Grief in Process

I have recently reverted to an unhelpful and unhealthy way of thinking. Dwelling on my current frustrations has taken me back into every slight, hurt, betrayal in the past. I know that my exceptional memory can be a curse. It makes it too hard for me to relinquish grudges. I can easily realize that dwelling on the past, especially the most negative parts of the past is completely non-productive. Knowing that it is non-productive doesn’t make re-directing my thinking any easier.

I suspect that some part of my brain wants to think that if I focus on the negative, it will be easier to let go when the time comes. I will be able to say thank goodness I never have to put up with that again. Will that thought really provide solace? Of course not. When I send condolence cards, I often offer the opposite sentiment — that the mourner will be comforted by warm memories. Why can’t I apply my own advice to my situation?

One way to redirect my thoughts is to redirect my actions. A few months ago, I started preparing a photo album of best memories. My goal at the time had been to help Miklos recapture his own memories. I know that in memory care facilities, it’s important to have photos and other mementos that can prompt the patient’s memory.

Now, I consider that it may be excellent therapy for me — to focus on the best parts of the 59 years we have spent together so far. Creating the album ties past to present and future. It is a place to begin.

Miklos has wanted some slip-on shoes, so for his 87th birthday, I bought him a pair of the Skechers, advertised to have a built-in shoe horn. As he was trying them on, I started to wonder whether these would be his last pair of shoes. I had already wondered whether his 87th birthday would his last.

As I anticipate our planned trip to British Columbia this July, I wonder if this will be his final plane ride — presuming that he makes it to July. But I also know that he may live for another ten years.

He is finally beginning to have a little energy after his gallbladder surgery. Certainly the physical therapy that Dr. Hanft ordered is making a difference. And I have been urging (no, not bullying) a few more bites of protein, and bit more fiber from fruits and vegetables. The 95% refined carbohydrate diet has not been working for him.

For all of us, there are “lasts.” I am not sure whether it is a blessing or a curse to be so cognizant of the possibility that this is the last time for anything, I wonder whether we consider it as much when it applies to us as when it applies to a loved one.

That is a good title, but I can’t write the content. I have absolutely no idea how to balance preparing for the future with living in the moment. I would love to have someone give me the formula. The immediate crisis of his post-surgery recovery has past, and he is mostly back to his pre-surgery normal. That is, he now only sleeps 12-15 hours a day rather than 15-20. He eats a third of his dinner rather than skipping it entirely or eating three bites. He is significantly under 150 pounds, and all of that weight loss has been muscle.

I know that the Miklos will not get better, mentally. I am not even sure that he will get much better physically, even though our physician has ordered some home health physical therapy to help him improve strength and balance. He may have days when he is more energetic and days when he is weaker. But essentially, he will continue to decline for the rest of his life. There were days in the month after his surgery when I imagined that he was already shutting down completely — days when he didn’t want to get out of bed at all.

Even as the immediate after-effects of surgery fade, those days are increasing in frequency. Often he seems so weak that I keep looking for signs of life while he is sleeping — a breath, a tap of the finger. He is also very pale.

I know that many others caretakers deal with much worse situations than mine. They care for angry and violent loved-ones, often to the point that all love is gone. The person that they once loved has disappeared to be replaced by this demanding stranger. I am grateful that Miklos is still loving, more loving than ever. He is also more dependent, not only physically, but emotionally.

That emotional dependence is one of the hardest things for me to deal with me. Sometimes I feel a little stifled. Sometimes I feel completely smothered. At those times, it is hard not to think of the past when I frequently felt ignored because I was always second to his work. Or to think about the freedom I will have in the future when he will no longer be here to need me at all.

If any of you have the guidance to give me in finding the balance between preparing emotionally for the inevitable and living fully every moment of my current life, I am ready to hear from you.

My husband is fond of quoting an old Florida oranges commercial, in which a farmer checks his fruit for ripeness and says, “Not yet.” And I have been thinking that over and over again since Miklos had his emergency surgery. He was ready to die from the pain, but I kept saying to myself, “Not yet.”

Of course, as I have mentioned before, when one marries a man nine plus years her senior, she reasonably expects to spend some time as a widow. I have often thought, over the years, about what widowhood will be like. Sometimes, when our relationship has been rocky, I have thought about it with a degree of anticipation.

But while Miklos was in critical condition, I kept saying to myself, “not yet,” and I realized how little I am actually prepared to face being alone. I add plans to the calendar and think of milestones, as though I have the power to bargain with life and death on Miklos’ behalf — not until after your birthday, not until after our trip to Canada, not until our anniversary, not until –. The list is actually endless, and it is one more thing over which I have absolutely no control.

Miklos still has the capacity for joy and pleasure. He anticipates visits with his children and grandchildren. He enjoys the company of friends. As long as he has those moments, I really feel that it is not yet time. When will it be time? I will cope with that when the time comes.

Miklos began to report pain in his back on Wednesday. By Sunday morning, the pain had become excruciating. He was moaning and panting and turning white. I called urgent care, but I was told to go to the emergency department. Urgent care lacks the equipment to do scans.

Miklos was admitted and taken to an exam room. There he received a battery of tests, but they showed no cause for the pain. He asked for some prescription medication, but was not given a prescription. We came home, and with the aid of some Aleve, he tried to sleep a little. A few hours later, the pain was even worse.

We returned to the ER, and he was admitted, but the physician at intake looked at the records from the morning visit, and said that there was nothing more they could do. He prescribed a diclofenac gel to apply externally. My sense was that he was a bit dismissive, thinking that since the earlier tests showed nothing, Miklos was probably exaggerating his pain. We were instructed to follow up with our primary care physician in the morning.

When I called to make the appointment, I was informed that Dr. Hanft was on vacation, but we could see the physician on call for her at 11 AM. I wished it could be earlier. For days, Miklos’ pain had been intensifying. He repeatedly said that he couldn’t live with this level of pain, and that he would rather die.

I appreciated the kind manner and clear concern of the call doctor. I suspect that Miklos was in too much pain to appreciate anything. He begged for narcotics, but was told that we shouldn’t mask the pain until we could identify the cause. We were told to go the the ER on the other campus in our hospital system.

We arrived at the ED at 1 PM. At 1:15, we were called to register for care, and then sent back to wait. At 1:30, Miklos was called to have his vital signs taken, and then sent back to wait. Many minutes later, Miklos was called to be examined by the triage nurse, and then sent back to the waiting room.

More waiting in a cold and drafty waiting room. Then, he was taken to have X-rays and an EKG. Of course, then it was back to the waiting room. Another nurse appeared to take him for an MRI. And again, back to the waiting room. By this time, it was approaching 4:30 pm.

In the meantime, Miklos had received no treatment for pain. I was getting desperate. I was also getting irritable because all I had put in my body all day was a cup of coffee. At last, Miklos was taken for a Cat scan. And of course, returned to the waiting room.

At 6 PM, he was taken to a treatment room. After a few minutes, a surgeon came in. After more than 24 hours, someone had finally identified the problem. Miklos had gallstones, and was scheduled for surgery the next day. The surgeon did an excellent job of explaining the procedure and what to expect to me. Because of his hearing and his exhaustion from days of pain, I doubt that Miklos heard or understood much of what he was told.

We were told that the surgery would not be until the following afternoon because the surgeon had three other surgeries already scheduled. I thought that the 86-year-old probably should have a higher priority, but I was relieved that Miklos was finally getting pain medication.

As he was being processed into the inpatient side of the hospital and taken to a room, I stepped out to get a bite to eat. When I returned to see him in the room on the ward, I learned that someone else clearly agreed with me because his surgery had been rescheduled to 7:30 AM.

When I was sure that he was settled as comfortably as he could be, and was growing drowsy from his medication, I went home to get some sleep. It was more than 12 hours since I had left in the morning.

This incidence tells a lot about the current state of medicine in the US. We have the highest costs in the world. We should have the highest level of care. We do not. If it was this difficult for two well-educated people with good insurance, what must the experience be like for others? We need to do better as a society.

Recently, I have found myself pondering again the question of the best to die. To have a little forewarning so that family and friends have the chance to gather and say goodbye or to drop dead quite unexpectedly? Of course, as my daughter points out, it is not at binary. To die after months or years of agonizing pain cancer is obviously not a desirable death. In some religious traditions, it is important to have time to prepare one’s soul. Sudden death seems to preclude that possibility. Still it may be it preferable to the person dying, but not the family.

That was brought home to me this week as a close friend collapsed on a hiking trail and died quickly thereafter. I would hate to be his widow. I am happy that I get a few bonus years with Miklos, and that he doesn’t seem to be suffering greatly at the moment. I watched as another friend wasted away until he was gaunt andhis. His widow had done a lot of grieving well before his eventual death.

Obviously, this is a pointless as well as morbid speculation. Death comes as it will, unless we take active steps to end a life. I have found that it is also always a surprise, even when it is expected. The particular moment always catches us off guard. It is time to concern myself with things that are within my control.

Now there is a new behavior that I can find no explanation for. Miklos almost never closes a cabinet door or drawer. Is it that he’s afraid he won’t remember what’s inside? Is it just that he doesn’t remember that it is both polite and safe to close doors so that others don’t bump their heads? I wonder whether this is a typical development with dementia, or something specific to Miklos.

He has always thought that the best way to find things was to keep them all out, which has made for messy desks, dresser tops, and counters at our house for many years. I have never quite persuaded him that they best way to find things was to have a specific place for them (out of sight) and always return them to their specific place. Everything should have a home. While leaving the doors open is curious behavior, it isn’t difficult to deal with. I am an excellent cabinet closer.

And like my treasure hunts for clothes and dishes that he has put away somewhere, the open doors do have an element of humor. I need to laugh at myself and at the situation.

For the past few weeks, Miklos has been sleeping even more and complaining of just not feeling very good. There is nothing particular that he can point to, like a sore throat or fever, just that he is not feeling good. He was already sleeping a lot. Now he is sleeping even more. He has been going to bed between 10 and 11 PM, and sometimes getting up as late as 4 PM, and very rarely before noon. I understand that there is not a lot that he is motivated to do. Still, I am concerned, especially because he has also reduced his exercise. His appetite has also been very slight. There are so many signs to be concerned about..

Often when I have a meeting or engagement, I leave while he is still in bed. When he is still in bed when I return, I immediately go upstairs to check for signs of life. I fear that he will die when I am gone. Sometimes, I can see a movement under the covers. But sometimes, I have to put my face very close to his to be able to detect his breathing. It is a relief to find the smallest sign of life.

When he is finally up and dressed, he seems healthy and alert. It’s a rollercoaster of emotion. Am I ready to be a widow very soon? Am I ready to be a wife and caretaker for years to come? It is very hard to know what to feel or what to hope for.

Ever more often, I hear Miklos expressing the thought that he is good for nothing, useless, a drag on me, and that he should just die. My daughters remind me that he may really just be winding down, and preparing himself for his inevitable death. I understand that need. I have no illusions of immortality. He has already lived ten years longer than the current US average.

What I wish is that I could help him change the narrative — not because I can’t accept the reality that he may die at any time. But I would like for him to see it not as having outworn his usefulness. I would like for him to realize how much joy he brings to the world. I wish he could remember all the people whose lives he has touched for the better, some at critical times in their lives. I wish he could imagine the eulogies and memories others will share at his funeral, because I can imagine very well what some people will say. 

The delicate balance is between giving him permission to slow down and let go, and arguing that his life has great value, even at this stage of his life. I blow it all the time. Sometimes I probably contribute to his feelings of uselessness. Too often, I get too irritated with his increasing inabilities. Sometimes, I probably argue to forcefully about how important he is to his children, grandchildren, and friends, as though he has a responsibility to stay alive forever. I would like to be perfectly supportive, but I don’t have the balance right yet.

The narrative I wish he could tell himself is that he has spent his life helping other people, and that he has been very important in their lives, but that now he has done enough. He can rest on his laurels, and face the future confident of the contribution he has made to the world.