Grief in Process

(with apologies to Tennessee Williams)

Despite all the difficulties, the many times Miklos moaned that he was too old to travel or that he wanted to die, we both enjoyed most of the trip. We were often with people who love us. When we weren’t it was due to the kindness of strangers. Where ever we went, we always found the majority of the people to be helpful and kind. In times of intense turmoil that we face today, that is an important message to remember.

Strangers made phone calls on our behalf. Strangers helped us handle our luggage. Strangers guided us to the right platforms at train stations. We had a wonderful time on a dinner cruise in Prague, meeting our tablemate as strangers, and ended the evening dancing and singing together.

I am sure we will never take an overseas trip together. It was too difficult for Miklos this time, and only the important family reunion made it worthwhile for him.

It has taken weeks for Miklos to recover from the hardships of changing time zones, making our way through airport security. From now on, our travel will either be short, domestic flights or road trips of a day or less. I feel a little bit constrained by this change. But for now, the focus has to be on Miklos.

Air travel was difficult for Miklos, but there were assistants at each airport to help with luggage and with getting from place to place. There is no such help on a train. No helpers, no wheelchairs, not even a luggage cart. We had our carryon baggage plus one larger suitcase. Yes, I can learn to travel lighter, but for this trip, I thought we needed extra because we would be gone three weeks and experience different weather patterns.

Boarding the train in Budapest was straight-forward and easy to navigate. Signage is in both Hungarian and English, and besides, Miklos reads Hungarian. There were some strong, friendly Scots traveling on the same train who helped us get our luggage up the stairs. Service in first class was excellent and we enjoyed the passing scenery.

We arrived in Prague and found no directions for departing the station. There was no one to ask directions. When we finally found an exit, it was obviously a back entrance. We hauled our luggage up a hill and looked for a taxi. There were none available. I tried to get service on my phone, but of course, I didn’t have an international calling plan, and I needed Internet service to use What’sApp.

We were finally able to stop a pedestrian and ask where we might be able to get Internet service. She suggested a coffee shop at the end of the block, and up another hill. We were exhausted by the time we got there. And I still had no way to call a taxi or Uber. The manager saw our plight and called for us.

When the Uber driver deposited us at the address for the hotel, we found a corrugated metal door covering the entrance, and no sign at all. We were tired, confused, and more than a little stressed. We lugged our suitcases down the street looking for help.

Finally, we found a restaurant where a young man from Ukraine explained to us that most establishments in Prague close at five pm, including the reception areas for hotels. He kindly called the number given for the hotel. We discovered that we should have received an email telling us that if we arrived after five, we would need to retrieve our keys from a different hotel.

Armed with that information, we again trudged several blocks, suitcases in tow, to the right address, picked up our room keys, and returned to our hotel. We discovered that, like many European establishments of a certain age, our hotel’s elevator landed between floors. We carried our by now extremely heavy bags up to the elevator, went up two flights, and carried the bags up another half flight to the third floor (second floor in European terminology, where the ground floor is not first). There we discovered that our room was actually in the attic, up another flight of stairs. We were exhausted.

Our train travels continued to be travails until we arrived in Vienna and were welcomed at the station by Cousin Anna and her husband Edward.

Despite the rigors of the journey, it was certainly worth the effort. When his cousins and friends arrived, Miklos was in prime mood, full of his usual humor, interacting, and surprising some of the other members of the party with his vigor. Seeing the Politzer Saga exhibit reminded him of his family history and gave him a sense of pride in the accomplishments of his ancestors.

We both enjoyed meals with the group at traditional Hungarian restaurants, and really enjoyed visits to Gerbeaud for pastries. Some other stops disappointed by the changes. The New York Cafe, once an integral part of the Budapest coffee house culture, while still beautifully ornate, had obviously become a tourist trap. It was worth a photo, but not an order. Gerbeaud, on the other hand, retained it both its elegance and its really delicious pastries.

The most important moment for Miklos was probably our trip to the Jewish cemetery. Linda had hired a tour guide and a mini-bus to take us to visit some of the houses that various members of the Politzer family had owned before the war. The tour involved walking several blocks between each bus ride, and Miklos began to grumble a little bit about having to be dragged along on this tour. One of Hungarian friends suggested that we be dropped at the hotel before they went on to the cemetery, but I am glad that Linda prevailed.

Within in the cemetery, there are family plots that share a common headstone. When we arrived at his great-grandfather’s plot, we found names of many ancestors. Most meaningful to Miklos was seeing his grandfather’s name. As he stood with Linda holding hands in front of the tombstone, there were tears in his eyes. It was a very moving moment for everyone.

I won’t try to undertake a journey of this magnitude again, but I am really glad we took this last trip together to Hungary.

It’s been more than three weeks since we returned from Hungary and we are just about recovered from the rigors of the trip. I was pleased that Miklos could be so easily persuaded to ask for a wheelchair. Once he saw how quickly we went through security, he decided that it was a really good idea after all. However, some of my fears materialized quickly. The departure lounges for many of the international flights at SFO are below the main floor area, and there are no restrooms on that lower level. After we were deposited in the front row and the assistant left, Miklos decided he needed the go to the restroom. He got disoriented and couldn’t remember that he needed to come down the elevator. Fortunately, he had the presence of mind to call me, and I happened to see him by the railing and could direct him back.

When we arrived in Amsterdam, he was again reluctant to have the wheelchair, but after we rode for twenty minutes on a little cart to get to the connecting gate, he was glad. I think it would have taken us an hour to walk that distance at his usual pace.

Oddly, many of the city-hoppers, as KLM names their connecting flights, are at gates a bus ride away from the main terminal, and without jetways. You have to board the old-fashioned way by climbing stairs. We were seated with the other passengers who needed assistance and there were quite a few. Too many, in fact, to fit into the special van that lifts passengers to the plane door without using stairs. The assistant had to ask the spouses who could easily climb the stairs to take the regular bus. Miklos rebelled. He insisted that he would not board the plane without me, and that he could easily climb the stairs. I had to put my foot down and was embarrassed about making a scene. By the time I got to our seats, Miklos was comfortably settled and satisfied again.

The first days in Budapest were really difficult. Miklos slept even more than usual, ate almost nothing, and complained almost constantly. Miklos: “I’m in pain.” I went to the pharmacy for Aleve. Miklos: “I’m constipated.” I went to the pharmacy for Dulcolax. Miklos: “I have diarrhea.” I went to the pharmacy for Imodium. Miklos: “I shouldn’t have come. I’m too old to travel. I should just be dead.” I left the room and went to the lounge for a cocktail.

We have made reservations for our 58th wedding anniversary at Gundel’s, a Budapest establishment for more than a hundred years. Generations of his family have eaten there. I cancelled the reservation. We had reservations for Nanci Nene, another Budapest landmark where we had dined in 1999. I cancelled the reservation. When I was able to reschedule the reservation for Gundel’s, I ordered a four course prix fixe menu with wine pairing. Miklos ordeded a bowl of chicken soup, and ate about three bites.

The other members of our party were yet to arrive. In the first week in Budapest, I have taken walks by myself, too often to the pharmacist, and Miklos had left the hotel only two times. It was certainly not an auspicious start to our adventure, and we had weeks more before our return to the US.

Early in the journey, I spent a lot of time on ALZconnected, reading posts from other spouses. So many of them have much heavier demands placed on them than I do. Some of the spouses of younger patients are still working. I find it hard to imagine how they can find energy for all they need to do. Some of them also are caring for a partner who has become violent or or who no longer recognizes them. Some seem so very angry that it verges on hatred. I can already appreciate the degree of patience that they must have just to get through the day, but I have to wonder about what their relationship was like before the spouse begin to change. Were they once a close and loving couple?

Then I see other spouses who say kind and loving things, regardless of how much their loved one has changed. Their tone is gentle. Have they always been so close and loving, or has taking on the role of caregiver heightened their sense of empathy?

Observing these other people makes me more aware of the kind of person I want to be. My fervent hope is that Miklos never becomes violent or abusive. So far, he has become more loving, sentimental, almost maudlin some of the time. If he retains those traits, it will be easy for me to remain kind and loving. If he does not, will I have enough love, patience, and empathy to continue to be the kind of person I want to be? That is my hope.

We are going to Hungary! As you might deduce from his name, Miklos is Hungarian, born in Budapest. One of his cousins, Linda Ambrus Broeniman, has written a book about their family, going back three centuries. It is more than just a family story. It is sort the history of the Jews in Hungary through the lens of the Politzer family, appropriately called The Politzer Saga.

There is a museum exhibit based on the book at the Rumbach Street Synagogue in Budapest. His cousin, Linda, will hold the official launch for her book on September 2, at the museum. That is why we are going. Miklos wouldn’t have agreed to another trip to Hungary if it were not for the urging of this cousin. We will see cousins that we love, and meet cousins we didn’t even know we had.

It will be our third trip to Budapest together and I am excited to be traveling. I am also very anxious about the special challenges that we didn’t face in our previous trips. We were last in Budapest six years ago. While Miklos surely already had Alzheimer’s disease, he was not yet displaying any symptoms.

What could go wrong? He could go to a restroom at the airport and get disoriented when he came out and miss the plane. He could wander from the hotel. He could take a tumble. More probably, he could become so exhausted that he would sleep for even more hours per day than he currently does and miss out on all the family events.

My response has been to plan ever so much more than I usually do. (And I usually plan quite thoroughly.) I have made a list of the lists I need to make. I realize that sounds very compulsive, but it is a technique I have found helpful in many situations, from travel to moving to planning a Thanksgiving dinner for 40 people.

In this case my list of lists includes: To do before we go, To pack (with subcategories: clothes, mine and Miklos, electronics, toiletries, medications, miscellaneous), Personal before trip to do list, Things to do in Budapest before other family members arrive.

Cousin Linda has a great itinerary for the time she will be there, but we are arriving a week earlier. That was a suggestion from Miklos’ case manager. He will need more time to recover from jet lag. I am hopeful that the stimulation of being with family members will keep him from being so very tired all the time when we are together.

A suggestion from ALZ connected was that I should hire a personal attendant to travel with us and make sure he doesn’t get lost. My budget would never extend that far. A better plan was to ask for a wheel chair to meet us when we arrive at the airport. He is mobile, but very slow. A wheel chair will insure that we get to the gate on time, and the attendant will make sure he doesn’t get disoriented in bathroom. Surprisingly, Miklos did not take offense at having a wheel chair. That represents a real change in a man who has always before wanted to be completely independent.

We can never plan for all contingencies. I hope I have done enough. I suspect that this will be our last international trip together, except perhaps to visit cousins just across the Canadian border. I have spent more money than I should have to make sure it is very memorable.

Probably, my anxieties are irrational. I am making him sound much worse than he really is, so far. Breathe! Ground yourself in the moment, Anne.

Miklos is forgetful. That is rather obvious as it is the most basic part of the diagnosis. Some of the things he forgets make a difference, like the bins in the garage: blue is for landfill, green is for compost, brown is for recycle. That is one of the things that Miklos tends to forget. My choices are to do it all myself or just to check every time he has taken something to the bins.

If I insist on doing it all myself to make sure it is done right the first time, I take away a little bit more of his sense of purpose and control. Although it actually takes more energy and attention from me to check up on him, that is what I have been doing. Probably the garbage police are not going to arrest us if we get it wrong occasionally.

As in most American families, the grill is the man’s domain. This summer we had to buy a new gas grill this summer. The dials are a bit counter-intuitive. You would think that High would have the dial turned as far as possible. On our grill, it is just the opposite. High comes immediately after Start. That has proved a very difficult concept for Miklos to grasp. I will remind him to start the grill on High so that we get a nice char and the grill marks that all grill masters admire.

I will remind him to start the grill on High, and he will turn it to the lowest possible setting. If I have suggested four minutes per side, he will bring in the meat in eight minutes pale and raw and he will not understand what’s wrong. I will adjust the dials and raise the heat. Eventually, we get a delicious meal.

More and more little mistakes like the garbage bins and the grill temperature start to show up. Anything that is a new behavior falls into that category. Does any of it matter in the grand scheme of things? Of course not. In fact it is the stuff funny anecdotes in years to come. Many of his behaviors may fit that category. They can’t be funny in the meantime, because that is demeaning to Miklos. They are not very important things, but the small frustrations with them add stress to both of us. It also means that I have to be a much more diligent observer and that gets tiring.

My husband has begun reading aloud all the store names, the street names, the bumper stickers, and even the license plates we pass as we are driving. Is this something all people with dementia do? I have known other people with dementia who have done the same thing. In fact, I have known Miklos to make fun of those people and be puzzled by why they would do such a thing.

Sometimes he reads the words with Hungarian phonetics, which is an old form of humor for him, and makes it a joke. Often, he just reads them aloud. This constant inane banter becomes really irritating, especially on a long drive.

I was ready to tear my hair out, or more likely pull his hair out, after our recent drive to Fresno. During the drive, he not only read road signs, he also asked every ten minutes why the drive was taking so much longer than usual. It actually wasn’t, and I had taken a route that avoided the worst traffic around Stockton, which has occasionally added over an hour to our trip. He is not such a naturally optimistic person that I would expect him to only remember the unusually speedy trips, but perhaps he only remembers the trips from years ago when the traffic really was lighter.

I speculate that reading the signs is a way of demonstrating to himself that he still can read, that he still is competent in something. I will probably never know why, and I will try not to become so irritated in the future. I do not want to become a whiny and resentful person. It helps neither of us. I suspect that if I just tune him out entirely when he goes on and on, I will be calmer for it, and he may not notice.

My husband gets out of bed groaning. As with most older people, he wakes up with some stiff joints and sore muscles. He has never had a high threshold for pain. I doubt that most people also mutter to themselves, “Why can’t I be dead?” That is what I heard today.

Later in the day, we were driving, and Miklos asked whether we should be getting an all-electric or a hybrid for our next vehicle. He clearly is making plans for a future that in the morning he wanted no part of. This mental turbulence must be as difficult for him as it is frustrating to me.

We had a repairman looking at our microwave. He said that with a new part, it should be good for another five to seven years, and Miklos responded, “Just like me.” Unfortunately, we cannot just install a new magnatron in Miklos. Does he really want to continue his mental decline for that long? Will the Aricept work to keep the disease in check so that he can remain somewhat cogent for five more year?

I think the worst part is never knowing what to hope for.

Because I continued working after my husband retired, he decided that he should take over more of the household responsibilities. Mostly, he wants to load and unload the dishwasher and to do the laundry. I have appreciated this help for many years, and I have come to rely on it and to expect it. Of course, while he has always been diligent in washing the dishes, and he uses a lot of effort, the dishes are not always clean when he has finished. That problem has only gotten worse. I count on washing pots and pans before I cook because they will come out of the drawers and cabinets still dirty.

Pots and pans may still have traces of the last meal on them when I am ready to start on the next, but they are reliably in the right places. Kitchen gadgets, spoons, spatulas, juicers, peelers and so forth seem to baffle Miklos. He is not sure what they are, so he doesn’t know where they should go. The result is that I frequently spend quite a lot of time trying to locate them.

The laundry is worse. While he can still handle his own clothing and most household items like kitchen towels, napkins, and placemats, my clothing seems to be a great mystery to him. He has difficulty distinguishing between a tee shirt and a skirt. The result is that I often have no idea where to find my clothes.

I have asked him to please just leave them for me to put away, and he will remember that through one cycle of laundry, but forget the next. So I must hunt through closets, chest, and shelves to find what I want to wear in the morning. I try to view it as a game, but there are days when it is just too much. I run late because I cannot locate the blouse that goes with the skirt I already have on. These are minor things, but they add up.

I know many people are in a much worse situation. I know of spouses who no longer recognize one another, both suffering from dementia of one sort or another, and who try to eject the other person from their home. I know of spouses who have to spoon feed their loved ones, change their diapers, bathe them. I am not sure where they find the stamina. It reminds me, however, that as long as Miklos can send me on a treasure hunt for the dressing shaker, or my linen gaucho pants, it means that he is active and capable of almost washing the dishes and almost putting the clothes away.

Small blessings, but blessings, indeed.