Dear Windy City, I'm so glad you found us! Being the pillar of support in a family of people with a chronic and frequently misunderstood disease is not an easy job! This online support group was designed not just for people with PsA, but also for their support network (family, friends, caregivers, etc). Sometimes denial runs strong, and if you can't talk about it with the person who has the disease, you need a place where you can come and ask questions and find real information. That is what we are here for.
I used to have a job that kept me "engaged." I was the CEO of a midsize nonprofit organization (an adult education and cultural arts center) that served more students and offered more programs with less money than any other adult education center in the country. We were nationally recognized as a model for adult education programs. It was a great job but full of stress. When I was a kid, I was incredibly unorganized and unfocused, but everyone assumed it was because I was creative and had my "head in the clouds." That was partly true. I also think it was the first manifestation of PsA for me. After I grew up and "got a real job," I was able to buckle down and focus. I became almost regimental in my ability sort order out of chaos. I wrote grants, reported on grants, ran the day to day operations, collected data, organized that data into spreadsheets and databases that were easily searchable, etc. etc. When my brain started fogging over, no one (including me) recognized what it was - it became kind of a running joke when I would start drifting off during presentations onto tangents, or misplacing things, or forgetting what word I meant to use in a sentence. The staff and I would laugh, and get back on track and things would go on. Unfortunately it began to become more frequent. I started forgetting important meetings, even though they were on my Google calendar, my desk calendar, and on the multiple lists I created at the end of each day for the next day's work plan. So I took a pay cut so I could hire a part time administrative assistant to help me keep organized. Again, it seemed like I was just overwhelmed with all the things I had to do (I was working 80-120 hours a week, and hadn't had a vacation in 7 years). Even when I got diagnosed with PsA, it didn't click. I knew I was getting sicker. My psoriasis was out of control, my joints were incredibly inflamed and ouchie, My typing ability went from 90 words a minute with no errors to hunt-and-peck. But I was on medications, and I was determined to continue doing what I needed to do. I was silly enough to think I was the ONLY person who could do my job successfully (actually, it turns out that was correct, but that is another story for another day). Finally, when 2 staff secret love affairs imploded and the whole organization was rocked with 2 back-to-back sexual harassment claims (both were sour grapes, but had to be fully investigated because of the secrecy of the then failed love affairs), it became obvious to me and to a lesser degree to the board of directors, that I wasn't all there. I finally stepped down because it was becoming increasingly difficult to do everything that needed to be done when I kept forgetting things, losing lists, forgetting to input data into the databases and spreadsheets, etc. This all finally came to a head a few weeks ago when my husband found me crying in the kitchen with an onion in one hand, a sharp knife in the other, and not able to figure out what the knife was for. It took me 20 minutes to quarter an onion, and then only happened because my husband took over making dinner and encouraged me to go lay down. I had already spoken to doctors about it (I didn't quit my job without trying to figure out what was wrong with my head), and had had several tests that were completely inconclusive. I didn't figure the problem completely out until two things happened: 1) My mom was diagnosed with late stage colon cancer, and began exhibiting the exact same form of brain freeze when she started chemotherapy, and 2) I came on here and started reading about other people with PsA having brain freeze (or as I affectionately call them Brain Farts). I can't tell you definitively whether they are from the meds or from the PsA, but there is certainly a correlation between those two factors and dementia/early onset alzeimer's- type symptoms. The good news is, your husband, his sister and YOU are not alone. The bad news is, there isn't a cure, nor do doctors even recognize the need for one. BUT, the other good news is, there are things you and he can do to make adaptations so that those forgetful moments don't ruin your lives. Make lists. Make lots and lots of lists. Write down, and keep handy, simple step by step instructions for things he has to do every day that he might have trouble with. The most important thing you guys can do, though, is to communicate. I don't know you, him, or the dynamics of your relationship, so I can't tell you how to begin the communication process, but both of you need to figure out how to let him acknowledge what is happening in a way that feels safe and non-confrontative. Once he begins to admit to you (and most importantly to himself) that there is a problem, you can encourage him to come on here and begin reading. He doesn't even have to begin with doing anything more than a simple introduction on the new members introduction place. He can then start scrolling through the various discussions. This brain-freeze type thing comes up pretty regularly. Once he realizes he isn't alone in this fight, hopefully he will be able to start talking to you about it. Eventually he will realize that we are all normal people in extraordinary circumstances, and we are all here to support and encourage each other without judgement, and he just might start asking questions here also.
Good luck, keep on this site reading and learning. It could change your life in positive ways you can't possibly imagine. It certainly did mine!