A Personal Experience with Memory Loss

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I am now going through what many people I know are going through, or have gone through. I’m quite certain that my mother has some form of dementia and it’s likely Alzheimer’s.

My mother has two older brothers who have both been diagnosed with Alzheimer’s. One was diagnosed many years ago, and the other was diagnosed more recently. The brother who was diagnosed many years ago lives with his wife and they spend their time between the family farm near Roseau, a place on a lake near Bemidji, and a place in Arizona.  This past winter my uncle started attending day programming in Arizona.  I’m not sure what the plan is now that they are back in Minnesota. 

Cameras, Locks, and Going Missing

This uncle doesn’t know who I am.  My cousin, his son, says that he isn’t sure that his dad knows who he is much of the time.  There are cameras on the property.  The other night while my cousin was there both my cousin and my aunt slept peacefully. They assumed that my uncle did as well.  He didn’t wake them up as he sometimes does getting food out of the fridge or getting his day started not understanding that it’s the middle of the night.  But my uncle had been up. 

There are cameras outside and they show my uncle getting on an ATV and driving it somewhere.  He would return after a while, park it, and come into the house.  If not for the cameras, they would have no idea about this happening.  My uncle, of course, can’t tell you anything about it.  He has no idea that it even happened, let alone what he was thinking, where he went or what he did. My cousin described a lock that will go on the doors now so he can’t get out. It sounds like something that won’t work, at least not for long.  But who knows?

This same uncle has a tracking device on a wrist band.  He began wearing this device last fall, after he was gone for a day off in the woods near Bemidji. Lots of people helped in looking for him that day.  He still seems to largely know his way around the farm near Roseau where he has lived his whole life.  He doesn’t know the woods around Bemidji.  There are big woods near Bemidji, hundreds of thousands of acres.

He has an easy-going personality which is serving him well.  He still knows his wife.  She is his security person. I last stayed at the farm several years ago.  If he didn’t see his wife, he would ask where she was.  If she went to town for something or was outside or inside, you just had to tell him that.  He didn’t get worried when he had an answer.  But he would ask again a little while later sometimes. This uncle, I believe, is 72 or 73.

In a Different Place Along the Progression of Alzheimer’s

My other uncle just visited from Alaska where he has lived his whole adult life.  He does pretty well.  He can drive at home.  He and his wife visit most years and see their siblings.  He doesn’t drive in unfamiliar settings though.  They rent a car for much of the time that they visit.  She does all the driving.  Driving on freeways would be tough for him and driving a long distance, needing to use a GPS or a map may work, but he may well get lost. 

He can tell you about the past quite vividly. He can tell you very recent hunting stories and about where he shot woodchucks by my parents’ place.  These are things he loves.  Phone conversations aren’t so exciting and he often can’t tell you what he talked about as soon as he gets off the phone.  He’s aware of much of his dementia.  He repeats stories but isn’t overly repetitive.  He doesn’t repeat over and over again and doesn’t repeat stories few minutes later, but may repeat them a few hours later or the next day. This uncle is 74.

Mom Experiencing Changes in Memory and Behavior

My parents live about a two-hour drive away in Wisconsin.  I’m not sure precisely when my mom started showing changes, but it’s been a few years.  I think it was sometime over the pandemic, maybe just before.  My daughter stayed at my parents’ place for much of the early days of the COVID lockdown.  My daughter was a 6^th grader then and had online schooling to do.  We had thought things were going well with that until we were in contact with her teachers.  She was doing very little of her work and was doing poorly at what she had done. Part of the problem was that my mom was pestering her to do things with her.  My mother greatly values education and the only grade my daughter received that wasn’t an ‘A’ throughout high school, undergrad and graduate school was a ‘B’ in typing. 

Five years ago, there certainly would still have been struggles for my daughter, but my mom would have been a help to her with schoolwork and not a hindrance. My daughter ended up coming back with us because she couldn’t get her schoolwork done and done well there. When my daughter arrived at home, she brought rabbits that my mom had bought on a whim without ever discussing with us. 

We’ve seen other changes.  There are a lot of things my mom can’t remember. Her family had a little dog while she was growing up.  Over the years, I have heard her tell different stories about him.  The other day, I asked what that dog’s name was.  She couldn’t even remember the dog.  My dad reminded me that the dog’s name was Yogi.  That clicked to me but my mom still didn’t have any recollection.

A few months ago my parents were at a restaurant.  My mother saw a dish that someone was eating that she thought looked good.  My mom has always been someone who might go over to that person and ask what they are eating so that she could order the same thing.  My dad said that he had to pry her away from this person’s table. She was leaning over the food and clearly bothering the person. She stayed until my dad had to get up and get her away from the other table. 

Sharing Memory Loss Concerns with Family

My brothers both live in Seattle and they don’t see Mom as often as I do, but they have experienced her issues with memory.  One of my brothers talked to my dad about it last fall.  I talked to both of my parents separately a few months ago and encouraged them to see a doctor about it.  My mom seemed avoidant.  She had been to an appointment but hadn’t said anything because she told me she had just seen a nurse practitioner and not a doctor.  My mom was a nurse practitioner.  She either has slipped enough that she didn’t think she could say anything to a nurse practitioner about it or she was avoiding the subject, or possibly she forgot.

I was very frustrated because I had talked to my dad about going with her to her appointment. He didn’t go with her.  Finally my brothers and I decided that we needed to all talk to both of them at the same time.  I went to their house and spent the weekend with my parents and set up a conference call with all five of us.  It went well.  It seemed well received by my parents.  They agreed that they would go together to my mom’s next appointment which was in a few weeks.  They planned to bring up cognitive changes, that her two brothers both have been diagnosed with dementia, and they’d ask about seeing a neurologist. 

Moving Forward, or Not?

So that next appointment came.  The calendar said “Bonnie – Doctor 10:45”.  My dad went with my mom and….it was a blood draw only.  The phlebotomist wouldn’t be of much help.  But of course, even though they were at the clinic they didn’t ask or say anything to anyone else there about scheduling a primary care visit or a neurology consult. Both of my parents are uncomfortable using technology, so an online system such as My Chart to communicate with care providers isn’t an option for them.

So, where things stand today, my dad had a physical with his primary physician who is also my mother’s primary.  My dad said that my mom was coming with him, and they would ask the doctor about making an appointment for her.  We’ll see what happens.  I’m hopeful but have seen things not come to fruition several other times in the past.

It’s all so sad and frustrating and scary.  I see so many people with dementia and I know and love so many of them.  With all of these people I have gotten to know them when their dementia had progressed enough that they needed to live in a facility.  I haven’t known them prior to dementia.   And none of them are my mom.  None of them raised me.  I haven’t known any of them my whole life.  So I’m sad, so so sad.  Not sure what the future will hold.  Not sure how much my dad can handle.  Not sure how much my mom can handle.  So many uncertainties. 

Reverend Arlen Solem

Chaplain and Campus Pastor

In gratitude, thank you so much to all of our volunteers and donors who make all of the work we do at Cassia possible. Your contributions are greatly appreciated and needed to ensure we are able to fulfill our mission.

For questions about our spiritual care program, or if you would like spiritual care and support for you or your loved one, contact Chaplain Arlen Solem at 612-263-0503. or Arlen.Solem@cassialife.org.

At Emerald Crest, we offer a deep knowledge of memory care in a specialized assisted living setting for seniors with Alzheimer’s and dementia-related conditions. We encourage you to contact us directly with any questions or request a tour. For tours and general information, please contact Elizabeth Wendel at 952-908-2215.

Emerald Crest by Cassia provides memory care in a unique environment, specifically designed to support those with cognitive issues. Utilizing this exceptional model of care, individuals with dementia, Alzheimer’s and related conditions can flourish in positive relationships and participation in meaningful activities. Memory care is offered in the Minneapolis – Saint Paul area with communities in four convenient locations: Shakopee, Burnsville, Minnetonka and Victoria, MN.