A Caregiver’s Story.
Jim Henry took care of his wife as she battled Alzheimer’s for several years. He teamed up with Deb Terry to write a book about what he learned. It’s called What Now?
He talks with Kim Barnes of Parenting Aging Parents about the journey he went on, from diagnosis to her passing.
Jim Henry was a pastor in Florida for 29 years and says he leaned on his faith for this tough walk of life. But he also learned to not ask questions, to live in her world and to avoid getting upset when things don’t go as planned. It’s a tough battle but he hopes he can help everyone gain strength and comfort to become effective caregivers.
Click here to check out Jim Henry’s book about caring for a loved one with Alzheimer’s.
Read the full transcript
Transcript of Interview: “Dealing with Alzheimer’s with Jim Henry”
Kim Barnes:
We started Parenting Aging Parents because of the journey that we were going on in our family with Alzheimer’s, and that was where it all started. Today, I’m glad to be able to introduce to you Dr. Jim Henry, who has written a book about Alzheimer’s and dementia and that journey because it’s also very personal to you. For sure, let’s start with your journey with Alzheimer’s. How do you want to start—where it began, or where you noticed it, or where do you feel like was the most difficult step? Was it in the diagnosis or in figuring out that something looked a little off?
Jim Henry:
I think it was probably figuring out what was going on because we realized she wasn’t quite what she used to be. We had a dramatic moment one day; it just didn’t seem like her. So, I said, I’m going to call Betsy, who’s our daughter, and say, “Betsy, have you noticed about mother that something seems different?” I got ready to pick up the phone and got a text from her saying, “Dad, I need to talk to you about Mama. Something doesn’t seem right.” So, we met and started going over our notes. She said, “Why don’t you take her to your doctor, your internist?” So, we did.
Kim Barnes:
Did your wife notice that there were some issues she was having? Was she conscious of that? Because I think a lot of times, the person who has Alzheimer’s doesn’t think that anything is wrong.
Jim Henry:
She didn’t at first. Then, as we moved along in the journey, she began to say, “Is something wrong with me? My memory… Have I got dementia?” She began to ask questions because she began to notice it. But we were already ahead of her before she began to ask us things.
Kim Barnes:
What was the time frame between that initial concern of you and your daughter to where you really felt like you got a diagnosis and the journey began?
Jim Henry:
From that time to her passing, it was probably seven years. We started having to change things and begin to take notice of what was happening with her. We went to the doctor, then to the neurologist. They ran some tests and we went to the best one in Florida. He gave us some medicine to start taking, but he didn’t say at that time this is what it is. But I looked up the medicine and realized what it was. So, it was seven years.
Kim Barnes:
Alzheimer’s has seven stages. Which do you think was the most challenging for you? Was it almost the very beginning, the very end, or somewhere in the middle?
Jim Henry:
I would say towards the last year or two of the seven years. All forms of dementia progress differently; some are faster, and some are slower. That last year or two was really difficult because she was not able to control her body movements as much. She began to be so disoriented. She got to where she couldn’t move her foot when I asked her to, so I had to lift her. I had to watch her more carefully. My kids said, “Dad, you’re going to hurt yourself.” I learned what dead weight means.
Kim Barnes:
Right, because even when you’re bigger than somebody, dead weight is different.
Jim Henry:
Exactly. I was having to help her off the potty, help her in a chair—any movement, I was helping her. The last year or two was the hardest. Emotionally and mentally, it was challenging, but she could still do some things. The last Sunday before she fell critically ill, she went to church and we took her out to eat. But once I got her home, she was really disoriented. She had Sundowners, she’d wander around, and try to go outside. She was just so confused.
Kim Barnes:
During the beginning stages and as she progressed, what did you have to learn or do differently? Alzheimer’s and dementia are counterintuitive. Usually, you’re trying to teach someone how to learn and do things better. With Alzheimer’s, you’re dealing with questions like “Where’s my dad?” or “When am I going home?” How did you handle those things?
Jim Henry:
That was hard for me, being a Christian and a pastor, to lie. But I learned that it was forgivable because I couldn’t argue with her. I had to either redirect or say things like, “I’ll call and we’ll make arrangements to see Mom and Daddy later.” If she said there were bad men outside, I’d say, “I’ll call the sheriff,” and act like I was calling. That would take care of it. You have to deal with the moment and change the subject. At first, it feels really odd, but I learned not to argue or say, “Don’t you remember?”
Kim Barnes:
Right, those are the things nobody teaches you.
Jim Henry:
Exactly. I didn’t have much help originally. I read the book “36-Hour Day,” which has a lot of technical stuff. But I journaled, and every day I started journaling about what was going on with her. Then I started getting some help because we had an Alzheimer’s support group at the church, which I had started years before. These two ladies in the church had parents with Alzheimer’s, so they formed it. My daughter started going to that and would call me and say, “Dad, here’s what we learned tonight.” That support group was awesome.
Kim Barnes:
That’s what we try to help people understand because it’s completely counterintuitive to anything you’ve ever done. I had a friend who went through this journey and said you just have to be where they are. Live in their world and be kind. Telling the truth can actually agitate or upset them.
Jim Henry:
One of the best lines I learned was to step out of your world and into theirs. I began to learn that she’s not going to be in my world anymore, so I had to get into Jeanette’s world. When she saw things differently, I thought, “Okay, I’m in her world now.” That really helped me navigate it.
Kim Barnes:
As a longtime pastor, how did your faith help you through this?
Jim Henry:
Without the Lord, I don’t think I could have done it very well. When I realized what I was going through, I got on my face before the Lord and said, “Lord, help me do this. I want to make you look good and take care of her the best I can.” Years of walking with the Lord help you in these crises. I asked Him to let me take care of her at home if possible, and I was able to keep her at home, and she died at home. Journaling helped me walk in her world and see what was happening. My faith in Jesus helped me take it one day at a time. He didn’t always make it easy, but He walked with me in the burden and gave me the strength to do it.
Kim Barnes:
So, you did keep her at home the entire time?
Jim Henry:
There was a two-week period when I took a group to Israel, and we tried a memory care place for two weeks. In God’s providence, one of the caregivers there fell in love with my daughter and later worked with us. When we were leaving, she said she was going to be leaving the facility and offered to help with home care. We brought her into the home, and she was an angel. There came a time when I had to have somebody because I couldn’t leave her by herself. Alicia, our caregiver, was wonderful—she would sing with her, draw pictures with her, and help her in the shower.
Kim Barnes:
You definitely needed help to keep her at home.
Jim Henry:
Yes, there came a time when I couldn’t do it alone. I needed someone to help because I was still doing some ministry. Alicia was a blessing from God.
Kim Barnes:
You’ve taken all of your experiences and put them in a book. What’s your hope for the book? Let’s share what it’s called.
Jim Henry:
It’s called “Deb Terry and I were co-authors.” She cared for her father, who had violent dementia, while Jeanette was calm. We wrote from our experiences of caregiving for different kinds of dementia. The book has 20 questions, like “What do you do when they won’t take their medicine?” or “What do you do about showers?” It’s practical, just where people live.
Kim Barnes:
What is your life like now after going through Alzheimer’s with your wife?
Jim Henry:
I have remarried, and I’m grateful for Kathy. She was Jeanette’s best friend, which really helped. She understood and loved Jeanette. We can talk about Jeanette without any awkwardness. The Lord has kept me busy, and I’m still ministering. Looking back, if I knew Jeanette would have Alzheimer’s, I would marry her a thousand times over. I learned a lot about the Lord, myself, faith, and compassion. I wouldn’t take anything for that experience. I made a pledge in 1959 to care for her, and I was able to do that. The Lord trusted me with that privilege.
Kim Barnes:
Thank you for sharing your story with us and for all you’re doing to help people on this journey.
Jim Henry:
Thank you, Kim. God bless you.
*This transcript is auto-generated. Please excuse any typos or mistakes.