‘Living with mom’s dementia is hard. It is emotionally draining, frustrating, exhausting. I don’t want you to think we are perfect, that all there is is love.’

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“My sister Mary Ann feels that I only write about the good, heartwarming stories. I wasn’t sure how saying the stuff in between the good stuff would go over — but I don’t want you to think that every time we go to see our mom and dad we are skipping happily up the ramp into their home.

There are days we don’t answer our phone when we see it’s dad. We let it go to voicemail and then listen. There are days we debate over who is going to get them their dinner when the caregiver isn’t with them. There are days when we roll our eyes when mom wants something done — NOW!

Some days she does this and dad sits and waits for her to ‘feel better.’

Becky Gacono/Our Journey Through Our Mom’s Dementia

There are days we are frustrated that dad gives into her all the time. There are days we are busy with our own lives and feel inconvenienced when they need us.

Every once in awhile she slides out of her wheelchair reaching for things and dad has to wait for one of us to get there. This time he put a pillow around her neck so she’s comfortable and he read to her until one of us showed up to help. A Velcro belt is going on her chair this week.

Becky Gacono/Our Journey Through Our Mom’s Dementia

There are days we wish she slept more and liked sitting in her recliner more. If we can get her to sit in her recliner, they normally watch TV holding hands.

Becky Gacono/Our Journey Through Our Mom’s Dementia

There are days we are so scared about what lies ahead for mom, for dad and for us. There are days we feel guilty for feeling any one of these things.

She has good days too, though. She always wants to be outside when it’s sunny.

Becky Gacono/Our Journey Through Our Mom’s Dementia

Living with mom’s dementia is hard. It is emotionally draining. It is frustrating. It is exhausting. It takes it’s toll on us, but also on our families and our life in general. We are not bitter or angry about that part — but some days the ripple affect of this disease is felt for awhile after we leave them. We have spouses that we expect to be understanding. We have children we leave mid-sentence when dad calls and needs us. I have grandchildren I don’t see enough because I am exhausted.

The good outweighs the rest by far, but I don’t want you to think for a moment we are perfect, that all there is is love when we are in their space. There is a lot of that, but there are also the things I listed above.

We are tired. And in all honesty, there is an occasional tiny twinge of jealousy towards two of our brothers who rarely ever see them. There I said it. I have moments when I am jealous that their phone never rings with the word ‘Mom and Dad’ on their screen. I am jealous that they never have to stop what they are doing to run out the door, or make them dinner, or take them to the doctor, or do their grocery shopping. But then I stop. Am I crazy? All the things I write about are part of being a family. The family we are now. The family that is going down a different path, a path none of us would have chosen, but one we have rallied together to do the best we can. To do what families do — be there for one another — to make memories through the good times, and the tough times.

What I wouldn’t change are the moments I have written about before this one, and the ones I will write about in the near future. Moments I love. Moments that make me laugh. Moments that bring our family together. Moments I am taught what true love looks like. So many moments I wouldn’t want to change for anything in the world — the good and the not so good. I’ll take it all.

I guess what I’m trying to say is, we do our best. It isn’t always with a smile on our face but there is always love, and from what I can tell so far, that’s what is going to get us through all of this — together! Oh no, my phone is ringing…”

This story was submitted to Love What Matters by Becky Gacono, 55, of Annville, Pennsylvania. She is chronicling her mother’s dementia journey 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

‘It was my birthday when she no longer knew my name or who I was.’

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

‘We finally get to the kitchen table and their sandwiches are out and ready to eat. Then this happened.’

‘I never thought I’d get to kiss an angel’: Daughter overhears midnight whispers between mom with dementia and dad

‘I realize love is the most powerful, the most exhausting, the most incredible way to live your life’

‘I tell her I have her ring and she starts crying’: Daughter recounts mom with dementia’s anguish over beloved ‘missing’ ring

‘She used to do puzzles, she can’t do them anymore’: Daughter’s tearful realization about her mother’s dementia 

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

‘This Mother’s Day I will close my eyes and she will be whole’: Daughter reflects on ‘gifts of memories’ before mom had dementia

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