well… where should I begin!? I have taken care of my grandmother for over 15 years. After her fall last year, she was released from the hospital under hospice.  Her son took her home to live with him . . .  His wife does not care for me or my grandmother.  We have repeatedly had fights! My grandmother has told her son, she wants to come back home and live . . .  He has refused her request twice.  His wife does not care about my grandmother.  I have thought about getting an attorney.  He is almost keeping her like a prisoner.  He does not let her out of the house except to get a haircut.  HELP!!  And I am just the grand-daughter who has cared for her. .

My mother spent 3 months in a hospital in Washington DC. Relearning how to eat, walk, talk, bathe, go to the bathroom. The staff retaught her to fasten her seat belt, open a door and spell her name.

The amazing thing is that she never forgot us. She smiled every time my father came to see her, which by the way was every day for the first 2 months and then 4 days a week or more when he could. My father had to work every day, but he still managed to travel almost 2 hours both ways from Southern Maryland to DC to take care of her. He was so in love with my mother and would do anything for her. It’s sad to say that this might have been a big part of why he is no longer with us. You see, 2 weeks after we brought my mother home from the hospital, my father had a heart attack and did not survive. I believe, that the stress was to much for him and he passed away literally from a broken heart.

As soon as my sister and I heard the news we were on a plane from Nevada to Maryland. We had the funeral, talked to lawyers, packed up my mothers most needed possessions and moved her back to Vegas. That’s when I became my mothers legal guardian.

Judy has her good days and bad but we take it step by step. The process is never easy but we do our best. I am sad sometimes, lonely most of the time and tired all the time. If I stopped to think about how we got here and how my mother used to be, I could not do this every day. So I don’t think about it. I just do it.

Mom has a lot a difficulty with oral hygiene. Her disabled right hand makes flossing out of the question. She uses a water pick as best she can. One evening, she wanted to clean her teeth thoroughly. She decided to use the water pick with some mouth wash added to the water in the reservoir. She placed the water pick in her mouth and turned it on. That is when all hell broke lose.

Have you ever seen a fire hose dance on the ground like a boa constrictor? The water pick filled her mouth to overflow . . . she was foaming at the mouth when she pulled it out. Before I could get hold of it, there was watered down mouth wash all over the ceiling, mirror, floor, Mom and me. Mom was making her usual muffled sounds of panic, “OH, OH, NOOOO!” I just starting laughing and couldn’t stop. What else was there to do? It reminded me of the old Woody Allen movie in which all the appliances take on minds of their own.

Come to think of it . . . Better keep an eye on those water picks and don’t forget to laugh!

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

Alzheimer’s disease

The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life, 4th Edition

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.