Joni Navigates Her New Caregiving Duties as Both Parents with Alzheimer’s Disease Move Into a Nursing Home (Part Two)

By: Joni Streit

 

This is Part Two to Read Part One click here

The call came on a Monday in March of 2015. A room was available in my top choice. “Could they move in on Wednesday?” My mind raced and sheer panic set in. I agreed and set out to get the ball rolling. It took an army to get this accomplished. I reached out to the director of the memory care unit for help in planning my discussion with Mom and Dad. We decided that trickery and deceit were the best way.

I hated it. But I knew that they would refuse to get in my car if they knew it was the last time they ever left their home. My husband and I took them out for lunch and then we had an “appointment” to see about rehabilitation therapy for my mom’s knee. I held my breath and prayed inside as we drove into the facility parking lot, past the sign. I thought for sure they would ask what was happening. Dementia worked in my favor in this instance and made them blissfully unaware.

We walked into their room where my four siblings were waiting. Photos were already hanging on the wall, clothes in the closet. Their tv was set up and we had purchased them two recliners. It was a party-like atmosphere. The hardest part was done (I thought); they were inside the building. I told them I would be back the next day and that my house was right across the street. Thirty minutes later I received a call from them which I didn’t answer because I was scared. They left a voicemail saying they were going to walk over to my house to see me for a few minutes. This actually confirmed my decision more than I expected. First of all, my mom could barely walk, and secondly, it was cold and the streets were covered in ice. They had no logical understanding of why this wasn’t acceptable. That was the first night in 4 years that I didn’t worry about their safety when I went to bed.

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My role as their caregiver changed considerably upon nursing home placement. I spent a lot of time cleaning out their home and sifting through years of belongings. I sold their house as well as the house they rented to my sister. That first year was one full of challenging circumstances, yet I felt empowered because they were not in danger anymore. My focus shifted from worrying about their safety to pre-planning their funerals, getting all their finances in order, and finally, just enjoying my time with them.

Being a caregiver means advocating for your loved one’s daily needs. It means attending care plan meetings with staff. It means being the bad guy and having hard conversations. It means stepping into more of a parental role, a role reversal of sorts. It means reminding your dad that it is inappropriate to wander into another resident’s room to sleep in his bed.

It means comforting your mother when she hallucinates about being pregnant, and in turn, comforting your father when he just doesn’t understand why she is so angry. It means signing papers for hospice care to step in when your father’s health begins to decline. It means sitting for long hours with him as he slowly dies. It means showing up at the emergency room as he gashes his head open on a dresser with the worst kind of fall.

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It means putting on a happy face when visiting your mother so that she doesn’t pick up on the fact that the love of her life is dying on the other side of the building. It means holding his hand and watching his chest rise and fall, praying for mercy, but also not wanting to let go. It means getting the call when he finally takes his last breath, and making the same call to family members. It means planning the funeral, finding all the photographs, and writing the eulogy that you’re just not sure how you’ll ever get through without crying.

It means picking out the clothing that your father will be laid to rest in. And laundering those clothes to make sure they are fresh for him. It means continuing to show up for your mom, even on the day of the funeral, so that she knows she’s loved and not alone. It means deciding to not tell her that he’s gone because her heart would break over and over again. It means grieving this profound loss and still needing to show up in the same building where your father died. It is a conscious decision to walk through those doors every day knowing it will hurt.

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Being a caregiver means watching your mother decline as she just seems lost. It’s holding her hand when she doesn’t know why she’s crying. It means signing the papers for her to be on hospice care, even though it feels like you.just.did.this. It’s realizing that soon you will be parent-less and knowing that soaking up the time you have left is the most important thing. It means showing up to feed her every day, and gently wiping her face when she needs it. It’s trimming her nails, and brushing her hair. It’s working every day to make her feel beautiful. Being a caregiver means watching her fade away too but showing up because what if nobody does the hard things in life? 

For me, it has been an honor to walk this path with my parents. My life outside of caregiving continued, being a wife, raising two children, running a business. The balance has been difficult and some days I fail in the worst of ways. My mother is still here. But it won’t be much longer; I feel it in my soul. Never in a million years did I think I would miss this journey, but I know there will be a hole in my heart when it ends. It has taught me grace and tenderness, empathy and strength. It has reminded me of what is truly important in life. And it has softened my heart with a million little heartbreaks along the way.

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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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