Barbara’s Story: Giving Care, Giving Love

(1/5) “Decisions Needed to Be Made”

“It was a reaction to the circumstance. I was trying to get my parents to understand that plans needed to be made. Though they were more independent at that time, given their ages and varied health issues, things were going to change. Quickly. They were living in Brooklyn and I was in New Jersey. As I was their “primary caregiver,” I asked them to consider looking at Daughters of Miriam Assisted Living in Clifton. They finally agreed to go and they got on the waiting list. Then my father’s health took a sharp decline. It was 2002, and we brought him to a doctor’s appointment, and from there he was sent to the hospital. My mother couldn’t be alone in the apartment so we took her back to her home to get some of her things and brought her to our house.  We didn’t know how permanent or temporary the situation would be. A month later, my father was gone.

She was staying with us. We had a small den with a sleeper sofa, and we tried to make the living situation as private and comfortable as possible, as she could no longer climb the stairs to the guest room. I had a supplemental aide come a few times a week, but I was largely the caregiver. After about four months she was accepted to Daughters of Miriam. We asked what she wanted to do. We told her, ‘You don’t have to go if you don’t want to.’ But she saw the writing on the wall: she couldn’t use the steps to get into our home. I could get to her new residence in eleven minutes. So she decided to move into the assisted living.

She received some help during the day from an aide through the Daughters of Miriam, and I signed her up for more through Jewish Family Services. Her needs increased. A number of my mother’s health issues stemmed from the effects of a brain tumor that she had when I was three years old. Over the years she’d had heart attacks, skin cancer and severe arthritis. The impact of these illnesses left her quite self-conscious. Going into new social situations by herself was something she found very difficult, especially after the loss of my father. She was grieving, as we all were. At almost eighty years old she had to start fresh. It was incredibly difficult. She made the effort but her health was diminishing. She was honest with me and told me she was upset: for the first time in her life she had to live alone. That was very difficult for me to hear.”

(2/5) “Come Live With Me”

“As soon as she would get acclimated or have any kind of social success, someone would pass away. It was devastating. She had a TIA– a mini-stroke– and increasing health concerns. She had her own apartment, consisting of a bedroom, kitchenette, bathroom and living room. She had dinner with the rest of the residents but could have breakfast and lunch in her own space. I had arranged for someone to spend a couple of hours a day with her, but it soon became very clear that she needed more help. She kept falling. We could have moved her to the nursing home part of the facility but she wouldn’t have it, and the truth is I couldn’t bear the thought of it.

My kids were getting bigger and my husband traveled a lot for work. I would visit her often, take her to lunch, to shop and bring her our home to visit the family as much as I could. We had a special seat installed in our minivan. She was making a go of it, but her health and emotional state remained a concern. She had a Life Alert button to press when she fell and needed help. After she broke a rib from a fall, I told her that this couldn’t go on and we needed to be serious about making decisions for her future. She responded, ‘What’s the problem? I fall, I press the button and the men come and pick me up.’  As if they worked for her. She was so funny, but it was obvious that something needed to be done.

I wanted my mother to come live with me. She had been through so much in her life. She felt so unsettled; she and my father had been happy in their co-op on Ocean Parkway. But the years after he passed away were particularly difficult. My house, as it was, could not accommodate my mother’s ever increasing needs. So the question became, ‘How do we do this in a way that we can afford? What kind of changes can we make to our house that makes sense for our family?’”

(3/5) “Feeling At Home”

“I was always very much a part of the ‘sandwich generation’. My parents were older and the kids had accompanied us to doctor’s visits for a long time. Of course, a pizza lunch and rides on the machines on Avenue J were part of the bargain. After her surgery when I was three years old, my mother had to relearn to walk and talk and do everything from scratch. It was not unusual for her to lean on my father, my brothers and me to help her with things. At the same time, she was incredibly independent and wanted to do everything she possibly could on her own. My cousin tells this story about her: once, with snow and ice on the ground, she was dropping Anyu off in front of her building and wanted to help her get out of the car and walk to the door. Anyu insisted that she could do it herself. When it seemed as if she were about to fall my cousin rushed to help her. My mother responded, ‘I wanted to see if I could do it myself. Ok, at least I had to try!’ She was stubborn, strong and as independent as she could be…until she couldn’t be.

When we made the decision to have her live with us,  we considered everything she had been through. She had lived through Auschwitz despite the horror around her. She and her two surviving sisters, together with their young families, escaped Hungary during the Revolution in 1956. I couldn’t stand the idea of her living alone now, after all these years. Her socialization options, which would have helped her stay sharp, were limited because she suffered significant hearing loss throughout her life. Even If she made the effort to go downstairs and participate, she might not hear what was going on. I thought that in my home she would get more help and be more engaged, especially with the kids.

We talked about renovating the house for years. We talked about whether we should just renovate what we had or expand. We had to work out the fact that we needed to make changes to accommodate my mother but we didn’t want to jeopardize the value of our investment in our house. Fortunately, my husband came from a family where caregiving was the norm. He was supportive and agreed to move forward. So we decided to build a large ‘family room’ that would be a suite for her. We made a large bathroom handicap accessible. We widened the door frames for her wheelchair to get through. We installed a long ramp up the side of the house so she could get into the house. We built a deck right outside of the kitchen so she could enjoy the sunshine and have easy access to the Sukkah. Her room opened up to the kitchen so that she could be with the family during mealtimes.

I spoke to contractors, architects and did lots of research online. We did our best to make everything useful for her. Every detail– the reinforced walls so we could place bars for her to support herself, special small tiles so there would be no lip to get her chair into the shower, a lowered sink so that she could reach it with her chair. I really wanted this to be a functional space for my mother and make her life as easy as possible. We planned the wall space to accommodate her furniture. It was important that she feel “at home.”

We made the decision after two years of her living at Daughters of Miriam, and it took us about another year to get everything ready for her to be able to move into our house.

So many of my friends are now experiencing these kinds of issues with their parents. I keep telling them: it’s a slow climb but then, and just as suddenly, it’s a roller coaster drop.”

(4/5) “How Are You, Anyu?”

“Having her with us was not always easy. But it was lovely in many ways. I could spend time with her, not just taking her to appointments and dealing with all the ‘issues.’  And she could be with the kids. Every day when they came home from school they would rush in to greet her, ‘How are you, Anyu?’ and play games with her. As they got older and her health declined, it became more difficult. Sometimes she was unavailable to the kids because she was getting care. At times it was difficult for the kids to keep the noise level down in consideration of my mother’s schedule. That took adjusting because they always had friends at our house.  

Anyu was Hungarian and we felt it was important to have aides who spoke Hungarian so that she could be comfortable communicating with them. As she got older, though her English was not bad, she switched back to Hungarian more and more. We had a series of good aides and had one fantastic aide who lived with us for over six years. She actually left two months before my mother passed away. She was a member of the family. She helped out in the house too, because she was just that kind of person. She was a homebody and had lived with a Jewish family before. She would prep a lot of food and cook some of the simple stuff, and we all made the Hungarian dishes that meant so much to my mother. She learned from me, and I learned from her. Though Hungarian was my first language, she was essential in communicating with my mother, especially in times of stress. We came to trust her, and we were able to travel and leave Anyu with her.  She engaged my mother as if she were a member of our family. My brothers and their families visited and would bring anything that Erzsica, the aide, or Anyu needed. Having her with us was a much-appreciated gift. She was on the phone with me the day that my mother passed away. She was devastated.

It’s true what they say, that it takes a village. At one point we had our aide, and then a supplemental aide so that she could have a day off, a nurse practitioner, and a podiatrist all coming to the house. We had a hospital bed, a hoyer lift, oxygen tanks, and compressors. We even had an X-ray technician come to the house with a portable machine on a regular basis. Getting it all together, and keeping it all together, was a full-time job.

It was very disconcerting when my mother looked directly at me and asked ‘Where is Barbara?’ The first time it happened I went up to bed for a couple of hours. But then I got used to the ‘new normal.’ I learned how to bring her out of the confusion and remember who she was, who we were. The interaction was so helpful; it helped her stay Anyu longer.

We tried to include her in everything we could. Every Friday night I lit her Shabbat candles, she made the bracha. We would gather at the table, and after my mother couldn’t join us, my husband would lead us to her room and call out, ‘Anyu! Kiddush time!’ We would go into her room and make kiddush. Anyone who would come for Shabbat meals knew the drill. My son brought a bowl, full washing cup, and towel for Netilat Yadayim. During Chanukah my daughter lit my parent’s menorah in Anyu’s room. We tried to maintain the yiddishkeit in her life so that she had her culture, her food, her language, her family.

Having my mother in the house meant that we became family headquarters. We used to go to my brothers for family celebrations as well, but once my mother couldn’t travel, everything moved to our house. We were lucky to have birthdays, Thanksgiving, Mother’s Day, Chanukah, Yom Tovim, etc. all under our roof. This way Anyu could participate as much or as little as she could.”

(5/5) “Another Transitional Moment”

“During that I time, I didn’t do much to take care of myself. Sometimes I had the energy; sometimes I didn’t. That is what happens when you are wedged in between two generations. Their needs tend to come first. I remember, when my father was very ill, I was asked to become sisterhood co-president of my shul. At first, I thought to myself, ‘Yeah right. That’s the last thing I need right now.’ Then I realized, ‘I better do this because if I don’t I’m going to sink.’ I had to have something outside of my family life. Once the kids got older I thought about getting back to work. I returned to real estate. Over the years I’ve invested much of that nurturing energy into my work. I think that’s why I’m drawn to the business.

My mother came out of the hospital Motzash as my husband and son were leaving for Israel. They were looking at programs for my son’s upcoming year. The plan was for me to join them about ten days later. My mother was gaining strength every day, but I had my doubts. By midweek she stopped improving. On Monday morning, the day I was supposed to fly, I told everyone I wasn’t coming. My daughter was about to get engaged and the plan was to have the L’Chaim while both families were in Israel over Yeshiva week. Something in me knew.  I never packed. She was gone by early afternoon.

On the last day of shiva, I told my future son in law to go ahead with the plans. I told him, ‘You never know what life will bring. You shouldn’t wait. This is life.’ So they got engaged and had a L’Chaim in Israel. I met my machatanim, before they were my machatanim, for the first time during the shiva. The simcha was all on the cusp of this tremendous loss of my mother.

It was not easy to be in the house after her passing. I avoided the kitchen as much as I could; I love to cook and bake, but it was so hard to be near that room. I closed all the doors. I didn’t want to touch anything or see anything. There was just this heavy presence. There was so much tumult, so much happening at the same time. Even my mother’s aide leaving was a loss. She was a member of the family, too. It was a new ending because it brought home the fact that she was no longer needed.

I began to redirect my focus into my work. Someone asked me what I was going to do with that room and I answered, ‘avoid it.’ It still has many of her things but we donated all the medical supplies that we had to Camp HASC, a camp for individuals with special needs that my daughter had worked at.

When we were planning the wedding right after Anyu was niftar, her room became wedding central. All the gifts, wedding planning, and paraphernalia were situated in that room. It would have been the same had she still been with us. She would have loved every minute of it. Taking care of my mother was such a privilege. We were so grateful to be able to spend that time with her.

Sometimes I still have to sit down and catch my breath.  So much change in a relatively short time. I just needed to pace myself emotionally. Life’s ups and downs can be overwhelming. I do my best to maintain an even keel.

Fast forward two years and my kids are grown and out of the house.  My husband and I are talking about the future. Another transitional moment.”