Reflections of a Primary Caregiver

Many of my family and friends know that I cared for my Aunt Lee diligently during the last years of her life. While we had been close for some 20 years since she and her husband moved into Leisure World, the retirement community that is close to my home, I can say that since 2005, my relationship with my aunt has been much closer. I promised her husband, my Uncle Charlie, as he was dying in Sept., 2005, that I would look after her needs, but it's also just who I am -- I do those kind of things.

Each visit with her was an adventure. Back when she was more prescient, she would tell stories about travel adventures that she loved. We would go to the grocery store and do some vicious price-comparison shopping. We would enjoy meals together, and have ongoing discussions about current events.

Then matters slowly began to change. What appeared to be some forgetfulness was diagnosed as Alzheimer's Disease. My aunt was forgetting to take medications from time to time, or sometimes would forget some other things, but nothing major. ... until ... one day she left the stove on. I caught it -- no fire -- but that was a motivator for me to get some help.

Through the services of a social worker, we identified a company that provided companion care. The company is called Home Instead. That way, someone could be with my aunt during the daytime to help out. Anything from just having someone to talk to, to ensuring she bathed, took her meds, ate meals, and did laundry.

As time and her condition progressed, we expanded the companion care hours and I extended my involvement in more things than just visits. From ordering and organizing her meds to interacting with her physicians to handling her finances (paying bills, filing tax returns, etc.) ... in the last two years, I was pretty much managing her entire life.

Some people have asked, "why didn't you move her to live with you?" Short answer: changing surroundings to a place that was unfamiliar would frighten her. Plus, my home has lots of steps, and my aunt was becoming too weak to navigate steps. What we wanted most was to make sure that my aunt could stay in her own home, as she wished, and as I had promised Uncle Charlie that I would make happen.

Besides exercising my fiscal and caregiving responsibilities, I tried hard to have times just to visit. To laugh. To tell stories. To have a friend come over and cut and style her hair. To speak with her in other languages. I learned that while Alzheimer's Disease causes someone to forget what she just talked about, it does not affect intelligence. Allegra "Lee" Lopes was a very smart woman. She was among very few women who earned a Bachelor's Degree from Hunter College in 1934. She could carry a conversation in English, Spanish, French, and Italian even up to her last days.

Contrary to what some people think, Alzheimer's Disease does not cause everyone to be bitter or angry. I was pleased that my aunt remained happy, calm, and positive throughout her aging and Alzheimer's-imposed memory decline.

One year ago this week, I fell and broke my ankle. My daily visits with my aunt stopped suddenly because I literally couldn't move. While my aunt's companion caregiver still came every day, there was an observable change in my aunt's behavior. She really missed me, and withdrew. Gosh, it hurt to observe that happening.

The very moment I could hobble back onto my feet, I went over to her home. I observed that my aunt had become significantly more feeble and frail.

Then, in May, she began complaining of significant pain in her back. Turns out that she had two compression fractures. The pain became the singular focus of my aunt's attention -- she forgot to eat, to drink, and to bathe. Within a few weeks, she was a medical mess, and I had to have her hospitalized in June for treatment of mild malnutrition, dehydration, and a minor infection.

Returning from the hospital was a feat, orchestrated with the help of friends and family. But we were able to get her back home, into a familiar environment. I worked with her caregiving company, Home Instead, and got personal attendants (caregivers) on-board 24 hours a day, 7 days a week.

You'd think, then, that my job was over. Other people were taking care of her. On the contrary, my job was becoming more intense. But I did what I had to do. And loved it. Sure, it was hard sometimes to observe my aunt's physical decline, on top of ongoing memory decline, but if my aunt taught me anything, it was how to age with dignity and grace.

Her caregiving team and I developed a great working relationship. We learned new ways of sharing information with each other about my aunt's ongoing condition and changes, as well as physical, mental, and medical needs. From a four-page grocery check-off list to a tremendous detailed log that everyone could follow to know what and when my aunt ate, pooped, bathed, and so forth. That log was incredibly helpful as I used it to interact with her physicians and to let me know about her ongoing nutritional and caregiving requirements.

I never really counted the hours with which I devoted attention to her care -- both in personal visits as well as while I was at home contacting family, doctors, and Home Instead management on a regular basis.

What it all came down to is asking myself, "how would you like to live until death?" -- simple answer: "at home, comfortably." That's what I did. Yes, that was a promise that I made to her husband, my sweet Uncle Charlie, but it was also a promise that I made to her, and to myself. "Make it happen." So I did.

I have two recent precious memories: her 96th birthday party, celebrated on January 2, 2011, with cake, ice cream, and sharing joy with her caregiving team and two of our Delegates in the Maryland General Assembly: Ben Kramer and Bonnie Cullison. My aunt was presented a House Resolution recognizing her birthday. She was thrilled.

On Monday, January 24, I have another fond memory. Her caregiver suggested that since two of us were there, that my aunt should exercise by walking. I got her up, we walked into the Living Room, then rested a bit, then walked back. Aunt Lee turned to me and said, "how far did I go?" I casually replied, "well, not quite a marathon." Then Lee said in her dry wit, "well, a marathon is 26 kilometers. I have only walked two, so that's 1/13th of a marathon." That just astounded me as both a demonstration of how Alzheimer's doesn't affect intelligence, but also how she could come up with such funny things to say.

Unfortunately, Aunt Lee's condition was very frail, and any little thing could have -- and did -- set off a chain of consequences that resulted in death. On the evening of Monday, January 24, she had rapid-onset aspiration pneumonia which caused less oxygen to reach her heart, and she suffered a heart attack. Her caregiver on duty saved her life by responding immediately to call 9-1-1 and then me. Admission through the E.R. to Intensive Care at Montgomery General Hospital followed. While those events did not directly kill her, she was not able to recover. On Wednesday, January 26, she died peacefully with two of her caregivers by her side, and was not in pain. She actually had a slight smile on her face when she passed.

I am not bereft or lost or crying hysterically. I learned so much in caring for my aunt, including preparing for and accepting that death is part of the circle of life. I am at peace with myself in knowing that I did all that I could, and my aunt was happy, safe, and loved. It is fitting that our last words with each other were, "I love you."

Many times you've heard me say, "life is short: show those you love that you love them." I practice doing that all the time. Most regularly with my aunt, but also with some other precious people who I look after, but who also look after me.

Life is indeed short: make it worth living by extending your heart to care for others.