Thinking Through the Unthinkable: "The End" of Alzheimer's

By Kathy Matheny

3 min read

Thinking through the unthinkable - those words fill me with dread. I have cared for my mom for 10 years. I tackle every new twist, turn, and setback. I keep up with all her medical and dental appointments. I wash her clothes and make her meals. I keep her company and keep her as healthy as I possibly can, given all her circumstances and co-morbidities.

How will it all end? When will it end? I do not mean that as a selfish, ghoulish question. As hard as this is, being a care partner is a limited partnership. I do feel ghoulish asking the questions, but should I? No one wants to talk about it, but it may help me be ready, unless it is impossible to be ready for the death of a loved one.

Sizing the possibilities

Mom and I were recently at our lady checkups, so the nurse practitioner knew exactly what was going on with mom. We talked about what tests and treatments we would and would not do going forward. It is the law of diminishing returns. The cure could be worse than the cause. Very little is recommended once you are my mom's age.

She told me that her mom had Alzheimer's disease and had passed, so she knew what I was dealing with. I asked her how she had passed, if she did not mind my asking.

The nurse practitioner said it was actually due to a UTI. She said one of her mom's caregivers would wipe her back to front, and they think she got an infection. It doesn’t take much to tip the scales past recovery when there is a breakdown in someone's health and it is already compromised.

My dad had Alzheimer's disease and died of kidney failure. He, too, got a UTI that went to his kidneys. I was told it is hard for a healthy person to recover from the kidney infection my dad had. My dad was gone the next day.

Hard questions and hard answers

I need more answers, so I Googled. I found a link to a UCLA health website and found an Ask the Doctors forum titled, "What is the cause of death in Alzheimer's disease?" I must not be the only one with this question. Fun fact, it says Alzheimer's disease is one of the top 10 causes of death in American adults. What makes it fatal?¹

When someone has Alzheimer's disease, their brain shuts down, and it cannot give the proper signals to the body. It does not heal as well anymore. Swallowing can be affected. That can lead to aspiration pneumonia. There can be falls and strokes and high blood pressure. Those can all lead to death, too. Ugh, I hate talking about this.¹

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What do I do with these uncertainties?

However, knowledge is power and a defense against ignorance and mistakes. I do not want to weep one day lamenting, "I didn't know!" That is worse to me than knowing too much. I will do my best to keep track of her meds, blood pressure, wounds that might not be healing, and safety from falls. According to the law of diminishing returns, it is a grim race to the finish line, between her lymphoma, high blood pressure, diabetes, and age.

Therefore, I will cherish the days we have. There are more ahead, and I will not be robbed and taken by surprise if I can help it. We will finish strong together and with dignity. At the same time, there is only so much I can do, and I cannot drive myself crazy being hyper vigilant. Life is precious for both of us.

Maybe it's the serenity prayer that sums it up best for me: God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

If you have lost a loved one to this disease, how did it happen? Does knowing help the heartbreak?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AlzheimersDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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DonnaFA Community Admin
<inline-mention username="Kathy Matheny" user-id="2372926"/>, some of the things you mention are things I have been thinking about. I don't remember the post, but it made me think of Benjamin Button, and how much better life would be if we aged backward, the end being full of love and gentleness. That got me thinking that it is quite a lot like having children, making the best decision, and endless worries about welfare and safety, and having your precious people in the world. We agonize every day, and we know it is our job to deliver these people to the world with the tools they need, and a heart to know what the world needs. I became a CNA because I was lost and looking for some kind of meaning. II had tried to help someone I cared about out of a DV situation. She came to me one day and said she was leaving, I asked her to let me call the local shelter to send someone with her. She said she would be okay, but she wasn't. I felt like I failed her. I was deep down the well and a friend talked to me about being a CNA. When I could drag myself up enough I went to visit some nursing homes, and volunteered at one before deciding to go to school. And I feel in love with the Alzheimer's community. I felt I had a purpose. It seems counterintuitive that I was running away from death, into a place where death was end of the path. But there was a vital difference. It wasn't people pulled out of the stream of life mid-stream. It was an opportunity to give love, dignity, and support, to take someone's hand and walk with them on what might have been a lonely path. I think walking the end of that path with the person who walked the beginning of the path with us would be the greatest honor, and tribute. There will be loss, and I wish that wasn't so. But there is this priceless, precious thing that you are building with her now. Sending (((hugs))), Kathy. - Warmly, Donna (Team Member)