Caregivers should be given a sainthood. It is that simple. This article is something different for CDA News. Instead of reporting on someone else, I am sharing my experience taking care of my elderly mother who suffered from Alzheimer’s disease, or some form of dementia. I say or because I have learned, doctors just do not know. No one can be sure until an autopsy, if one is called for, is done. Whatever it was, dementia or a label like Alzheimer’s, it was devastating to watch mom decline.
Let’s back up and give a nutshell recap how we got to where we are today. My mom was suffering from heart failure, and a decade ago, while just showing signs of “senioritis,” she needed surgery to replace two valves in her heart. Doctors felt that after the surgery she would bounce back and be stronger than ever, but instead, she spent a month in the hospital slowly recovering. Dementia had started to advance, and mom would never walk without a walker or assistance ever again. But she was strong. For the first couple years, I was working full-time, able to come home every couple of hours to take her to the bathroom, fix her food, whatever she needed. I slept about 15 feet from her in case she needed to get up during the night, and when I say slept, I was on the couch, staring at the TV until she made a noise.
I had a sibling who lived a couple of miles away, but their idea of taking care of mom was calling on the phone and asking if she needed anything. Not following directions to make sure she was fed, taken to the bathroom, or any needs met. Another sibling lived hundreds of miles away, but would come visit and was fine taking care of mom for a short period of time, but it was few and far between visits.
Mom got stronger and was finally able to get up and walk, with her walker, on her own. For a while I did not need to go home every couple of hours, but still checked on her regularly. A photojournalist by trade, I was always out shooting something, from little leaguers starting out up to professional and Olympic level sports, politics, and more. And that brings us to a little over three years ago.
Mom’s Alzheimer’s got real bad. I had to step away from photojournalism and focus on taking care of her. This meant working from home. Thankfully, my wonderful wife started CDA News and I came on as Director of Photography and Chief Operating Officer. But being a small publication, I was not making a lot of money, not like what photojournalism was bringing in, but it allowed me to stay with mom, taking care of her, 24 hours a day.
I would get offers of help from my siblings, but they were thinking more of looking important taking care of mom, taking her out to get coffee or anyplace they could be seen making over her, and not really concerned with her actual care. So I would decline the help. Neighbors would offer to sit with mom to give me a break, but I did not know them well enough to even want them in our home. So mom’s care became my 24 hour a day job with my wife helping as she could.
A couple of weeks ago, mom fell, which landed her in the hospital for a week. When she was released she was not well. Her kidneys were not functioning right and she was dehydrated. I held hope that she would bounce back being at home, but my siblings were ready for her to just die. They wanted to just get on with their lives and not be bothered with a 10 or 15 minute visit every so often. I did my best to turn mom around while keeping her as comfortable as she could be. We laughed, we sang, and every day for a week mom would tell me she did not want to die. Yesterday morning she could barely talk. A lot of squeaks and laughs, but she was able to kiss me and say that she was afraid and did not want to die.
Mom went to sleep before she could eat dinner, and that was fine. Sleep was good for her, and when she woke, I would get her fed. I ran to the bathroom and on the way back she was staring at me. I leaned down and she kissed my cheek and said she loved me and fell back asleep. Within a few minutes she stopped breathing. Just like that, she was gone. I was immediately lost. Twenty-four hours a day I took care of her, and now she was gone. What do I do now? Sure, there was calling hospice, them scheduling a pick-up of mom, visits to the mortuary and getting things in order, but then what. Every day for 12 years I have taken care of mom like she was a toddler down to almost a newborn baby.
No one thinks about a family caregiver when the family member being taken care of dies. They take the loss harder than anyone. Being out of the regular workforce, trying to figure out what to do financially, getting back on their feet, and just living their life is not an easy task. It is one that has left my head spinning. I do not have an answer, every case is different, but when a loved one dies, it is important to not forget that the primary caregiver is still there and may need a hand.
Have you been in a similar situation with a family member dealing with Alzheimer’s or dementia? How was your transition back to a normal life? Was it easy or hard for you? Share your experiences in the comments below.
By Cletus Dillwood