Life instructs mightily and sometimes painfully, as I have learned through my father who suffers from Alzheimer’s—an affliction that will affect one in four Americans by age 85.
For me, the lessons began when I would catch my father doing odd things. One morning he locked us all out of the house. Another day he couldn't seem to put the cap of a fountain pen back on the pen. Another time in the middle of a dinner, he poked a candle, almost child-like with his finger and was surprised when he got burnt. Increasingly there were non sequitur answers to simple questions. As these events occurred over the space of years, it was easy to ignore or dismiss. After all, we all do silly or incongruent things at times, this seemed no different.
Over time these odd behaviors grew in frequency—like the time he got up from our restaurant table and went to a nearby table to talk to a family who were baffled to have a stranger join them. That was odd, but not as odd as my own family, dismissing these behaviors as nothing to be concerned about. I would try to point out that these behaviors were emblematic of some sort of cognitive disorder, but those who lived closest to my father dismissed it as nothing more than growing old. So many times I heard: “He’s getting old, what do you expect” or “That is what old people do.” Perhaps, but what it does not tell you is what these little faux pas or oddities portend. When it comes to cognitive disabilities and old age, the second law of thermodynamics rules—the law of entropy. In other words, all things tend to fall apart—sometimes precipitously.
The abyss that Alzheimer's disease presents to each person is as varied as the human population. But Alzheimer's eventually reaches an abyss and from that precarious perch, where there had been reasonable gradual decline, there is a sudden and steep fall from which there is no recovery. As they look back, sometimes helplessly at what once was; there is only the occasional glimmer of the past. That final descent, the one that no family can further ignore, arrived for all of us one sunny afternoon, when I came home after many months of travel and my father asked my mother, “Who is that nice man?”
It had taken a long time and it was a painful moment. Finally there it was, it could no longer be ignored by the family, a decade in the making. Beyond the pain of what I felt at that moment, there was the realization that everything in his mind was now gossamer like, fleetingly ephemeral, and on a good day, as lasting as a south Florida rain-shower. Sadness gave way to our new norm as a family—we would have to adapt and change. Our orientation became singular: what does he need, not what we wish?
There were lessons learned to be sure. Some things worked better than others. I wanted to share these things, because in the next twenty years, fully 25 percent of those born between 1947 and 1957 will develop dementia or Alzheimer's disease and one third of us will either personally know or care for someone with this disease. We must be prepared. And if you should find yourself caring for some one suffering from Alzheimer’s you may find these observations useful:
All behaviors are important so note changes that become potentially dangerous such as the inability to turn off a stove, to unlock a door, to find an exit, to locate a vehicle, to find a favorite store or even their way home.
Fireworks may cause stress and even fear for the first time in their lives, as will loud noises.
Loud voices or many people speaking at once will become more and more difficult for them. Don’t be surprised when they seek to be alone in silence. They need it.
Don’t force them to socialize when they don’t want to—they simply can’t handle it and it stresses them.
Learn to approach them gently as they will startle easily. Gently work your way in to a room. Don’t surprise them or walk in too fast, it will take them longer than usual to recognize even those familiar to them.
Don’t ask too many questions at once.
Ask a question such as, “How are you feeling this morning?” Then let them answer at their own speed. Once that has been answered, ask your next question, “How did you sleep last night?” Allow for the answer and wait before the next question, “Are you hungry?”
Don’t violate their space—allow for a greater amount of spatial distance—that will contribute to their psychological comfort. Remember their needs are different now. Whatever was, was. In some ways they may become a very different person.
They may get very close to you to talk so don't be surprised. Don't over react, try to angle away rather than back away. Smile, it works wonders.
Where possible, try to approach them at angles rather than directly face-to-face. To them that may appear threatening.
If asleep, don’t hover over them when you wake them up, you may scare them, not just startle them, causing needless distress.
Simple changes in attire on your part may cause them uncertainty or even distress. Even sunglasses may cause them to be fearful, even if they know you well.
Just because they don't react, don't think they don't read your face. They may be aware if you are rolling your eyes, being dismissive, or showing dislike or disagreement.
Often they will say things that are simply untrue, inaccurate, or bizarre—there will be a great temptation to immediately correct them, thinking that this will somehow help them to heal. The best thing you can do, is agree with them. That way they perceive you as being in harmony with them. Once you have agreed with them you can then add commentary or a correction. Whatever you do, don’t argue with them—it serves no purpose.
It is often more reassuring for them to touch gently on the arm than to say anything. Touch can serve as a powerful soother to provide psychological comfort to the discomforted.
Don't carry on more than one conversation at once. It is confusing and distressing to them.
They may begin to manifest paranoid thoughts (e.g., doors need to be locked over and over, windows need to be closed even on the fifth floor, a man on television is not to be trusted, etc.). Watch for paranoid ideation that may be getting worse.
They may fear people in the neighborhood, even people they see on television. Don't dismiss it. Just listen for it, acknowledge it, then talk through it. Sometimes you have to do it multiple times.
Changes in routine are distressing so try to keep things the same and try not to alter the location of furniture—that too can be very distressing.
It is not unusual for them to develop anxiety. Anxiety can be very painful as can panic attacks. Sometimes their frustration at not being able to function or remember acts as a trigger. Medication, may be indicated to deal with the sudden onset of panic attacks.
People suffering from dementia are easy to “lead” when being questioned. Be careful what you say that you do not lead a patient to say things that they did not see, hear, or do. Something as simple as “You took your medicine, right?” may lead them into saying yes when they haven’t.
Get used to repetition, it is a reality that at first is frustrating and later tiring, but that is your new norm. I have been asked nine times in an hour how was my trip. Saying, “You already asked me that,” serves no purpose and it’s needlessly frustrating for them to hear. Use any repeated question, as an opportunity to engage, even if fancifully—it is an opportunity to interact—be creative.
Gird yourself for the responsibility of role reversal—you as the child may have to become the parent.
Be aware of your own fatigue, because if you care for someone with dementia, you will be fatigued, not unlike a young parent with a newborn, attentive to feeding, washing, bathing, and dressing. When you hear they become child like, you have to experience it before it really sinks in. Your routine will also change.
These are just a few of the things I’ve learned along the way. I am sure there will be many more lessons and this is not an effort to cover them all. What undoubtedly has been reinforced over and over is that when it comes Alzheimer's, you cannot be selfish and empathy must rule your day—it is all about them. They need our help.
If I may, learn to enjoy their presence while you can, as imperfect as that may now be. And when they go silent and withdraw, their eyes empty and fixed, sit closely, hold their hand, and don’t speak; just feel the warmth of their hand in yours and remember the love of someone who did so much for you. That too is a lesson.
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