If and how to tell others about the dementia

annie51

Need some advice about telling others about my DH's dementia. We play pickleball and while he can play pretty well, he forgets (and will never remember) some of the basic rules. The other players at the facility are just acquaintances or sometimes strangers if we have not played with them before. With pickleball you're always playing with someone different. Rather than let everyone think he's just an idiot, should I quietly mention his dementia to a few individuals at a time? Or should I just let it go?

gampiano

This is always a tricky situation. Is your husband aware of the dementia? Or does he think he's perfectly fine, like mine does at late stage 5? I dont know very much about pickleball, but sooner or later you're going to encounter a super competitive person who is not tolerant. At this stage, my husbands condition is pretty obvious, but when it wasn't, i had to choose the circumstances under which to inform others. It was much easier for all when i calmly shared, and most people are very understanding. good luck.

Maureen

Ed1937

Here is something you can download for printing. Pass them out as you see fit. https://www.alz.org/media/documents/alzheimers-dementia-companion-card-print-then-cut.pdf

annie51

Thank you for the insight.

Maureen, he is aware sometimes and other times he says "I'm just getting old". He's in stage 5 so it's obvious when someone tries to have a conversation with him, but when we're there he pretty much just sits with me and I talk a lot so they may not catch on. You're right that there are super competitive people there sometimes and if they started to react a certain way if he messes up, DH would get upset and want to leave. I want to enjoy this activity with him as long as I can!

Ed, thanks for the link for the download. Those will be very helpful!

I will try to mention to a few people at a time - there are many regulars there so the word will probably spread on its own.

Denise1847

Ed, You are amazing! What would we do without your experience and compassion. Grateful to have the privilege to have our paths cross. Of course, not with this terrible topic.

Denise1847

Hi Annie,

I told our close friends and neighbors, and it was better because they are very supportive.

harshedbuzz

@annie51

As the mother of a son with higher functioning autism, this is a question that comes up a lot among parents of kids who are like your DH in that they have one foot in the mainstream world and the other in the realm of special needs.

As a group, we tended to embrace the notion that if you don't give an explanation for your LO's differences/shortfalls, one will be provided for you. You probably won't like whatever that label is. My mother avoided a diagnosis for dad and he managed to burn through their core social group in 3 different states.

HB

housefinch

I am in a similar situation as @harshedbuzz because I have 2 kids with autism. Before our son was diagnosed, we endured many very stressful situations in public. It was torture, and some people are truly cruel. We now modulate our public activities based on what our children can enjoy and tolerate without melting down. It depends on what stress you can tolerate. I would not willingly put someone with compromised executive functioning in a situation where they have to remember rules, take turns, demonstrate sportsmanship, etc. If I did, I would definitely tell his play partners so they expect the unexpected. They might not want to play pickleball with someone who can no longer play to their level. I’m sorry this is so blunt.

Gig Harbor

We played cards with a group that met once a month. They truly enjoyed the game and were a little competitive. I kept us in the group longer than I should have because his playing was impacting each game. Sometimes you just have to stop for the sake of the group. Maybe you could find one other couple to play with who are aware of his condition.

SDianeL

Don't know much about pickleball but could you find a group or create a group of people who would be willing to play with you that are all understanding and not so focused on the rules? Have a set time to play in that small group? You would need to tell them about his cognitive issues but his ability to continue would be worth it.

annie51

Very good thoughts everyone! There are some who are very patient with him and are just there to have fun and get exercise and others that are very competitive. With pickleball, it's kind of a round robin where you're always playing with different people. Sometimes the more advanced people will take one of the courts to play each other so it's your choice to play with them or not. That's really the best situation so the beginners and the casual players can play together.

Iris L.

I attended one session of pickleball and decided to bow out. I have no hand-eye coordination and could rarely hit the large plastic ball. Then, when I missed, I had a hard time running after the ball and bending over to pick it up. It was just too much for me and I felt I was holding up the game for the others. Even the other newcomers were doing better than I. I'm not athletic.

Iris

Marfa

I have not told anyone of DH having MCI. He plays cards, wins sometimes in our seniors group. But He simply cannot manage money. He charged a huge amount for overpriced coins, to my credit card. I put limits on the cards I could, but I don't know what to do next. How do I close the cards that he is primary on?

Marfa

Joe C.

Annie, I play Pickleball and 2 years ago I played for a summer season with a gentleman who had Lewy Body dementia and everyone at the courts know it. You would have to tell him which side of the court to be on, whose serve it was & the score throughout the game but once the ball was in play he could return a volley anywhere on the court he pleased. He was an amazing athlete! I loved playing with him and I sure most others people did as well. Fortunately at the courts we were playing there were 2 courts designated for the highly competitive players and the more intermediate/beginner played on the remaining courts, so no one really got upset. I hope both of you can continue playing.

annie51

Thank you Joe. I'm sure that some of the players have figured out something isn't right and they're very patient. I am going to start letting others know when I find the opportunity. Since he's not really a great player, just a pretty good player, he does get more intimidated now by those who are really good (more so than when we started playing). I appreciate your sharing your experience.