My mother was the same person I always knew. She was not a different person. Her brain was sick. She still enjoyed many of the things she was doing before Alzheimer's disease.
For us, communication and socialization went hand in hand.
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Socialization in dementia care can mean going out and meeting people or hanging out with friends.
By Bob DeMarco
Alzheimer's Reading Room
I am not using the clinical definition of socialization here. Instead, I am describing a continuing process that leads to the establishment of norms of behavior and communication in the Alzheimer's disease environment.
I think most Alzheimer's caregivers understand that the Alzheimer's patient can benefit from being in social settings and engaging in communication.
Sadly, the exact opposite sometimes occurs as the patient and caregiver fall into the black hole of Alzheimer's disease.
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One of the easiest ways to get an Alzheimer's patients socialized and communicating is Adult Day Care for Alzheimer's patient. This is especially true if the care center includes activities like music, art, bingo, and memory games or tasks. Essentially, using the parts of the brain that are still functioning. Thousands of caregivers have written and told me that day care facilities bring out the "more there" in the deeply forgetful.
Only a tiny fraction of Alzheimer's patients attend day care facilities.
Rather than go through the entire process that lead me to my current beliefs on communication and socialization, I'll skip up to the day that I came to what turned out to be one of the best decisions I ever made.
I decided that
Dotty and I would begin living our life as we always had.
I actually wrote those words on my da Vinci pad with about 50 circles around the words.
Then I went about the task of writing down the kinds of things we use to do, and the kinds of activities that Dotty enjoyed. I actually had to remind myself and make a list.
The first idea failed miserably. I started taking Dotty out to dinner at nice restaurants. It didn't work. Imagine me trying to talk about the quality of the food, or any of the kinds of things you discuss over a nice night out. Dotty often sat there without saying a word. In addition, she looked like she had been dipped in something that smelled bad. Me. I didn't enjoy the outing and I ended up with a sore stomach and full of angst and stress.
Soon I came up with a better idea. Sit outside at a bar where you could also order food. I already wrote about the good and the bad previously. And, about how I discovered what worked for us.
I suggest you go read this article -- Dotty and I Live Our Life as We Always Had -- You Can Do it Too -- it is a bit long but it covers all the bases.
I never said it would be easy to do as I do. Go read, come back. Comment.
Let's put it this way. It took me years to learn what I now know. It might take you about 20 minutes by the time you work your way through all of this. Then you can get on with the business at hand and start living your life again.
So pretty soon Dotty and I started doing things that we had always done. Soon I came to new understanding of what Dotty was capable of doing. No laments from me.
I came out of the black hole and I took Dotty with me.
I want to make an important point.
My mother started living a higher quality of life as a result of my simple decision -- we will live our life as we always had.
Every time I introduced a new variable, Dotty's behavior improved. She was no longer mean. She stopped telling me to get out. She stopped saying she wished she were dead. She started smiling. She looked more there. My stomach ache went away. I was happy and so was Dotty.
As the quality of my mother's life improved so did the quality of my life.
The point. You can improve your own life as an Alzheimer's caregiver by improving the life of the Alzheimer's patient. This is not a chicken and an egg thing. You are the chicken and your loved one is the egg. Fragile yes. Take good care of the egg and nurture that egg and it might become a baby chicken.
OK that is the back ground.
To the degree possible I treated my mother the way I always had.
Many of you that listened to my Podcast with Dotty were surprised when you heard how I interact with her. The way we talk. Well, it didn't happen overnight but I learned how to communicate in Alzheimer's World.
In Alzheimer's World, Dotty and I can have a nice conversation. No, we can't discuss the politics or what is going on in the world. But yes, we can discuss the food section in the newspaper as long as I put the newspaper in front of her. So yes, we did have to make adjustments.
I can say this. I missed discussing politics and hot news like the OJ trial with Dotty. For a while there we weren't discussing anything. Heavy heart, stomach ache. Discussing recipes and the front page of the paper are an excellent substitute. Makes me happy. When I am happy better chance that Dotty is going to be happy. I guess you could say, beats where we were when we had stopped living our life.
This brings me to creating a world filled with communication and socialization.
When Dotty woke up in the morning she usually started by saying, I am awake you know. If I didn't get there right away she might say it a few times. Or she might start saying, Bobby where are you? Sometimes she said, I'm in the kitchen. This tickles me. Why? Because she wasn't in the kitchen, she was standing in the doorway of her bedroom. Actually frozen there. She couldn't move until I get there.
When I arrived there I put my two fingers and thumb on my mother's wrist. More or less like I am taking her pulse, although the two fingers are on the pulse side. This is called anchoring. Then I put my head on her head and I say something very positive. Could be as simple as it is a nice bright sunny day outside.
If Dotty smiles or says something positive -- mission accomplished. Every day has to start on a positive note. If Dotty smiles we are off to a good start. Better than that dull look I use to get every morning.
Next, I would take Dotty to the kitchen table. When she sat down the paper was there in front of her, and I asked the same question every day. What day is it? Sometime she got it on her own. Usually I had to tell her to look at the top of the paper to find the answer. Sometimes I had to point to the day and date. Point. Mouth shut.
Did you ever wonder why Alzheimer's patients ask repeatedly -- what day is it? Because we all live our lives by knowing the day and time. Ever said -- TGIF? Ever thought something like this -- its Thursday, my favorite show is on tonight. Do you wear a watch? Why?
We all bring order to our lives by knowing what time it is and what day it is. If you don't me believe start keeping track of how many times you think to yourself what day is it? Or bring order to your life by thinking today is (fill in the blank). Or think, I have something important to do next Thursday.
Well guess what? If you don't know what day it is, you won't be able to put the rest of your life in order. You won't be able to think -- Thank God Its Friday.
A person with Alzheimer's never knows what day it is. They can't remember even when you just told them. When they ask what day is it, they are trying to bring order to their own life. They are doing something that they have done their entire life. We all need to know the day and time to function. Well Dotty was trying to bring order to her life for 87 years before Alzheimer's walked in the door. Now she needs a little help to bring order to her life. I supply this with good communication in the morning.
This explains why at the start of every day, I asked Dotty what day is it? I don't tell her. I let her read the day and date to me from the top of the newspaper.
You see we live our life the way we always had. We did make a little adjustment to the way it usually works.
By the way.
After we started doing this, Dotty stopped asking me repeatedly, what day is it? Now, I usually do something to remind her what day it is several times during the day. For instance, I showed her the Powerball ticket. I say, here is your Powerball lottery ticket. The lottery is on Wednesday, today is Monday. So two more days until the lottery. Can you look down the bottom and tell me how much the lottery is this week? She gets it sometimes and other times I point to the amount. I keep my mouth shut. Sooner or later she tells me.
This is a lot to absorb, so I'll stop here for now.
Previously, I wrote about bright light. That is number five on my list. Communication and socialization are number four.
Our life and our quality of life became. It continued to improve because I continued to observe and get new and better ideas.
Don't get me wrong, it is sometimes difficult. However, that is on the illness side of the equation.
I guess you could say, when I made the step into Alzheimer's World I really did not think my mother had Alzheimer's disease.
I learned she was still the person I always knew.
We lived our life one day at a time. You can do it too.
Alzheimer's Disease Tip Communication and Socialization (Part 2)
Communication and Alzheimer's - Alzheimer's Association
Alzheimer's: Tips for effective communication - Mayo Clinic
Communication and Behavior Problems: Resources for Alzheimer's Caregivers
Original content Bob DeMarco, the Alzheimer's Reading Room
Dotty, 95 Years Young
From: Persell, Caroline Hodges. 1990. “Becoming a Member of Society Through Socialization.” Pp. 98-107 in Understanding Society: An Introduction to Sociology. 3rd ed. New York, NY: Harper & Row, Publishers, Inc.