CONTENTS:

• JUST VISITING
• THE NURSING HOME DECISION -
  • Trying to Decide What's Best For Aging Parents

JUST VISITING

In June of 1987, I visited my father. At that time, he was in his eightieth year. He was suffering from congestive heart failure, prostate cancer, a hereditary blood disorder and probably emphysema. He was depressed over the recent loss of his twin brother and discouraged about trying to cope with the problems of living alone in his condition. His greatest fear was that of being declared incompetent and placed in a nursing home. He said to me, "I'll take a .30 x .30 to the guy who puts me in a nursing home." I said, "Daddy, nobody is going to put you in a nursing home." In less than three months from that date, I made the arrangements myself.

In July, he suffered a massive stroke which left him partially paralyzed and unable to speak more than a few syllables. He also suffered a significant amount of irreversible brain damage. There was no way that he could return to his home and live alone. He remained in the hospital for 44 days. Near the end of that time, I received a call from his cardiologist, who told me that my father would have to leave the hospital very soon and that he would have to be placed in a nursing home.

Most people don't want to contemplate the thought of going to a nursing home. I share their point of view. I visit nursing homes on frequent occasions and I can tell you that I'm not excited about spending my last days in that kind of facility. The fact remains, however that the lifetime risk of entering a nursing home facility is somewhere between 20 and 45 percent.

His father and mother both died within 15 miles of his home. His grandfather died within 2 miles of his home. My father died a thousand miles from my home. It's not always possible, just to pick up and move when a parent is terminally ill. Some people strongly suggested that I should have moved back to Texas to take care of my father. But there were factors which made that quite impractical. My son was in his senior year of high school. We were in the midst of important projects Iowa and besides that I had no prospect of employment in Texas at that time, which is no small consideration.

My grandfather died very shortly after the onset of his final illness, so did my great grandfather. Both men probably took better care of their health than my father did. Nevertheless, my father lived longer than either one of them, but his survival over the last year of his life was probably attributable to two things (1) He was pretty tough and (2) New medicines, new surgical techniques and a pacemaker kept him going.

While it's true that medical technology seems to lengthen life, it doesn't do all that much for the quality of life in many instances.

Besides that, we had two children in college at the time. If you've had any experience with college expenses, you know that two incomes are mandatory. There was no way that we could meet the requirements of our employment and give him round the clock care. Besides that, he absolutely refused to come to Cedar Rapids and there is some question as to whether he could have survived the trip.

Many, many people, who are confronted with invalid relatives, face similar problems. Do they surrender their entire life style for the sake the person who requires care?

When you play with the statistics on life spans, you realize that many Americans are living much longer. According to mortuary tables, life spans have increased, but the mortuary tables don't tell the whole story because they take into consideration the people who die early in life as the result of accidents, infant mortality and things like that. When you look at the population over 65, the statistical results are mind boggling.

Right now the population over 65 is growing at twice the rate of the growth of the general population. We have 70 million people over 65. Out of that number, we have 6.2 million people who are in need of long term care. It is estimated that within 50 years, we will have 23.5 million people who are over 85. By 2020, the number of people who live beyond their 100th birthday will increase by 700 percent.

Of course, those figures aren't totally predictable. They don't take into consideration the possibility of nuclear war or some other kind of horrible disaster. But barring catastrophe, the fact remains that the number of elderly people is headed for a significant increase.

I think it safe to say that most of us come to that decision totally unprepared. We've never considered it an option. My Dad was a carpenter. He always believed that he would be picked up on the job some day and taken to the hospital where he would be declared dead on arrival. It didn't work out that way. To tell the truth, I thought it would happen that way.

Let's construct a scenario that's fairly typical. Your loved one has a stroke or some other irreversible disease. The doctor says that nursing home care is mandated. Very quickly, you're going to come to realize that you've entered a totally different world.

First of all, you've got to find a nursing home that will take your loved one. And that's no easy task. Many are filled to capacity.

Secondly, you want to find one where your loved one will get the best care available. And that's no easy task because caregiving differs greatly and you can't always tell by looking at the facility itself.

Thirdly, you will also discover that different nursing homes offer different levels of care. You will have to find a facility that is capable of giving the kind of care that's needed. In Texas, nursing homes are rated according to numbers. My father was in a level 3 facility. A level 3 facility means that a person needs round the clock care, but he can usually dress and feed himself. My father couldn't do those things. He needed to be in a level 4 facility, but the department of human services ruled that since there were no level 4 facilities in the county of his residence that he could be placed in a level 3 facility. The medical personnel determines which level is needed. So there appears to be some room to maneuver in this area.

Then there is the business of cost. I was not prepared to deal with that part of it. I got a crash course in nursing home costs, in Medicaid procedures and the stringent regulations that govern nursing home assistance. My father qualified for Medicaid. However, I quickly learned that Medicaid did not take care of all his needs. Every month, I received a bill from the pharmacy. Medicaid picked up the three highest prescriptions, but I got left with the rest of them. I had access to his bank account, but that ran out very quickly and in the last few months, I averaged paying $100 a month just for prescription medicines. There were other costs from time to time. He particularly enjoyed watching television in his room. At one point the television set went out. Of course, those funds come out of the pockets of relatives. Other relatives kept him in clothes and things of that nature.

But those are really the easy decisions. There are interpersonal decisions which have to be made. First of all, how are you going to go about informing a person that he must go to the nursing home. Don't expect the doctors to do it. They'll tell you that's your job. The doctor called me at my office and in a very short time, I was on a plane to Texas, mainly to tell my father that he would have to enter the nursing home. I could have handled the other things by long distance telephone. Bear in mind that he could not communicate beyond a few syllables and most questions had to be put in a yes or no framework. Remember too, that he had threatened to use a .30 x .30 on anybody who puts him in a nursing home. I had a number of relatives who second guessed me on any number of decisions that I made during this period, but none offered to talk with my Dad about going to the nursing home. That was my job, and mine alone since I am an only child and my mother was dead.

My task was made much easier by the fact that the doctor had told me (1) that my Dad would have to leave the hospital and (2) that he could not go home and (3) that he would require round the clock care. I simply related these facts to my father and then gave him four options, all of which included nursing homes, but nursing homes at different locations. He cried about it, but he was rational enough to know that he really didn't have any other option.

My relationship to my father was really not that difficult. He didn't like it and I didn't like it, but we made peace over it. It was not so easy with other relatives. He had brothers and sisters who were concerned about his care and had their own ideas about how that ought to take place. Their ideas didn't always agree with mine and we had some very difficult moments in some cases.

Guilt will come from one of three sources.

1. Guilt may be imposed by the person who is in the nursing home. "If you really loved me, you wouldn't let me stay here."
2. It may be imposed by others - relatives, friends and in my case even elected officials. A judge even scolded me for not living closer to my father.
3. If that doesn't do it, you'll probably impose some guilt on yourself. You'll think of something you should have done differently. There'll be things that you left undone. There will be regrets.

GUILT IMPOSED BY THE NURSING HOME RESIDENT

GUILT IMPOSED BY OTHERS

THE ISSUE OF CONTROL

THE WAR BETWEEN EMOTIONS AND INTELLECT

THIS KIND OF GUILT IS UNPRODUCTIVE

NEXT WEEK'S FEATURE ARTICLE: "Love and Hermit Crabs"