We All Need Support October 11, 2015

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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.

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.

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.

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?

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.

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.

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.