Joni Shares Her Story as The Hesitant Caregiver of a Duel Alzheimer’s Diagnosis for Both her Mom and Dad (Part One)

By: Joni Streit

My journey to caregiving was a reluctant one. I’ll just say it. I did NOT want to be The Person for my mom and dad. A difficult childhood with a lot of lingering hurt and resentment left me questioning why *I* had to be the one. There were four other siblings. I was the middle child. I felt like I had a free pass.

Fast forward seven years later after grace and forgiveness (and a lot of hard personal work) found their way into my heart, and I can honestly say that caring for my mom and my dad, a double diagnosis of Alzheimer’s, is the best and hardest thing I’ve ever done. It has been an honor to walk in the valley of the shadow of death with them for seven years: to watch them struggle and pick themselves back up again, to cheer for them in the small victories, and to cry with them when it was all too hard, all the while holding their hands.

My dad was diagnosed first in 2011. I believe the signs were likely there starting in 2009, but in typical fashion for my family, we enjoyed a thick blanket of blissful denial over the hard things in life. My mom continued to work outside of the home as the cafeteria lady for our local college. She would leave notes for my dad reminding him of the date, what he needed to do, and that he should eat.

In early 2012, my mom hysterically admitted that she was the target and victim of a massive elderly scam: the kind you hear about and anger fills your soul. These evil criminals had preyed on and threatened my mom, and as a result, she had given them all their money. It was such a mess that she was unable to cognitively process what she had done or any kind of timeline. I worked to piece together as many details as I could, but it was clear that her judgment was impaired.

[My mom] would leave notes for my dad reminding him of the date, what he needed to do, and that he should eat.

I truly feel she was so focused on managing my dad and wanting to financially care for him without having to leave him at home while she worked that this “opportunity” to make thousands of dollars appealed to her, despite the risks. If you had told her she could become a millionaire by canning green beans, I believe she would’ve started a garden. Her desperation to maintain control over their life together was painfully obvious.

I used this nightmare as a way to convince her to see a doctor, something she had refused to do. It turns out that since she had sent $80,000 to strange men in hopes of becoming rich, she was intensely contrite and willing to do anything I asked of her. I knew what would come from that doctor’s appointment. I walked out of it with her and my dad and the weight of the world on my shoulders: two parents, both with Alzheimer’s, living at home alone, with no money.

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We learned together for a few years. The first major obstacle was removing the keys from their home and revoking their ability to drive. Their anger toward my brother and me was tinged with betrayal and disbelief. We blamed the doctor. Now they truly were stuck at home. I visited several times a week: taking them food, cleaning their house, helping them shower, folding their laundry, showing them how to take their medicine. I took them grocery shopping, to the library, out to lunch, and to all of their medical appointments.

I lived in a constant state of fear that they would wander off from me in a public place or, heaven forbid, try to open the car doors while I was driving. I networked with their neighbors to insure that they would call me if they saw anything out of the ordinary. I received calls several times about Mom and Dad walking around their property in extreme cold temperatures with snow and ice on the ground. I was perpetually stressed at the “what could happen” scenarios.

In general conversations, I began to question them about what they would do in different emergencies. I needed to know that they were capable of calling 911 if necessary. Neither of them could tell me what numbers they would dial. I asked them what they would do if there was a fire in the house, and my dad said, “I’d just put it out!” and shrugged his shoulders. The severity of those potential scenarios had zero impact on them.

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In August of 2014, my dad wandered off in the middle of the night. In what can only be described as a miracle, my mom was able to figure out how to call my brother, who then gathered some other family members. I still don’t know how she knew what to do, or why my dad didn’t have his phone (that she used) on him at the time. He was found on a farm four properties down the country road. He was disheveled, without his glasses, and carrying a pitchfork. Backlit by the moonlight, my brother described the scene as terrifying, especially with a pond mere yards away. When he was brought back into his house (of thirty years), Dad said he had never been there before.

Now that I can breathe and think clearly, I ponder just how tragically this situation could have ended. Because Dad was not hurt at all, I can say that I’m incredibly grateful this happened. I know, it sounds weird. Hear me out: this moment was pivotal in showing my family what I had been worried about all along. I saw the potential for something bad happening constantly because I was there. We were just waiting for the next disaster and taking a chance that everyone would survive. Placement into a secure memory care facility was imperative. Finally the family was mostly in agreement.

This became my personal mission: finding them a room together in a unit that was locked, warm and friendly, geared toward dementia patients, and with a low staff turnover. I spent hours upon hours with an elder care attorney, preparing to apply for Medicaid so that we could pay for their care. I toured four facilities, but my favorite option was a mere three minutes from my house. I put my parents’ names on a waiting list: we didn’t just need one bed, we needed two. I prepared to wait. I wrestled with how to convince them both to come with me. They had been so adamant about not wanting to ever be placed in a nursing home. The guilt I felt was overwhelming. This was not what they wanted, but their safety was more important.

Stay tuned next week, Joni’s caregiving story continues as she waits to hear if her parents are accepted into the care home.

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We would love to hear your story! If you are a caregiver or know someone who is, and you want to write a piece about them, please submit your article to be featured on our site throughout the series. Send your story to theupsidetoaging@gmail.com.

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