as our jobs.
We get used to having our loved one next to us all the time, for their security and ours. We worry less if we can see what they are doing.

Once we cannot manage on our own any longer, it is difficult to admit we need expensive help which may entail changing our own lifestyle further.

My husband and I have been through all of those stages. it is four years that he is living in a facility. Now he is beginning to fall. He hurt his hand and now he has hit his head. He doesn't understand how to use a walker. He is agitated and walks. If he gets a tranquilizing medicine, he becomes so lethargic, no one wants to see him like that. Once again, it is so difficult to find balance.

Wednesday, June 3, 2015

Noticing Changes in Loved Ones June 3, 2015

It has been a month since I posted to this site. The changes in my spouse are so difficult for me to process. How can he REALLY not know who I am? When I visit, he is passive. He does seem to have connections with his care providers whom he sees regularly, for which I am grateful. 
And they are all young, pleasant looking women, which makes some kind of sense, knowing my husband's fondness for looking at young women. There is still some of his personality recognizable, I guess.

But the subject for this post is a response to the many queries I get from folks who meet me, either for the first time or friends whom I have known for years.

"I think my spouse (mother, father) is going through some changes. Do you think he(she) has Alzheimer's disease?"

Let's begin at the beginning. A disease is something that interferes with daily life. When someone tells me their spouse is getting "hostile" which I gather they know from reading my book Put That Knife Away, there may well be many other reasons for this behavior than any disease. When a parent doesn't remember that you visited or phoned last week, that also is not sufficient for a diagnosis of illness. When a father-in-law whose wife just died wants to be left alone in their home, even though we know he won't be able to manage on his own, we can't jump to the conclusion that his judgment is impaired by a disease. It may be impaired by his loss, his grieving, his desire for everything to stay the same because change is so hard to process.

As a society, we are so afraid of Alzheimer's disease we do many things. We deny its existence or we see symptoms in everyoone we see. Sometimes we see symptoms in ourselves which we deny or become too depressed to deal with them. We either read everything we can online, or we don't deal with it at all.

A disease is something that interferes with everyday life. Obsessing about illness can interfere with daily life and become a disease. Try talking it out with the person you are concerned about. Ask questions. Don't jump to conclusions about your self or your loved ones. Alzheimer's disease is not preventable or curable. Worrying about it won't help. Enjoy your time together, make your days pleasant, take pictures, collect memories and if you are concerned about yourself or your loved one, start a journal and see how often a difficult behavior occurs. Take the journal with you to the person'e next primary care physician appointment and see if an assessment is needed.


Thursday, April 30, 2015

Subtle Changes April 30, 2015

When is the appropriate time for a referral to hospice services for an Alzheimer's disease person?
When the subtle changes begin to add up to a pattern of decline.

We were blessed this week by the physician's referral and by the Hospice of the Valley's concurrence that my husband is now eligible for their services. Not only was he assessed by their nurse, he was seen by their social worker and Rabbi Susan visited with him and sang with him this week.

"He made eye contact with me, he nodded at the photo on his table, listened to my singing and then comfortably nodded off," the rabbi reported.

It is good for him to receive visitors who walk with him or play ball. Lately he has been rolling the smaller ball across the kitchen table to another resident, who thinks of my spouse as his friend. Both of them are pretty good at catching the rolling ball. Only once in a while does the staff member have to chase the ball and find where it rolled.

The mind is so complicated and this disease is so strange. Ball playing involves many skills, first and foremost, concentration, remembering what you are doing and remaining focused. You can see that he is interested nd capable of performing this task and continues for a long time to play. There is no smile on his face so we cannot be sure, but being engaged seems to make him feel good.

And of course, my husband has always liked to be active and engaged with life. He was never one to sit around doing nothing or even watch a ball game on tv, except for the World Series or the Super Bowl.

Saturday, April 25, 2015


There is Still Shame in an Alzheimer's Disease Diagnosis April 25, 2015

Many of the blogs about caregiving for dementia- diagnosed loved ones have talked about whether to tell or not. Should the care receiver know his or her diagnosis? Will it help or hinder the caregiving relationship?

It is mostly adult children of a parent with dementia who are asking this question. Of course the answer depends on the stage of the dementia, and specifically if the person has Alzheimer's disease, a more specific strain of dementia. Why? Because most dementia patients have long-term memory still available. Most dementia patients lose short term memory but their personalities don't change. The rage and anger responses are quite often limited to persons who are diagnosed with Lewy Body dementia, which often comes with Parkinson's disease, or Alzheimer's disease which messes with the person's ability to separate truth from fiction, today from a long time ago. Alzheimer's disease robs its victims of rational thought processes, so telling them anything requiring logic to understand, doesn't get through the diseased part of the brain!

There is another reason for withholding this information from persons in the Moderate Stage of Alzheimer's disease, other than the fact that they cannot process the information and cannot hold onto the information if indeed they understand it. In many social and economic and regions of our country there is still shame in the diagnosis. For example, one woman was sharing her journey caring for her grandmother. All of a sudden, her voice lowered to a whisper. "You know," she confided, "Grandma became nasty," as she wrinkled her nose.

A man who lives in the same assisted living home as my husband asked me this week, "What is wrong with him?" This man is confined to a wheelchair and my spouse walks. The man speaks and is lucid. He shares,"I talk with him. We have conversations, but I really don't understand what he is saying."

I answered, "He has Alzheimer's disease." The man lowered his voice and said, "Don't worry, I won't tell anyone."

Saturday, April 4, 2015

Happy Holidays April 4, 2015

This Spring once again, we have the holidays of both Passover and Easter on the same weekend. Both the Jews and the Christians are grateful for being rescued by an Almighty power several millennia ago.

We are blessed to live in a country where we are free to worship and to rejoice in our own fashion. The theology may be different, but the celebrations are so very similar. We get together with friends and family and we eat!

We even eat some of the same ceremonial foods-- eggs-- which symbolize for us all the rebirth, the emergence of spring, the hope for the future. We all dedicate ourselves anew by initially depriving ourselves of something of value in order to heighten our awareness of the gifts of freedom we have received.

We invite our relatives and friends to gather together in the spirit of love and fellowship, to honor tradition in ways old and new. We plan what to wear, what to bring. We shop for new clothes, we prepare menus, we clean, we cook and look forward to and thoroughly enjoy the gathering.Right?

And then why,  the next day, do we talk about each other in ways familiar, time-honored and not always very nice."Did you hear how ..?" "Did you notice that..?" 

Familiar? Why? From where does this need come to bond with one person over the perceived faults of another? And then of course we wonder--what are the others saying about us?

Let's try this year to be kind to one another- while we are with them and afterwards too. Let's try to look for the good in each other, to really be aware of our blessings of family and friends, without whom, I, for one, would be so alone and bereft.

Monday, March 23, 2015

Agency March 23, 2015

The word AGENCY in psychology or sociology or philosophy means the ability of a person to act in the world. Even a baby has agency when he cries to obtain help, food or relief from pain. The baby is using its capacity for agency when he or she smiles at the caregiver. Very young children often learn to bat their eyelashes and seem to "flirt" to obtain  their wishes from adults.

Babies and young children can do very little for themselves. They depend on parents and teachers to guide them and to protect them from harm. But already by age two, they learn to say "no" and exert their influence on their caregivers. Parents and teachers need to use logic and reason to convince a child to act appropriately. Sometimes rewards and punishments are used to mold a child to the adult's way of being.

By the time a child becomes an adolescent-whenever the change occurs from young adolescent to responsible adolescent, the adults are resource people to whom the young people come for advice, before making their own decisions on how to act in the world.

When the balance in a relationship of adults shifts, we say the husband is "henpecked" or the wife is "submissive" and one or the other exerts more or less control over the relationship. Even in those rellationships, a balance is achieved, with each person deciding to accept or reject what is being offered.

Then if Alzheimer's disease enters their lives, the balance shifts again and one person becomes dominant in the relationship. For a previously submissive partner to be in charge is, at the beginning both a challenge and a power trip. It feels good to be able to care for a previously very independent person. Of course as the disease progresses and the personality of the loved person begins to change, the actual care work is more difficult and the rewards are fewer and fewer.

And now it seems as if my Alzheimer diseased spouse loses all agency, no longer smiles or speaks or demands to have his needs met. He just accepts whatever life offers, passively. He permits himself to be led, he sits, he walks. He recognizes no one. I am grateful his caregivers are kind and anticipate his needs.

Saturday, March 14, 2015

Finally a List of Fish that We are Safe to Eat March 14, 2015

There is so much mercury in fish and so many toxins as well as many fish that have been overcaught and are near extinction, that the variety I like to choose from is limited.
If you are lucky enough to have line caught freshwater fish, enjoy. Those of us who depend on fish that is commercially caught, restaurant-served or bought frozen at the market, now have a list of fish we can   choose from without concern.
  • Snapper from the Gulf of Mexico
  • Rockfish caught by hook and line
  • Atlantic Halibut
  • American Eel
  • Pacific Halibut
  • Yelloweye Rockfish
  • Yellowtail Rockfish
  • United States Haddock
  • Widow Rockfish
  • Sablefish (California, Oregon, or Washington)
  • Black Cod (Alaska and Canada)
  • Vermilion Snapper
  • Whiteleg Shrimp
  • Tai Snapper
  • Black Sea Bass
  • Freshwater Eel
  • California Halibut

Remember that all fish contain mercury, but you can still have your fish and eat it too if you make your choices from the list above.



Monday, March 9, 2015

Yoga and Trust March 9, 2015

I drive to the gym to take a yoga class as I have been doing four days each week since last September. I know I will be there to relax and stretch as this is the Monday routine. I get out my mat, set my block upon it, take off my shoes and socks and begin to lie on the block stretching my shoulders, my core and my hips.
After a while I begin to feel anxious; the time for the class to begin must have passed. I sit up and yes, the instructor is late. My muscles immediately tense, the thoughts of the day run through my head. My mood has changed in an instant.
I feel the same has happened to the other 30 people in the room. Conversations begin, first in whispers, then louder. One person leaves. Finally, five minutes later, although it seems like fifteen, the instructor enters as if no time has elapsed and begins to move us into position to begin the class. A few people clap. She begins "Listen to your body. This is your practice. Try to stay in the moment for the next 55 minutes or so." My head is saying "Only 45 minutes left now."Slowly, my body responds to the cues and I follow along with the class.
Part of me feels as if I had been lying on a hammock and one of the strings broke. In reality I am lying on a yoga mat on a carpet on a concrete floor of the gym, but in that slight delay, my trust has been broken. Not forever, but it was so immediate it surprised me.
Trust is so fragile. We awaken each day with expectations and if we are disappointed in our assumptions, we become anxious.
The yoga instructors intone "Yoga is here to heal us, not to hurt us. If a posture feels uncomfortable, back away from the posture, modify it to suit your body's needs today." So I don't feel anxiety if my  body won't move the way it did before. I am comfortable making my own decisions about my practice.
But if the instructor is late, or if the instructor is unsure of the routine and hesitates between suggesting the next postures or apolgizes for forgetting something in the routine that I am not even aware she has forgotten, my equilibrium is lost.
The same of course is true with parents and teachers as with local police and world leaders. When we place our trust in others, which we must do as students, as workers, as citizens of a democracy, we expect consistency, a certain confident tone of voice and a routine positive presentation. We want to be held in that protected hammock, our values supported, our bodies and our possessions safe, encouraged to continue to do our best, knowing we are being led in the right direction. We are so often disappointed, we are so often in a state of anxiety, feeling lost. It becomes difficult to continue to feel confident in our choices about our own lives. Recognizing the source of our anxiety can help us stay in touch with our own reality and modify our responses to meet our goals.


Sunday, February 22, 2015

Thinking Out Loud February 26, 2015

Do you ever talk to yourself out loud?
Back before Bluetooth, when I heard a person on the street, on the bus or in the subway speaking out loud to herself, I kind of assumed she was mentally challenged and was communicating with auditory hallucinations only she heard in her head.
Now of course we overhear all sorts of one-sided conversations folks are having with an unseen, but heard voice on the telephone. Perhaps a bit less so today, as the voice has been superceded by the text message. The talk can be more private now.

Absolutely, we all have private conversations with ourselves. The cognitive psychologists have coined a name for it . "Self-talk" is a technique to help us change bad habits or to stop obsessing about something we cannot change. We talk to ourselves  to remind ourselves of tasks, to chide ourselves for missteps in our relationships with others, to review presentations or conversations we will have with classes, bosses or even to make up a story I will tell to the police officer in the car following me down the highway if he turns on those lights and stops my speeding car.
I was busy making up one of those stories yesterday as I drove at 75 mph down the highway. But the car which passed me had no complaint.

As a writer, I have ample opportunity to express my thoughts and feelings, but always, even as I write this blog, I have a reader in mind. I formulate my thoughts to make myself understood by you.

As a caregiver for a husband who has Alzheimer's disease, I now have the possibility to speak aloud in public to an audience of one who most likely has no idea about what I am thinking out loud. He benefits from hearing my voice, perhaps looking at my expressions, but he definitely likes walking next to me holding my hand or sitting with me on the glider as I speak.

I tell him about the issues raging inside me, trying out solutions to various problems, patting myself on the back for successes and planning future writing, thoughts and actions. A silent sounding board, but quite satisfying to me to be able to hear myself speak with few if any interruptions.



Friday, February 20, 2015

Appreciate Life February 20, 2015

Each day as I sit with my less and less communicative spouse at his assisted living home, I gain an appreciation for the connections I have with family and friends. Alzheimer's disease is such a devastating end of life that sometimes lingers on and on. Watching the plaques and tangles take control of more and more of my husband's brain makes me realize how much of the connection between us depends on our self-perception. We love someone because we attach ourselves to an idea we have of that other person. 

Less and less of that connection depends on the actual behavior of the person him or herself once we decide to love. Yes of course the physical attraction comes first, but even that is a decision we make ourselves about the type of person we will let ourselves be attracted to.I also see that one indiividual in a relationship decides not to love the other anymore again for reasons peculiar to that person. Thereis nothing   the no-longer-loved person can do to rescue the relationship.

I understand better the idea of pre-arranged marriages where the family participates in choosing a reasonably matched pair who develop a partnership between them over time. I know that idea is passe now, because the sexes were not treated equally in the choice or in the marriages that were arranged. Women had defined roles they were expected to maintain which were subordinate to their husbands. That won't work anymore. Each person has set ideas about the person they decide to love.

The second marriages I have observed seem to fare better. The pair chooses more wisely perhaps, the strain of finances and of children is decreased. The healthy spouse remains devoted to a more and more absent partner if Alzheimer's disease or Parkinson's disease, ALS or cancer enter their lives.

Just as "it takes a village" to raise a child, it is of umost importance for our lives to develop new friendships, maintain alliances and deepen our connections with our friends and family.

Friday, February 13, 2015

We Demand Hopefulness- Or We Don't Listen February 13, 2015









The news media is full of tragic stories every day-on some channels all day and night, we hear of death by accident, illness or foul play. But when it comes to writing about Alzheimer's disease, a degenerative, neurological illness that has no cure, we want hopeful, happy stories with positive outcomes.
If I write about my expereinces as a caregiver or about my care receiver's events,if they are not hopeful and positive which by definition the stories cannot be, no one wants to listen.Not no one actually. People with experiences such as mine want to hear they are not alone. They feel comforted  by knowing others have dealt with the problems they are facing or have faced. But it's the general public who don't want to hear about the trials of caregivers and care receivers as we speak out asking for more funding for research and more support of our current loved ones who have Alzheimer's disease or other dementias. They also don't want to hear about planning for their older years or those of their parents.

WHY?

We don't want to hear abut the killings by Boko Haram in Africa either, or about anti-Semitism in France or in the rest of Europe. Yet we respond with admirable anger over the killing of three Muslim students, African-Americans bullied by police or local vigilantes.

BECAUSE we feel we can DO something about these last issues. We can exert some public outrage, protest and have a hope that some change can be accomplished.

So far, the world is unable to stop terror attacks before they happen and we are unable to cure Alzheimer's disease. We feel frustrated, sad and impotent.

We worry we will be next in all of these cases. Some people avoid travel, thinking they will be spared if they stay home. Most of us remain in DENIAL. What we don't pay attention to, what we don't listen to, won't come back and bite us in the rear.

Sunday, February 1, 2015

Communication February 1, 2015

I continue to visit my husband daily at his assisted living adult home, where I am sure he is being lovingly and well treated, even though sometimes I do not know if he recognizes me. He has been verbally non-communicative for quite a while, but his eyes would sparkle when he saw me, or he would raise his hands for a hug and I would know I was welcomed and loved.

When my husband tries to communicate verbally, his speech is a repetitive series of sounds which are unintelligible to me-- or to anyone else. But I do sense his mood as he speaks and frequently I feel that his need is to communicate something that is wrong. My husband's awareness of right and wrong has always been acute and he has always been a detail-oriented person. So I don't know what he is referring to, but I am pretty sure it would be a complaint.

 I distract him with pictures from a magazine, lure him outside to play ball, walk with him in the sunshine until all of a sudden he comes out of the reverie and really looks at me and knows who I am. He will grasp my hand more tightly, reminding us both of the strong bond we share without words. Twice this week he has, at those times, uttered a complete understandable sentence. One day as we were sitting in the sunshine he said, "I think I should get up now." Why I will never know, but he stood up and we continued our walk. 

Yesterday when I walked in, I found him sitting alone in the kitchen. I know he likes to sit there when food is being prepared. He watches and gives advice--which everyone knows is pleasant and he is trying to be helpful, as when he pointed to the chops being grilled on the indoor grill when they smelled like they needed to be turned. But yesterday, he sat alone, he would not look at me, but I coaxed him up and he walked into his room. "I will sit for a while" he said clearly. So he sat on his lounge chair and I perched on the corner of his bed. A few minutes later he said clearly, "Would you like to go for a walk?"
We walked, but each time we neared the living room, he stopped, rolled his eyes and said something in  a decidedly disturbed tone, but I didn't figure out why. 

Until another resident's visitor vacated the spot on the leather recliner sofa where Bob has recently sat. He left me, walked over to "his" spot and happily sat down until dinner was served and a worker escorted him to the dining table.

Sunday, January 18, 2015

Self Acceptance January 18,2015

As New Year's resolutions begin to fade, I start to think of all the "bad" things I've already done this year. I bought a huge macadamia nut cookie at the food store--it was shining at me at the checkout counter in its Saran-wrap luxury-- and ate it all before I finished putting the rest of my purchases away.
AND I just added a half teaspoon of "real" sugar to my Sunday morning coffee which prompted me to write this blog entry.
Last week was a challenging one for me, but it also had such goodness I have been heartened rather than its opposite. My friends know I am always willing to believe in people, some call me gullible I admit. I trust easily , but I get SO disappointed when my trust is misplaced and I get "taken."

I lose my self-respect, I doubt my decision-making skills, I cringe and want to curl up with a good mystery novel and hope the problem goes away, or that my emotional involvement dissipates to the level at which my head can function to extricate me from the ensuing mess.

This pattern can and does happen to many of us. We set goals, we slide back a bit which we accept until something else in our lives disappoints us and we slide into dysfunction. Whether we choose alcohol or pills or food to soothe our bruised selves, whether we hide from life and disconnect from friends or act out aggressively in this less than balanced state, we need to recognize what is happening inside ourselves.
Awareness has to come first.Reaching out to family and friends comes next. "Fessing up" and letting your world know what has happened isn't easy. It feels like admitting to failure, to naiveté at the least.
My son read the offending letter I received, my friend suggested an attorney who phoned me directly and even emailed me at 8:05 on a Friday evening and offered to read the material without charge!!

Don't let the winter doldrums get you down for long! 

Sunday, January 11, 2015

Bess Myerson Dies at 90 from Alzheimer's Disease January 11, 2015

Bess Myerson was Miss America in 1945, when that title was an important one at the end of the Second World War. As Miss America, she was set up for a series of appearnces in many cities across the country. However, instead of welcoming the New York extremely talented beauty, she was discriminated against because she was Jewish. She was not admitted to the country clubs and was not permitted to stay in the pageant-ordered hotels! Eventually she just went home.

She became an advocate; she presented the promise of the Miss America pageant and she became  outspoken about the racism and the bigotry that existed then and sadly, to some extent, exists still today. She had the courage to speak out and the pride in her heritage. She became the Consumer Affairs advocate for the city of New York and served under two mayors, Mayor Lindsay and Mayor Ed Koch. She also becme a television personality, she was on three shows. The most famous one was What's My Line?
She even declared to run for a Senate seat in New York in 1980, but was sidelined with cancer
In her personal life she was not lucky; she eventully was charged with bribery when she hired the daughter of a judge who was hearing a divorce case involving her married lover. She was acquitted, but she lost her job as commissioner.

After 1988, she moved from New York to be with her daughter. She developed Alzheimer's disease and died on December 14, 2014 three weeks before the press heard about her death.

Sunday, January 4, 2015

Perseverance January 4, 2015

The dictionary defines the word as continued steady belief or practice regardless of difficulty. Its synonym is persistence.

Those who know me will agree that I keep on going, trying to find a solution to problems regardless of difficulty. I make attempts to learn something new, to write something better, to help others where I can, to advocate for other caregivers. 

I received a most welcome gift this week, however. A woman who had recently met me, then read my book, Put That Knife Away, wrote to me that I had persevered. My accomplishment, she added, is helping her to persevere through the newly diagnosed dementia of her husband.

Using the past tense of the word freed me somehow. She was correct I now realize; my struggles with caregiving have diminished. My husband is no longer angry; I have moved him to a quiet peaceful home instead of the larger facility where he had been living for the past three years. I can relax.

My caregiving is not over; I visit regularly, bringing magazines or his winter jacket. I witness his contentment and I am relieved that his needs are being met so well. I can now persevere in writing the sequel which will be called I Want to Go Home, a book about the various residential avenues my husband and I have explored and those that have been used by the members of my support group.