Subscribe to RSSArchive for the ‘Your Story’ Category:
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
Online Launch: Connecting Caregivers to Medicare Resources
Yesterday I received an invitation from the National Family Caregivers Association (NFCA) about the e-launch of the Center of Medicare and Medicaid Services’ (CMS) Family Caregiver Initiative: Ask Medicare.
There will be an online launch of Ask Medicare on Thursday, September 18, 2008 from 12:00 – 1:00 PM EST in a Live Webcast: Connecting Caregivers to Medicare Resources. In the Webcast you will:
- Learn about new online resources for caregivers
- Post questions to CMS Acting Administrator Kerry Weems and a panel of experts online
- Sign up for the Ask Medicare bi-monthly e-newsletter
For questions send an email to: caregiver@cms.hhs.gov
You can click here to register for the live webcast.
Please share this information with other family caregivers.
Living With MS: Taking Care of Mike Part 2
This post was submitted by Veronica Keyes. Please see her earlier post: Living With MS: Taking Care of Mike.
Homage to My Hero Mike
It has been two years and eight months since my husband, Mike Keyes, was admitted to a nursing home. During that time I have seen how MS takes hold of a person and refuses to let go. I wanted to write this post is to show the changes in Mike’s life.
Mike the Handy Man
Mike was not a college grad, however, he could hang with the best of them. He was well read and diverse in many subjects and areas. He never received formal training for electronics yet he could fix anything. He made the speakers for his DJ system from old parts – he was definitely electronically inclined.
To put a bike together was no challenge for him, in the early years of marriage, Mike made a functioning bike from old bike scraps. Many years ago our neighbor, Mrs. Mae had a broken window fan she didn’t want to throw away. Mike came to the rescue and somehow got her fan to work. Before we relocated to Georgia in 2005, Mike implemented the audio/technical system at our church with a minimal budget and was entrusted to maintain it for many years. During the Christmas season he would purchase items for the children he had to put together. It was a challenge for him to do it without instructions. I frequently jest with Mike calling him the jack of all trade and master of all. He proved that to be true each time.
Mike the Provider
Mike was not a lazy man, throughout our marriage he held 2 jobs and always had time for me and our 3 children. In 2000 he worked as a phlebotomist and a certified nurse assistant. His ultimate plan was to become a registered nurse, but that dream was halted when he was diagnosed with MS. Mike would not let that prevent him from providing for his family. He had another plan he went to school for real estate, shortly thereafter he became too ill to actually sell homes.
Mike Today
Today our lives have changed. I visit Mike in the nursing home and it’s difficult for us to talk. We look at each other and our eyes speak more than Mike and I speak. It’s as if our eyes are feasting on our memories. Our conversations are limited because most of the times he is unaware that he has just asked the same question several times. What was once so easy for him to do is now a major chore that seems unattainable – the art of holding a conversation. The joy of plucking my brain or sharing his wealth of knowledge has dwindled to “Ronnie, how are you and the children?” Occasionally, he will surprise me and tell me he is so proud of me. I wait thinking today we will have a conversation of substance. Then as I began to get excited he regresses to “So Ronnie, how are you and the children.” There for all to see, the cruel face of MS reveals itself again.
Throughout this post, I used the word “was” because MS has taken Michael away, and it has given me Mike. I don’t want anyone to feel I’ve abandoned Mike. Not at all, I have to accept that Michael is different. I am grieving Michael and embracing Mike. Yes, it is a coping mechanism for me. I don’t apologize for that because I have to do what keep me sane and focused.
Mike and I realized many years ago we were put together for me a reason. We often joke I was put in his life to tell him about Jesus Christ and he was put in my life to spoil me rotten. It has worked for us we are truly great friends and we balance each other.
Be encouraged.
