‘They don’t really feel pain anymore.’ WHAT?! The hardest thing we had to do was say goodnight, and walk out of her room that night.

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Becky Gacono of Annville, Pennsylvania, chronicles her mother’s dementia journey each week for Love What Matters. This week, their family has made the difficult decision to move their elderly parents into an assisted living facility.

“It looks like we are going to have a new normal. Following my dad’s surgery and being admitted to a rehab facility, and my two aunt’s heading back to Florida, we were left with 68 hours of in-home care – and a week that has 168 hours in it. I was never great at math but even I knew that was not going to work.

With mom’s decline this past month she needs help with almost everything – which makes for very long days and a need for additional help. We made a few calls and we were hoping we could fill the hours needed with people that friends and family knew or could recommend. Leaving her with new caretakers wasn’t something any of us wanted to do.

Daughter stands behind father and mother with dementia sitting in wheelchairs beside two men
Becky Gacono/Our Journey Through Our Mom’s Dementia

So, we did what we put off for as long as we could. We started looking at homes to move her, and eventually dad, into when he finished his rehab. Most homes don’t have rooms where they can stay together since mom’s dementia is so far advanced. We made some calls and asked around. Someone recommended one that did have shared rooms, so we made a visit and we liked it. It is small – 53 residents. It felt like you walked into someone’s home. No funky nursing home smells. The people working with the residents were friendly and smiling. We asked lots of ‘What if’ questions.

‘What if mom is up most of the night?’ They will sit with her until she wants to fall asleep. ‘What if she wants to do the same thing over and over again?’ That’s OK with them. ‘What if she doesn’t want to leave her room?’ She doesn’t have too. ‘What if she wants to wander the halls in her wheelchair?’ They will say hello to her when they pass. I’m not sure what we expected, but we were pleasantly surprised.

Row of rocking chairs on front porch where elderly woman with dementia likes to sit
Becky Gacono/Our Journey Through Our Mom’s Dementia

We took our brother, Kris, and his wife back to have a look. They liked it too. So we made a decision to do what we felt we had to do to keep mom safe. Last Friday, we moved her into her new home. She has her bed, her kitchen table and chairs, her sofa, her photos and lots of other small things that make her new home feel like home.

The hardest thing we had to do was say goodnight and walk out of her room that night. Will they check on her enough? Will they be patient with her? Will she be afraid? We all kissed her goodnight and headed out the door. None of us looked back. What if we made a mistake? Should we had done more so she could stay in her home?
I felt as though I couldn’t breathe.

Woman with dementia sits in wheelchair in nursing home with man smiling beside her
Becky Gacono/Our Journey Through Our Mom’s Dementia

In the morning we get a text around 7:30 a.m. from the Director. ‘Your mom was up til 3 a.m. with the girls (helpers). They sat with her until she was ready to lay down. She is still sleeping.’ That’s what she was doing at home for the past month – up off and on all night, so that wasn’t new. We went to visit and she was discovering her new surroundings, rolling up and down the halls, straightening things out along the way. She seemed content. It helped.

Elderly woman with dementia smiles in gray sweater and floral top
Becky Gacono/Our Journey Through Our Mom’s Dementia

Monday comes and my sister Mary Ann stopped to see mom. It was a terrible morning. She was in pain and in bed. The neurologist had cut her pain meds in half with the comment, ‘They don’t really feel pain anymore.’ WHAT? She should have had to come to mom’s room that day because the day didn’t get better. When I stopped in the afternoon she was sleeping in her recliner. We tried to wake her enough to go visit dad but she was exhausted and was hurting. We decided to let her sleep and we would visit dad without her. Her doctor was called and we got her meds changed back to what they were, and a new med for her pain. Mary Ann took a photo of mom and I and you can see the pain on her face. I considered not sharing it here because it is a hard photo to see, but I think this is a real part of our story. Some days are harder than others. Monday was a hard day.

Elderly woman with dementia sits sleeping in chair while daughter kisses her forehead
Becky Gacono/Our Journey Through Our Mom’s Dementia

As they say, tomorrow is a new day and Tuesday came in like a breath of fresh air. Mom was wonderful. She was happy. She was folding linens (over and over again). She recognized us, greeting us with a big smile. She got in the car easily to go see dad (Carl). She said his name and after our visit, as clear as day she said to Dad, ‘Aren’t you going with me?’ Music to our ears! We explained he would be with her very soon as we said our goodbyes to Dad.

A little issue we have been having with mom this past month is her not wanting to get out of the car once she’s in. Last night she decided to do it again. It was quite the ordeal as we coaxed, begged, laughed with her, gently guided her legs out the door as she quickly pulled them back in. Eventually we slid her off the seat and out the door and onto her wheelchair, and in the process she put her death grip around my arm. She was not letting go. Mary Ann parked the car and came over to push her. I had to walk backwards as Mary Ann pushed her back to her room never letting up on the grip she had on my arm. Finally Mary Ann touched her hands and asked her to let go, and after a moment she released her grip. I am hoping the home watches their videos each morning because the car fiasco and walking backwards down the hall with mom was either entertaining, or one of those, ‘What the hell are they doing?’ moments. I imagine the latter.

Close up of elderly woman having a tight grip on her caretakers arm
Becky Gacono/Our Journey Through Our Mom’s Dementia

We do have good news. Dad will be released tomorrow and will finally get to be with the love of his life. He has missed her to the point that his heart hurt. And for dad, he doesn’t care where he is as long as mom is happy, safe, and beside him.

So begins the next chapter in our lives. I cry every day. I cry for the loss of our mom. I cry for decisions we made wondering if they were the right ones. I cry for the sadness Dad has being apart from mom. I cry a lot. I realize sadness and grief are part of life. It means you are alive. Maybe it is a reminder to us to appreciate, remember, and savor the moments with those we love. To feel grief and sadness means that someone had an impact on your life, and for that I am grateful… Fingers crossed  they love their new home.”

Woman with dementia kisses husband on the lips who is on hospital gown
Becky Gacono/Our Journey Through Our Mom’s Dementia

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

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’

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