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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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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 ...
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 ...
 
 
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Saijanai
Micro bio? We don't need no stinkin' micro bio...
12:35 PM on 10/17/2012
I wish your husband had learned TM ( I assume he did not) at the same time you did. If he did, and still was diagnosed with Alzheimer's, then he is the first long-term TMer I have heard of who developed that disease.
03:12 PM on 10/17/2012
Interesting thought. I'll check that out with some of my medical/scientific pals.....I didn't know him back then, and found in our marriage that I could get him to do anything I wanted, so long as it was what he wanted to do the first place. Doubt, given his personality that I could have persuaded him to try. In the meantime, it certainly helps me.
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Saijanai
Micro bio? We don't need no stinkin' micro bio...
02:04 AM on 10/18/2012
There's no scientific evidence that TM affects Alzheimer's in any way but I have a funny feeling it might.

The long-term effect of TM on a person's EEG outside of meditation is apparently different than the pattern that develops in Alzheimer's and it might be that it would tend to counter the changes that take place as the disease progresses. Certainly it would tend to counter stress-related aspects of the disease as the anti-stress affect of TM becomes a trait over time.
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Saijanai
Micro bio? We don't need no stinkin' micro bio...
09:14 PM on 10/20/2012
just curious as to what your medical/scientific pals thought of my idea...
01:53 PM on 10/16/2012
Joan, thank you so much for this thoughtful and instructional article on caring for a loved one with Alzheimer's. It's not an easy task, as some of us have been finding out. That's why you're so wise to emphasize the need for caretakers to first take care of themselves with something like meditation. With respect to Transcendental Meditation, you conclude about the practice that "you concentrate completely on following the breath." According to the instruction I received from a trained TM teacher this seems a bit misleading. As I understand it TM does not place any emphasis on the breath. Certainly it becomes shallower during the 20 minute practice, but it's not something we are told to look for or follow. It's the effortless thinking of your mantra until it disappears and the mind transcends that allows the whole body to take a rest that's twice as deep as sleep. The stress stored up inside dissolves and we come out refreshed. Since it's been about 35 years it might be good to have a refresher. You may want to contact your local TM Center to have your meditation checked. It's included in your initial course fee. I've had my meditation checked from time to time and was always glad I did. It resets the practice back to that effortless mode. We tend to forget these things and modify it somehow. It's good to be reminded and to have that experience again. Best of luck to you and your husband.
06:47 PM on 10/16/2012
Thank you -- you are, of course, correct.....as I have found some people resistant to the Formal TM process, I was trying to get them to first think about the breath, find the release that can come from that, and hoping that would lead them to the next step....but you are right, it is following the mantra that is the TM instruction.....I am sorry if I misled anyone. js
12:45 AM on 10/17/2012
Ah, I see now what you had in mind. Better that than nothing. Thank you for your honesty, Joan. That speaks volumes! Glad I found your column. I'm another Canadian living in the US. Nice to meet you. Please visit my blog http://theuncarvedblog.com.
11:02 AM on 10/16/2012
It is always good to hear how good people are making good things happen in their lives, especially when challenges are so close to home and are with those near and dear to us. For the record, though: Yes there are many approaches to meditation but there is only one approach to learning Transcendental Meditation, i.e. the specific technique that has hundreds of published of scientific studies verifying its efficacy. http://www.tm.org/benefits-of-meditation
03:37 PM on 10/16/2012
thanks for that information. Joan