What it’s like living with Alzheimer’s

New diagnostic methods and treatments are changing the outlook for people diagnosed with Alzheimer’s disease — and living with it.

It means Minnesotans “have a whole lot of hope,” said Susan Parriott, CEO of Alzheimer’s Association Minnesota-North Dakota Chapter. “It can slow the disease and people can continue to drive or go on vacation with their families – whatever that means for you.”

Five years ago, Virginia Arey, 81, received a diagnosis of mild cognitive impairment, an early form of Alzheimer’s. Earlier this year, she began an 18-month treatment with the new Alzheimer’s drug lecanemab (brand name Leqembi) at the Mayo Clinic in Rochester, where she lives.

We spoke with Arey and her husband, Stuart, about what it’s like to live with Alzheimer’s every day. This interview has been edited for length and clarity.

Q. What was your initial reaction to your Alzheimer’s diagnosis?

A. I felt very strongly that I could deal with it. I don’t really look upon it as “Why is this happening?” I look at it as something that’s hereditary, not something I have because of something I specifically did. My father had it and his mother had it. He had three sisters and at least two of them had it.

Q. What are some of your symptoms?

A. Once in a while I can’t remember what I did with XYZ, and I repeat some things. We both golf, and a couple of times I had trouble driving to the golf course.

Q. What is a typical day for you?

A. I’m a very structured person. I always go to the grocery store on the same day every week with a list. I play golf twice a week. Every other Thursday, I have my lecanemab treatment, which takes about 90 minutes. On Sundays, we go to church. We usually have planned activities, so Stuart and I aren’t spending all our time together.

Q. Have you had any side effects from the lecanemab treatment?

A. I’ve had no side effects and no problems. I don’t worry about side effects mainly because it’s gone so smoothly.

Stuart: Virginia gets a number of tests to ensure she’s not having brain bleeds, which is a side effect of the drug. Several MRIs show she’s fine, but there will be one more within the first six months of treatment. The neurologist says we might have some idea if it’s working in about 12 months.

Q. How has the disease affected your daily life?

A. I do not drive. I stopped two years ago. I miss the freedom to get in a car and go – even if it’s no more than going to the grocery store. We only have one car, so anytime I want to go someplace, Stuart has to take me and pick me up, or I have to ask someone else. I have to depend on people to help me out.

The biggest thing is I really like to play golf. I’ve played golf since my teens. I used to play with a group of women once a week. I still play golf, but I don’t do that anymore.

I did most of the cooking and grocery shopping, but now Stuart is more involved.

I still go to my book club. That’s really fun. And we have season tickets to the Rochester Symphony. My favorite is Tchaikovsky.

Q. Does having a set daily routine help you?

A. We got a small dog to help stay active. It’s a 2-year-old Pembroke Welsh corgi named Tref – short for Trefethen, which is my mother’s maiden name. He’s just a delight. I have to take care of him every day and I have to walk him.

I don’t think I actively make the connection that I need to walk the dog because it will help me live with the disease. I’m doing most of the things I do because I’ve done them for years and I love doing them.

Q. Have you made changes around your home to help you?

A. The one thing I find very helpful is the weekly planner and erasable whiteboard on the refrigerator door, which we learned from attending a Mayo Clinic program called HABIT [Healthy Action to Benefit Independence & Thinking] to help people with mild cognitive impairment maintain their independence.

I’m a former school teacher and I always kept a calendar as to what was going on at school and home. We use different colors: I have one color, and Stuart has one color, and there’s orange – for important things. It seems to work for us. I fill that out with what I plan to cook so I know what to buy when I go to the grocery store. It’s planned and it’s visible. I can see my calendar for the week and I can tell you on Saturday night that Stuart is grilling steak for dinner, which means when I go to the grocery store I buy steak.

We have a box (it has a truck on the cover because Stuart was in the transportation business), which is where I put lots of things like jewelry and my watch when I go to bed at night. Both Stuart and I know where everything is. The truck box lives on the same chest of drawers in the same position all the time.

Q. Has Alzheimer’s affected your ability to travel?

A. I’ve given up the bucket list. My mobility has been affected, but I’m really comfortable with that. We’ve been so fortunate that we’ve been able to do so many things. We’ve been to six continents and 49 states. That’s a lot of travel. We’re not going to New Zealand, Australia and Hawaii. That’s OK.

Q. How has Alzheimer’s affected your relationship with your husband?

A. I get much more help from Stuart. I’m pretty upfront about requesting it, too. I think we’ve evolved, and neither one of us is upset about having to share things to do. It makes me feel very thankful that I met him while in college and we’ve been married forever. We learned over all of these years how to be a compatible couple. I’m very fortunate that I have Stuart. He’s doing a very good job of looking after me.

Q. Has the disease changed other relationships?

A. I don’t think it’s had any effect on that. Our two children and four grandchildren [who live in Minnesota] just look at it as “This is the way it is and we’ll forge ahead.” Until a few years ago, we lived in Georgia. This is the first time we’ve all lived in the same state. We’re really enjoying that. The grandchildren like to come over on the days when I bake cookies.

Q. Do you have a plan if you need more help at some point?

A. I’m accepting of that, but hopefully that won’t happen for a long time. We’re in the process of selling our home and will move into an independent living community in a few months. We know we will have a two-bedroom apartment on the ground floor with a small grassy area. I really like to garden and it can be a place to have a couple of plants.

Q. How do you view the future?

A. What I really hope for is to be functional and continue to do as many things as I can possibly do, and enjoy my family and friends. At this point, I realize no one has come up with a magic cure, so I just muddle along.