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On Being a Caregiver For My Soulmate (Early-Onset Alzheimer's)


Editorial Review Phoebe Stoye, A.B. in Neurobiology, Harvard College

David Sims, 62, and his partner, Ed Patterson, are a couple of social butterflies. With David's love of cooking and decorating, they are always ready to lay out a gorgeous brunch spread or host a holiday party at their home in Clermont, Florida. If you're lucky, he may even sit down at the couple's baby grand piano and play you a tune. Their tight-knit community offers endless opportunities to socialize with neighbors, who have become close friends and an even closer support system, something that David has leaned on heavily since his partner was diagnosed with Alzheimer's.

David has worked as a nurse his whole life. For the past 20 years, one 12 hour shift at a time, David has worked for one of the largest county jail facilities in the United States, which houses anywhere between 4,000 and 5,000 inmates. As he puts it: "If you're ever arrested in Orange County, I'll be one of the first people you see." But thanks to Ed's job moving the two all over the country, David eventually found a job working with dementia patients and learning the ins and outs of dealing with this disease. There, he learned how to "step into their reality." But it's very different when the reality you're stepping into is your soulmate's. Here is his story.

(Editor's Note: if you are a caregiver, you're not alone. Check out Caretalk's page with resources & support for caregivers.)

Tell us about your experience receiving the diagnosis of Alzheimer's for you or your loved one. What have you learned or wish you knew?

In September of 2018, although Ed was quite functional, there were just some things that occasionally got to the point where you really could not just explain them away. I wanted to know what was going on with my husband, and I wasn't going to let it sit and simmer. If there's something you can do when there's a problem, you need to do it. You don't need to ignore it, because it's not going to get better on its own.

I would say that being a nurse probably helped me to realize what was happening. What also helped was just being proactive. I had a father that never liked to dwell on problems. He always said if there was a problem, then we would need to come up with a solution. That was a good role model for me, and I've tried to apply that to my daily life.

(Editor's Note: Alzheimer's Disease is extremely underdiagnosed, because sometimes even clinicians have a difficult time reading the signs. Check out Caretalk's tool to evaluate what stage of Alzheimer's your loved one might be at, and relevant treatments.)

What was it like adapting to your or your loved one's condition?

When you are caring for your partner with Alzheimer's Disease, you can lose perspective. You can let your emotions be involved in how you approach it. When there are family members involved, stepping outside of your emotions is very difficult, especially when you're in the middle of it. You can let your emotions cloud your objectivity. That's basically it. It's about having your loved one's best interest at heart. It's not easy.

Has the diagnosis changed our relationship? Well, our relationship has always been very good and very close. I would say that has not changed. I would say that we're just continuing our journey together–side by side. We always say we want to grow old together and now, it's happened a little sooner than I anticipated. You look back on the years and you just wonder where the time has gone.

How would you like to remember your loved one?

I want to remember Ed through his loving personality. That's one thing I will always remember. Our daily interactions with each other ,whether that's good or bad times. We're going on 34 years living together, and I would say that this is my major relationship that I'm going to have in my lifetime. I don't feel like I could ever do that again. If he predeceases me, I'll always remember him as the love of my life. And I would think if I predeceased him, he would probably say the same thing.

In any relationship, there's always a look–or the way somebody says something–that just keeps you connected. It could just be the way they turn and smile at you. That's something I will always remember.

Do you feel like this experience has made you a stronger person?

That's a hard question. It helps you prioritize. Some things that may have been important, don't take on as great of an importance. It helps you reflect on quality of life issues. I think any experience in your life makes you who you are today. So, I have to be strong. There's not a choice here. Whatever I do, I'm doing for us.

Would you like to add anything else?

I look forward to our future, and I look forward to the research for this disease to make great leaps and bounds. There's some studies out there that are really good. I personally believe at some point, they'll come up with treatments like they did for HIV–where they get this disease from different angles and with a combination of different things. It'll help maintain and make it to where they can just stop the progression. I'm hopeful for the future, in coming up with a better treatment for this.

(Editor's Note: 50% of clinical trials fail because they don't enroll enough participants. You can stay involved with the latest research & breakthroughs in Alzheimer's here, and learn how you can make an impact on the condition by participating in a trial.)