“Always start with a catchy title, or at least don’t leave it blank,” I might say to a student.
As an English teacher, I get tired of papers that have “Macbeth Essay” written at the top, so I thought I would just go there: POOP! Sometimes a verb and sometimes a noun, it is a word I want to say often; surely I use the synonymous expletive many times a day. But today, I had to deal with it literally. And it reminded me that people have asked me to blog about my experiences being a caregiver. Sincerely, I was sitting with my mother in a dermatologist’s office, seeing her smeared fecal matter on the papery material covering the tables when I realized I just need to do this. A poopy epiphany! Friends have said to blog about THIS, and I never thought I had something to say until 11 a.m. today. And now I just have to say, “Poop!”
I ignored a friend’s request because it feels pompous; it feels narcissistic; it feels like I might leak too much info or throw someone I love under a bus; it feels like too much work and who would care? But after today, I thought this—THIS horrible experience—has to help someone. When I went into teaching, I figured I could help one in thirty on a deep level. If I can help one in that same ratio possibly feel s/he is not alone in the world of caregiving, then, maybe I should try.
I will save how I became a caregiver for another day as today’s story had already been darkly (pun intended) foreshadowed. To this point, I have purposely not mentioned why I caregive or for what disability because all-in-all, I believe there have got to be similarities between caregiving for someone with Down’s, someone with Alzheimer’s or someone with limited mental capacity after trauma of some sort. Caregivers all have moments of chaos and moments of clarity, moments of feeling solidarity with a team of others and moments of feeling all alone in the world. So, I hope many can read this and see themselves, maybe laugh, possibly cry, and hopefully find strength in—well, something. Some might call my sharing this brave, and others might say I am not preserving my mother’s dignity. Still, after nearly 5 years of maneuvering what feels like EVERY system in my and my mother’s life to try to preserve the quality of hers, not to mention meanwhile trying to be a mother of two, teacher of many, and wife, I have lost myself, and if this little bit of writing can help me heal, while helping even one in thirty, I think that is fair. My mother has Alzheimer’s, and here was our day, today July 9th, 2014:
7:00 a.m. My alarm goes off before my husband’s (on my summer vacation). It is going off this early because yesterday at 4:40 p.m. I received a voicemail that changed my mother’s dermatology appointment from noon to 8:45, with no true explanation why. The doctor does not ask if it is okay, just implies that it must be done in order to HAVE an appointment with my mother, for which we have waited for a week after an ER stint where she had to have 10-12 lesions/blisters drained. I made the noon appointment so that I could have plenty of time to see my own boys in the morning and get mom ready without timing hassles, but, so be it.
8:10 a.m. The lovely worker—and I mean that, that is not sarcasm—at my mother’s (2nd) assisted living facility, lets me know she wishes she would have known the appointment was earlier and changed because she wanted to bath my mother prior. “Sorry, I did call last night, so they could tell you,” I tell her, and it is truth. I called, half knowing the message likely would not reach her by morn, to let her know of the change that was already biffing my day. This is how it works at these homes. Some might think you only have workers that do not care, but I have found that sometimes even with those who care, there are just too many cooks in the kitchen and not enough hours in the day to communicate all the needed words. (As an English teacher who tells kids to not use cliches, I am riding some fine lines here! Drat!) Nonetheless, I grab Mom and go.
9:00 a.m. It is 15 minutes over and they still do not have us in.
9:40 a.m. It is almost an hour past the appt. and we are still in the waiting room. I am steaming but glad it is not the school year, or I would REALLY be hot. A teen boy sits next to my mom, and I feel for him because he can probably smell her urine-like (oh, wait, that IS urine) stench.
10 a.m. They bring us in and ask me to put her in a gown. They do the typical of talking with her normally until they realize she cannot answer many questions about herself because she cannot remember, and when I point out that she has Alzheimer’s (which has taken me years to be able to say in front of her in more than a whisper) they begin to talk to her as if she is a child. Sometimes this bothers her; sometimes it bothers me. Today it is fitting because she is assuming her child-like persona as if she knows she is going to get a shot of some sort. (Sometimes I refer to her as my 12-year-old daughter. 4 years ago that was odd and an inside joke because I had only an 8-year-old and 4-year-old, so even 12 was mature. But now, I actually HAVE a 12-year-old son, so calling her persona 12 might not seem fitting—for the sake of time, sanity, and lack of wine or wine-related creativity, we shall say she assumed the 12-year-old role and did not grimace when they spoke to her as such.) I help her change: in taking her clothing off, I realize her panties were utterly filthy, so I threw them away. I bury them in the trash hoping they would not notice later. But when I help her to the table, I see a brown smudge on the chair, the regular everyday office visitor chair she barely sat on to balance herself! So, seeing she was stable and trying to not freak her out, I get the antibacterial wipes to feverishly clean the chair for others. After I scrubbed 4 times over, they came back in.
10:15 a.m. They look over her. Every where. I mean EVERYWHERE, right in front of me. And they decide to take a biopsy of some of the leg tissue where her trouble had been last week. They decide they need her on her stomach. Oh, no, they don’t. Oh, yes, they do. No…try…yes…fail. AHH! The nurse, green and gorgeous, is sweet, but she doesn’t see my levels of pain in trying to roll my 74-year-old mother for her or hold my mother down for her or TALK my mother down for her, and we all pretend we don’t see the poop for her, which “her” at this point I am not sure, though we probably all appreciate this facade. On the table’s tissue paper, it is THERE, and I am THERE, squimish and child-like but stoic and adult-like, just being THERE. I think about this blog as I mention that I am sorry that her home could not give her a bath just yet; I think about how I don’t wish this for my own children to do for me someday; I think about Alzheimer’s hereditary qualities and how this could BE my children with THEIR OWN children someday; I am left with a feeling of maturity that I do not wish I had, that I do not wish to own.
10:45 a.m. I need to call my boys to make sure they have brushed their teeth; I need to make sure my husband knows to be home before waterpolo practice. I hope my boys haven’t fought or answered the phone while I am gone. I hold her left leg with my left hand and her right arm with my right, soothing her with typical parental words, like “It’s okay, it will just be a minute, they are making it all better, I promise.” As she cries out, I numb myself.
Some say I am too young, but I am the sandwich generation.