‘Umm… your mom is sitting on the floor. She tried to get up by herself.’ ‘I’ll be right there.’

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Where do I start? I need to start with being honest. Not that I’m not honest in everything I write, but I need to express how I feel on those days that are harder than others. Sometimes this love story/days of dementia are completely draining. Sometimes I stay away from their house and throw my sister Mary Ann to the wolves and I’m OK with her giving me updates on what is going on “over there.” Sometimes I just want to get in my car and keep driving, which is weird because I don’t like to drive. Lately it sounds like it would be a wonderful thing to do. Sometimes I wish… no, don’t say it Becky.

Mary Ann and I went to a wedding on Friday evening and it was a wonderful night out with friends, filled with laughter and good times. On our way home, around 9:45 p.m., we get a phone call – first my phone, then Mary Ann’s. Guess who… Yep, it’s Dad. “Hello, everything is OK, but I have been feeling dizzy since after dinner. I’m in bed and if I don’t move I’m OK.” Mary Ann and I look at each other and realize the few hours of fun have been tied up with a knot and thrown out the window. We are back to reality.

We pull into their parking lot and head inside. They are in bed but not sleeping. Dad says he thinks it’s a little better if he is propped up, so we get 2 more pillows from the other room. Mom isn’t sure what is going on so we tell her it’s to make dad feel better. She isn’t sure she likes the extra pillows in their bed.

We get them both situated and make sure dad has his phone close by. He says he’s fine as long as he’s still. Now this is where you should jump in and ask who stayed with them and this is where we tell you neither of us did. We told ourselves that dad has the phone right next to his bed. They’ll be fine. Deep down, we know this is a risk we are taking but it appears that both of us are going to play the odds tonight. We head home to get ready for bed and try to recall a little piece of the earlier night of fun so we can savor it just a little bit longer.

It is now 11:00 p.m. and I am tired. I crawl in bed, and as I put my glasses on my nightstand my phone buzzes. NOOOOO! I lift it up knowing what I’m going to see but hoping, just this once, I’m wrong. Nope, I’m right. “Hi Dad.” “Umm… your mom is sitting on the floor. She tried to get up by herself.” “I’ll be right there.” Back out of bed, Glasses back on. I call Mary Ann. I’m not going back alone. I tell her I’ll pick her up in 3 minutes. Back we go to Mom and Dad’s.

Becky Gacono/Our Journey Through Our Mom’s Dementia

Mom is sitting on the floor. Dad is now laying on one pillow because Mom kept pulling them out because “they didn’t belong there.” We get mom up and into the bathroom (where she originally wanted to go before sliding onto the floor). She is out of sorts because it is late and her routine has been interrupted. She is not sure what to do in the bathroom so Mary Ann tries to tell her and mom calls her a name – not a nice one. I can’t stop laughing and now, neither can Mary Ann. Dad is still laying in bed – but flat now instead of propped up. We get Mom back to bed. She starts trying to tell us that she can’t do it. We aren’t sure what she means. She says she tries, but she can’t do it. We pull up her covers and she pulls them over her head. She starts laughing. Mary Ann and I look at each other and then we realize she is not laughing – she is crying.

Mary Ann crawls in bed next to mom (they still sleep in a full size bed so the bed is now full to capacity). We realize that mom feels as though she can’t take care of dad. We reassure her dad is OK and he is telling her the same. She starts to calm down. We stay for awhile until mom is OK and we have dad propped up again but have his pillow he uses every night on top and we hide the others underneath so mom can’t see them.

Becky Gacono/Our Journey Through Our Mom’s Dementia

All appears to be back to normal (let’s be real – I have no idea what normal is anymore). Let’s just say, everyone seems to be tucked in for a good nights sleep. We walk out of the room, turn the lights off and mom says, “Don’t leave.” What? All I wanted to do at that moment was leave. I wanted to crawl into my nice, comfy bed and fall asleep and not hear a phone buzz next to me all night. It seems like my wishes have become pretty simple. We tell them we will sit in the living room for awhile. Mary Ann and I tip toe into the living room and listen to see if we can hear them. We wait a few minutes, and like teenagers trying to sneak out without their parents hearing them, we open the door and escape. We get in the car and start laughing. This is what our lives have become.

Glad I have Mary Ann to ride along with me on nights like this. I drop her off and we hope we don’t see each other until tomorrow morning at Sunday breakfast, which brings me to another story which is too long to add to this one. Stay tuned…

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:

‘Mom thought her mother had died – that day!’ Elderly woman with dementia devastated over death of mother 70 years ago

‘I see Dad wiping his eyes. I realize he is crying.’ Elderly man devastated his wife with dementia thought ‘everyone left her’

Wife with dementia ‘listens’ to husband’s story for 15 minutes before cracking a joke, which ‘gives him a sliver of hope she is still there’

‘His love for her is palpable’: Doting husband’s explicit instructions for wife with dementia’s morning routine

‘I’ll get to her outfit later’: Daughter’s humorous attempt getting her mom with dementia to the doctor

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