Cloud on the Horizon

My dad visited his cardiologist lately, and we learned he has a new problem: congestive heart failure.

This is a scary-sounding disease. “Heart failure” sounds like something that results in a sudden death. That’s not how it works, though. It’s a chronic disease which, if I understand it correctly, is related to new difficulties the heart faces when pumping blood. It can be caused by high blood pressure and obesity, and alcohol is also a factor, so I think I know what happened in my dad’s case. He has never had obstructions in his blood vessels, which is remarkable, but his blood pressure has been high, his weight has been out of control, and he has not been one to turn down a drink.

My dad had wonderful health until he was over 80. People always said he looked like he was 10 years younger than he was. He was strong and vigorous. When he was 82, he was a very capable lawyer. He has never had an operation. He has never had significant arthritis. All these things were true, even though he ate voraciously, drank whatever he wanted, and never exercised. He had high blood pressure and other problems, but they had no effect on the way he felt or what he could do.

He had minor lower back pain, but this was caused by a couple of falls he took after the age of 80. Other people have died after similar falls.

The new diagnosis signals a change in his general welfare. Up until now, his brain was the only part of him that was failing in a way that affected his quality of life. He was old, and he had the usual general deterioration age brings, but he didn’t have stents, insulin, a wheelchair, oxygen, a walker, or artificial joints.

The doctor asked me how aggressive we wanted to be in treating the problem. I explained that the question was confusing to me. What does it mean? Was she asking if I wanted my dad to die as quickly as possible, because of his dementia? Was she asking if we wanted to pull out all the stops and devote all our energy into a consuming, expensive, arduous, unproductive effort to squeeze a couple of more years out of him? I’m still not sure.

I want my dad to be comfortable, so I want anything that makes him feel better. If there is anything that will fix the problem, yet which will not make impossible demands on both of it, I’m for it. On the other hand, I think surgeries would cause more problems than they would alleviate. After surgery, patients have to cooperate with their caregivers while they recover. That’s a tough order when a patient can’t remember what has happened. Also, I would have to find ways to provide a greatly increased level of care.

Some people with congestive heart failure get transplants. Do we want that? Because of dementia, he probably has only a couple of years left, even if his heart works perfectly. His type of dementia kills quickly. Do we want to put him through months of suffering in order to buy mere months of life? Also, is it even feasible? I can’t imagine putting him through rehab and taking on a new wave of powerful prescriptions at this point in his life.

I believe he would have to move to a facility. I don’t think I could handle the work and still cope with my other responsibilities. He would be isolated from me and away from his home. Maybe that would be okay. Maybe he would enjoy it. It doesn’t sound like something he would like, however. He wants to be near me, and I think he enjoys his home.

Bypasses are also used to treat congestive heart failure. I don’t know how hard that would be on him or me, or whether the likely outcome would justify the effort. In the old days, a bypass involved opening a person up like a gutted deer. Maybe it’s not as traumatic now.

Death is normal and unavoidable. Health problems associated with age are normal and unavoidable. On the other hand, sometimes suffering can be ameliorated with effort. I don’t have any human beings who can tell me what choices to make, and my dad is not much help.

We are going for an echo test soon, to see what the situation is. Maybe I can get better advice at that time, but the truth is, we are not going to get much help from doctors. They are pretty good at telling people what’s wrong with them and what can be done, but they aren’t capable of making our decisions for us or even providing sound guidance. Our medical infrastructure hasn’t provided a branch that does that, even though the need is great. It may be impossible.

Here’s what happens when someone dies. You find out they’re sick. Doctors give you options. You and your family–people who are not experts–have to make the choices. When the patient goes in for exams and treatments, he’ll get test results and procedures, and almost every time, he’ll be sent home afterward without much consultation. You won’t really know what’s going on, even if you ask.

Sometimes a patient gets better. Sometimes you’ll think he’s going to get better, and then one day he’ll have a crisis, and when you take him for treatment, you’ll find out he has a day or two left. He may lose consciousness, permanently. You may not get to say goodbye.

He may rally, and you may start to call everyone you know, to tell them he’s going to be okay. After that, he may collapse suddenly and die. This is something people should see coming. You don’t know whether a rally is real until the patient goes home improved.

When he dies, you may be sitting on airplane tickets and hotel reservations because you thought things were going to be okay. When it becomes clear the end is at hand, the family gathers, the patient dies, the body is whisked away, and you go home to a quiet house. You have a funeral, and then you get bills. That’s the process, in case you haven’t been through it. You’re not going to be part of a big happy team that gets regular newsletters.

Don’t expect things to be handled well. You will be winging it all the way.

In 2018, we are used to attacking illness and death as hard as possible. When a problem pops up, we assume we have to go to war. Sometimes it’s the right move, but very often, we treat people who, barring divine intervention, have zero chance of recovering. We deplete estates. We prolong suffering. Frequently, the people we try to help are harmed by our efforts. Often, their suffering is made worse and their deaths are hastened.

My mother was diagnosed with lung cancer in the summer of 1996, and about 8 months later, she was dead. She got the best treatment. She went to Sloan-Kettering and M.D. Anderson. When she died, she was missing part of a lung. She was bald. She was emaciated because radiation had burned her throat, making eating nearly impossible. She got 8 months for her trouble. How much sooner would she have died had doctors merely admitted she had a terminal disease and provided palliative care? For all we know, she might have lived as long or longer, with less distress.

Did the doctors know they were wasting their time? I wasn’t involved in her treatment. I don’t know if my dad and my sister ever asked. Maybe they knew, and they treated my mother simply to make the family happy and to make money.

We have come to see death as an anomaly that has to be corrected. We feel that it’s a crisis, like a boil or an aneurysm. For older people, death isn’t a crisis that happens because something is amiss. It’s universal and normal, like birth and puberty. Even healthy old people die.

Sometimes we need to admit that what’s abnormal is excessive striving to remain alive. When you’re 15, you do everything you can to beat death. When you’re 86 and suffering from dementia, more thought has to go into medical decisions. The people around you have to decide whether they’re taking practical steps to do what’s best for you or merely flailing at the wind.

What is determination in the case of a teenager may be denial in the case of a man in his 80’s.

I would not like to see my dad fall into deep dementia before he dies. I don’t want him staring at me, wondering who I am. I don’t want to see him in despair because he can’t understand what’s happening and he feels powerless.

Ronald Reagan lost his mind completely, and he lay in bed all day while people read him stories. That’s not what I want for my dad. I don’t know if President Reagan was kept alive when he could have been allowed to go gracefully, but there was no good reason to stall until he was 94 and totally helpless.

I think I know what will happen. We’ll get the test, and the doctor will say he needs a stronger diuretic. Then we’ll go home, and the disease will progress. Maybe it will be retarded somewhat. I don’t think we’re headed for a full court press with lots of invasive treatment. Major surgery would be very difficult, and I can’t change his diet or make him work out. No one can undo the damage the lifestyle of his youth has already done. I expect the answer will be new pills and altered expectations.

I have read that congestive heart failure can be a cause of dementia, so perhaps my dad will decline faster now.

I’ll keep taking him to church and praying. I want him to be on solid ground when he makes his journey. He may not be highly honored when he gets to heaven. That’s okay. As long as he makes it through the gate, everything will be fine.