Six years ago, my mother was diagnosed with Alzheimer’s and dementia. Like most people, we found this out while we were dealing with another health issue. What followed was a four-year adventure of moving my mother to live near us, taking her car keys away, and becoming the administrator of her affairs.
She died last July, and after a year of grieving, the fog is beginning to clear. I thought I would have moved through more of my grief, but even now, some days are harder than others. My friends want to know what I’ve learned. They will ask, “What did your journey with your mom teach you? What do you know now that you wish you had known then?”
My list certainly isn’t exhaustive and the order changes from conversation to conversation, but here are five things I wish I knew about caring for a mother with Alzheimer's.
1. Go Ahead and Have “THE TALK”
Everyone knows they need to do it, but it just seems creepy or tacky to bring up the subject of dying in the company of those who are still living. No matter how you bring up the subject, you always look like you’re hoping the person you’re talking to would hurry up and die so you can get their stuff. But putting off the conversation will not postpone the inevitable. People you love are going to die.
When they do, you will be shocked and overwhelmed by grief. Breathing will be hard, much less making important decisions. Do you know where your parent or spouse wants to be buried? Do you know where the accounts are? Do you know how they want you to handle their property? Have promises been made about certain things? Is this list written down?
Get everyone to sit down at the table, get out a legal pad, and work down the list one question at a time. Yes, it will be uncomfortable, but when the moment comes, you’ll be so glad to be able to grab your list, answer the million questions you’re going to be asked, and answer them all with the confidence of knowing, “This is what they wanted.”
2. Take Action When You First Notice the Problem
The stories are all the same. One person says, “I think something is wrong.” The other family members will disagree and one of the children will defend their mom or dad, but don’t think putting the decision off will make it easier. It won’t. The decision is always hard, and it only gets harder. As you soon as you notice something unusual, get them to a doctor for a “routine” checkup. Get the medical facts. Once you know, you know, and you have no excuse not to act in the best interest of your loved one.
That means getting control of the finances. When someone begins to deal with Alzheimer’s, they become easy prey to scammers and opportunistic family members. All of us have heard stories of senior adults who have been scammed out of their life savings by internet crooks or family members who turned out to be untrustworthy.
3. Prepare Yourself for the Long Haul
Most of the time, this journey is a marathon, not a sprint. This means staying active in your prayer life and in your Scripture study. It means eating right and getting some exercise. It means getting the rest you need. Do you remember the instructions of the airline steward the last time you flew? Remember the part about the oxygen mask falling down from the overhead panel if the cabin loses pressure? That’s right. Put your oxygen mask on first.
In the same way, you have to make self-care a priority. I know this sounds counterintuitive, even “un-Christian” maybe. But if you don’t take care of yourself, there will be no one to take care of your loved one.
4. Adjust Your Life to the New Realities
I learned this lesson the hard way. For our anniversary, my wife and I had planned for several years to go to Rome. We went even though we had moved Mom to live near us. That was a mistake. While we were in Rome, her care center called and said Mom was in the ER because she had lost hearing in her right ear.
Mom had been deaf in her right ear for years! For some reason, Mom had awakened that morning and forgot she was deaf in her right ear. Trying to deal with the emergency room, Mom’s care facility, and Mom from a cell phone in Rome was an absolute nightmare. After that, we learned to vacation within an hour or so of home.
I also trimmed my schedule and took very few out-of-town engagements. I was caring for Mom and that took all of my spare time.
5. Have a Little Grace for Yourself
Most of the time, there isn’t exactly a right answer. You will have a choice between two pretty good options. One may work and the other may not, but you can’t be sure. In fact, you’ll find yourself trying something that worked yesterday but isn’t working today. You’ll be constantly frustrated because every situation is different, every person’s journey is different, and there’s a lot more trial and error than you’ll be comfortable with.
You have to find a way to settle in with “this is the best I can do.” Some days – no, most days – this will be all you have. You won’t have any way to know if what you did that day was right or wrong; you’ll only know it was the best you could do in that moment.
Here’s how I was able to come to terms with my new reality.
When I showed up in my mom’s life, she was a 19-year-old wife of an airman first class living on an Air Force base in Louisiana. When I was born, there was no book on me. My mom and I never had a meeting about what I would need from her or how I wanted her to be my mom. I just always knew that every decision she made for me would be in my best interest. I never expected her to be perfect. I didn’t like every decision she made, but I always knew, in her mind, she was doing what was best for me.
That’s all she would want from me. She would understand there wasn’t a book on how to do this. She wouldn’t agree with every decision I made. She didn’t have to. The only thing she wanted to know was that every decision I made for her was made from a son’s heart who loved his mom. She knew that. She knew I loved her the best way I knew how. I wasn’t perfect, but she wouldn’t expect me to be.
I loved her the best way I could, and you know what? I can live with that.
Mike Glenn is the Senior Pastor of Brentwood Baptist Church in Brentwood, Tennessee. Under his leadership since 1991, the church has grown to a church with eight campuses and a membership of over 11,000. He graduated from Samford University in Birmingham, Alabama and The Southern Baptist Theological Seminary in Louisville, Kentucky. Glenn has written two books, In Real Time and The Gospel of Yes, and writes frequently on his blog, MikeGlennOnline.com, and for Patheos.com. He is married to Jeannie, his wife and best friend of 37 years. They have twin sons, Chris (Deb) and Craig (Nan), and three granddaughters, Mackenzie, Rowen, and Brooklynn.
You can purchase Mike Glenn’s new book Coffee with Mom: Caring for a Parent with Dementia on Amazon, LifeWay.com, or wherever books are sold.
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