Alzheimer's/Dementia - "The Long Goodbye"

It was a beautiful fall day here, in Waukesha, Wis. Though I had a lot on my mind, the gorgeous weather prompted me to pull on my Packers sweatshirt, and go outside to rake some leaves. As many writers will tell you, physical movement often jogs ideas to flow from within, and that morning’s chore did not disappoint.

Some of you have contacted me privately, and mentioned that you haven’t heard from me in a while. That is true. I guess I’ve been busy, possibly even consumed, with an issue that comes to many. Rather than remain silent, I’ve decided to share what’s been going on, and bring some light to a difficult situation. If someone who reads this is going through this too, maybe they won’t feel so alone after reading what I’ve got to say.

A loved one of mine has dementia, possibly even Alzheimer’s disease. Through trial and error, our family is making our way through… but it ain’t easy.   

Long before Facebook existed, and long before blogging was ever a thought, my mother suffered from Alzheimer’s. For years before there was any formal diagnosis of her condition, we began seeing personality changes and (what some might call) strange behaviors. She was only in her late 60’s at that time, which seemed way too young for us to even think about her having an “elderly issue” like Alzheimer’s… but we were wrong.

In the summer of 2000, my mom ended up in the hospital for Diabetic-related issues, but never went back home. Her confusion, which my dad had tried to skillfully hide, became evident to the doctors and nurses who cared for her. They said she needed more attention than my dad could any longer provide, and she was admitted to the memory care unit of a local nursing home. She was 72 years old.

My father became the main contact, and received all phone calls regarding my mom’s care. He made all of her decisions, and my siblings and I were simply there to support him/them. I thought my dad’s heart would break, seeing his sweetheart, his partner of more than fifty-plus years, in such a state. We scrambled to help him wherever we were needed. I mean, what does someone do, exactly? So… we simply showed up! Sometimes Mom slept through our visits at the nursing home, so the rest of us would just chat together. Sometimes she was sweet as pie and kind as could be. Those were good days. Sometimes she was the exact opposite. She lived there for 2 ½ years until one night in February of 2003, around midnight, she passed away. Though I’d been supportive throughout, I openly admit that I counted her passing as a blessing. It had been a rough few years, and I trusted in God’s promise that she was finally home. 

Fast forward now, 16 years. My mom’s sister is now being affected by the same disease. She’s much older than my mom was – already 93 years old – but otherwise in good health. Sadly, my aunt could not have children, and so our family, my three siblings and I, became closer to her than what might usually be the case. For 33 years, ever since her husband passed away in 1986, she has lived alone. She’s made her own decisions, paid her own bills, volunteered her time at a hospital - lived her own life. That’s all changed.

For a while now, we could tell she was becoming more forgetful, more repetitive with conversations. She admitted she couldn’t do everything by herself anymore. She still lived alone but with more assistance… until recently. See if this sounds familiar. Our aunt ended up in the hospital because of a fall, and will never go back home. Her confusion, which she skillfully hid, has become evident to the doctors and nurses who are caring for her. They said she needs more attention than her assisted living facility can provide, so she has been admitted to a local nursing home. That said, her mixed bouts of sweetness and kindness mingle with confusion, accusation, and sometimes even fury.

I can’t say this is surprising to our family, having lived through our mother’s situation, but it has definitely jolted us all into new mind sets. My brother and I, who consented to act as our aunt’s Powers of Attorney for Healthcare, are now the facility’s main contacts for her care. We receive all phone calls, day or night, regarding her care. We will make all of her medical decisions, while our dad and siblings, our spouses and children will be here to support us/her. Sometimes she sleeps through our visits, and we chat amongst ourselves. Sometimes she’s aware of what’s true, is sweet and kind as can be. Those are good days. Sometimes she’s the exact opposite.

As the youngest of my siblings, I find myself in an odd position. When my mother was going through all of this, I was in my early forties, raising young teens. Todd and the kids were my main priorities, so even though my mother was important to me, I had many other responsibilities as well. Now, I find my aunt to be at the center of many of my thoughts. I can’t help but wonder how she’ll fare, what’s next for her, and in reality, what’s next for us all?  

In the early 2000’s, as our family endured my mother’s illness, my dad often said how he leaned on his faith to get him through those difficult days. “Kate, what do people do who don’t have faith?” he’d ask. Though I’ve been trying hard not to, I find myself worrying sometimes. I know that none of us are promised tomorrow. I do have faith, and I want to trust God in all of this, so… why is it so difficult?

As Todd and I stood in church recently, singing along with the worship band, I thought about everything our family is going through right now. The songs brought me so much comfort. I thought about God as “the way” through, knowing he can (and has!) worked out every situation in our lives so far. He keeps his promises and never abandons us, while shining bright light into the darkest of places. That is what he does, and who he is! It made me think about one of my favorite passages in scripture, Romans 8:28 - “In all things, God works for the good of those who love him, and who have been called according to his purpose…”

Those words are so reassuring to me. We all experience difficult times, and God does bring us to the other side. Years ago, we watched our mother go through all of this, and are now watching my aunt. The familiarity of their similarity is both difficult for me to process, while oddly the same. Yes, my immediate human questions do arise as to how this will all play out. It doesn’t look as though our family will be experiencing a quick fix, but rather more of a journey. However, rather than simply plowing through the difficult, and quickly turning the page to the next thing, I’m looking for every ounce of good along the way. There’s no doubt in my mind this path will be packed full of lessons for us all. Will we, as siblings, grow closer? Will we find strength we never knew we had for something further down the road? None of us knows. But I do know this. I’m learning to truly trust God for it all.

Pray for us?

God’s Blessings, Katie

Katie Kolberg Memmel is the author of three books: “Five Fingers, Ten Toes – A Mother’s Story of Raising a Child Born with a Limb Difference”; “Silly Stories and Sentimental Stuff”; and “From This Day Forward…” For more information, or to order her books, visit her website at www.katiekolbergmemmel.com 

#Alzheimer’sDisease #findtheblessing #lessonswelearn