Grief in Process

I still think it is good for Miklos to have a change of scenery some of the time. It gives him some mental stimulation. But one issue is finding the balance between stimulation and confusion. We have time share points that can be used at a very large number of resorts. The resorts themselves are similar enough to one another in layout and furnishings that it is easy for him to settle in. Of course, whether we are at a resort or at home, he spends much of his time in bed, especially after a difficult day, like a day of travel.

The reason we had scheduled this particular trip was to see our older grandson playing in a volleyball tournament in San Diego. We could also see our granddaughter who had recently started her junior year at Cal State San Marcos, in a northern suburb of San Diego. And of course, since it is also in California, there was no time zone change to complicate issues. It seemed like an ideal trip.

I found the cheapest flight (or so I thought) departing from Oakland rather than San Francisco. However, the trip to Oakland International involved taking three separate BART trains, and it was difficult to navigate with Miklos. Moreover, I discovered to my chagrin that the flight was cheap because Spirit Airlines charges for everything, including carry-on luggage and even a glass of water. I won’t repeat that mistake.

AnnaBelle met us for dinner on the evening we arrived, and Miklos was elated to see her. The next morning, however, he didn’t get up. He was too tired to go the volleyball game. That was probably just as well because this was the Best of the West Tournament — thirty-two high school men’s volleyball teams, all in the same arena. You can imagine the noise and general chaos.

Amanda had also come for the tournament, and she stayed with us overnight, which, of course, pleased her father even though he didn’t dress at all that day. He entertained daughter and granddaughter in our suite in his pajamas and bathrobe. We ordered Chinese to be delivered to the hotel and had a great time. Despite the time we spent with AnnaBelle and Amanda, I began to wonder whether the effort of travel had been balanced by the rewards.

On Sunday, our Lithuanian daughter came from La Quinta to join us for the afternoon. And she had four of her five children with her! Miklos got up and dressed. He was delighted with his grandchildren. I knew the trip was worth the effort when I saw Agne hugging him, while he stroked her hair and said repeatedly, “You are such a wonderful granddaughter.”

Alzheimer’s is in some ways a very Zen disease. You live completely in the moment. Memory and anticipation no longer interfere. Each beautiful moment, like the time with his grandchildren, adds meaning. It is to be savored in the present, and that is a great gift.

Two of my nieces and a nephew came to visit. I suspect that they timed the visit because they are not sure how many opportunities they will have in the future.

When we were at lunch, Miklos turned to my nephew and told him, “My mind is relatively good, but my hearing is really bad.” I joked that he has a good memory for relatives and we continued a battle of puns on relativity. Miklos, who in the past would have been squarely in the middle of this repartee, silently continued eating his soup.

That evening, when our daughter joined us for dinner, Miklos asked Matt, “Do you consider Corinna a cousin?” Matt, kindly, just answered that yes, he considered her a cousin because they are cousins. A few minutes later, Miklos finally processed the relationship, and said, “Yes, you are first cousins.”

This is the second instance in which he has had difficulty identifying close friends or relatives. The first, I think I have described as the visit from our former step-granddaughter. In that case, he hadn’t seen her for several years, and she had grown up considerably. With Matt, it was different. The last time we saw Matt, a year ago, he was a mature adult. His appearance hasn’t changed very much in the past year. Miklos had no difficulty identifying Matt in the morning, but had lost the connection by the evening.

Unlike the visit with Abby, Miklos was not at all uncomfortable with Matt’s presence in the house, which is probably an indication that he understood that Matt is somehow related. He had lost that connection completely for Abby.

My daughter reminded me to be grateful that he recognizes me — that he recognizes her. I am also grateful that the lunch conversation with Matt indicates that Miklos has, indeed, forgotten that he has Alzheimer’s disease.

There is an old joke that an elderly man saw his doctor for his annual physical. The doctor said, “I have some bad news for you. You have Alzheimer’s Disease.” “Oh, my,” replied the man. “And,” the doctor added, you have cancer.” “Oh well,” the man replied, “At least I don’t have Alzheimer’s.”

Because his blood pressure was high when he visited the pulmonologist, I took Miklos to our primary care doctor for a follow-up. His blood pressure was within acceptable limits that day, but she recommended that I follow up with daily checks, and text her the averages in a week or two. When he mentioned have digestive problems, she recommended that he take Metamucil daily, and drink more water. She also recommended that we begin to work with a palliative care team

She left the room but we waited for the MA to return with lab orders and the palliative care referral. As we were waiting, Miklos saw his chart, which had been left open on the computer screen. He sat down beside me, very troubled and said, “I didn’t know I have Alzheimer’s. Why didn’t anybody tell me?” Of course, he has been told repeatedly, and he was aware of his diagnosis at the time it was made four years ago.

He forgot the diagnosis, even though he is keenly aware of his increasing forgetfulness and disorientation. He often says “Boy, I am really losing it, but putting a name to the source of those problems was distressing to him. The rediscovery not only shocked him, it depressed him a great deal.

He called our daughters to let them know, which, of course, they already knew. He called his brother, who also already knew.

It broke my heart again to find him so sad and discouraged. And like the patient in the old joke, he will forget again soon enough.

I have learned that caregivers for dementia patients are said to experience the long grief. So far we have been dealing with this diagnosis for four years. At first, the changes came slowly. In the past months, they seemed faster. Now, we may have hit another plateau.

That is what I am experiencing: grief after grief after grief. Each new loss of function is a cause for grief. Last month he had no difficulty identifying the month, if not the day of the week, which may be common in retired people without dementia. Today I had to remind him that it was December.

I confess that I also grieve for myself. I can no longer travel internationally or to the East Coast because Miklos can’t handle changes in time zone. I am limited in the events I can attend at night because I am concerned about leaving him alone. I am limited in what I can plan for my future because I don’t know how long I will be caring for him and living with his limitations.

Today, as his pulmonologist was suggesting a three month follow up, Miklos quipped, “I think I will still be alive then.” But we just don’t know. And I grieve because it is really possible that he won’t make it for three more months. After almost 60 years of marriage, will I know what to do with myself?

Our two-year-old brain is the one that always thinks, as the commercial says, “I want it all, I want it all, I want it all, and I want it now.” That behavior is becoming more and more common in Miklos. And like the two-year-old who is told no, he sometimes throws a tantrum. Usually, he just balls up his fists and pouts or shouts, but he has recently pushed me when he didn’t get immediate satisfaction of a desire.

We were trying to take an updated family photo, which I hoped to display prominently in our home. We were dressed in complementary colors, the day was sunny, but chilly, and we were posing on a bridge — a lovely backdrop with beautiful fall foliage. Miklos at first refused to remove his baseball cap, and when I asked him to remove his jacket, he said, “But I’m cold.” We explained that it would only be for a few minutes, and then we would go inside and warm up.

He pushed me when I tried to show him where to stand for the photo. And he was sulky. He pouted and in the first couple of shots, he looks like he is being tortured. I am not sure he quite understood what we were doing, even though we had explained it before we went out.

He finally quit pouting, but he never tried to smile. Our last family photos had been taken seven years ago, and since we don’t have the habit of annual photos, I suspect that these will be the last. I wish we could see a happier Miklos, beaming down from the photo as he always beams when one of our daughters arrives for a visit. Sadly, that won’t be the case.

At present the two-year-old is not always in evidence. Miklos is more likely to be sentimentally affectionate, which is a welcome change from the years when he was consumed by work. I am trying to build a reserve of patience and strength so that I can cope if the two-year-old begins to show up more frequently.

I visualize a steep hillside, with lots of loose rocks, occasional stunted trees, or boulders, or small ledges to break the fall. And that seems to be the way that Miklos is declining. He falls swiftly and then plateaus for a few weeks or months.

In the past couple of weeks, his short term memory has grown considerably worse, and he shows much more confusion, often struggling to decode simple instructions.

There is also a steep decline in his physical health. He used to get up, shower, shave and get dressed, have breakfast, and then possibly sit in his recliner for a nap. For the past week or so, he has stayed in his pajamas most of the day, complaining that he just isn’t feeling very good. And staying in bed rather than napping downstairs.

His heart is strong. His lungs are strong. But he is clearly slipping on the loose skree of this mountain top.

Our daughters have both expressed the hope that their dad not live to the end point of this disease. It really hurts them to see him losing ground, becoming more confused and less of the father they have known. I may share their sentiments, but I am not at all sanguine that it will be the case.

Earlier, when Miklos was first diagnosed with Alzheimer’s disease, I also felt sure that, given his advanced age, he would die from some other factor before he completely lost his cognitive functions. I am no longer so confident of that.

In the past few months, he has had a cardiac screening. His heart is incredibly strong. He has had a complete pulmonary work up. His lungs are strong and healthy. His asthma is very well controlled and the sleep apnea that was diagnosed twenty years ago is completely absent. In almost every measure, his body is in great shape for a man of his age.

His mind is a different thing. I don’t mean just the cognitive function, but also the will to live. He continues to say that he might as well be dead, or that he would be better off dead, or that I would be better off with him dead. And despite the absence of any diagnosable physical symptoms, he frequently complains of a general malaise and lack of energy.

In the end, what our daughters may hope for really has little impact. All we can do is wait and see. In the meantime, I am giving The Thirty-Six Hour Day a new read, and not ignoring the final chapters as I did before.

Recently, we were visited by good friends who hadn’t seen either me or my husband for at least twelve years. Both the mother and the daughter, no longer a young adolescent, but a married woman working on a PhD, were great fans of Miklos, for his wisdom and his counsel in previous years. He helped them learn to live with the sudden loss of husband and father.

The whole time they were with us, they were incredibly patient and tender as Miklos repeated the same stories, told the same jokes, deflected serious questions with puns, so that he didn’t have to reveal his confusion about the conversation.

I confess that I do not always have that same patience. Sometimes, I really need a serious answer to a serious question. I also confess that I felt like I was being judged and found wanting, especially by the daughter. Perhaps, I should be more patient. Perhaps, I should do a better job of masking my frustration.

However, I don’t visit Miklos occasionally. I live with him everyday. I cannot go home at the end of the week. I am at home. I try to live in the present moment, but I do have concerns about the future. Sometimes, I am just tired.

Honestly, it may have been more my personal feelings of guilt and inadequacy more than any actual judgment on our friends’ part. I have always judged myself harshly.

I think that I have moved on to acceptance, but I find there is always something else to deny. I do not deny that Miklos has Alzheimer’s disease. I do not deny that it is progressive and incurable. But I deny that in his case the symptoms will ever become so bad that he will need 24 hour care.

Recently, his physical health has been improving. Three weeks ago, I was not sure he would recover from his surgery. Now, I see that he is growing stronger every day. He walks at a more rapid pace. His appetite is improving. He appears to be doing well. Except

Except that he clearly has increasing difficulty in solving simple problems — how to get a grocery cart beyond the check-out lanes to the bakery on the other side. Except that he has more difficulty remembering whether he has taken his medicine or done his exercises, confusing having done so yesterday with doing so today.

And I sit in denial. Surely, we can hang on the way we are for a few more years. I will continue to be able to leave him alone for a few hours while I have lunch with a friend or do some shopping. He will not need adult day care. He will continue to be sociable and engaged.

I procrastinate. Stephen Covey describes it as the tyranny of the urgent over the important. There will never be a day when I do not have some life responsibility, but I must prioritize preparing for our future needs as his condition worsens. But surely, it won’t be necessary for a few more years. Sigh.