cecejohns49's Journal

I'm new to this website, and I'm glad I found it. The opportunity to share my thoughts, to respond to the thoughts of others, to offer and receive support is just what I needed.  Thank you.for having a space where I can talk about my mom's dementia and how I'm feeling on any particular day, at any time. 

After a lengthy physical and neurophyschological assessment, my mom was diagnosed with dementia and probable Alzheimer's in April 2005.  She was 78.  I have an older brother in town and a younger sister in Houston, both with families.  Somehow I became Mom's primary caregiver and the number one day-to-day decider (smile). It's ironic that I've chosen to take on the responsibility of caring for her, given that when I was young, I was the difficult middle child, the one who made her cry most often and the one who was the most like her.  Maybe it was because over the years, my relationship with my mother had been passionate - marked by lots of love, resentment and anger that I've since worked through.  Here's our story.

During 2004, I noticed that Mom was starting to call me more frequently and for seemingly unimportant reasons.  While I didn't ignore her requests for me to come over and fix something, I thought she was just making up reasons to see me. To me it seemed that she was never content - I wasn't stopping by enough, I didn't include her in my life enough, I didn't stay long enough. Her critical approach had always been hurtful and unproductive and I resented her demands for attention. 

Around August 2004, she asked me to come by and help her with her bills. Because she had always been a strong, independent person, I was surprised that she had asked for help.  I realized that evening that she couldn't seem to understand what the bills were for, how much they were or if she had paid them.  Then I realized that she didn't have a family physician, and had only been going to her heart specialist.  She didn't have any glasses and couldn't read well.  That was when I realized that something was definitely wrong.

I scheduled a physical with my family physician in September. During that visit, she admitted to having trouble remembering things.  He referred her to a senior health center later that month.  Over the next few months, I went with her to the center, where she went through a battery of diagnostic tests, including an MRI, CAT Scan, EEG, EKG, blood work, X-rays, and, finally, a neuropsychological exam.  The results came back in early April 2005, around the time that my aunt, her only living sister, had come to visit. Although the results were clear, Mom has gone through the typical stages of grief - denial, anger, denial, bargaining, denial, anger - for most of the last two years. 

As soon as we had the diagnosis, we met with the medical team at the senior center, who recommended, among other things, that Mom no longer live alone.  I began to contact some assisted living facilities and doing the research about Alzheimer's and dementia, and shared it with my siblings. Needless to say, they were in total denial that anything was wrong with mom that couldn't be cured with prayer or a good 'talking to.'  The one good thing we did was to create a POA to provide with me, and my brother as alternate, the power to make financial and health choices, along with a  living will and final will and testament.  This step has saved me an unbelievable amount of time, money and headaches.

It took another 2 1/2 years for my family to be able to agree that Mom should no longer live alone. We started out by hiring my sister-in-law to work 10 hours per week.  This worked for the first summer.  When school started in 2005, I hired a part-time caregiver to come by. She was a companion who only cooked meals.  I was still coming by and doing housework, paying bills, taking her to the doctor, filling prescriptiions, doing the shopping and taking her to church.  That worked for another three months. We then hired someone else from the same agency who was willing to do housework (at an extra cost), and drive Mom to the doctor and the grocery store.  She was very helpful, but expensive, and was beginning to become invasive in areas that we felt were outside the boundaries of her job. This relationship lasted about a year.  By May 2007, we could no longer afford to pay the caregiver and Mom's other expenses and let her go.  For the next three months, I paid my daughter $10 an hour to stop by Mom's house for a couple of hours each day.  Mom stopped eating and bathing.  While Mom's capacity was steadily diminshing, I needed the support of my siblings to make the necessary decisions to move Mom out of the house and into something more supportive. The final straw happened about three months ago. 

In June 2007, I was hospitalized for what I thought was a heart attack. I'm married, work a full-time job as a mid-level manager of a large department in a state housing agency, and have a daughter that was just graduating from high school. Even though my brother and sister never  argued about the fact that she needed more care, they didn't seem to understand that something needed to be done right away until I said that I couldn't continue to care for her without risking my own health.  By July, I had their full cooperation.  I had won the war without firing a single shot!  Mom and I visited the assisted living facility I had selected while going to a doctor's appointment, and I signed her up to move in on September 1.  When we got home, I held her in my arms while she cried.  I cried, too.

Mom moved into the assisted living facility as scheduled.  It's about 5 minutes from my home and she knows a fair number of the residents. She has made a pretty good transition so far, and so have I.  I now realize that caring for her is a marathon, not a sprint, and that I won't last unless I take care of myself.  For me, this means connecting with God on a daily basis, getting enough rest, saying no, knowing that I'm a limited resource, staying hydrated and exercising regularly.  It also means sharing with others and asking for help. 

Thanks for listening and letter me share.