Dementia: Finding happiness beyond the point of no return

Barbara Diamond gets personal in her blog, Thedementiadiary.com

 CELEBRATING BERNARD’S 94th at home in Jerusalem. (photo credit: Bernard and Barbara Diamond personal collection)
CELEBRATING BERNARD’S 94th at home in Jerusalem.
(photo credit: Bernard and Barbara Diamond personal collection)

Ten years ago, Barbara Diamond became aware that her husband, who recently celebrated his 95th birthday, was having small TIAs (trans ischemic attacks), which are like mini-strokes.

“Many people get them, but that doesn’t necessarily mean they’ll get dementia,” explains Barbara as we sit down to talk in her beautiful home, overlooking the walls of Jerusalem’s Old City, which she continues to share with her husband of 50 years. 

“But when the TIAs happen frequently, as in hubby’s case, what appears to be happening is that each attack was bringing cumulative damage to the brain,” she said.

Barbara got to work, doing all that was humanly possible to create stability in their home life here in Jerusalem

“We created a chart for all the things he has to do during the day. We started it because hubby had two bouts of cancer and the care is so complicated. When you take the pills – after radiation and chemo, the chart helped to make sure we did everything on the correct days,” she explained. 

 STANDING PROUDLY with Sarel, where he volunteered with the IDF for many summers.  (credit: Bernard and Barbara Diamond personal collection) STANDING PROUDLY with Sarel, where he volunteered with the IDF for many summers. (credit: Bernard and Barbara Diamond personal collection)

Since then, Barbara has created charts so that hubby can check off his daily tasks as he does them. “He feels he’s in control, which is a good thing,” she said.

“You want to feel you’re not a victim, but in control of your life.”

Barbara Diamond

The Diamonds were blessed to have adored each other, raised a family, and worked side-by-side for decades. They ran a chain of upscale fabric stores in California, with a flagship store in exclusive Beverly Hills. But after setting eyes on each other in an airport lounge – she was 25, he was 45 – and announcing their engagement soon after, her parents were among quite a few who thought the marriage would not last.

People worried about what would happen in old age – taking care of a man 20 years Barbara’s senior. “But he was into body-building, taking great care of himself, and stopped lifting weights in his early 80s after dropping a barbell on his throat – which caused irreparable damage to one vocal cord,” Barbara recalled, adding: “The operatic voice was damaged,” but the singing and the conversations continue. 

While the daily schedule chart is a source of nonstop discussion for her husband, Barbara herself realized that just as patients need structure, she needed a new structure to make their lives more harmonious and calmer. 

“You want to feel you’re not a victim, but in control of your life,” she explained. Barbara, who maintained an active presence for years as a political commentator and blogger for the Times of Israel, turned her pen in the direction closer to home. Two years ago, she began writing chapters for what she intended to be a book about dementia. 

On January 1 this year, she launched her blog: www.thedementiadiary.com, in order to share her scenes from a life gone awry, addressed to husbands, wives and family members struggling with a phase of life they never could have imagined possible. Or in Barbara’s own words: “Definitely not a journey for the faint of heart.”

In “The Knife,” a recent June 19 blog, as Barbara is about to go out to enjoy an evening of socializing with friends – a very rare activity these days – hubby becomes accusatory. He is sure that his 75-year-old wife is whooping it up and having an affair. Such is the dementia spouse’s reality.

“There was no anticipation of drama when I received the lovely invitation to a garden party for a friend. It included hubby, but I RSPVed that I would attend alone. He might have enjoyed it, but I would have been concerned as to what inappropriate topics he might decide to expound upon… and gave myself the gift of an evening with friends… unaccompanied.” 

Without providing spoilers, with a title like “The Knife,” we can guess that things are not going to end up well. Suffice it to say, Babara has been through so many crises with hubby, she has learned, with finesse, how to handle the new abnormal. “Adjusting to the world of the irrational,” Barbara calls it, while at the same time she is looking for serious answers, for creative solutions, and most of all, for peace of mind. 

Barbara helps others realize that they are not alone in feeling confused, exhausted, overworked and resentful of taking care of a loved one who no longer can share the responsibilities of life, or share the friendship of a lifetime

Caregivers tend to neglect themselves terribly. When you’re responsible for somebody else, you haven’t got a lot of energy left for yourself. Fortunately, I’m pretty healthy but many out there don’t find the energy for themselves,” Barbara said.

“Caregivers tend to neglect themselves terribly. When you’re responsible for somebody else, you haven’t got a lot of energy left for yourself. Fortunately, I’m pretty healthy but many out there don’t find the energy for themselves.”

Barbara Diamond

No subject too sensitive to cover

Barbara guides the reader through what to do when you first notice the first signs of a loved one’s mental deterioration, to one of the hardest decisions of all – hiring around-the-clock care when it is no longer possible to shoulder the burden alone.

“Noticing the TIAs, I took hubby for assessment. In Israel, you are referred to a geriatrician, which is very important. You do need someone who really understands the aging process, and dementia is often a side effect. Going to a geriatrician, a specialist in the aging process, you find out what’s possible and what’s not, what changes can be made, what medications can help. And that’s really critical,” she said.

With the diagnosis, Barbara explained, the geriatrician had the couple come back every six months to measure the inevitable decline. “What happens is that the caregiver walks in with a list to explain the changes in behavior, and what to do about them. 

“It’s very hard when we go to a doctor. I want to maximize the 30 minutes we spend with him. If we do it verbally, hubby goes into debate mode, which is just a waste of everybody’s time. 

Tapping into happiness

The most important thing, Barbara discovered, was that people with dementia can be happy. “They don’t have to be aggressive and miserable, but if we as caregivers don’t resolve their unhappiness or boredom for them, and help them have more quality of life, then at the end of the day, we suffer. By making them happy, we are doing ourselves the greatest favor of all.

“Hubby had an operatic voice, always loved to sing, and be the center of attention,” Barbara recalled. “When I put on Frank Sinatra music one day during an especially trying moment, I saw a transformation. He became the entertainer; he became Frank Sinatra. I immediately created an account on Spotify and added Dean Martin, Sammy Davis Jr., and music of the Sixties, which is easy to sing, pleasant and sweet. He can sing for three to four hours at a time. Actually, he confiscated one of my cell phones so he can sit with it next to him. It creates incredible joy.”

Barbara did her research and discovered that the side of the brain that works with speech is in a different part of the brain from the area that works with music, and doesn’t get affected by dementia in the same way. “Singing brings back memories and emotion, of being happy, in love, young and courting. He can be crooning to someone he barely knows,” she laughed.

The seismic shift of bringing in a caregiver

Barbara returns to all seriousness. “You’re gradually taking on whatever your partner used to do in the home – as well as the responsibilities of doing the caring. But when the loved one really can no longer function, you as a caregiver can’t function from mental exhaustion.”

Barbara recalls the time when she admitted: “I have to get help,” as the moment that she took the first step toward redeeming her own life.

“For me, it was about three years ago because my husband had a fall outside, fractured his hip, and literally could not take a step. After he was rushed to the hospital, the doctors said they were going to send him home regardless. All of a sudden, he was going to be bedridden while he recuperated. That was the beginning of hiring someone to help me, who knew how to help someone in this condition.”

That was also the beginning of accepting how a caregiver benefited Barbara as well as him.

“It saved my life,” Barbara admitted. “When you know that you’re drowning, and you’re having panic attacks in your sleep because you’re suppressing the stress, you have to admit you’re taking on more than you can bear. It happens to almost every caregiver of a loved one. It’s my goal through The Dementia Diary to help them accept that the life of the caregiver is as important as the life of the person for whom they are caring.”

With more than 15,000 clicks and 500 subscribers to The Dementia Diary, Barbara receives many letters from readers who feel safe sharing what they’re going through. “When someone says ‘I have no life,’ I understand, because that loved one needs you every second of the day.

“I actually wrote a chapter called ‘When did I lose we?’ You end up giving everything and there’s nothing left over. When you admit you need help, you begin a process of reclaiming your own life, which you had given up in the caregiving process. You can go out of the house, go shopping, go visit a friend, and before you know it your life begins to resemble that of life where you want to wake up in the morning.

“The reason I used ‘hubby’ throughout is not to think about my situation. I wanted The Dementia Diary to reach a universal audience, because what I have experienced is not so unique; the things I want to share are meant to save lives emotionally and physically.

“He was a dynamic, involved, committed husband and that is why after a long marriage your mate becomes an extension of you somehow. When you’re caring for them, you’re caring for yourself. That person has been there for you, been your strength, enriched your life – how could one walk away when the going gets tough? This is a commitment. Someone once asked me what was the most important word in the caregiving vocabulary. I answered: ‘It’s commitment.’

“He was a fabulous partner in the businesses we ran together. Hubby went to work in the clothing industry at age 14 because his parents needed his wages. He was self-educated, worked his way up in the fashion world, and learned everything there was about pattern-making, draping, tailoring, sketching and fashion design. He lied about his age, pretending he was 26, and got away with it to become a fashion designer in Europe, working for 25 years for a company that had 4,000 employees and created four collections a year. 

“He had just come to America when we met. He was about to work in New York for the designer, Geoffrey Beene, and after we got married, we got into selling European textiles in the Los Angeles and Beverly Hills area, expanding into three locations in California and selling the most beautiful fabrics used by the haute couture designers of Europe.” 

“For years, when we lived in California, he joined me in political action on behalf of the Jewish people. He volunteered to do Israeli Army duty each summer in the Sarel program. In Russia under the eyes of the KGB, we met with the refuseniks and he had tremendous courage. 

“He stood up with me against the neo-Nazis in Chicago’s Marquette Park. Hubby was a boxer when he was young, and he was always prepared to put himself in harm’s way to stand up for what was right. 

“We were with the Simon Weisenthal Center, invited by China to a state reception to sit down and open a conversation about American Jewry. It was the first time that China was courting American business people. China was looking to open up relations and we were in retail. Hubby spoke before the Chinese Communist Party and said: ‘If you want to do business with American Jews, then the first thing you must do is recognize the State of Israel.’ 

“I don’t think I’m exaggerating when I say a week later Israeli’s foreign minister David Levy was walking through the Forbidden City and celebrating China’s recognition of the State of Israel.”

We’re sitting at Barbara’s dining room table, with cooling tea, loose photographs, and cookies between us, surrounded by the paintings of contemporary Israeli artists and classic European sculptures, collected over a life well-traveled and well-lived. Steps away, in the living room hubby sits quietly with Violet, his devoted caregiver. 

Barbara points out that there is much to be done here in Israel for families struggling to cope with their loved ones with dementia. Besides Violet, Barbara is especially grateful to Melabev, a daycare facility with branches in several cities, where members can enjoy their lives in good company, freeing up family members to reclaim lives of their own. 

Upon discovering that many Melabev staff worked for low or no pay during the COVID pandemic, Barbara initiated a fundraiser for their branch in Talpiot – a center catering to English speakers. “We had two years of COVID, when no charities were receiving much support and our loved ones couldn’t go to Melabev. But what was amazing was that the staff made Zoom events for its members, to entertain them and keep them connected throughout the lockdowns. 

“I discovered late in the day that the staff was paid very little. They did it mostly out of love, from their hearts, and I really wanted to show my appreciation to them, to give them kavod [recognition] for the amount of time they gave to our loved ones.”

Barbara Diamond has published 35 chapters on www.thedementiadiary.com, with more than a hundred short chapters waiting to be uploaded. An index of subjects helps browsers select which chapters they might like to read first. A resource section offers where to get help.

The writer is an artist and author of the memoir, The Wagamama Bride: A Jewish Family Saga Made in Japan. 

Help for caregivers

Melabev co-founder Leah Abramowitz has worked in gerontology for almost 40 years, providing individual counseling, group work and organizational projects. A busy octogenarian herself, Abramowitz continues to lead classes for caregivers, sharing knowledge and helping resolve dilemmas that can enhance the life of caregivers, and give them the power and will to carry on. As the 2019 recipient of Nefesh B’Nefesh’s Bonei Zion lifetime achievement award for her outstanding dedication to alleviate the suffering of families struggling with their elderly loved ones, her focus remains on caregivers inside and outside the family.

Here are Abramowitz’s top tips for caregivers:

  1. Take care of yourself. The first and most important one. Don’t become so entirely taken up with your care recipient’s needs that you neglect your own, such as meals, social life and opportunities for ventilation.
  2. Remember that patients are not acting as they do dafka (with an in-your-face attitude), but rather because they are suffering from a disease, just as a stroke patient is not responsible that he can’t move his right arm.
  3. Some of the behavior manifestations that are so difficult to experience are expressions of their frustration, confusion and fear, which includes fear that you’ll abandon them or become angry). Some behaviors are a need to regain some control in their lives, so that if they refuse to eat, for example, that at least is one way to express their autonomy, that they’re in charge of something.
  4. People in this category have cognitive problems, their reasoning is off, but interesting enough, like babies, their emotional abilities are much keener and, just like a blind man hears better, they’ll pick up on the hidden anger you thought you were hiding so well.
  5. Share and get help. Find out what services are available and make use of them. Similarly, don’t continue to protect your adult children like the archetypal good Polish mother. This is their chance to share the burden, unload, give them an opportunity to pay back, and finally perform honoring and revering parents, in its fullest meaning.

In addition to the support groups currently meeting in Yad Sarah for the spouses or adult children of dementia patients (in English and Hebrew), Abramowitz and her co-group leaders offer a course for foreign workers in English, which doubles as a support group for these paraprofessionals, who often work alone in the homes of elderly handicapped. Yad Sarah offers a team of volunteer social workers, psychologists and specialists in the field of aging.

Similarly, through the Institute of Studies on Aging at Herzog College, Abramowitz runs numerous courses on theoretical subjects, as well as practical ones, for professionals, which are scheduled to begin again after the high holidays. For information on the support groups, call (02) 644-4575; for the foreign workers course, call 054-439-9278 and for the Herzog courses, visit their website.

Leah Abramowitz is the author of Aging in Wellness and Adversity, 25 stories that offer glimpses into ordinary families that grapple with elderly family members struggles with dementia.