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The Alzheimer’s Odyssey: Getting the Diagnosis

My grandma has Alzheimer’s.

It took a year of appointments and interactions with a multitude of medical professionals to confirm what I had seen play out before my own eyes for almost two years.

My caregiving journey officially began in the summer of 2015, but looking back, I realize that I was slowly assuming the role of my grandma’s caregiver without even knowing it. In Spring of 2014, I became her Durable Power of Attorney and helped her get settled into a series of new living situations. I began checking in on her weekly (even though she would cook us lunch).

At that time, my grandma was only slightly showing what are typical signs of aging-related memory loss and decline. She forgot or got mixed up on people’s names. The diameter of her driving trips started shrinking. She would make right turns from the wrong lane.

Also at that time, my grandma was volunteering twice a week at her church’s food pantry, going to Life Group, attending church, paying every single one of her bills in person before it was due each month, picking up her girl friend Linda, and going to the store. Basically, she was busier than most of us pretend to be!

After my grandma’s four-month hospitalization that summer, she had changed. She could no longer walk without the assistance of a walker. She now had a colostomy to take care of. She couldn’t remember things that happened before she went into the hospital, even some of the most essential things about herself and the basic things we know about the world.

There would be no more Saturday lunches.

Six more months and two more hospitalizations and rehab stints accompanied by home health visits passed by, and Grandma was home for good. They always tell you that once people have been home for awhile, they bounce back and snap to it. I kept waiting for that to happen, but after a little more time passed, I realized Grandma has reached the point of her trajectory where it starts heading downward. She began requiring daily assistance and monitoring.

At first, I chalked it up to trauma. I told myself that my grandma had experienced a great number of losses, changes, and heartbreaking events over the course of a short amount of time. Trauma has some seriously powerful effects on people.

Then, I asked, I wonder if Grandma is depressed? She has every reason to be sad: She’d lost her home of 30+ years. Most of her friends had passed on. When she got home from the hospital, people who said they cared for her didn’t call or come check on her. Aside from me, she was basically alone.

We got her going back to church, and even participating in her Life Group again. I slowly started sneaking in helpers (people I pay behind the scenes) to provide companionship to her. More and more, we started getting her out into the world again. I thought that by increasing her happiness and getting her back to doing the things she used to do, I could bring Grandma back to how she had been before.

But Grandma was still on the decline.

During this same period of time, my grandma was complaining of vision problems. After more visits to Discover Vision than I can count on two hands, they finally told her there wasn’t anything they could do for her because they couldn’t see what she was describing happening with her eyes. I tried to pry it out of them: do you think this is related to Alzheimer’s or Dementia?  They wouldn’t—or maybe couldn’t— say. That is when I realized we probably were going to call in special forces.

 

Getting the Diagnosis: Our Journey 

  1. First, we agreed that it probably made sense to talk to Grandma’s primary care physician about the memory issues. We we shared our concerns with him. He referred us to a neurologist for further examination. Originally, our first referral didn’t have an opening for more than six months. I told them, “My grandma could be wandering out the door by then!” And we got another referral for a neurologist who saw us the next month.
  2. We visited the neurologist in March of 2017. I shared our journey with her as well as my concerns about Grandma:
    • She was opening the door for people she didn’t know and even letting them in.
    • She was no longer able to manage her finances (and all the scams she’d gotten wrapped up in),
    • She was forgetting to use the various devices we’d put in her house to keep her safe,
    • She was burning food on the stove, and
    • She just couldn’t remember most things outside of her daily routine.

    The neurologist did some basic testing and asked us some questions about her life. She suggested going through a series of cognitive testing to tease out if Grandma was actually exhibiting symptoms of Dementia, or if some of these behaviors were due to depression.

     

  3. So we set up the cognitive testing. The local rehabilitation powerhouse, Ability KC, conducts these, along with a myriad of other services for older adults.

    The testing had three parts: an interview to get an overall view of Grandma’s life, education level, and medical history. As her primary caregiver and personal secretary, I was able to participate in the interview. Then, Grandma went back for an extensive round of cognitive tests, where they had her do math and word problems, memory activities, and asked her a ton of questions about different things. She did the testing by herself with the psychologist. Finally, we went back to discuss the preliminary results, which were later mailed to us in a long, technical report and shared with her doctor.

    The main recommendations made at that point were to 1) get guardianship of Grandma and 2) start looking into long term care facilities. It took me awhile to take any follow up steps after the cognitive testing.

    The suggestions made at that time were very daunting. Do I strip Grandma of all of her rights and take over her ability to make choices? Grandma seemed okay with hearing she should start looking into facilities, but as a person who has been so vocally opposed to them, how do I move on that direction?

    Ultimately, I decided Grandma was doing okay and at least now we had some inkling of what to expect in the future, so I put that on the back burner.

    After a trip to the ER after a fall and the mandatory follow up with her primary care doctor earlier this year, Grandma’s continuing memory loss came up and discussed the testing that had taken place. He suggested it was probably time to follow up with the neurologist. When it came up on someone else’s radar, the neurologist got moved to the front burner.

  4. We met with the neurologist in March. She took one look at one of the contact notes from the testing we’d done, listened to us for a few minutes, and then undeniably declared that Grandma has Alzheimer’s. She echoed the recommendations of the psychologist. Go get guardianship. Start looking at memory care facilities. She also suggested considering a medication to help with the memory issues. 

 

And so here we are.

Note: Grandma doesn’t actually recall meeting with any of these people along this adventure.

 

Rachel’s Reading List

Teepa Snow
Teepa is one of the leading educators on dementia and the care that accompanies it. Teepa uses a positive approach that focuses on making use of the skills retained while providing support, and substituting our skill, for what is no longer available.

Alzheimer’s Foundation of America Webinar Archives
The AFA has a great collection of free, archived webinars that cover a variety of topics related to caring for someone with Alzheimer’s.

Looking forward

Now that we have an official diagnosis, what’s next?

My first priority is to get educated on strategies to support my grandma to be and feel safe, wherever she is, and for coping with her decline (read: how to keep your head from exploding when you have to repeat yourself five times inside a half hour). I plan to dive in head first and learn everything I can about how to make her downward trajectory as comfortable and peaceful as possible.

While I’m educating myself on the methods and tools I will need to keep supporting my grandma to age in place, I’m also looking at information about my options for formal protections for her that won’t strip her of all of her rights, as well as preparing for difficult conversations— like

  • What happens if something happens to me, your primary caregiver?
  • Is it going to always be safe or smart for you to keep living at home by yourself?
  • If you do have to move, what kind of place would you like to live in?
  • What do you want your final arrangements to look like?

 

Looking back

Personally, I don’t like to spend too much time perseverating on the past. We, as humans, have a tendency to get stuck there, then we become disabled by guilt and regret. However, there have been moments that really shook me and showed me that Grandma probably could have used a little more help sooner.

When she started turning right from the wrong lane, for example, I probably should’ve suggested she consider consulting with someone on safe driving.

Once I started taking over her bills when she was in the hospital, I realized she was knee deep in magazines she’d signed up for in hopes of winning millions of dollars. These crooks were calling her thsucking all money directly out of her bank account.

We all get wrapped up in our own worlds and sometimes live with the blinders of denial on. As a person who hadn’t even reached 30 when all this began, I am no different. I was very busy concerning myself with my own life and future.

It is important to remember that our aging family members will not always necessarily remain the smart, strong, independent people as we saw them growing up, and they might eventually need some level of care.

Never be afraid to let someone you care about know that you are concerned for them and ask how you might be able to help.

If you start preparing early, the adventure is a lot less bumpy, that’s for sure!