Leisure Care Vice President of Operations Michael Juno has been an essential part of our company for over 15 years, bringing life-enhancing senior living experiences to hundreds of families. New and continuing experiences with his aging mother have given him a fresh perspective on caring for a senior loved one, and he has chosen to share those experiences with us on the blog.
In part one of my story, I shared how I joined the Sandwich Generation. I shared my mother’s journey, and frankly, mine, as we learned of her early dementia and struggled to balance her independence with her safety. I ended that entry by wondering what would be next and how living with that anxiety would impact her, myself, and my family.
This post will be about what came next for all of us. I share all of this in hopes that you, as a reader who may be on a similar journey, find solace and peace knowing you are not alone as you navigate this wonderfully challenging season.
November 2021: Proceeding with Caution
After the incidents of the summer of 2021, our entire family was checking on Mom consistently. We were in contact with her medical care team. I called her every day to make sure she was okay. We installed a GPS tracking device in her car and installed GPS tracking software on her phone. This allowed us peace of mind knowing where she was around town at all times. During the holidays, we became increasingly concerned with her ability to get around and find her way home. It was taking her longer and longer to travel short distances. In January 2022, we made the decision to take her car “in for repairs.” The car never came back. Instead, we opted to start flying Mom around to places she wanted to visit.
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During this same time, my husband and I adopted our third child, and the timing could not have been better. Mom decided to fly out in early February to meet our newest addition and would stay for extended periods of time. She was beyond helpful as we adjusted to life as a party of five. She found great purpose in spending time with her grandchildren, and we felt great relief, getting help with the children but also knowing that she was happy and safe with us.
July 2022: Moving In
As time went on, we saw dementia beginning to progress as she became more easily confused and forgetful – particularly at a family reunion. She was certain that her parents were there, as well as many of her brothers and sisters who had passed away. In July, Mom’s move from Ohio to Georgia became permanent, and she moved in with us full-time. Although in her mind, she was always only ever visiting and helping us out.
Her short-term memory was slipping. She would tell a story and, five minutes later, would repeat the same story. Overnight incontinence became a regular occurrence. Mastering this was a challenge in and of itself. She was so embarrassed. My goal was to put her mind at ease and try to minimize the guilt, and provide her dignity. We took her to see specialists who determined that her body was all working correctly. The problem was that her brain wasn’t waking her up when she had to urinate. Although incontinence products were being used, they didn’t always work all night. For months I would wake up at 1 a.m. to wake her up to use the restroom. Finally, I found a product called LivDry that kept things controlled overnight.
My membership to the Sandwich Generation was upgraded at this point, as I was working full-time, taking care of three children under the age of seven, and caring for my mom. About once or twice a month, she would wake up in the middle of the night, pack a bag and come downstairs at 2 a.m. ready to leave. For months, every day was Sunday, and she would come downstairs in church clothes – only to be frustrated when she found out it was Tuesday.
More than anything, we wanted Mom to have companionship when we were working, or I was traveling. As dementia progressed, we decided to search for home care to supplement what we were helping her with. This was much more difficult than I had anticipated. We said hello and goodbye to six different caregivers. As anyone who has been in this situation knows, it is incredibly challenging to find someone who will care for someone you love as you would care for them. Some of the caregivers were just not the right fit; others had personal issues that required them to be on their phones for extended periods of time, and others had unreliable transportation. The list goes on and on. Finally, in November of 2022, we found a caregiver that really became like a member of the family. We felt that our children and my mom were safe with her, and although she had no experience with people living with dementia, she was willing to learn.
In fact, we all had to learn. I am thankful that my job affords me to have some working knowledge of dementia and what living with the disease is like. However, my children and my husband do not. We had to learn not to argue with her and to let her believe some things that were not true. We stopped telling her that her parents had passed decades ago. We stopped correcting her when she repeated the same story, learning to accept her as she was in this new season of her life.
Also, around this time, we found a fantastic respite care day program that helps support families who have a loved one with dementia. Mom loved it. There were activities and opportunities to socialize. It was a great break for all of us and a place where she really loved to be. So much so, that she would want to go every day, even though it was only Tuesday through Thursday. After returning from the program these days, around 4 p.m., she would start insisting that her friends were waiting for her there, although the program ended at 2 p.m. This time of night was challenging, confusing, and frustrating. I didn’t see the stress it was putting on her or on my family. I was clouded by thinking we were doing right by her living with us.
February 16, 2023: Search and Rescue
While traveling for work, we had increased home care until about 6 or 7 pm. The caregiver left around 6:30 p.m. My husband was in the kitchen, FaceTiming with his parents for my son’s birthday, and my mom had been sitting at the dining room table coloring, as she often did. My husband went to check on Mom only to find she was no longer at the dining room table. He could not find her.
We quickly organized a search party of nearly 150 people looking for her. Neighbor’s kids, whom we barely knew, watched our kids. Other neighbors began walking and driving the streets of the neighborhood. She couldn’t have gone far. The police searched the house and the neighborhood with helicopters. We live in a large city. The possibilities of where she may have gone were seemingly endless. I posted on the NextDoor app a frantic message letting all the neighbors know that my mom had dementia and was confused. If they saw her, please notify me as soon as possible. I was thousands of miles away, and I felt helpless.
In the end, it was that communication that resulted in my mom being found. She followed a stray dog a few neighborhoods away, thinking she had gone to see a movie with friends and had gone home with them. She was 2.5 miles from home. The young couple thankfully recognized her signs of confusion and put it all together with my post. Thankfully, we brought my mom home safely that night. It can happen to any of us, even with proper measures in place, fast. With dementia, things are fine until the one time they are no longer fine.
March 2023: Increasing Care Needs
At that point, we hired two full-time caregivers. We began to see signs of sundowning. This is when people with dementia become increasingly anxious in the afternoon and evenings. Mom wanted to go back to respite care, where she insisted people were waiting for her. For a period of time, we were able to redirect her and keep her focused on things at home, specifically the grandchildren who adored her.
This period of time could be defined as a lot of trial and error, figuring out what could keep her calm, happy, and content at home. Eventually, her care became too demanding for our family, especially as my work travel continued and the needs of three children grew. We came to the decision that my mom needed a community – but more on that later.
For now, I’ll say that the heartbreak, the joy, the burden, and the blessing of caregiving are a fact of life for many of us. I strongly desire Leisure Care to be a voice for caregivers and older adults, but ultimately, my hope in writing this is that you find the support and care you need to navigate it all – wherever that may be. If I can be a resource to you in any way, I welcome the opportunity. Whether your loved one lives in one of our communities, you are considering us, or if you just need some advice from someone who has gone through this, I’m here for you. I can be reached at [email protected] or 206-436-7796.
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