January 28, 2021

Monday morning was tough - John was super negative and frustrated. I wrote down some of the things he said during the hour we were getting ready for the day: After trying to adjust the temperature of the shower water (that's always frustrating to him because he can't get it right and alternately burns or freezes himself, or shuts the water off altogether, or gets mad at me when I try to help) John said "I want to go!" I said "Where?" He said "I want to go to a world where people will listen to me." Then "Somebody has taken my life. Somebody has taken all the information I had." "I might as well be dead." "Today might be the last day you see me." I asked "Where would you go?" John said "I don't know. I might just disappear." So yes, I delightful start to the day.

January 17, 2021

I participate in an Alzheimer's Support Group that meets monthly. It's sponsored by the Alzheimer's Association, but like the association the group addresses all forms of dementia. It's called the Alzheimer's Association simply because it's the most commom form of dementia. The Alzheimer's Association supports 2 main things - it funds a huge amount of research into all forms of dementia (they're the largest nonprofit funder of research) and it supports people struggling with dementia and the caregivers who help them. They offer many courses on a wide array of subjects (communication, legal issues, medical issues, etc), a 24 hour hotline, referral services, etc, and of course support groups for caregivers. Anyway, at this week's support group we talked a lot about caregiving in the Covid environment. Covid has greatly exaggerated daily life with dementia. Quite a few people said they have very limited contact with anyone beyond their family member with dementia. They rarely leave the house out of fear of contracting Covid, they get little support from family members because of Covid concerns, and as a result the vast majority of their connection with other people is limited to a demented person. I realize I'm so fortunate that we have Easter Seals and that because I work I see other people and am occupied with things beyond dementia. Still, I feel the heavy impact of Covid on the dementia part of our lives. I often feel very constricted by it, especially because I'm a social person and like to be with other people under any circumstances. I try to draw a line that is balanced with being safe and yet not going insane myself. I realize everyone draws boundaries that they believe are appropriate and wise. It's simply more complicated with dementia. So as Covid stretches on, all I can do is try to focus on the positive things in life, and know that this mess will end - hopefully sooner rather than later. After talking it over with some friends and family members, I've decided to get the Covid vaccine as soon as possible. I found out I'm elegible through work, and I'm trying to get a note from John's doctor to see if he can get one now as well (he's 2 years too young in the current guidelines). I've registered with Othena (the site where appointments are made) but still haven't been able to schedule a vaccine appointment because the demand is high. And the web site sucks! Meanwhile, while showering this morning, John was very upset because he got some soap in his eyes. He was really angry so he turned off the water and kept rubbing his eyes with his soapy hands. I was trying to help and he yelled at me to get away from him. He was very mad when I turned the water back on, but finally calmed down after he rinsed off. During the time he was so angry, he was more confused than normal. He was talking about getting in the car and driving himself home. It's weird the way confusion is heightened when he's angry.

January 10, 2021

I was asked by Easter Seals to write some information about John and our experience at Easter Seals. Initially I didn't know that they plan to use the information for grant writing. I wrote the couple paragraphs (Part 1), and then they gave me a list of questions to answer. For Part 2 I added a few more paragraphs answering their questions. I thought I might as well include it all here in this blog. The write-up doesn't flow that well, but Easter Seals is going to change the format anyway. Frankly, it was more difficult to write than I anticipated. Having to think through all we have experienced was difficult. Typically I ignore all that pretty well. The most painful part is the losses our kids face, and the impact the journey has on them. Obviously the future is guaranteed to get progressively harder. Alzheimer's Disease varies pretty widely from person to person, but one solid guarantee is that it only gets worse. Even now I sometimes wish the disease would progress more rapidly because the slow march to the inevitable grave brings limited moments of joy. We have no way of knowing how much time he has left. I tend to guess about 5 years. But what if it's 10 years? That's a slow and hideous decade. I know from my experience with my mom that languishing is not a gift of time. Enough negativity! The bottom line is we have to choose joy every day. And so we do. Here is the info I provided to Easter Seals: Part 1: Easter Seals consistently exceeds my expectations. My husband John has young onset Alzheimer’s Disease and has been participating in the Senior program in Brea for a year. I so appreciate all they've done for him. They've given him purpose again. Before he started at Easter Seals, John was bored and I was increasingly concerned about leaving him home alone while I was at work. I was very nervous about his first day at Easter Seals. I worried he wouldn't like it and would resist going. But John enjoyed himself from the very first day and has always been happy to participate. John believes Easter Seals is his job and going there each day gives his life purpose and meaning. He really misses the program on weekends! Everyone that works at Easter Seals in Brea is fantastic. They are all enthusiastic and create a positive and supportive environment for the participants. They each go above and beyond on a daily basis. Whenever I've had an issue with scheduling, they've immediately offered creative solutions. Each time I mention a problem I'm having, they jump to assist. I really can't imagine how John and I would be navigating the Covid pandemic without Easter Seals. Actually, I can't imagine how I'd be navigating John's care needs without our extended family at Easter Seals. Discovering Easter Seals and the assistance they have provided has been a true miracle in our lives. I could not be more grateful for all they do. Edna and Kelly are amazing people and we'd be lost without them. Part 2: For most of John's career he was a Worker's Compensation Defense Attorney for the State Compensation Insurance Fund. Basically that means he handled Worker's Comp claims filed against California's insurance company. He was a highly respected attorney in his field and rose rapidly through the ranks. At the end of his time at State Fund he was a Managing Attorney, supervising a department of attorneys. About 10 years ago he started saying things like "I don't remember the law like I used to" and he answered more and more questions with "I don't know". He always had an impeccable memory so it was odd. Still, he was smarter than the rest of us so he was able to continue working. But he became more dependent on his coworkers and his judgment seemed to be off. He met with doctors and the initial assumption was that his memory issues were caused by depression. The plan was to address the depression issues believing that would resolve the memory problems. That didn't work. He had to retire from State Fund far earlier than we anticipated, which significantly impacted our income as well as our financial plans for retirement. John worked for a friend for a while doing very basic legal work. I remember him saying he had trouble recognizing his clients at the Worker's Compensation Board so he would scan the room until they saw him and flagged him down. I believe his friend kept John employed longer than he should have. John often got lost when driving, or couldn't find his car in parking lots. He would call me at work and I'd track him with his phone and help him get driving in the right direction. Then there were small dents here and there in the car. We limited his driving as much as we could, until we finally forced him to stop driving a few years ago. He still complains about that often, knowing his independence was pretty much shattered at that point. John spent a couple years at home trying to keep himself busy. He was bored and didn't feel that he contributed to society in any way. Then about a year ago I was home from work for a few weeks and realized that he would be unable to handle any kind of emergency or stressful situation that might happen when he was home alone. That could include a kitchen fire, or just locking himself out of the house. It was clearly time for some type of daycare while I'm at work. I learned about Easter Seals from an Alzheimer’s Support Group that I attend. A man mentioned that Easter Seals supported his ruse that his wife was a volunteer and that it worked beautifully. So I grabbed on to that idea and requested the same for John. So John started going to Easter Seals believing he was a volunteer. It worked perfectly and still does today, except now he believes he works at Easter Seals rather than volunteers! Easter Seals gives John a way to continue to contribute to society. He's involved with people he enjoys, he's active, and he's engaged with other people every day. He likes the exercise classes, trivia and memory games, and talking with everyone. He's made deep friendships and speaks highly of everyone and everything there. John was officially diagnosed with Early Onset (diagnosis before age 65) Alzheimer's Disease 3 1/2 years ago. He was 59. Now he's 63. He should have been diagnosed a few years earlier but doctors assumed every other alternative first because of his age. The uniqueness of the Early Onset version of the disease is that it attacks it's victims while they're still in the prime of their careers, and so are their caregivers. John's career was cut short by at least 10 years. Financial assistance is only available if you qualify for MediCal. We don't. We planned to be in a better financial position for retirement, but fortunately he does qualify for Disability benefits. John also had long term care insurance through his employer, but since he had to stop working prior to his diagnosis, those benefits were gone. We have 4 kids, who are now 38, 34, 24 and 21. This disease has impacted all of us, but it has reversed the kids' relationships with their dad at an early age. They look out for him, not the other way around. Because John was impacted by Alzheimer's when our younger kids were still kids, they have limited memories of their dad when he was himself. They don't know him as the smart, opinionated, funny and interesting man that he used to be. The current version of himself is the one they'll really remember, and that's heartbreaking. I work at a school for children with severe disabilities, both medically and behaviorally. I think that makes it a little easier for me to step into the caregiving roll with my husband. At least I hope so. E