When it happens, don’t panic!

Three weeks ago, I put out a call for stories

These set of eyes are Gardano’s, the primary caregiver for his wife. You might’ve had a pleasant run-in with him on Reddit, /r/alzheimers, where he serves as a buddy to give people emotional support and share similar experiences.

Question: What is your relation to the person with dementia?

Answer: She’s my wife of 12 years.

Q: What form of dementia do they have? When and how did it start showing?

A: She’s been diagnosed with Alzheimer’s. At some point maybe 5 years ago, I became convinced that she had profound depression. She was not able to work. She was not able to do things she normally did. Our division of labour: I brought in the pay check, and also cooked the meals. She did the cleaning, and took care of paying the bills.

As it happens, she has a friend who she has known since high school who is now a psychologist. In just one session, this friend realized that what my wife was suffering from was not specifically depression, but dementia. I feel indebted to her friend to help us find a neurologist and get the process started on getting a solid diagnosis and a start to a plan for treatment.

How was your first interaction with them upon realizing they were different from before? Were you scared, confused, shocked, sad,…?

I’ll be honest with you. For the first few months after that diagnosis, I was in an absolute panic. I could not comprehend how I could possibly deal with it; both in the short term, and in the inevitable long term. Alzheimer’s is a fatal, incurable disease. I struggled with the moral dilemma of wanting her suffering to be over quickly, and conversely wanting every day to count as much as possible, for as long as possible.

As time went on, the panic subsided, even as my wife’s abilities deteriorated. She’s still a joy to be around, and I appreciate her just as much now as the day I married her. She can be a goof, she can be a laugh, and very occasionally she remembers to show affection through a smile or putting her head on my shoulder when we dance together.

How does the disease affect the way you interact with that person?

At this stage in her Alzheimer’s, she’s really more like a toddler than an adult woman with professional credentials. I have to cut her food for her. I have to make sure to get her up to go to the bathroom early enough in the day so that she doesn’t wet the bed. There’s no room anymore for interesting conversation. Thankfully she still remembers our stupid inside jokes, and brings a laugh to both of us.

Any physical intimacy is out of the question now, which is a shame. But because she needs me to hold her hand when we go somewhere — be it the bathroom or when going on errands in town, I get to feel like she’s my high-school sweetheart. Intimate and innocent all at the same time.

What would you tell people who just found out somebody they care about has dementia?

When I look back at my initial reaction upon learning of her diagnosis, I’d say the panic I felt stands out the strongest. The panic will abate, and then taking each day as it comes has been the single most important thing for me to maintain a sense of sanity and control.

Don’t panic. Or rather, if you are panicking, realize that that feeling will go away.

What is the funniest/scariest thing the other person has done?

To me, the funny memories are tinged with sadness too. Like when she started coming out of the bedroom, on one foot a boot, the other foot a sandal. Or when I finally had to hide her mascara because she made herself look like a clown. On a good day, those things just crack me up — her innocent attempts failing so spectacularly. On a bad day, such things push the reality of what I’m going through to the forefront.

Aliases are used to protect people’s privacy.

Don’t forget to share your opinion below!

Join the mailing list to be updated on new posts!