Jess Bengtson: Alzheimer's Dementia Education Week - Thoughts on Grandpa Jim and those who care for him

Feb. 18—National Alzheimer's and Dementia Staff Education Week is February 14-21 and I'd like to bring awareness to the importance of both the educators and the direct care staff at the Benedictine Living Community of Crookston, also known as The SUMMIT and Villa St. Vincent. I'll be the first to admit the story of my grandfather's transition from living at home to moving into assisted living hasn't been all rainbows and unicorns, but it has opened my eyes and filled my heart with appreciation for the tireless work and understanding that their employees have displayed.

I'll begin this story by sharing that I was fortunate enough to be able to grow up with my grandparents and even share lots of time with my great-grandparents. On my mom's side, we are a big family that was close-knit for decades. We spent countless weekends, holidays and summers together traveling the North Dakota countryside bopping back and forth from the Toso farm to the Leier house in Esmond and back to settle in at my grandparent's home in Devils Lake. My grandpa, James or "Jim", who is currently living at Benedictine in Crookston in the memory care unit, and my grandma, Lovey, were basically my second set of parents and I'll be forever grateful for their care and support since the second I was born.

I grew up with my cousins as my best friends and begged for sleepovers at my grandparent's as we usually got away with quite a bit more than we would have at home but that's typical "sleepover at grandma's and grandpa's house" behavior, right? My grandparents taught me how to sew, how to fish, how to clean, how to share, how to fight fair (that's right), how to cook, how to work hard, and how to be thankful for what I have and for the people around me. My grandpa worked for Jerome's Wholesale, a beverage distribution company, and retired earlier than my grandmother who worked in an attorney's office until my youngest son was born. As I grew up they grew older, but we still saw each other almost every week.

When my grandmother's health first started to decline my grandfather made sure they drove to see us (my mom, stepdad, sister, brother, myself, my kids, my sister's kids and our spouses) every weekend since we lived so close. We'd usually all go out for breakfast or lunch and take time to enjoy each other's company even if we didn't necessarily have anything new to share. Soon it got harder to care for my grandmother who was developing dementia, but she still had that sparkle in her eye and she still remembered me.

As a side note and potential important piece of this story, the relationship between my grandfather and his children wasn't ever the greatest and that resentment only got worse as my grandmother's health continued to decline. When I was young I didn't quite understand their anger about his past struggles with alcohol, his possible infidelity or their opinions on how he treated my grandmother. I only ever saw the caring loving grandparents I knew and it's still hard to consider anything other than that.

When it came time to put my grandmother on hospice care and in her final days inside their home in Devils Lake it became apparent that my grandfather was not ready to lose his wife of 60+ years. He became quite emotional, which was unusual for him, and struggled to say goodbye during her last hours. Her passing was a turning point for our family and not in a good way.

Being there and watching someone you love die cuts deeper than anything ever will. After it happens people deal with it in different ways. Some of my family members wanted to clear out all of my grandmother's things right away even before the funeral. Some wanted to stay longer and help my grandpa process. Some couldn't wait to get out of there. To this day, after inheriting from my grandmother the genetic basket of always overflowing emotions, I still can't help but shed a tear or 100 whenever I think about those final moments with her and everything that would happen after.

Within months of her passing, my grandfather became antsy. He traveled to see his daughters in other states, he traveled to visit friends and family members nearby, and he still visited me. When he wasn't visiting he would go out for breakfast at the Cedar Inn each morning in Devils Lake. He also started to sell things in his house that he wasn't using or wouldn't need, or thought he could get some extra money for. That may or may not have included some of the things his children were hoping to inherit which caused even more friction.

Soon he couldn't stand the loneliness of being in the DL house by himself and announced that he wanted to sell it. It had only been about a year since my grandmother passed and this announcement sent waves of outrage throughout our family. My grandparents had lived in that house for over 50 years, his children grew up there, his grandchildren grew up there, his great-grandchildren grew up there. His children that lived close by would not talk to him and the ones that lived far away couldn't/wouldn't do anything to help. Who gets to step in and take on the role of the new bad guy? Me.

I didn't want to see him get taken advantage of, to sell it to someone who scams him out of money and take all his things and leave him on the street. I didn't want him to have to do it alone as I'll always remember the times he helped me. So I watched from the background and waited until finally a serious buyer came forward. The deal was about to close when I found out my grandfather planned on leaving everything behind — furniture, antiques, photos, memorabilia and all. That's when I looked at my husband and without a word he started the pickup, hooked up the trailer, and we made our way to DL. We loaded every possible thing that we could and piled it into our own garage. My husband's younger brother passed away the same year as my grandmother and we acquired most of his things as well. Needless to say our garage is still not used to house any vehicles.

Once we moved my grandfather out I asked him what his plans were and was met with the "I don't know" look so he stayed with us for a while. What happened next I won't dive too deep into, but let's just say he had money in his pocket from selling his house and ended up buying another house for/with one of his granddaughters. He ended up not being able to live there anymore for a number of reasons and came back in an emotional state to stay with me/us again. His moods were all over the place, sometimes angry, sometimes sad, but most times content with our company. Soon thereafter, he was offered a chance to visit and stay with his daughter in Alaska and stayed there about six or seven months.

In early 2018 my aunt announced she would be attending a conference/retreat in Hawaii and would be bringing my grandfather along. I half-jokingly offered to meet them there to watch over my grandfather and they surprisingly took me up on it. For the next eight or nine days my grandfather and I were known as the "adventure twins." We explored the entire big island from Hilo to Kona and back again. We saw waterfalls and black sand beaches, drove up into the mountains where we found snow, checked out volcanoes, ate at oceanside restaurants, saw endless palm trees and watched countless waves of the ocean. Just my 88-year-old grandpa and I. It was literally the trip-of-a-lifetime. I even got to spend my birthday 100 feet under water in a submarine.

A couple months later my grandpa would return to Crookston to live with us again. He enjoyed going to the Irishman's Shanty for breakfast every morning and would often take our kindergartner with him. We started to notice he would forget some things, but quickly snapped back after a friendly reminder. He was still able to drive, too, but we only let him drive to the Shanty and back as other times we would drive him where he needed to go.

In September 2018, just two weeks after we moved our son into the dorms at college, we found out our son had cancer. Besides the constant fear of what was to happen next we had my grandpa to worry about, who needed and deserved more care then we were able to give him at that time. I knew of The SUMMIT Apartments in Crookston as a great assisted living option as our family had been good friends with a 100-year-old man named Allen Pedersen who used to live there. In the middle of the cancer treatment whirlwind I reached out to the Summit and my grandfather and I checked it out. I could tell he wasn't sure how it would go and possibly felt like we were kicking him out of our house (which we weren't) but became open to the idea of having his own apartment and people around to talk to at all hours of the day. We moved him in the beginning of October 2018 and he stayed there for 10 months.

Then, during the middle of the 2019 Ox Cart Days festival (which if you know me I've been heavily involved in for years and was supposed to chair the event that year before my son got sick) my grandfather had a fall and needed to be brought to the emergency room. They kept him overnight and the doctor suggested he move to full-time skilled nursing care. We had him transferred over to the Villa St. Vincent (now Benedictine) and it was apparent then that Alzheimer's/Dementia was starting to settle in more.

The next year or so was not the greatest, I'll admit. My grandpa and I talked on the phone usually daily, sometimes multiple times a day, and he often had complaints about the staff and other residents. It was typical of him to complain about things like them not feeding him at the right time as he's very particular about keeping a schedule and will notice if they fed him at 5:35 p.m. two days in a row and then it was 5:37 p.m. the third day. He complained when they took his clothes to be washed, when other residents had their TVs up too loud, when other residents "kept him up all night", or if a staff member set a boundary with him after he gave them grief.

I tried to visit him regularly mostly just to see him, but also as a way to check out the place myself and see if it was as "bad" as he made it seem during some of our phone conversations. Almost every time I was greeted by smiling faces and helpful gestures.

In early 2020, before the pandemic hit the U.S., I "busted" Grandpa out of the nursing home and brought him to visit two of his daughters in Florida. He was the most well-behaved almost 90 year old I'd ever met on that trip (his daughters were quite surprised too) and he didn't let anyone walk by without telling them he was 90 and on vacation in Florida.

Once the pandemic arrived in Minnesota it was hard for my grandpa to understand that we couldn't just come inside and see him, and he wondered why everyone was wearing masks and trying to "force" him to wear a mask. He started to get more and more confused with things, and a little more defensive too. There was one point where I had to "suit up" and go into the Villa to assist them with getting him to take a COVID-19 test. I had to hold his arms down... He cried a little, I cried a lot.

In May 2020, after some discussions with the social worker, we were able to find him a room in the memory care wing. I hyped up that room so much that I made it sound like a trip to Disney World. He agreed to "look" at it and we reminded him that he would be getting away from the other "noisy" residents and could get some peace and quiet all while looking out onto the Jim Karn baseball field where his grandson once played for the Pirates and the Reds. Baseball is my grandpa's favorite sport, by the way.

Grandpa has been living in the memory care unit ever since and the only times I've been able to take him out was to attend his two sisters' funerals and for a few hours on Christmas. We lost our two dogs, one to cancer, and a couple other relatives in 2020 also. Like many people I don't want to look back at 2020 and I know my grandpa doesn't either. With the pandemic side of 2020 came window visits and he doesn't like window visits. He gets upset whenever we try one and can't understand why we can't come inside to see him. He also doesn't understand why he can't just come outside or take us out to eat, and it just plain sucks.

Life in the nursing home hasn't been easy for my grandpa and it hasn't been easy for me lately either. I constantly worry he's going to contract COVID (he also suffers from COPD and has asthma) and I feel guilty when he's not in the forefront of my mind. Whenever I do get the chance to check up on him whether it's a phone call from one of the staff saying he's having a bad day or when he remembers (or staff remind him) to plug in his cell phone and he calls me, I feel like it's making a difference in my day and his. For now, he mostly remembers me and I'm grateful for that. Although he did recently have a bad day and thought he was at a hotel and thought my grandma was still alive. Those days kill me inside, by the way.

If I had to do these last few years all over again I would still choose Benedictine as the place for my grandpa. Through all the trials and tribulations, they've remained the constant in our lives and are still there to care for my grandpa. For those that are feeling like they're all alone in caring for someone with Alzheimer's or Dementia, consider reaching out to a skilled nursing home facility. They'll hold your loved one's hand and be that savior for your family when you feel you've run out of care options.

Thank you, Benedictine, for taking good care of my grandpa.

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