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.

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.