‘I thought moving mom and dad to an assisted living home would give us a moment to breathe. If I said I was suffocating, that would not be far from an exaggeration.’

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Becky Gacono of Annville, Pennsylvania, chronicles her mother’s dementia journey each week for Love What Matters. This week she discusses how unfair this horrible disease is, and the toll it’s taking on their family.

“I believe I thought moving mom and dad to an assisted living home would give us a moment to breathe. If I said I was suffocating, I don’t think that would be far from an exaggeration. Let me explain… Mom has declined at a rapid pace this past month and a half. She needs a lift to get her into and out of bed, and into and out of her wheelchair. She doesn’t say much and rarely asks for ‘Carl,’ her husband, anymore. She plays with toys and lights up when Fisher Price commercials come on. If you asked me what she is like right now, I would say she is like an 18-month-old. The suffocation isn’t about the new home or about them not living at their actual home. It is about seeing my mom and trying to refrain from crying. It is watching my dad feeling helpless and sad. It is me questioning life, aging, death. Whoever came up with the end game plan screwed up.

Her lift./Becky Gacono

This is how I would have done it. You start as a baby and you need someone to do everything for you. Although you don’t mind, because babies are cute, you are thankful for the next stage when they can start being a bit more self sufficient. The next stage isn’t always fun but you get through the teen years and onto pushing, I mean nudging, them out the door to start a life of their own. The next stage, empty nest, would be a constant party. I mean you would miss them but you would adjust and reacquaint yourself with your spouse, friends and maybe even your neighbors. You would do whatever you waited to do for the past 25-30 years. Finally – the last part – you get old. This is where it should be a celebration. You made it – You are old! Every day would be filled with dancing, laughter, hugging, reminiscing. Your body would get old but it would still work. Your mind would be there until the day you close your eyes for the last time. Why does getting old, with our without dementia, have to be so sad?

So my dad stares off into the distance as he tries to figure out how it all came to this. Why is the woman he loves here, but gone? He is no longer in his home and with the loss of his home he feels a loss of his life, and even his family. He is lost in his loneliness and closing in on his final chapter.

Mom playing with her fidget blanket while dad stares beyond her. Almost as if it’s too hard to watch./Becky Gacono

One of us visits everyday. It doesn’t seem to help. He wants us to stay with him. He wants to know when we will be back. If we tell him a time, he will call us over and over until we come back. He is lost.

I can’t breathe! It isn’t enough that you have taken my mom slowly and painfully over the years? You can’t keep your hands off of dad?! It doesn’t seem like it’s asking too much to let him smile, dance, laugh, hug and grow old celebrating the milestone of life he has achieved.

The days of laughing, dancing and hugging!/Becky Gacono

I try to search every day for the good in my life and to say my cup runneth over would be an understatement. But watching my parents age is like putting a big Band-Aid on my heart and then each and every day ripping it off slowly only to put a new one one as soon as you finish taking the other off so you can do it again tomorrow.

I can’t believe there isn’t a better and happier ending to this thing we call life. There should have been a better plan. Since no one asked me, I guess we are stuck with what we get. In the meantime, I hope there’s a day when taking off the Band-Aid no longer hurts so much.”

One of my favorite photos of them from what seems like so long ago./Becky Gacono

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, Our Journey Through Our Mom’s Dementia, and in a series of posts for Love What Matters:

‘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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