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Family Caregivers Workshop
We are in the midst of planning a workshop for family caregivers. The location has been reserved and deposits paid. The date is August 15.
So far I have two speakers committed: one is the program director at an adult day center and the other is a registered nurse at an adult day center.
To insure that the workshop is relevant and what family caregivers need, I would appreciate your feedback. We are looking at a four hour workshop, from 10 AM until 2 PM. What do you think of the following format:
- four speakers, 35-40 minutes each
- 10 minutes for questions after each speaker
- last 30 minutes for open sharing
- workshop fee, $30 per person
Also, what topics would you suggest? If you were to attend a workshop for family caregivers, what are your three most pressing issues that you would want addressed?
We are excited about this workshop. I look forward to hearing your suggestions. Also, if you are in the Atlanta area on August 15th, I’d like to see you at the workshop. More specifics later.
UPDATE: Register here
Alzheimer’s is a Family Disease, Taking Care of Momma
There are over 5 million people in the United States alone who suffer from Alzheimer’s disease. It is estimated that at least 10 million baby boomers will develop Alzheimer’s in their lifetime. In this guest post, my friend, Myrtis Jones shares her family’s Alzheimer’s experience with their mother.
I am one of eight children, six girls and two boys. Growing up in a rural area in Alabama, we were a very happy family. We did not know that we didn’t have much, because there was so much love in our household. My father died in 1984. He was the joy and laughter of our family. Needless to say my mother was lost without him. We were concerned about her after his death and didn’t know if she would survive without him because my mother is an introvert. My father was an extrovert. Surprisingly, Mom has done very well.
Mother was the backbone of our family. She was the one that always made sure we were taken care of, and that we always looked good. Having six girls you know that was a job. She never grumbled nor did she show us anything but love. We got our share of whippings, but I am so thankful to her for the way we were raised.
Alzheimer’s Diagnosis
My mother is 87 years old and had begun to do weird things. So, one day my sisters took her to the doctor and she was diagnosed her with Alzheimer’s. This was devastating to our family. We had seen other people in our neighborhood caring for their elderly parents, and often admired them, because they demonstrated so much patience.
My mother cannot live alone anymore. She is unable to care for herself. She has to have help taking a bath, putting on and pulling off her clothes, brushing her teeth, etc. Now, she will only let some of us do this for her. Isn’t that something? Someone has to be with her at all times.
Let me tell you a little about my mom so you will understand our challenges.
The doctor recommended that we allow mom to stay in the hospital for fourteen (14) days for a study. They would observe and determine what stage of Alzheimer’s she was in and what type of medication she needed. Now we knew that when we put her in there, and after they observed her, they would have to rewrite the program, because we knew mom would do something that they had never seen before, and we were right. She cleaned the floor of the hospital from top to bottom, she had very little sleep, and she went from room to room nosing around. They had never seen anything like it.
Mom’s Primary Caregivers
My sister, Louise and her husband decided that they would move Mom into their home and care for her. Well now, that was easier said than done. We tried to talk my sister out of it, and that we should hire someone, but she said that is what she felt she was called to do.
My mom’s house is down the road from my sister, it’s in walking distance. Mom’s mind goes and comes so sometimes she thinks that my sister’s house is her house, and then at times she knows that she lives down the road. If you take your eyes off of her she will ease out the door and go home. We are very concerned about her now because the weather is changing and if she walks out without a coat she could freeze to death.
My siblings and I take turns caring for mom – we have a schedule. Her disease is progressing and she does not treat all of us the same. One sister says that it is hard for her to keep mom because mom acts like she does not want her to care for her. This disease seems to make Mom like some of us more than others. Those of us that she likes she behaves when she is with them, but the others, she gives them, you know what.
One Sunday my sisters decided that they would take mom to church, since she seemed to be doing so well. She behaved very well while in church, but lo and behold, after church when they had taken their eyes off of her, she was on the other side of the room, speaking out the pastor’s wife. Needless to say her days at church are few and far between.
The Energizer Bunny
My mom is like the energizer bunny, she never sleeps. I have never seen anyone who can operate off of two hours of sleep a night. My brother said that she had not slept in 48 hours. It was killing him instead of her so we took her to the doctor and they gave her a stronger prescription of sleeping pills.
Louise thought that keeping her busy would help her, so she told Mom that they would clean the garage, which took hours. Well, the only one tired was Louise; the energizer bunny was still going. After that, Louise ended up sick and Mom as well as could be.
My mom is very mobile. She has always been a busy person. She is one that has a hard time sitting and enjoying life. Have you ever seen a person who always has to be moving, that’s my mom. So with that said, on my watch, she wondered off and I did not know where she was. I told her that I was going to go upstairs to take a bath, now when I decided to go and take a bath she was sitting in a chair nodding off to sleep, so I thought. When I finished I called for her and she was not there. I ran out of the house to look for her. I drove down to her house and there she was. My brother said that she had walked down there. We are so blessed because we live in a small town and everyone knows her. The neighbors all know what we are dealing with and when they see her they will bring her home.
Now when you see or talk to my mom you may think she is very much on top of things, because she is very alert. The only time you will know that something is wrong is when she asks you the same thing a hundred times.
A Helpful Resource
The best thing that has happened to us during this time is that someone recommended a book to us, The 36-Hour Day by Nancy Mace and Peter Rabins. This book has helped us tremendously. We now know what to expect and how to deal with mom. We know that we can do things that she enjoys doing and if we just put my dad’s picture there for her to look at she will talk to it and continue to work. This book has helped us to realize that this is a disease and she is not herself. Whatever she says just go along with it. I have found that it really works. If she tells me the sky is purple I just say okay it sure is. It has helped us to realize that this is a disease. If she knew better she would not do these things.
I truly know now why God gives different gifts to families. My hat goes out to two of my siblings, Pat and Louise, who are very gifted in caring for the elderly. My sister, Louise, has that special gift. She knows what to say to her and how to say it. May God forever bless her and her husband. These two siblings live near mom so the burden is on them. We can only get home once or twice per month to give them some relief.
I, on the other hand, know that I have to continue to pray for patience and the ability to care for my mom. I love my mom very much, and I will do anything for her, but I am not as strong in that area as I would like to be.
I pray for all caregivers around the world.
Related Reading
Sending Momma for an Alzheimer’s Assessment
Dementia, The Elections and Voting
Immediately after we moved Gladys to Georgia it became quite apparent that she was aware that Barack Obama was running for President of the United States. But all she could remember to ask about was “the black man running for president.” Because of her dementia, he doesn’t know that the year is 2008 and she can’t remember what day it is. As far as the 2008 elections are concerned, she knows there is “a black man ” and “an old white haired man” running for president. Her words, not mine.
I am a firm believer in voting. I don’t care who your candidate is, I just believe everyone of voting age should cast their ballot. With this in mind, I was faced with a difficult decision. Should I let Gladys register to vote in Georgia?
If Gladys registered and voted, I would have to fill out her registration form, take her to the polls, go in the booth with her and cast her ballot for her. I’m not even sure that I would have been allowed to do this. I am absolutely sure that Gladys would have voted for Barack Obama. The decision I made was what I believed to be one of ethics and integrity. In good conscience, I could not register her to vote.
I came across a similar issue by Carol Bradley Bursack on Agingcare.com. Here is an excerpt of her article, Should Aging Parents with Dementia Lose the Right to Vote:
As Mom’s dementia grew worse, I started to wonder a bit. Could I just let the election slip past? Would she notice? Where did her rights stop? I’d felt guilty when we stopped Dad’s voting, but there wasn’t as much gray area. He really had gotten past the point of awareness and decision making. With Mom, it was different.
I found that she was very aware it was election time, even if she couldn’t remember if my sister had come to visit or not, the Sunday before. I was also aware of how steadily dementia was eating into her dignity as a person and devouring of her decision making rights. I agonized over voting rights and whether she should do it.
However, until the last couple of years of her life, I kept helping her vote. Was I right? I knew her preferences. In hindsight, I probably should have had a third person help, but who but family would have known her past preferences and her political beliefs? How would it have helped to have someone sit there as we discussed it? I’m not sure, but maybe I should have. What is done is done.
I don’t have an answer to this problem but I’m sure that Carol Bradley Bursack and I are not there only caregivers who have struggled with this issue. As we prepare to vote tomorrow, I wonder what you think about this issue. Let’s start a discussion.
