“My mom has always liked to clean and when she wasn’t cleaning, she believed we should be. There was always a Chore Chart on our refrigerator and you knew not to ask to do anything until your chores were checked off and then inspected by her. We have a friend who used to threaten her children that she was going to make them ‘work like the Gacono kids.’
We were not overworked but we worked harder than most kids our age. She believed too much time on our hands was time we could be getting into trouble — although we proved her wrong a few times on that philosophy.
My dad has NEVER enjoyed cleaning. He was always a hard worker but cleaning was not part of it. Some things never change. It appears dementia has put mom’s need to clean on steroids and dad’s dislike for cleaning remains. She no longer watches TV because she can’t follow along which leaves her bored and looking for almost anything to do around the house. Because she is in a wheelchair, she is limited as to what she can do. She has attempted to reach for things and has almost fallen a number of times. This means someone must be with her all the time. When the caretakers are with her, it gives a much needed cleaning reprieve to dad.
When they are not, this happens…
She has a ‘To Do’ List — Rearrange drawers, rearrange cupboards, rearrange anything she can reach.
An example: Take everything out of a drawer. Look at every single item (for an extended period of time). Make a pile. Make another pile. Look at everything in each pile again (for an extended period of time). Say over and over again ‘what a mess this place is.’ Wipe out the drawer. Look at the piles again. Go through each item in each pile again. Decide who you are going to give some of the items to (which takes awhile because she doesn’t remember anyone). Put the remaining items back in the drawer neatly. Move them around the drawer a few times. Look at them again.
OK, you get the idea. Although not physically exhausting, it can make for a very long day for the person sitting beside her.
The other day I stopped in to visit and couldn’t find them. I’m walking through the house and see they are not napping in their bed, but I see the light on in their walk-in closet. Dad is sitting on an extra wheelchair we have in the closet while mom is lining up batteries in a box on a shelf. Not a few batteries, but a small shoebox-size full of batteries. Every one has to go the same way and be standing on end. Dad is holding a small box on his lap. He is sitting. He is waiting. He is tired. He has lost his patience. He has a look of sadness on his face. He has been defeated.
I call to them so I don’t scare them and dad looks up and mom continues to line up batteries. I brought them dinner, so I step into the walk-in closet and ask mom what she’s up to. Dad says nothing. Mom explains that the house is a mess. I help her line up batteries. I tell mom I have dinner and it’s still hot so let’s go eat. She continues to line up batteries. I realize we are not going anywhere until this task is completed. We finish her project together. Before she can move onto the next item on the shelf, I pull her away and realize dad still has not said anything.
I turn to him and say, ‘Let’s go eat dinner,’ and he says, ‘I got frustrated with your mom. I lost my patience.’ I realize he is about to cry. It is like a kick in my gut when I see this kind of pain and sadness on his face. Meanwhile, mom is fine and continues to want to clean things on our way to the kitchen. Dad follows behind — quietly.
I get mom to the table and I’m talking to her about dinner and keeping things light and upbeat. I get plates out and their applesauce (they love their applesauce). I sit down with them and we say grace. Mom and I start to eat. Dad looks up and says, ‘I lost my patience with your mom. I didn’t mean to. I don’t like when that happens.’ Now, when he says he lost his patience, it means you could hear frustration in his voice when he talked to her. He is not a yeller and he is the most mild mannered human being I have ever met. Then he says, ‘I love your mother.’
Through this conversation mom is eating and has no residual affects from the frustration that was in his voice as he sat in their closet with her while she lined up batteries. I attempt to explain to him that we all get frustrated at times. We get frustrated with our children, our spouses, with people in general. It happens. I tell him he is carrying a load none of us can imagine and frustration is going to happen sometimes. He doesn’t want to hear this. He says he doesn’t like when he gets frustrated with her, and as I look at him from across the table, the guilt and pain he is feeling is real.
He looks broken and exhausted. Through all this, mom continues eating saying how good everything is. I point to mom and say to him, ‘She is fine. She isn’t holding a grudge. She isn’t angry. She doesn’t even remember he was frustrated.’ He tries to eat. I point out to mom how beautiful her plants are and she says, ‘They probably need water.’ Dad gets up and gets the little watering can and waters her plants then sits back down to eat. I show her the birds outside the window at the birdfeeder. She likes seeing them. She is content and happy. Dad eats his dinner and the normal conversation he craves is missing. I make small talk with mom but she keeps looking at him. She knows he is sad.
We finish and I clear the table. Dad, as always, thanks me for stopping over, for dinner, for getting mom away from the batteries. My brother, Kris, arrives to take them to his church. He is joking around with mom and she is laughing as he pushes her out the door to his van. I walk out to the living room with dad. I tell him she is fine and he is amazing with her. He is patient beyond what I could ever imagine being. He hugs me and says, ‘I love your mom,’ as he slips his jacket on and heads out the door to join her.
Once again I realize the gift of love I had growing up — through all the chores and complaining, through all the hard work we had to do — we were surrounded by two amazing people with a love for each other, and for us, that took me years to understand the enormity and blessing of it all.”
This story was submitted to Love What Matters by Becky Gacono of Annville, Pennsylvania. She is chronicling her mother’s dementia journey on their Facebook page and in a series of posts for Love What Matters:
Family combats mom’s painful dementia journey with humor
‘They are two that have become one’: A day in the life of my mom’s dementia journey
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