3 Things New Caregivers Need to Know About Alzheimer's
Like many members of our community, I subscribe to a variety of Alzheimer’s sites. This morning, I happened to check my Facebook account when Remember for Alzheimer’s Facebook page had this post: “What was one thing you wish someone would have told you when you first became a caregiver to a loved one with Alzheimer’s?”
That question snapped me back in time to 2005 when I sat sobbing on the curb outside of the hospital’s emergency room. I didn’t exactly understand what was going on with my mother, but I was definitely sure that something definitive had changed. Mom already had shown some memory loss and paranoid during that visit. However, the turning point came the night before the ER visit when Mom had an uncharacteristic mood swing, threatening to break things unless I left my graduate class and headed straight home. As soon as I returned home and let the home health care sitter leave, Mom told me she was disowning me. That comment was like a sucker punch since Mom and I had been best friends for 40-plus years. Thirty minutes later and Mom was back to her usual self and was back to being friendly. The next morning she experienced respiratory distress and chest pains, prompting the ER trip. I told the paramedics about Mom's mental issues and asked them to relay to the doctor that she might need to be mentally evaluated.
Remember for Alzheimer’s question also snapped my dad back to 2002-2005 when Mom was beginning to have memory lapses. Dad would go about correcting her, which increasingly threw her into a rage. That cycle continued to the point where Mom thought he was stealing from her and there were serious threats of divorce.
So thanks to Remember for Alzheimer’s question, here are three things that Dad and I wish we had known when Mom was descending into Alzheimer’s:
- Mom’s responses that terrible night when she disowned me were due to the disease, not to her true feelings about me. She had no control over her response, and in fact, had picked up on and then mirrored my stress and exhibition of anger earlier in the day when I uncharacteristically snapped after she kept nagging me to do a minor household chore (which I didn’t feel was as important as dealing with her current and very serious medical issues, studying for graduate classes, and maintaining my career). After her official diagnosis with Alzheimer’s disease, I saw Mom have these lightening-like moments of rage that burst out of nowhere. I finally learned not to take them personally and found that if I took a proactive approach by projecting a sense of calm and serenity whenever I visited her, she would soon adopt that demeanor.
- You don’t have to have to be right; instead, you need to roll with the punches and not be antagonistic toward the individual who has dementia. Dad didn’t learn this lesson until after Mom was placed in the nursing home. Unfortunately, their epic verbal battles while she had mild cognitive impairment from 2002-2005 scarred his psyche and required a lot of time for him to heal and forgive himself. But once Mom was in the nursing home, Dad finally learned to let Mom be in her own reality and quit trying to correct her when she offered her version of what was going on that differed from what everyone else was experiencing.
- As a caregiver, you need to take care of yourself as much as you care for your loved one with Alzheimer’s. I knew that Mom was really struggling when she called me in mid-August 2005 and said she needed to leave Dad. I didn’t realize, however, what all of her issues entailed. That didn’t happen until I joined them for a doctor’s appointment in late August when the nurse told Mom that her blood pressure was 80/40 – a normal blood pressure reading should be around 120/80 – and neither of my parents realized there was anything was wrong. I went into hyper-caregiver mode and put a lot of stress on myself for the next few months as we went through three emergency room visits, Mom's two-week stay at an out-of-town psychiatric hospital to get the Alzheimer’s diagnosis, and placement in the nursing home. Oh, and I still kept up with graduate school and work, and also got to ride out Hurricane Rita. By November 2005, I found that all I wanted to do was sleep, thanks to the high stress levels that finally caught up with me. At that point, I made a decision that I needed to protect my own health by adopting a lifestyle that would help me get through the marathon that is caregiving.
These are just a few of the things that Dad and I learned quickly as Mom’s memory issues progressed. So what have you learned? Please share!