Eldercare Lessons

My mom and dad are the only people I know whom real estate agents have dumped out of frustration. They looked at a lot of houses in the Annapolis area and then a few in Virginia, but nothing quite worked--no garage, not enough bedrooms, no basement, yard too small--and Tom and I eventually concluded that they didn't really want to move.

When the crunch came--when my mom and dad became unable to care for themselves, I realized that I had wasted a lot of time. This wasn't a matter of siblings being unable to agree on who will take care of mom and dad. I'm an only child. My dad had had a series of illness--all without me being there--that I should have added up to realize that when a man is in his 80s and has had a stroke, cancer, heart, hearing, and eye problems, it's probably beyond the point in time when he and my mom--who does not drive--should be expected to watch over themselves, even though they were doing pretty well until their 88th year.

Part of the problem was that they were doing pretty well, they were happy where they were, they'd spent nearly all their lives in the area, and the extended family was for the most part less than a hundred miles away. Wasn't it better to leave well enough alone?

Well, not quite, because as the days, months, and years went buy, things were changing just as they do for everyone in their 80s. They were slowly approaching a health crisis, and in this case it lasted for months before it turned fatal for my dad. During those four months, I was madly juggling house hunting/buying (including arranging for a loan), calls to doctors, hospitals, and nursing homes, and long talks with my mom, who was at home alone, on top of working a full-time job. In the course of all this, I learned the following things that I am applying to my mother's care and hope to be able to apply to my own welfare and Tom's when we get older. Those of you who read this might well have learned your own lessons while trying to care for elderly parents or other aging family members. I invite you to send them to me so I can add them to the list.

1. Many doctors do not consider elderly patients as deserving of the same care and consideration as younger patients. They will delay visiting your loved one at the hospital and be dismissive to you as a family member. "Well, what can you expect, he's 88 years old" becomes an excuse for the doctor's preference to do something other than give your parent the best care.

2. Nurses working night shifts at hospitals and nursing homes like peace and quiet during their shift, even at the expense of your elderly loved one. Let's face it, few people get used to working nights, especially women who have young children that require their attention, causing a lack of sleep. When these folks get to work, they want a quiet shift so that the stress of working at night is minimized. Old people often have a condition called "sundowning," where there days and nights are mixed up that ruin the tranquility of the workplace. If drugs will cause your elderly loved one to quiet down, then the nurses will see to it that they get the drugs, even if it means calling a doctor to authorize it and even if the drugs will complicate the overall treatment of what has caused the elderly person to be in the hospital. My dad was having trouble sleeping at night in the rehabilitation department of Union Hospital in Terre Haute. After complaints from the nurses, his rehabilitation doctor (not a neurologist, not a psychiatrist) was given halydol--an antipsychotic drug that I had asked them not to give him--AND DOUBLED HIS BLOOD PRESSURE MEDICINE. The next day his condition declined dramatically--he could barely move. I consider this one of several turning points that not only set back his recovery but directly contributed to his death.

3. Warnings that certain drugs can be fatal to the elderly (so-called black box drugs) are routinely ignored by medical professionals. If your elderly loved one is not sleeping at night, they will be given one of these hazardous drugs, most designed to treat severe psychotic illness--and you won't know about it unless you ask. Even if you tell the nurses caring for your loved one at a hospital or nursing home that you don't want black box drugs given, they might comply initially, but when they think you're no longer focused on the issue, they'll start dosing them out again after getting a doctor's permission.

4. Getting a home loan is not easy for the elderly, even if they have a lot of money in the bank and a steady pension income, and an impeccable credit record.

5. If you or someone you love is in their 80s, their chances of being "healthy" one day and dead the next are astronomically higher than for those under 80. If your loved one is 80 or older and has been hospitalized, expect a phone call with bad news at any time.

6. Your elderly family member may exhibit aggressive behavior of the kind you've never seen before; it is a natural but primitive response to change, so don't let it hurt your feelings. When he was in the hospital in Indianapolis, the nurses called the police on my dad because he had become combative. It took four physically fit men in their 30s to hold him down. Why did he get combative? Because he wanted out of there.

7. Nurses would rather have their elderly patients wear diapers or a catheter than take them to the bathroom. One of the standards for quality nursing home care is the percentage of patients who become incontinent while staying at the home. I'm pretty sure this is because the reason many of the elderly become incontinent because their toilet needs are neglected by the home's staff. My dad would call to be assisted to go to the bathroom and was ignored. His nurses had him in diapers, so they didn't have to worry about a messy bed, and helping a big man get up was a chore. I used to get calls from the nursing home complaining that my dad kept falling out of his bed or sliding out of his wheel chair. When I asked him why he did this, he said, "I know it's not going to hurt me, and it's the only way I can get their attention."

8. Therapists will use Medicare against you to avoid having to work hard to help elderly patients. The therapists at Meadows Manor East, the nursing home my dad was sent to when he was released from Union Hospital, found my dad to be hard to manage sometimes, so they dropped him as a patient. Twice. The first time the physical therapist told me that my dad was making some progress. The nurse all told me that my dad was making progress. But then suddenly my mom got a letter from Medicare saying that my dad was being dropped from therapy. When I confronted the therapists about it, they said that to continue therapy would be an abuse of Medicare, which would pay significantly more for my dad's care in a nursing home if he was undergoing rehabilitation as opposed to just custodial care. They claimed that he had not been making progress over a two week period even though every time I asked specifically about how he was doing in therapy, I was told he was doing fine. After my dad was sent to the hospital because the drugs Meadows East was giving him--the black box drugs--were causing him to be comatose during the day and crazy at night, he returned to Meadows East. The doctor prescribed therapy for him once again, but the therapists tried for one day and then called me to say it wasn't working out and that they had decided to drop him. One day. Now if they were right, then why did my dad do so well at therapy a week later at Fairfax Nursing Center in Fairfax, VA? He was making progress for weeks until the day he was hospitalized for pneumonia.

9. With any medical treatment your loved one receives, find out what type of follow-up care will be required and make sure it gets done. My dad had a tube surgically implanted in his stomach because all the medications he had been on had impaired his ability to swallow. The doctor who proposed that it be installed was worried that my dad would aspirate his food and get pneumonia. Unfortunately, in tandem with the installing of the tube was the requirement that mucus that accumulated over time in the back of his throat be suctioned out because he couldn't swallow it down himself. Mucus accumulates a lot of germs and normally it goes into the stomach where the acids there kill them. In my dad's case, the nursing staff failed to follow through on the suctioning, and that failure caused the germs to stay in the mucus in the back of his throat, where they proceeded to multiply and eventually get into his lungs and cause pneumonia, the very thing the stomach tube was supposed to prevent. I'm sure suctioning out mucus is not the most pleasant job in the world for nurses, and elderly patients come and go for a variety of reasons, so maybe they don't connect this particular failure with deadly negligence. For whatever reason, it falls in the loved one's court to make sure it happens.

10. You might be right and the doctor might be wrong, and the consequences of his error could be deadly, especially with the elderly, so insist that the doctor take your view seriously and prove that your wrong. When my dad was rushed to the Fairfax Hospital's emergency room, I stayed there with him until 1 a.m. or so to talk to the doctor. During our talk, the doctor said, "we need to find out what the source is for this infection." I said, "What about the back of his throat, maybe mucus has accumulated there since he can't swallow?" The doctor said, "If that were the case, he would be coughing more." In hindsight I should have said, "Why don't you look and see?" Twenty-four hours later, when my dad's vital signs dropped the first time, they did look and found a huge accumulation of very nasty stuff. An hour later he was dead.

(To be continued . . . )