Being Part of a Caregiver Circle

Today I'm going to speak on something a little different than what I usually do, mostly because this is what is taking over my entire life at the moment. Every moment I'm not working, I'm thinking about it, every time I'm at work I'm worried about my other family members trying to deal with this impossible situation. I may say some things that will make you uncomfortable, but I always promised to tell the truth, at least in my prose. 

I split up caregiving responsibilities of my grandmother, who has dementia, between my mother, two aides, my aunt who lives far away, and my father. Even with that team of people, plus the doctors, nurses, physical therapists, speech therapists, and occupational therapists I am exhausted. I don't even do the heavy lifting as far as helping out, most of what I do is gentle reminders, medications, and company and comfort as well as taking care of the dog. It's my mother, my aunt, and the aides that are working tirelessly (well not so tirelessly, it's literally 'going to kill you' tired but we do it anyway). 

We do all this because collectively we believe in human dignity and this is what grandma wants, she wants to stay in her home, she made it very clear that there would be no nursing home or partial or anything of the sort. We will continue to obey her wishes, because everyone deserves to feel comfortable, especially when her default is extremely confused. 

Now I'm going to start out this next section with saying that I love my grandmother with all my heart, many of my childhood and teenaged memories have her at the center of them. She taught me and my friends how to carve a pumpkin when we were freshmen in high school, I used to intentionally get my shirt wet after getting out of the bath at her house because she had an awesome collection of disney t-shirts that I liked to get my hands on. She took care of me and my brother when times were hard, and in turn took care of our family when we lost our house. Collectively we owe her our lives. 

That however, does not mean that being even a tiny part of the caregiver circle is not excruciating, you're constantly anxious, you're on your hands and knees when 1:00 pm runs around and you're hoping that she's going to decide to take a nap today so you can have an hour to yourself. The aides occasionally dodge things thrown at them, verbal abuse from my grandmother is a daily thing at this point, never to me, my granddaughter status seems to still protect me from the vitriol, which is why I think I might be the most objective family member at this point in the game.

Dementia is a terrible thing to watch happen to a person, especially one so full of life and creativity, it strips away the persons humanity, and uncovers the darkest parts of her personality. Those that had always been there, but had been filtered through layers of societal norms and politeness, most of us will be there eventually, so do your therapy now folks. The darkest parts being the anger, but also the depression, the constant reminders to me and her other caregivers that she wants to die, sometimes violently, she wishes she died when she had a stroke, she wants to be with her husband, she saw Mother Mary when she coded and wishes she had just taken her then. Dementia means the person suffering with it has to give up all of their bodily autonomy to make sure that they can stay healthy, clean, and in the least amount of pain possible. That's hard. It is impossible to go from doing everything yourself to not being allowed to shower on your own. It is also impossible for the caregiver(s) because we are essentially working two jobs one at home and one that pays. 

I'm 25, and I can't lie I feel trapped in this situation, even when I have time to go out I'm usually too exhausted to even think about it. I wouldn't give it up though, however many years left with my grandmother I'll cherish, even when it's scary, even when my darkest parts of my personality come charging through (as most of you know it can get pretty dark up there), when I have to put my customer service face on and take a deep breath before continuing an interaction. We still have good times, we still laugh and watch MASH together, but unfortunately the communication is minimal, and we've learned to understand each other through half words, gestures, and routine. 

My grandmother is an impressive woman. Impressive does not always mean easy. She has never been easy. Impressive means she gets shit done, and doesn't give a fuck what other people say or think about her (if she knew I was using that language she'd be...not thrilled). Impressive means she ran a tight ship and a spotless house. Impressive means her students were terrified of her, but knew they could come to her if they were in trouble. Impressive means the love of her life died almost 20 years ago and she kept on keeping on probably for the sake of us. Impressive means that despite her anger that has been obvious my whole life, she loves us with all her heart. 

I get a lot of my strength from her and my mother. Right now I feel like my life is on hold, I'm not making as much work as I wish I was, I'm still living at home, and I really would love to go to grad school. 

I've got time for all that though.

What there isn't enough time for is to show love even when she shows hate, to show patience, even when she's being difficult, and to help out in the only way I know how, to be there, to do what I can, and to not let my darkest bits of my personality come out during a time of frustration.   

I do not mean this as a tell all on my family drama, in fact I'd like you to think of it as a snapshot of being the low man on the totem pole in a house full of people who are working together to keep this ship afloat. At the moment I'd say we're taking on water, but we've got the supplies to plug the holes for now.