Who Cares?
The Caretaking Chronicles August 30, 2025
During my summers off from college, I worked in the toddler room at a daycare. I loved the toddlers and their boundless joy, their risk-taking as they tested limits, and their love of peanut butter and graham crackers. They were fun and still close enough to the thin veil separating this realm from others. They were imaginative and creative. In the afternoon, before naptime, there would be an almost collective meltdown as threads thinned and their bodies needed to rest, but their minds and desire to play told them not to. I saw their sleepy eyes and bodies in motion until they were so exhausted they had no choice but to sleep.
Yesterday, I was reminded of that level of exhaustion and felt it in myself, but also kept moving because that was what was required. Laying it all down is something I wish to do at times, if only life were that simple.
Late yesterday afternoon, while at the bank making a withdrawal for my mom, I received a message from her Primary Care Physician. I called them back and spoke to someone who told me a nurse from the home health company that provides care for my mom had called them. The nurse who called my mom’s doctor’s office from the home health agency shared concerns that my mother was being neglected and that her needs weren’t being met. I wasn’t yet sure if they were implying that I wasn’t meeting my mother’s needs or that her independent living community wasn’t meeting her needs. By the way, when someone lives in independent care, they don’t receive assistance unless they or their family arrange for it.
I continued to listen and, in pretty stern terms, was told I need to bring my mother in for a visit with her primary care doctor. I explained to the nurse that my mother had seen her doctor a little over a month ago, and he had made a referral to the neurologist. I took her to see the neurologist, and today, in a few hours, I have to take her to get an MRI. I went on to share with the doctor’s office that my mother lives independently, has refused to move to assisted living, and protests every time we have to see a doctor. My mother threatened to punch me the last time I took her to see a doctor. She also thinks I was in on “putting her to sleep,” which never happened before the neurologist gave her the mental status exam and did bloodwork to assess whether or not she had Alzheimer’s disease. The mind is so adept at denial, and my mom’s mind is working overtime to resist her diagnosis.
The person on the phone said, “We really need you to bring her in since home health has suggested her needs aren’t being met.” I said, “I am not sure what needs they think aren’t being met. I am doing everything I can to take care of my mother with minimal support and no coordinated system of care.” At this point in the conversation, I had left the bank, had parked in the grocery store parking lot, and was in tears. The person on the other end of the line heard this, but it didn’t change her tone.
What infuriates me most about this situation is that around 11:00 am yesterday, I received a call from the home health nurse. She said my mother wouldn’t answer her door. This is the third time this week my mother hasn’t responded to her door for a nurse. The nurse was unsure of what to do, so I said I would call the front desk of the retirement community to have them open the door for my mom. Someone did, and the nurse went in and found my mother sitting in her sunroom. At the time, my mother was hallucinating and saw a man across the street that the nurse didn’t see, and that I believe wasn’t there. My mother has taken to sitting in her sunroom and watching the houses across the street. She has all sorts of stories about the people who live in those houses, and I don’t believe any of them are true. I do believe in other realms of experience and that we can access the veil between this world and the next, but my mother is seeing things we cannot see in this realm. It sounds magical, but it’s dangerous when she cannot bring herself back to reality enough to open the door to get her wound care. What’s worse is that my mother had taken her phone off the hook, so no one could get through to her, except maybe the man she saw outside, whom no one else saw. I wonder what they were talking about.
The nurse was able to do wound care and then called me. We talked for about ten minutes. She was concerned about the hallucination, and I explained that the neurologist said that hallucinations within the context of Alzheimer’s are par for the course and also okay as long as someone isn’t agitated by them or unsafe in some way. As far as I can tell, my mom sitting in the sun room seeing all sorts of people, and what was it last week, yard dogs out in the yard, when there wasn’t a dog in sight, isn’t unsafe. But her being so lost that she doesn’t hear when people are knocking loudly on the door, preventing her from receiving wound care, well, that does create a safety issue. I told the nurse that we were going to get an MRI on Saturday, and that my mother had refused to get other assistance or caregiving at this time. I explained I felt stuck and felt as if I had to wait until things got worse before I could take total control and force my mother to move to assisted living. By the way, forcing my willful mother to do anything is nearly impossible. And it’s an edge for me because I’ve worked for years to create conditions for liberation and to disrupt what constrains us. Taking away my mother’s agency, even if it is necessary, feels wholly complex to me.
The home health nurse and I got off the phone without her telling me she was going to call and report me to the doctor’s office. While I appreciate her concern, she set off alarm bells that make it more difficult for us now.
I spoke to my mother yesterday, and she went round and round about why she took her phone off the hook. I do not understand why she did so. I told her that when she doesn’t answer her phone or the door for the nurse, they call me. They always call me. She said, “Well, tell them not to call you.” I tried to explain to her that, yes, I can remove myself from the list as her emergency contact, but there is no one else who will respond to the little fires that emerge almost daily except me. It’s just me. I am the one who will respond. I also told my mom that if she doesn’t get wound care, she will end up in the hospital, just like she did a little over a month ago. She didn’t have wound care for seven days, and she went to the hospital because she had an infection in her bloodstream due to the wound. I am sure my mother knows that what she does and doesn’t do affects others, but she certainly doesn’t act like she is aware of that fact. I don’t believe she understands the ripple and how ripples happen, like rocks skipping in water, reverberating. Her not answering her door, the nurse calling me, my telling the nurse about my mom’s Alzheimer’s diagnosis, the nurse calling the doctor, an accusation that I am not taking care of my mom, and so on.
At the end of the day yesterday, I had hit a wall, exhausted by the hours and energy spent on trying to unwrinkle a fucked up situation, which had worn me out. I did eventually lie down, but didn’t lay all of this down, because it’s impossible to do so. While today is a new day, in two hours I have to leave to pick up my mother to take her to get her MRI to see how much plaque has built up in her brain and how slow or fast the train we are on is moving in regards to her Alzheimer’s disease. Funny thing is, I had a dream about trains and my mother the other night.
Nothing about this journey is simple. Nothing.
Life isn’t as simple as we try to make it at times. No one else is going to care for my mom in the way I do, and even so, a nurse implied I wasn’t caring for my mom yesterday. Who Cares? I do. As weary as I am, I do.
It’s easy to look at someone and, without much context, assume you know what is happening, but often there is more to the story than what we can see.
Onward,
Michelle