March 30, 2021

Yesterday was John's appointment with the neurologist. There's nothing earth shattering in these appointments, but it's interesting. And difficult to see how he performs on the MMSE - the Mini Mental State Exam. It's a 30 point test that's used to measure cognitive impairment. They test him at each appointment, which are twice a year. His score always declines over time. This time John scored a 12. He was unable to answer questions about the day, date, month or even year we're in. He guessed the season is spring. He couldn't write a simple sentence. He couldn't copy a basic sketch of a couple shapes. He could spell 'world' forward, but not backward. Of the 30 points, 25 and up is considered normal. 20-24 is mild dementia. 13-20 suggests moderate dementia. Less than 12 is severe dementia. So he's borerline moderate to severe. That's not encouraging. I asked if his medications could be increased, hoping that could ease some of his frustrations. The Dr said they're at the highest recommended level. We talked about driving because John remains very frustrated about not being able to drive. The Dr was surprised they hadn't notified the DMV yet about his condition, so I assume they'll be doing that soon. The DMV will then revoke his license unless he passes a behind the wheel test. John insisted that he could pass it. So the Dr suggested he try some online written tests to see if he was ready for the behind the wheel test - trying to save me the unnecessary trip to the DMV. Since John has recently denied he has Alzheimers, the Dr explained that it's hard to know what you don't know, and encouraged John to welcome help when it's available, and to accept help from me and trust me with all these issues. John had a good attitude at the appointment but when we walked out of the building afterward he said "Well I guess I might as well be dead." Cheery I know. I try to encourage him to find joy. Our circumstances are what they are, we can only choose our response. Easy for me to say though - I'm not the one losing my mind.

March 21, 2021

John is becoming increasingly more frustrated and agitated. Recently he couldn't sleep because he was agitated for a couple hours, right after going to bed. He was concerned that someone could access his phone (which we've limited so there's not much that could be done with it.) He also said he was concerned he would lose all his money. Or that something bad would happen. He kept getting out of bed and stomping around the room. Finally, after a couple hours, he fell asleep. By then I was wired so I was awake even longer! He complains a lot about not having a car and not being able to drive. He says he's going to Costco to buy a car. He also wants to go to Costco to ask him about his computer. He thinks his computer isn't working (it is) and that a working computer is what keeps him from practicing law again. Last week he was griping about people saying he has Alzheimer's. Typically I can divert him from that conversation, but this time he was getting mad. So I confirmed that he has Alzheimer's. He wanted to know who said so - so I said it was a Dr., a neurologist. I told him he had an MRI that confirmed it. We talked about what the MRI showed, and I explained a little bit about the plaques that accumulate. He didn't believe that he has AD, so I pulled out the report and showed him. He thinks he's doing better so the diagnosis must be wrong. Then he starts talking about how he'll be dead soon. That's a fairly commom thing he says when he's frustrated. He sometimes says I'm killing him - that's usually in the morning when I'm trying to get him to rinse the shampoo out of his hair, or shave him. He's very sensitive to any kind of pain. The slightest bump and he yells "Ow! That hurts!" He worries a lot about germs. He thinks he needs to wash his hands after touching his shoe laces (I think he can't tie them tightly any more so they often become untied.) Or he thinks our kitchen counter might have germs on it, so he doesn't want his silverware to touch it. He's fascinated by the moon. He doesn't seem to care as much about stars, but he likes to go outside a number of times each evening to check out the moon. The key is to make sure I lock up after him because I'll think the house is locked up for the night and then he'll go outside and leave the door unlocked again. A few weeks ago we were driving by North Hills Church. Easter Seals is located in the back of the church. They often walk around the neighborhood during the day or walk in the sports park that is across the street. So he's familiar with the area. Anyway, one weekend day we drove past the church and John read the sign "North Hills Church". I commented that's where Easter Seals is located. He said "I didn't know that." It reminded me of my mom because she said that so often about things I'd assume she'd know. That happened a lot when she asked where my dad was. I'd say he's in Heaven. She'd say "I didn't know that" in a bland, matter of fact tone. John is spitting a lot in the mornings again. Drives me crazy! So gross. I think he may be losing some of his peripheral vision. I remember that happened with my mom. I've read that the brain is working so hard to focus on what is in front of them that it tunes out things on the periphery. These are all signs that his disease is progressing. He has an appointment with the Neurologist (who he sees every 6 months) in about a week. I'm going to ask if his medication should be increased. They always give him the MMSE test which is a 30 point test of simple questions. It'll be interesting to see how closely his score reflects what I'm observing.

March 14, 2021

I read an article recently and I thought I'd share some things that reasonated with me. The article is by Lee Woodruff. Her husband is the journalist who suffered a brain injury while in Iraq some years ago. The article is about caregivers coping with 'ambiguous loss'. Although her husband slowly heals, and mine slowly fades, she writes about things I can relate to. One thing she mentions is that she misses a good argument with her husband. I have thought that so many times. John and I used to argue about stuff all the time. I miss those exchanges. I miss the challenge in the discussions and working together to find compromises when needed. Or just agreeing to disagree. Those are things John can't do anymore. Regarding ambiguous loss - It's a loss short of death with a world of uncertainly. "There's no black and white in this kind of loss. I've joined a quiet group of people grieving in the shadows." "I craved that unarticulated connective tissue that binds a marriage. I loved the way we shifted responsibilities and strengths, the grooved patterns and institutional memory of a twosome." "We were largely intact but in innumerable, inchoate ways, trauma had rearranged us." (Yes, I had to google 'inchoate' to see what it means!) "Grief and gratitude can exist on the same plane." "I need to mourn the outlines of the old us, the parts that now fit together differently." "The trick is to learn how to live in challenging spaces, to hold fast when profound sorrow engulfs me, and to balance those with the reminders of what is good, possible and real." "We are different now. We are all shaped and sculpted by our responses to what life throws at us, the big events and the little cherry bombs." "Most days I'm simply happy to be here, more keenly aware of how precious this is."

March 2, 2021

I was asked to speak today at the Easter Seals of Southern California Board of Director's meeting (via zoom). They call it 'Mission Moments' and the purpose is to connect the CEO and the board members to what they do at Easter Seals. I was asked to share our story and explain how the services at Easter Seals make a difference for John and our family. Since I was previously asked to write about those same things, I modified that document and spoke about it. I've posted that stuff before, but I thought I'd include today's presentation here. (First John and I were introduced and the Director of Senior Services gave them an overview. Then it was my turn. John stayed for the first part of my presentation, but then they whisked him away since we were talking about him.) Here's what I said (and I only started to cry once, but it wasn't an ugly cry so my dignity is still intact!): John has Early Onset Alzheimer’s Disease. But before dementia stripped him of almost everything meaningful in his life, he was a Worker's Comp Defense Attorney for the State of California. He was a highly respected attorney in his field. Before his unexpected early retirement he managed a department of attorneys. The first hints that something was wrong began about 10 years ago. John started saying "I don't remember the law like I used to”. 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 for a while. But he became more dependent on his coworkers and his judgment seemed to be off. He had to retire far earlier than we anticipated, which significantly impacted our income as well as our financial plans for retirement. To say Early Onset Alzheimer’s is financially crippling is a massive understatement. Another sign that something was wrong was that John would often get 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. Or I’d drive to Costco to help him find his car in the parking lot. We finally forced him to stop driving. He still complains about that often, knowing his independence was pretty much shattered at that point. John was officially diagnosed with Early Onset Alzheimer's Disease, which means it is diagnosed before the age of 65. That was only 3 1/2 years ago when he was 59. He should have been diagnosed a few years earlier than he was, but doctors assume every other alternative first when the person is younger. The uniqueness of the Early Onset version of the disease is that it attacks its victims while they're still in the prime of their careers, as are their spouses and caregivers. After retiring 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. We realized that being home alone had become a safety issue when he started doing things like locking himself out of the house. 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. John started going to Easter Seals believing he was a volunteer. It worked perfectly and still does today. Not only does Easter Seals give John something stimulating to do, but it gives John a way to find meaning in his life, and to contribute to society. We have 4 kids, who are now young adults. This disease has impacted all of us, but it has reversed the kids' roles with their dad at an early age. They look out for him rather than the other way around. Our daughter Jordan is following her dad’s legal footsteps and is ½ way through law school. While he should be able to guide her, she’s had to take on a parenting role with him. Because John was impacted by Alzheimer's when our younger children 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 remember, and for me that's heartbreaking. John has been participating in the Senior program in Brea for a year. They've given him purpose again. John has enjoyed himself at Easter Seals from the very first day and has always been happy to participate. He even misses the program on weekends! Everyone that works at Easter Seals in Brea is fantastic. They go above and beyond on a daily basis. 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. Easter Seals consistently exceeds my expectations. I could not be more grateful. Thank you so much for all you do.