יום חמישי, ג׳ תמוז תשפ״וThursday, June 18, 2026
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Barbara Diamond is a journalist living in Jerusalem, Israel. She has been a political activist on behalf of Israel and the Jewish people for over fifty years, having participated in political and humanitarian missions to Ethiopia, the former Soviet Union, China, and Europe to meet with world leaders on matters of concern. She has written over 100 articles for the Jerusalem Post and on her blog at The Times of Israel, hosted an English radio talk show in Jerusalem and continues mentoring others to pass on the torch of responsibility. You can reach her at barbara@thedementiadiary.com and visit her site at thedementiadiary.com.
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It has been a delight to receive letters throughout these three years from many of you sharing your journey or that of someone you care about.
For most of us, this is not pleasant to experience, but we understand that in a health emergency, this care is necessary. But they do not understand.
If we can love our lives until the very last moments, there is every reason to celebrate, and less reason for sadness.
Hubby is no longer at my side, and I feel comfortable speaking about his name now that he has passed.
We are not the same people we were when we went into the fray. For myself, I find that now I am quite prepared to express how I feel in situations where I probably should not.
A 96- year-old man, days before his life was to expire… still wanted to enjoy every moment of his life.
How is it possible that the earth still turns on its axis? Doesn’t everyone understand the void that now exists?
It seems to me that most people do not discuss the adjustment period after the death of a loved one. Hence, I am continuing to write this diary…just a bit longer.
Hubby’s wardrobe beckons to me daily. Because he had been a clothing designer, his legacy is partially the beautiful shoes, belts, jackets, custom suits, shirts, ties, and jewelry which he left behind. Little by little, I am finding worthy recipients of the most important items.
Once the person whom you loved fiercely enough to marry is unable to function as your partner in life…a deep mourning process begins. This period is incredibly difficult because those around the caregiving spouse or adult child do not fully realize the sadness one experiences from this ongoing loss.
Would I remember the emotions I was experiencing when I returned to Jerusalem and my daily routine? One must write down thoughts and emotions as the occur, or they float into the atmosphere, never to be fully captured in the future.
You would not expect me to be fond of a cemetery. It cannot seem normal. But I find comfort in knowing that this specific cemetery is occupied by many people whom I have respected and loved over the years.
As I pull out different suits of his which were stored in our downstairs bedroom, I am quite shocked to discover how many of them were veritable feasts for the moths.
Three weddings for the same two people, really is two more than necessary.
Many friends offered their condolences not only on the passing of my amazing Hubby, but also for the time which I would need to wait before the mourning period officially would begin.
Hubby was looking for sympathy. I felt that being sympathetic was not helpful. I wanted him to feel alive and not indulge himself that his end was near.
Of course, the family had wanted what was best for their father. They believed that their father was at risk under the care of the aid who had clearly acted irresponsibly on his day off. Still, Mom knew what was best for both her and Dad in these final weeks.
At the end of this experiment, she made the decision which would allow her to return to a reasonable quality of her own life, as Dad was declining further and further into his dementia and age-related issues. She has committed to keeping her husband at home, and with the best possible care that can be provided.
A panicked Mom called her trusted daughter who arrived like an angel at 2 a.m. to be with Mom and Dad. The aide returned in the morning, ashamed of himself, having somehow blacked-out, and waking that next morning. It would be a fair analysis to say that all-hell-broke-loose.
As she continued to share experiences of caring for her son, I also shared different chapters that I had written about caring for my husband during his decline. In spite of her belief that her challenges were unique, I had a chapter written for almost every problem she was facing.
The voice returned. Where is my Barbara? I responded again, I am here. No Hubby proclaimed, The other one! Barbara, my wife! She went to get my watch fixed. Where is she?
When observing the behavior of others, there are very real indicators of the onset of dementia. From personal experience, I feel the need to share a few examples with you.
Following my own suggestions to others, I wrote down all of the new issues that concern me about Hubby’s condition. One by one we discussed them.
Dementia begins rather benignly, with strange behaviors, memory loss and weird accusations. But with time (usually many years), the caregiver’s brain grows very tired from whatever is assaulting it, and is less inclined to look for solutions.
Nothing about this morning is upsetting for Hubby. That automatically improves our day immensely. As long as we are vigilant about giving him his dementia medications on time, he can remain on an even keel and quite enjoy his morning regime.
At the prior ceremonies after the immediate passing of the Queen, he did not connect to what was occurring. We watched the television, but he did not understand who, what, when, or why it was all about. Hence, I changed the program.
Would an older parent be able to understand when their mate is in distress requiring medical attention? Would they be able to use the Heimlich maneuver to save their spouse from choking on their food if/when swallowing becomes problematic?
One of the side effects of years of the Corona virus has been a decline in the availability of health care workers. Many qualified staff members went on to find other careers, as did those in the hotel or the restaurant industry. Those positions had to be filled promptly, and from the reports I have received, many nurses or aides in these facilities have very little background in nursing at all.
As I have mentioned in a previous chapter (Parallel Realities), Hubby has become very confused by the programs he sees on our television. They are too complicated for him to follow. He often thinks that they are in a different language, when they are not.
In all fairness, I do not kid myself that wrinkles are chic. I would never have worn linen in years past because it wrinkled. So, what has changed? Everything.
Recently friends caring for their loved ones have shared with me that their spouses too are talking about their two wives with the same name. Hubby definitely refers frequently to the other Barbara, which irritates me endlessly. Now that I understand that there is a universality to this behavior, I am giving it more consideration.
If one should find themselves with a doctor who is not sensitive to either the patient or to the family, unequivocally, I must recommend that the doctor be deleted from your contacts list.
The ride home, would be in the dark of night. The dirt road had no lighting. I was unwilling to return in a car with friends unless one of them was armed. No one thought to bring their guns to the wedding.
When we were young, we never believed that we would one day be 70 years of age, much less over 90. It all arrives too quickly. One day we wake up and wonder who the person staring back at us in the bathroom mirror, might be.
Why can I not get it through my thick skull that Hubby eats like a four-year old now? Pizza, cookies, candy, eggrolls, spaghetti, fruit, ice cream, would all suffice for him. But not for me, and do I not matter as well?
Even today at the age of 95, Hubby asks where his license is, as if he is about to fly the coop and embark on an adventure on his own. To tell him that he is too old to drive, would not be a pleasant task, and hopefully can be avoided.
For a very long time, twenty- or thirty-years employment in a corporation, resulted in the gift of a gold watch in appreciation. To those for whom the purchase of such a treasure was beyond their wildest imagination, it was very special and worn with great pride.
Hubby clearly was unwilling to trust her with the pills. It was predictable, as it had been twelve hours since his last calming medications had been ingested and they only last three hours.
Does the brain have different folders in it, like a computer? When one section of the brain is full after a number of years, does another memory section become available?
We will not even discuss the stains which are under the dining table from food accidents, which only compound the unique new decor.
Pasha is also the name of a beautiful butterfly which exists in the Middle East and Africa. I am quite sure that it not what Hubby had in mind. The word Pasha equated with powerful, and Hubby will retain that definition.
It was important that I began this chapter with the newsflash, or you might think that this chapter will reveal some secrets about the once teenage-heart-throb. Nope.
On occasion, Hubby decides to be an independent human being who resists my regimen and refuses to ingest even one more pill. I cannot really blame him as I look at my own selection of vitamins, prescribed meds and cure-alls and wonder how I will ever get them all down the hatch.
Hubby goes to his memory-day-care center, Melabev, and the staff there have mentioned his decline over the past six years. But somehow, the past year has been the worst. Of course, how foolish of me to have expected otherwise.
It is my contention that the exasperation which so many caregivers experience is a combination of exhaustion because of the physical necessities involved while being a caregiver, and the emotional gutting which is experienced from those we loved all our lives… who barely know us now, and are treating us poorly.
When I returned later in the evening, Hubby was in bed but wide awake. I asked him if he remembered his birthday party. He said no” I asked if he remembered the wonderful birthday cake with his picture on it. He said Yes! thus, a bit of the day was actually savored.
To add insult to injury, Dr. N. was concerned that Hubby jolted his teeth badly when he fell, and wants Hubby to eat soft foods for a few days to let the gums get over the trauma. Hubby is a difficult eater at the best of times, but he will likely be willing to eat ice cream multiple times per day to get some calories for subsistence.
At this point, Hubby is getting frenetic. His aide, Violet, has been working with me all day to ensure the meal goes beautifully and she is feeling stressed. We really do not need this drama, literally minutes before our guests are to arrive.
Discussing the conundrum with close friends has helped me to focus on what I do not want. I do not want an evening talking about our marriage and forcing our friends to sit through our stories, no matter how wonderful I may think that they are.
There is a distinct pattern of behavior for each individual, but even more fascinating is that others with whom we have no contact, who live elsewhere on the globe, eat different foods, have different lifestyles, experience many of these same behaviors.
Because our aide needs time off to be with her husband and to recuperate from Hubby’s constant requirements, she replaces herself with female friends from her social circle. Hubby doesn’t really mind, as they are young and usually lovely.
In our home, I have tried many different responses to the questions about a loved one having passed away. Bear in mind that whatever response I decide to utter is forgotten within a couple of minutes by Hubby.
It has been hard to train my brain to stay in the moment. I do this for my own sanity. Once the brain begins to spiral out-of-control, I can no longer function with the responsibilities that life has thrust upon me.
This is not the first time that Hubby has called me mama, although usually he self-corrects, and says Oh yes – I should not call you that! You are my wife.
Those of you who know me will be frightened by what I am writing, but I must insert here that I do not hate Hubby. I forgive him, over and over and over. I am fortunate that he still expresses his love for me, and when he does, I see glimpses of the man I cherished for most of our time together.
This morning, I began composing a list of Hubby’s needs which he expresses from moment to moment. Like all sufferers from this condition, he is able to identify what he wants, and yet is unable to resolve his need.
There is a condition called sun-downing in dementia. I truly do not understand it fully, but for many people with memory loss, when the sun goes down (quite literally), their level of anger, delusions, and animosity rises.
Normally, I would have winced at his display of impatience, but as we were in these long corridors, quite alone, it really did not matter. Scream away.
Only recently did I realize that Hubby’s aversion to broken cookies was deeper than even he could admit.
I went back to my cooking. I swear less than 60 seconds passed before he started the whole conversation once again. He had no recollection of my previous response. I repeated it just the same. It also had no long-lasting results.
I keep saying that I will straighten out my bed, my clothing and my room, but it is the depository of my exhaustion. If only I had a day with nothing else to do.
This was a very distressing situation. Hubby was holding his head as though it was about to split open. I called our private geriatrician who said he thought we should get Hubby a CT scan. Perhaps there was a bleed in the brain causing all the pain?
The minute the food landed on the table Hubby was in full rejection-mode. I placed a few chunks of potato on his plate, two pieces of zucchini and one leg of the chicken. What the hell is this? You expect me to eat this? It will make me sick!
You might be scratching your head (do diaries have heads????) and wondering why this irresponsible wife did not call the paramedics and rush hubby to the hospital for CT scans and MRIs. That would have been the proper approach for a younger and healthier person.
Dementia is a bear. The questions he is asking are valid. The conclusions are not.
On the one hand, I really do not mind if he is confused about these things. On the other, he is so anxious about the confusion that he tries to sort out the information by asking the same questions over and over again.
Last night, I asked Hubby if he remembered the film. He did not. Still, as the film progressed, he began to connect with bits and pieces. He always loved Streisand’s voice and it touched him once again.
You are a liar! was followed by more epithets and expletives that I would prefer not to put into print. This was coming from my beloved husband who treated me with respect and kid gloves for over forty years.
We constantly ask Hubby to tell us when he wants to rise up from the sofa or a chair, so that we can assist him. We remind him because we are programmed to do so. That is what normal people say to others, it is reasonable. What is not easy for caregivers to absorb, is that the person in their care will not be able to process the message.
It appears as though he is now unable to retain any new information. At the same time, he is still able to discuss his career from 70 years ago with a moderate amount of accuracy.
My mother never served me a meal like this! That is Hubby’s ultimate insult about a meal he is not pleased with.
Mrs. H. is very stressed at all the new responsibilities she faces daily. She shares with me that she believes in G-d. I suggested that she needed to bring that belief into her consciousness daily.
It is quite rewarding to sit with others who share their stresses, fears and problems and help them to move toward solutions. This is essentially why I write this diary.
After other dreams which have included a baby, I have concluded that Hubby and the baby are indeed one in the same. A baby is totally dependent. Hubby is now totally dependent.
Do friends who feel sorry for you suggest that you go to a therapist? Many of mine have.
Could it be an accident that a decision made 43 years ago to stand up against evil had a ripple effect continuing in our lives today? Perhaps this should not be taken for granted.
Hubby’s moment of adoration with the idea of renewing our vows may have come as a result of a dear friend who is also a Rabbi, who asked if he could look at our religious wedding contract.
Of course, I know intellectually that Hubby cannot help what he is saying. His brain is confused. Still the words are coming out of his mouth and this bizarre experience feels much like an out-of-body experience for me, being forced to listen to his comments.
Last night my dream was full of very strange stories and images.
It is quite possible that I could play the same video every day and he would enjoy it just as much. For a man with little patience (and a terribly short attention span), this is quite incredible.
Each specialist thinks his prescription is critical. You need to talk to a G.P. or someone well versed in drug interactions to look at the total patient.
Hubby was in bed when “M” left. When I returned from seeing her to the door, he smiled at me and said “I am sorry.”
At no time did I contemplate that he actually thought there were people sitting at the table with him as he was chattering away for hours. I thought the hallucinating had stopped when we corrected his medications long ago.
Neither Hubby or I could have survived another week of no sleep and stress. Time for creative thinking. Avoid the family doctor and go directly to the specialist.
This week communication has reached a crisis point. Whatever I say, regardless of how loud I speak, is met with confusion. He repeats words that I never said and everything spirals out of control.
Who could possibly believe the conversations that transpire with a person who has memory loss? Pretend that you are invisible in the room!
Only recently did I realize that Hubby’s aversion to broken cookies was deeper than even he could admit.
Hubby was a fashion designer in Europe for twenty years. His love of beautiful clothing will never leave him. When possible, I make an effort to find special clothing for him that helps him to feel good about his appearance.
As the days of this war proceed, possibly well-meaning people ask us to care for those who may be collateral damage. The actions of Hamas have made that quite impossible. The responsibility lies exclusively on their shoulders.
It was a day like many other Melabev days in the past. Hubby’s mantra has never varied. The recording in his head spews forth in spite of the fact that he actually enjoys the programming that Melabev offers.
Hubby is quite fed up with taking so many pills, and is beginning to refuse. We are grinding up some, hiding them in pudding or applesauce if necessary, and omitting the non-critical ones as per doctor’s advice.
The problem is of course that because Violet is sweet and caring, he misinterprets her kindness as a romantic gesture. Being a caregiver is full of unexpected challenges. I notice that she now sits on a different sofa when keeping him company. Smart girl.
A word of warning to all… Time Release medications cannot be chewed (or ground up for that matter!) Whilst it might never dawn on you or I to chew this yummy delicacy, there are times when Hubby cannot be deterred.
The last time I did this, I had to wait three hours in the clinic. The tears welled up in my eyes. It was the straw breaking the camel’s back. I am the camel.
A pot of coffee for the two of us, six gingersnaps and a buttered pita with jam ingested by Hubby, and I am now feeling marginally less destroyed.
It is impossible for anyone (even the best doctors), to know exactly which medication will fit which patient until they are tried. The dosage is also something which must be determined with great care.
He looked at me with pity mixed with disdain and said, You are a foolish, foolish woman. I felt like a deflated balloon.
What I did not realize at the time, is that when a man buys his wife diamonds or a fur coat…it is not really about her. It is about him. The husband will be admired for being generous to his wife and for being in a position to give her luxuries.
If any human told me what to do nine times a day, I am quite sure that I would be very irritated.
Hubby’s habit of studying the back of the pita for black spots requires that he turn it upside down to do so. The jam hence falls onto his lap.
