Mickey Berkowitz's revelation reminds us it's time to talk about dementia
- Dr. Nati Blum
- Published on ICE
- No comments
The film that aired this week, revealing basketball legend Mickey Berkowitz's struggle with dementia with the bodies of Louis, touched a raw nerve in many families. Behind the diagnosis are not only the sick person, but also partners, children, and friends who are forced to learn a new reality. When do you tell? Who? And what is the price you pay when you try to hide?
There is something particularly moving about seeing a man we remember at the peak of his strength struggling with an illness that gradually alters his abilities. This week it was Mickey Berkowitz, one of the greatest athletes Israel has ever known, whose struggle with dementia with Lewy bodies was exposed to the public.
But behind the famous name lies a story that happens in thousands of homes: the moment when you realize something has changed. At first, these are often signs that can be explained. Forgetfulness, confusion, a change in behavior, difficulty performing a once simple action.
In the case of dementia with Lewy bodies, the picture is even more complex: the disease can manifest itself in significant fluctuations in alertness and thinking ability, visual hallucinations, sleep disturbances, and symptoms reminiscent of Parkinson's. Sometimes memory is not the first noticeable sign.
This is one reason why diagnosis can be complex. The symptoms can resemble Alzheimer's, Parkinson's, or other conditions, so a comprehensive medical evaluation is required.
The moment the diagnosis has a name
Receiving a diagnosis of dementia is a moment that divides life for many families into "before" and "after." On the one hand, there is sometimes relief: finally there is an explanation for what is happening. On the other hand, much more frightening questions come: What awaits us? How quickly will the disease progress? How much independence will remain? How do you tell your children and grandchildren, and should you even tell your friends? And here begins a journey that does not belong only to the person who has been diagnosed.
The spouse gradually becomes a caregiver as well. The children take on new responsibilities. Work and family routines change, and sometimes relationships with friends too. In dementia with Lewy bodies, coping can be especially confusing because functioning may change even from day to day. A person can be clear and engaged on one day and much more confused on another. Family members who are not with them on a daily basis may actually see a "good day" and think that the primary caregiver is exaggerating the difficulty. This is a phenomenon that is also recognized by professional bodies in the field.
To tell or to hide?
One of the painful questions that comes after a diagnosis is who to tell. The tendency to hide is understandable. The family wants to protect the person, their dignity and their privacy. There is a fear that friends will start talking to them differently, that they will feel sorry for them or that they will simply distance themselves.
In the case of a well-known person, there is also a public dimension: Does the public have a right to know? Will disclosure help raise awareness and make things easier for the family, or will it rob the person of their privacy? There is no single right answer. No one is obligated to make a medical diagnosis a public matter. But there is a big difference between maintaining privacy and a situation where the secret begins to isolate the family.
The price of the secret
As the disease progresses, the concealment itself may become an additional chore: people make up reasons why they don't attend meetings and events. Friends don't understand why their behavior has changed and may become offended and distance themselves. The spouse is left alone with the burden of care. Family members are afraid to go out in public places in case "something happens."
The sick person himself gradually loses precisely the social circle he needs. Therefore, sharing does not have to be "exposure." You can start with a small circle of people you can trust. And sometimes it is worth telling friends explicitly: Don't disappear. If he repeats the same question, answer it again. If she gets confused, don't embarrass her. Keep inviting even if sometimes the answer is no. Talk to the person - not about him.
And what do you do the day after the diagnosis?
First of all, don't try to solve the whole future in one week. It's worth getting professional information about the specific type of dementia, understanding which treatments can help the symptoms, and gradually building a family and professional environment. In the case of dementia with Lewy bodies, an accurate diagnosis is especially important because some of the medications used to treat psychiatric symptoms may cause severe reactions in some patients.
But alongside medicine, you need to remember life itself. Keep going to your favorite coffee shop as long as you can. Listen to music, meet family, go for a walk, laugh, take pictures, hug. Don't turn your home into a waiting room for the disease to progress.
And most importantly – don’t leave the primary caregiver alone. He may not have received a medical diagnosis, but his life also changed that day. The exposure of Mickey Berkowitz is important not only because he is one of our greatest sports heroes. It is important because behind the famous person many families can suddenly identify with themselves.
Dementia is not shameful, nor does it erase in one day the person who was there before. Between complete concealment and full disclosure, there is a large space of respectful, sensitive, and tailored sharing for every family.
And sometimes the most important sentence that can be said after the diagnosis is actually the simplest: We don't know exactly what this road will look like, but we don't have to go through it alone.
You are not alone - EMDA is here for you!
The EMDA Association It is the central address in Israel for families dealing with dementia and Alzheimer's, and offers a package of information, guidance and support that includes a free information center and telephone counseling. 8889*, dozens of support groups across the country and on Zoom, professional guidance for families, home visits, courses, lectures, information on rights and practical tools for daily coping with the disease.
It is important to remember that family members who provide care also need support, information, and a listening ear, and there is no reason to face this complex path alone; additional information about the disease, services, and assistance options can be found on the EMDA Association website - the address for families with dementia and Alzheimer's.