Grief in Process

Back to (a New) Normal

November 3rd, 2025

I am pleased that Miklos is slowly returning to about the same level of physical function as before the traumatic days after his surgery. There still seems to be a little more difficulty with daily tasks, and more frustration when those tasks don’t come easily. He still sleeps a great deal. That, I am told, is a normal part of the disease. But now he is once again sleeping only twelve to fifteen hours a day rather than eighteen. He talks about being alive — and being happy to be alive.

He takes a short walk every day, and usually completes all of the exercises prescribed by his Physical Therapist and Occupational therapist. Sometimes he postpones them until the last possible minute of the day.

After acute kidney failure, many patients never return to the same level of function as before. Fortunately, Miklos has. It’s hard to tell whether his cognitive function has similarly returned to the pre-anesthesia, pre-morphine levels, because it has been a while since he was given a cognitive test.

At his post-op with our primary care physician, he could correctly identify the month, day of the week, and year, but she didn’t ask other questions. However, when his Physical Therapist was checking him out on her last post surgery visit, he had more problems. He still knew day, month, and year, but he could not remember socks, blue, chair. Even when she gave him hints — a piece of clothing, a color, a chair. I am not sure he was really hearing or understanding the test. It doesn’t really matter whether it’s all a short term memory problem or a cognitive problem. It means that his mind is slipping away.

I am regaining my energy. The whole ordeal took a toll on me as well. We are living through such uncertain and stressful times in our household and in our world. I stop and breathe deeply. I walk and connect with nature. I need to keep myself calm so that I can comfort and calm Miklos’ anxiety.
The Rest of the Story

October 22nd, 2025

Finally, the laxatives began to work, the pain medication caught up with the pain, and Miklos was able to get some rest. On Monday morning, we were visited by the social worker who gave us the impression that if he were not discharged by five PM, he would stay for another night.

At 4:45, the nurse announced that he was going home. I said, “No, he isn’t.” It was too late in the day for me to properly prepare for him. He was still listed as a fall risk, and he was getting up at least once on hour to go to the toilet. I doubted that I would have been strong enough to help him up if he fell. He was still catheterized, I had not been adequately instructed on how to care for the catheter.

The social worker stopped by on her way out of the hospital to say that since he was deemed medically stable by the hospitalist, insurance might not cover an additional night. (We haven’t seen the bills yet, so I don’t know if that is another battle I will have to fight.) When the night shift social worker came on duty a few minutes later, we again explained the situation, and she intervened with the doctor.

I saw that Dr. Lieb had scheduled his post-surgical check up for a date three weeks away. I immediately emailed him and asked if he really expected Miklos to walk around with a large bag of urine hanging outside his pants for three weeks. He was appalled. No one had informed him that Miklos had been re-admitted to the hospital.

Miklos now has a home health nurse visiting weekly for the next few weeks, and a physical therapist. An occupational therapist came to assess his needs, and said that he was sufficiently independent and that he didn’t require any of her services. She added that she was sorry because she thought that he would be fun to work with. Everyone’s favorite patient was back!
Traumatic Week

October 20th, 2025

Miklos had surgery scheduled for his recurring bladder cancer. Because he has difficulty with the office procedure, he was scheduled for a short stay hospital procedure. That way, he could be completely anesthetized for the surgery, rather than only have local anesthesia.

Before the surgery, he had multiple visits to check on his health — a check with his urologist, a perioperative check with an EKG, a stress test, and a general check-up with his primary care physician. He passed them all with flying colors.

We arrived at the hospital early in the morning, and Miklos was sedated before he was rolled to the operating room. The surgery went smoothly, with no complications (Dr. Lieb is an outstanding urologist).

Miklos returned to the room after he regained consciousness, and after he rested a bit and had his vital signs checked, he was discharged and we went home.

Then the problems developed. Miklos had insisted that the catheter be removed immediately after the procedure. The staff should have determined that he could urinate without the catheter. He couldn’t.

He slept the rest of the day, and refused any food and resisted water. The next day, he got up, but didn’t get dressed. His caregiver tried to give him some soup for lunch. He took three small bites and went back to bed. He refused water because he felt that his bladder was already full. He went back to bed and tried to sleep.

About seven o’clock, he came down stairs and insisted that he needed to be taken to the hospital because he was in so much pain. He was admitted to the emergency department. By this time, every movement, no matter how small was agonizing. He was catheterized and given an IV.

His first blood work came back. He was so dehydrated that he had gone into kidney failure. His X-ray indicated that his bladder was so distended that it was compressing his other organs. His bowels were impacted both because of the dehydration and the compression from the bladder. The liquid in his catheter was dark red, much more blood than urine.

I have probably given much more detail than anyone needs to read.

Of course, Miklos was admitted to the renal ward of the hospital. There is a catch twenty two, of course. Miklos obviously needed a great deal of pain medication, but the medication increases constipation. The hospital staff had a hard time working out the balance.

He had been admitted early Saturday morning, and on Sunday morning, he seemed to be improving. He was still catheterized, and but there was much less blood. His kidneys were once again functioning normally. He was still constipated.

At this point the staff got the balance wrong. In order to ease the constipation, they didn’t adequately control the pain. He was moaning and groaning and sometimes screaming so loudly that he could be heard throughout the whole ward. We begged for attention.

By three o’clock, he was praying to be dead because the pain was unbearable. He asked if someone could shoot him in the head. My daughter speculated that his pain tolerance may be lower than average because of remembered trauma. Everyone’s favorite patient was cursing the CNA because his pain was so intense.

I will continue this tomorrow.
Anniversary

September 20th, 2025

We have been married for sixty years. It’s hard to imagine. We celebrated that milestone with our daughters, grandchildren, niece and two couples of very close friends. Who knows whether we will have a sixty-first anniversary.

As I was listening to the other members of my care-givers support group, I realized how lucky I still am. Miklos is continent — I don’t have to deal with Depends. Miklos is steady on his feet. He hasn’t had a fall since 2017. His sense of humor is intact. A one-liner for every occasion. Miklos is rarely angry. He is incredibly loving.

In the spring, his health seemed to be failing, but now he seems to be on an even keel, a very slow decline. I am no longer always wondering whether this is the last trip, or the last new shirt. I am very hopeful that he will continue in very good health for many years. I am hopeful that he can still share life cycle events with the family — our granddaughter’s college graduation. Possibly the marriage of a grandchild. Our youngest one’s bar mitzvah is only five years away . He may still be with us. But a lot can happen in that time.

He could go into a downward spiral at any time. But there could also be a break through in dementia care — a treatment that could slow or even reverse the symptoms. None of us really knows what our tomorrow will bring. Those of us who care for people experiencing dementia may be more aware of the tenuous hold we have on the future than most people.

It is a constant reminder to be grateful for the day, and to savor every good moment.
I Really Blew It!

September 16th, 2025

Miklos and I were taking our daughter with her young son to celebrate her birthday. She choose a restaurant that was walking distance from her apartment, and that we could reach without driving through the financial district in San Francisco. Unfortunately, my GPS gave me the shortest route rather than the fastest.

I was stuck in heavy Friday evening rush hour traffic. Miklos was not at his best. He was reading every sign, sometimes in Hunglish (reading the English word using the Hungarian phonetic system). Sometimes, he would mumble nonsense syllables. Sometimes, he would deliberately change the words around to be funny — and a couple of times, he actually was funny. Most of the time he was just annoying.

And he wanted to tell every driver on the road how to drive, including me! It was all very distracting to me as I was trying the navigate the city traffic. It was exhausting.

Unfortunately, it didn’t end with dinner. Our daughter suggested that instead of having dessert at the restaurant, we could go to a nearby ice cream store that has really interesting flavors. I don’t think Miklos heard or understood what was going to happen.

I found a very convenient parking place, but as I started to pull in, I noticed a sign. I paused so that I could read the sign and make sure it was a legal parking place. Miklos was agitated and asked “What on earth are you doing?” I tried to tell him, but he couldn’t hear and understand. He kept being rather agitated. Our daughter spoke up from the back seat, saying, “Just let Mom drive.”

Then he looked around and said “What are we doing here? This isn’t a safe area.” It was a safe area — just an urban rather than a suburban area. It was a typical urban neighborhood — shops and offices closed for the weekend, a convenience store, apartments and the ice cream shop. There were pedestrians, including families and women walking alone and not seeming very apprehensive.

When we got the the ice cream store, all the tables were taken by lovely family groups — not a sign of a threatening person anywhere. Fortunately, one group was leaving just as we got our ice cream, one of the tables was vacated.

We dropped Corinna and Arlo at their apartment, and began the drive home, Once again, Miklos provided a non-stop commentary on all the drivers, most especially me. It was exhausting. As we neared home, I took one turn too quickly and hit the curb — not something I do very often, but I was very tired, and tired of being criticized and distracted.

Miklos shouted, “What’s the matter, don’t you know how to drive anymore.” And he continued in that fashion until I was ready to pull into the garage. I stopped as the garage door was opening and slammed my hands on the wheel. I said, “Just let me drive. Leave me alone.” He did. He got out of the car, slammed the door, and went into the house, leaving me to gather up his jacket and all the left-overs he insisted on bringing home.

It was not my finest moment. I know that his anxiety and even his constant babbling are part of the disease. It is not his fault. I remind myself of that often — It’s not his fault, he’s doing the best he can. Sometimes, it’s just too much.

A few minutes after I came into the house, Miklos came to apologize for losing his temper, but not for the back-seat driving that had caused me to lose mine. I also apologized. He had probably forgotten by the next day.
Everybody’s Favorite Patient

September 11th, 2025

My husband has a remarkable ability to become the favorite patient in almost every medical office he visits — and recently there have been a great many. Our dermatologist says he can come visit anytime. Every time he has been there, the whole staff is laughing about his silly jokes for the next week.

As I mentioned, his urologist and he have a very great mutual admiration society. He is developing the same sort of relationship with the dentist who removes the roots of his teeth that have broken off — four in the last two months.

He charms the MAs by complimenting their smiles, or the colors of their scrubs. He finds something nice to say to everyone in the office. As you can imagine, those compliments are always appreciated.

I feel very fortunate that so far, at least, my husband’s dementia is not making him angry. I have read about so many people trying to care for a spouse who has become hostile towards them and everyone else. That would make life so very difficult for the care giver.

As I have speculated before, perhaps as our social filters change, we just become more of who we really are. For much of his life, my husband was so invested in his work that he had little time for anything else. Now that all he has is time, he fills it with acts of kindness. What a great blessing.
Cancer Recurrence

August 30th, 2025

Miklos has had three prior hospitalizations for bladder cancer. The first was as an outpatient, and he was released the same day. The other two have required hospital stays. Since 2010, his regular cystoscopies have always revealed some new polyps or cysts, but they have been small enough to be shaved off in the office.

This time was different. The cancer is back in a particularly vicious form — cysts that will begin to bleed if they are not removed. The problem is that at 88, Miklos may not be a good candidate for surgery. We are awaiting a stress test, which could not be scheduled until mid-September, days after his surgeon had hoped to perform the operation. We are on a waiting list in case there are cancellations before our scheduled date.

We are fortunate to have a very kind as well as capable surgeon. When I asked whether a surgery center would be possible, he replied that they are fine if everything goes well, but if there is any sort of complication, a surgery center can’t handle it. He said that Miklos is too important to him to take the risk. He wants to be sure that he has the best anesthesiologist, the best surgical nurses, and the best possible team to take care of him.

Miklos does not seem particularly stressed by the news. Perhaps he doesn’t fully understand the danger. Perhaps, he just trusts Dr. Lieb to make everything come out well. The two of them definitely have a mutual admiration society. I share in his admiration for Dr. Lieb, however, I am feeling the stress.
A Very Good Day

August 26th, 2025

One of Miklos’ very good friends moved to Portland, Oregon a few years ago. Bruce was one of the founding members of his covenant/discussion group. Because they were close, we invited them to stay with us at Depoe Bay.

They arrived mid-afternoon on Tuesday. Colleen and I took a walk along the cliffs around the resort, watching the birds and the seals, and looking for whales. We left Bruce and Miklos to talk.

Bruce, in some ways, has considered Miklos his mentor in theology and philosophy. He has been saddened by the deterioration of his mentor’s mind. But he told me later in the evening that Miklos had been able to focus and really discuss process thought in a cogent and profound manner. He said he seemed much better than when we had stopped in Portland three or four years ago.

His impression of their discussion confirmed my sense that Miklos still has those thoughts, but that he has great difficulty bringing them out of his brain and putting them into words. I had really hoped that spending time with Bruce would stimulate his thinking, and apparently, it did.
Road Trip

August 15th, 2025

Our destination for our summer get-away, Depoe Bay, OR, is not readily accessible by plane. We could fly to Portland, rent a car, and drive three hours. Or possibly fly to Eugene, rent a car, and drive only two. So I decided that we would take a road trip. It’s my kind of travel more than Miklos’.

I like to stop and explore a little; he focuses only on the destination. I know where my travel style developed. My dad (stepfather) would stop to read every historical marker along the way to where ever we were going. I always see a side road and wonder where it leads. I am curious.

Miklos is anxious, and always has been, and just looks forward to arriving safely at our destination. I drive to please my husband — directly through in the most expeditious manner. I do not pass go and collect ‘$200, and I do not stop for points of interest in between.

When he was in the car, with nothing particular to do besides sit and see the scenery passing, Miklos was surprisingly calm. He was also more aware of his surroundings than usual. He tends to be tunnel-visioned, looking neither to the left nor to the right. It made him a bad driver when he was still driving. On this trip, he seemed to relax, look around, and enjoy the incredible natural beauty.

Even when I am driving, I am able to point out sights worth seeing. On this trip, Miklos could also point things out to me. I think that is a first ever.

While it is hard for him to hear, and especially because his better ear is his right, we still managed to have some good conversation. He sometimes opines that it would be better if we were in Great Britain where I would be talking toward his better ear when we are driving.

Because Miklos has difficulty adjusting to changes in time zone, and because he did well in this car trip, I will plan for more of these. The change of scenery stimulates his mind. The resorts we usually go to are similar enough to one another that they seem familiar and not too confusing.
Rotten Teeth Vs. No Teeth

August 13th, 2025

I have talked before about Miklos’ bad teeth and that we were expecting extractions. Recently, two teeth broke, and he saw Dr. LaCrampe, who held out more hope that he might be able to get some dentures.

As I have said, I have worried about how he would look without teeth. I was pleased to see that he actually looks better with a big gap in his smile than with an ugly, rotten tooth clearly visible. And I know this is my problem, being embarrassed on his behalf for his toothless smile.

Other people respond to his kindness and his silly jokes and smile with him rather than turning away in abject horror. He charms even with very few teeth left. I should relax and smile with him.