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Joan Sutton

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Alzheimer's: Getting a Handle on the Day

Posted: 10/16/2012 7:33 am

My mother used to start her day by sitting alone in the kitchen, with a cigarette and a cup of tea. She called it "getting a handle on her day."

Well, I don't recommend the cigarette but a caregiver definitely needs to "get a handle" on his or her day. As the day begins, so it usually unwinds, and tension begets tension.

I get a handle on my day by meditating. I started Transcendental Meditation (TM) about 35 years ago, on the advice of a friend, and I have continued that ever since except for the first two years of my husband's Alzheimer's diagnosis. Foolishly, I told myself that with so many new challenges, I didn't have time for that. Truth was, I needed that more than ever.

There are many approaches to TM, from actually meeting with an instructor, going through the ritual of initiation and being given a mantra, to learning about it from a book. Basically, it is a technique of deep breathing, following the breath in and out. Thoughts may come and go, but you don't pay attention to them, you concentrate completely on following the breath.

Our bodies are intricate, complicated machines, made up of equally intricate, complicated parts, interdependent on each other to function. But all are absolutely dependent on the simplest thing: breath. Breath is life. In a way, with each one, we are recreating ourselves. TM helps me find my centre, it is known to lower one's blood pressure, and it provides me with deep rest at a time when the night's sleep is almost always interrupted.

So, half an hour before the dog, the husband, and the house stir, I get a handle on my day. That ritual precedes the ritual of caregiving. And ritual it must be. I have found that a familiar routine is absolutely essential to a calm day -- meals, bathroom, exercise, naps, bed, at the same time every day. Change agitates, so we try to keep it to a minimum, and give plenty of warning if something or someone new is on the schedule. However, I don't tell him things too far ahead. That, too, can cause agitation as he will remember that I told him something, but not what, and worry about it.

I type up the day's schedule and give it to him at breakfast. As he was once a foreign service officer, this may appeal to some deeply hidden memory of getting briefing papers. I notice that he keeps it in his pocket and refers to it throughout the day, so I assume it gives him some sense of control. Although it does not completely do away with the repeated questions about the same things that can drive a caregiver mad, it has cut down the number and that makes things easier for me. And, if I go out, he can refer to the note that I have gone out to do so-and-so and that I will be back in time for lunch, or whatever. As his progress through the disease has accelerated, this is not as useful a tool as it once was, but it still helps.

If I were to provide caregivers with a collective mantra, it would be ANTICIPATE! Look for the patterns. My husband has a hearing problem and has always been irritated by people who DID NOT SPEAK UP! That is still the case. Like most older people, he does not hear the high notes so it is important to speak to him in a low-pitched voice -- not loud, but low. Given the combination of poor hearing and the dementia, short declarative sentences are the best. This is not the time to explain that Jo is the second cousin twice removed of Aunt Tilly who used to live in...

Now, he may also lash out when people hover over him, especially behind him, or when someone interferes with his independence. This is very difficult as our concern right now is that he will fall. So, we have to hover without seeming to hover, and give him the chance to get up himself before we rush to assist. But not wait so long to help that he tries something without success several times, as then he becomes angry with himself. It's an endless search for the tactful way.

Tact, combined with respect for his dignity, get results. Take hold of his arm suddenly, and he will resist and growl, "What are you doing?" But explain first what you are going to do and he will be compliant. I notice that the really great nurses not only tell him what they are going to do, they ask for permission. "May I take your blood pressure?"

The pace of the day is determined by Alzheimer's. We might not like it but that's just how it is. You cannot hurry the Alzheimer patient. I have learned to take a laissez-faire approach to every day. If he doesn't want to take a shower right away, fine, we'll do it later. I have even learned to eat more slowly because I have noticed that when my plate is empty, my husband also stops eating.

As he has lost a lot of weight, and needs to eat, I slow down. That's good for him, and its very good for me. Years ago, I went to spa in France where there was a sign on every table that said, "No matter how quickly you eat, the next course will not be served for thirty minutes." Look at it this way -- I am not paying spa prices as I learn, not just to eat, but to appreciate my food.

So, in short: to have a calm house, be calm. Keep to a regular routine. Anticipate the causes of agitation. Accept the limits of the patient's ability and respect his or her dignity. Just the way all of us would like to be treated.

 
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