Why did both my parents lose their minds? And will I? Is it inherited? Well, I hope not because I didn’t have kids and children are the only line of defense against the fate of people with Alzheimer’s in America. My siblings and I were told years ago that we should force our parents into a home. We didn’t partly because it was a battle and none of us wanted to fight and partly because it’s just wrong, they are not homes, for demented people they are jails. Many people our age are faced with the same dilemma, which is how to help aging parents. Most don’t choose to move in with them when they fall apart and I sometimes wonder at my sanity for choosing to. People without means don’t have much choice, but my family does. We’re making the choice to help our parents stay at home as long as we can. And while I’m here I’m going to attempt to answer the question, “Just why is it so hard?” for all our sakes.
My Dad is sneaky. He found where I leave the morning pills for the caregiver, took them and then put them back when I asked him where they were. I didn’t see him come or go from the room, so either I had instant onset or he is a petulant child in a 90 year old guy’s body. I get a break every day for six hours when hired caregivers arrive. The rest of the time I’m on duty and must cram in sleep and my own work however I can. I earn money designing commercially printed products, retouching images with Photoshop and occasionally selling prints and paintings that I have on display somewhere. In home care is giving me a whole range of new skills that would read on a resume for a graphic designer/caregiver like this.
- Highly experienced answering random, nonsensical questions while retouching images in Photoshop.
- Able to envision calendar designs and search for lost keys, shoes and even teeth simultaneously.
- Willing to lay out brochures and postcards while giving directions to the bathroom.
- Mentally able to track all design changes between dashing to the hall when the bathroom cannot be found and forgetting to hit save.
- Working well with others when my purse has been hidden to ensure important notes are found before deadlines are reached.
- Able to track client’s change requests with a cheerful attitude even when used diapers are flying through the air.
Turns out I can literally handle a shit storm, but I don’t wish it on anyone and my resume would be fudging a little. I’m not always cheerful. I have snapped a few times and must say it feels lousy to lose control of my words. Mom decided she was going to walk to Canada to see her mother who died twenty years ago. She was in the corner of the yard barefoot trying to break the fence down. I could not talk her out of it and had tried for a long time. Touching her to guide her gently was met with attempts to hit me so I backed away. I finally asked in anger, “Do you want to be remembered as an old bitch?” She wheeled on me in rage and shouted back “YOU ARE THE UGLY…STUPID…VULGAR…BITCH.” Clearly I was never going to win an argument. Alzheimer’s folks are easily agitated, but not anywhere near as willing to just let it go. When she was finally in the house she stomped around banging things. At the risk of giving advice, if you don’t have anything nice to say to a demented person, just shut the hell up. Pin a “kick me” sign to their shirt if you must or maybe just walk away. I lock the door to my room and focus on my breathing for five minutes when it’s really bad and I reserve crying until I am alone and have more than five minutes to regroup. It is absolutely heart wrenching to witness two formerly clever, capable minds circling the drain.
Although, there are a few endearing moments. They often make breakfast at 2 am. Yes, they can still get in the kitchen which is close to being walled off to them, but isn’t yet. I have a baby monitor in my room so I can hear if they leave water running, attempt to use the microwave or start pulling each others hair. They can drop things, but they can’t really harm themselves. Soap and cleaning products are out of reach, the knobs are off the stove and knives are never left in sight. Mom’s round of horrible diarrhea years ago (before round the clock regular shifts) happened because she was pouring dish soap in her tea and it took a while to figure that out. The other night I checked to make sure all was well (like there really is anything close to well in this picture) and they were happily sitting behind TV trays with two heaping bowls of raw oats with milk. Technically it is cereal so there was some logic. I took it away to jeers of disapproval and brought it back five minutes later cooked, but they forgot and fell asleep holding hands on their love seat. The image of two ancient people clinging to each other after sixty five years of marriage just might be why I don’t go out the door and walk to Canada. There isn’t enough positive regard in the world, but that looked like love to me.
Many heartfelt thanks to you Paula for stopping by my sister’s gallery with your adorable dog to give me a chocolate bar. How on Earth did you know that’s my favorite one? I’m still smiling that you did that. And Karen, so looking forward to seeing you again!
Life is cool, mostly. It helps to remember some of the beautiful places I've been.