July 10, 2024

There's not a whole lot to update on John. He continues to be fairly stable, but there is a slow steady loss that continues. John still walks around all day. He wanders around the halls, and sometimes finds his way outside and strolls out there. The staff will soon see him through the windows and bring him back inside. The change I see in his 'patrol' is that he often sits down to rest. There are benches down each hallway of rooms, and he'll often rest there. Or he'll enter any room with an open door and sit inside another resident's room. A few weeks ago the staff found John sitting on a woman's bed trying to put her shoe on his foot. I usually arrive at meal times to help John eat. If he's not sitting down but has gotten up to wander, they'll call him telling him I'm there. They often let him walk a bit before dinner, waiting to see if I'm going to show up as I often do. Then I wrap my arm through his and steer him back to the dinner table. John is given larger portions than the other residents to help prevent weight loss. He eats more slowly now, typically taking about 45 minutes to finish his meal. He'll feed himself, but when I'm there I help cut up the food, or scoop food onto his fork or spoon, or pass him his drink to encourage him to drink more. John is pretty unaware of what is going on around him. The staff has different activities going on throughout the day, and John may stroll by but has no interest in participating. He's kind though, sometimes patting people on the back as he walks by. I have a few friends with family members that are on the front end of this disease, when there are so many new things to address and navigate. We talked about many of those issues last night in an online support meeting that I attend each month. The disease is very much a family disease, as it impacts each member of the family in unique and profound ways. Those of us who have been on the path for a while encourage people to start with the Alzheimer's Association web site to find the many classes they offer and take them all. Hire attorneys to get the legal, financial and medical documents completed as soon as possible so families can act on behalf of their loved ones - especially when they can still understand and sign their names for a notary. Take on an advocate's roll with the doctors and don't allow them to sideline the needs of both the person with the disease as well as the family members. Many doctors delay referrals, testing and diagnosis, which makes providing appropriate care far more difficult. I don't understand all the details but one woman talked about being unable to implement the medical power of attorney for her mom because the PCP delayed making a diagnosis and referral to a neurologist. These barriers are common and make the already monumental job of caregiving that much more difficult. I've had to provide John's power of attorney more times than I can count along this journey. Families who don't have these documents in place hit so many unnecessary road blocks. But I digress...There are some encouraging medications on the horizon that remove amyloid plaque from the brain. Currently these new meds only help people in the very early stages of the disease (requiring the early diagnosis I was just talking about) and even then only provide about 7 more months of independence to people. But it's a step in the right direction - and hopefully will be the beginning of significant change in fighting this disease.