January 11, 2020

Where to start? My friend suggested I write a blog to keep family and friends informed on our battle with Alzheimer’s Disease. I think it might be cathartic for me, and it might also be a way to keep track of what happened when. Here goes...

So a little background. Both my mom and my husband John have Dementia. I think early signs appeared almost a decade ago, but we didn’t know it at the time. John has Early (or Young) Onset Alzheimer’s Disease, diagnosed at age 59 with an MRI and PT scan. (This technology was only available beginning in 2011.) Early Onset refers to any Alzheimer’s diagnosis before the age of 65. It’s fairly rare, but hits people when they’re still working so it carries some unique problems with it. I think John would have been diagnosed a few years earlier, but because of his age the doctors assume other causes to memory loss. As a result, his memory loss was already significant by the time he was diagnosed.

Because my mom has a pacemaker, she can’t have tests like the ones John had, so diagnosis is made the old fashioned way, based on symptoms. She probably has Alzheimer’s too, but it could be Vascular Dementia, or another type, or more than 1 type as that’s also common. I suspect she may have Vascular Dementia in addition to Alzheimer’s Disease because she’s had some strokes and TIAs. One stroke in particular impacted her ability to walk, as well as limited her peripheral vision.

For my mom, her dementia path has often been one of apathy. She just started to care less and less about things that were always important to her. She didn’t initially seem forgetful, she just seemed more apathetic. The first thing I remember was she lost her sense of smell, and therefore taste. She talked about not knowing if food was too salty, or not salty enough. An ENT Dr found nothing wrong. I wonder if he knew it could be an early sign of dementia. He must have known.

That’s the thing about Dementia - know one likes to talk about it.

Back to my mom. She always gave us classy Christmas decorations or ornaments for Christmas. I remember the last Christmas that she picked out gifts for us. We got these really cheesy animal ornaments. They did reflect who we are in that they coordinated with the types of dogs we have, or something close to it. But they were pretty crappy looking. Totally unlike her.

When we’d come to visit, she’d always prepare things that were our favorites - cherry crunch for my brother, lemon bars for John, stuff like that. I noticed that she did less and less of that. We’d visit for a week but the kitchen cabinets would be pretty empty and we’d need to shop then prepare meals for the week. Before returning home I’d try stuff the freezer with food my parents could heat up easily, trying to help my dad have food prepared for weeks after we’d left.

 I always called my mom each morning while I was driving to work. My parents lived in Grand Junction, CO, while I live in Brea, CA. At some point my dad started doing more and more of the talking, until eventually mom didn’t want to come to the phone at all. So I continued those daily calls with my dad until he died suddenly in early September 2018. I really miss the conversations we’d have. We were full of advice for each other and helped each other solve the dementia problems we were facing. We talked about my kids, my job, my friends, his friends, well, everything. Dad had been pretty healthy for an 83 year old man. His main problem was back pain. But I am convinced that taking care of my mom killed him. The burden of care giving is extreme, like a heavy weight that you are capable of carrying, but the task of carrying it month after month after month is brutal. He called me very early on a Monday morning in late August and said “I think we’ve reached the end of the road”. He meant he was no longer able to take care of my mom. He was having difficulty breathing and thought he needed some time to recover in a rehabilitation type hospital. He had to get care for my mom set up first, and toured a facility in a wheelchair. Interestingly, John and I had just visited 2 weeks early and I nagged him to visit the facility he had in mind. He was willing to drive by, but wasn’t willing to go inside. Now, just a matter of days later, he needed to tour the place and quickly make arrangements for mom to go there. Then Dad called his Dr who told him to call 911. He had congestive heart failure and while he was in the hospital he had 2 strokes.

Meanwhile my brother and I were each driving to CO. As I drove I spoke to dad on the phone and had more trouble understanding him than I had earlier. By the time I arrived my dad’s speech was pretty incoherent. It turns out there was hemorrhaging in dad’s brain, and he died a few days later. We were shocked and devastated that it happened so fast. We had a quick funeral, found important documents, packed up mom, and drove her back to CA with us. She’s been in Memory Care ever since. That’s how I became primarily responsible for my mom. She’s only 4.5 miles from my house, so it’s fairly easy to visit often. I try to get there at least 4 times per week. She loves sweets now, though she didn’t all that much before, so I make sure she always has plenty. I typically ruin her appetite and feed her junk food before dinner. She doesn’t like vegetables any more, so I tease her that she always made me eat my peas at dinner, so she has to eat hers!

Initially she shared a room with Lupe. Lupe was a perfect roommate. She had a gentle, happy spirit. She passed away a few months ago at 99. Their room was due for an upgrade so while that was done my mom was moved in with crazy Angie. That temporary arrangement became semi-permanent. I complained about it off and on, until a week or 2 ago a firmly stated that I was tired of the roommate situation and demanded that my mom be moved immediately. That’s finally happening this Monday. She’ll have her own room until a new roommate is found.

For quite a while mom talked a lot about sex, penises, and started using bad language. She also got aggressive with care givers, even hitting them on occasion. These are things she never did in life so it was weird and very uncomfortable. There’s nothing to do about that but laugh at it. I’ve subsequently learned that part of the brain remains very much in tact as other parts of the brain wither. Dementia is a very strange disease.

 John’s path with dementia has been typical with forgetfulness and general loss of comprehension. He was a Worker’s Compensation Insurance Defense attorney - so he depended on his brain for his job. He worked at SCIF for about 20 years, excelling at his job. He received many company awards, promotions, and accolades. He was a supervising attorney before retirement. I didn’t know it at the time, but he began to struggle at work. I first became aware of problems in 2011. With hindsight, I believe he became increasingly dependent on his assistant as confusion began to set in. I assume that was difficult for her because they always got along well, but she began to complain about him. At some point John’s coworker told him he should contact HR about creating a hostile workplace. If he didn’t, his coworker would do so. So John did, and HR put him on administrative leave. We were blindsided. HR interviewed an odd and incomplete group of employees about John, ignoring at least a few who really knew John well and could have provided a lot of insight. When John was interviewed he was obviously stressed and answered most questions with “I don’t remember.” Clearly, and with hindsight, that was Alzheimer’s. But HR thought he was being an ass. They changed the complaint from a hostile workplace to sexual harassment and fired John with no explanation. John spent a few years fighting SCIF to obtain copies of his records so he could understand exactly what he was accused of. Those records have apparently been “lost”, and John never understood what exactly happened. This situation hurt him deeply. He always prided himself on his honesty, high moral values, and his friendships at SCIF. He has never recovered from the blow. I think that job loss stole much of the limited joy he had left. For his family, however, it meant a forced retirement far earlier than planned. Our financial situation is much less than we anticipated and planned for in retirement. And now our costs are much higher than we ever thought they’d be, at a much younger age. That definitely keeps me awake a lot at night.

John worked for a few other legal offices over the next few years. As time passed it was increasingly harder for him to do his job. I know his work quality suffered. He’d get lost traveling to appearances, lose files, and forget who his clients were. One of his friends kept him employed I’m sure far longer that he probably should have. But once that had to end, John filed for state disability. That ran out a year later, so we filed for permanent disability. The loss of his identity as a lawyer still haunts him. His once stellar reputation and the respect that came with it is gone. He’s forgotten so much, but he still remembers the humiliation of his forced retirement, and the loss of friendship from his days at SCIF.

Last week we had a 5 hour appointment with UCI Mind to be screened for participation in a clinical trial that would track progression of his disease. The trail included people with mild Alzheimer’s Disease. After 3 hours we were informed that John’s MMSE score was 13/30, but needed to be 20/30 to participate in this trial. I was pretty frustrated with the news because I raised that specific concern at the very beginning of the process. During the screening though, we were both interviewed, separately, by a psychologist. It was sobering to discuss John’s limitations in so many areas. Many of the questions focused on the degree of which John could do things independently. The bottom line is there aren’t may things he can do independently. To confront all those situations at one time was like a kick in the gut for me.

 For instance, I’ve started shaving for John. I select his clothes for him. If I don’t, he’ll wear things that aren’t weather appropriate. I’ve started supervising his showers. If I don’t, he sometimes gets out of the shower a minute after he gets in. He doesn’t remember to wash his hair. He’s not sure which clothes are dirty and which ones he brought to the bathroom to wear after he’s done showering. So little by little I take over the things he could do independently a couple weeks before.

Fortunately I have a controlling personality so I assume taking over these kinds of tasks is easier for me than it might be for others.

I’ve been off work for 3 weeks due to the Christmas holiday. Maybe it’s because I’ve been home and with John constantly for 3 weeks. Maybe it’s because John has declined rapidly lately. Maybe it’s both. But I no longer feel comfortable leaving him home alone all day while I’m at work. It’s time for Adult Day Care. I’ve looked into lots of options over the past few months, but I’m going with Easter Seals because they’re close to our home and they’re not horribly expensive. He did a trial run for 3 hours a few days ago. So he’ll start Monday, initially for 3 days per week. Because of my work schedule that’s all that can work so far because the other 2 days I leave for work before Easter Seals opens. He thinks he’s volunteering there, and they’ll play along with that ruse. My hope is that he’ll like it there and that maybe our kids and drive him there when I’m not available. At this point he’s not likely to listen to them when he’s frustrated, so the burden is on me. He’ll listen to me more readily than others. I think he feels safe with me and therefore is a little less frustrated when I tell him what to do. I hope this week with Easter Seals goes better than I fear.

I’ve looked into many different types of services that people say are available to help families struggling with Dementia. So far every service comes at great expense. If you don’t qualify for MediCal, you don’t qualify to receive any financial assistance. I am frustrated that children and adults with disabilities can receive financial help, but nothing is available for Alzheimer’s victims. They lose abilities until they are very similar to adults with mental disabilities, but still nothing is available. As our population ages, more and more people are being diagnosed with Dementia. Medicare doesn’t cover the care associated with Dementia. The only option is Hospice. Once you are ready to accept only palliative care, patients can go on Hospice and receive a little bit of care - nurse checkups, medications, help showering, a hospital bed, diapers, and oxygen. Every bit helps and I’m thankful at least that is available to my mom. John is not ready yet for only palliative care.

I quit letting John drive about a year ago. He’d been in a few minor fender benders, and got lost more and more often. By the time I took away his keys, I merely hung them up on our key rack and he wasn’t even aware the keys were available to him. Then last fall his neurologist specifically stated that John should no longer drive. That was after an exam and a review of an MRI that was done 5 months earlier. The Dr also said he would have to notify the DMV. I don’t know if that ever happened though because we haven’t been contacted by the DMV. John believes he is perfectly capable of driving, but that certainly is not the case. He is still angered that he can’t drive and talks about it fairly often.

I believe that knowledge is power. Over the last few years I’ve attended classes, read books and articles, researched care options, participated in support groups, and looked into everything I can think of to prepare myself to deal with this disease. But fighting the disease is a double edged sword. We try promote brain health to maintain as much quality of life as we can. But any extension of life simply extends the suffering. And extended suffering also includes the bonus of more very expensive care. At this time, there is absolutely nothing available to slow the progression of this disease. Medications are available to treat symptoms, but they do nothing to prevent the inevitable, horrible decline.

About 2 years ago we anticipated taking part in a clinical trial for a medication. The trial required that participants not take the primary Alzheimer’s medication - Aricept. John went off Aricept, but the trial never materialized. Last fall his new neurologist prescribed Aricept again. After a few weeks on the medication, we saw a boost in John’s cognition. He newly understood his disease was fatal and he was obviously upset. He wanted to go to the gym again to get in better shape to fight the disease. So he started walking to the gym while I was at work, but unfortunately was never able to find his way there. He’d call me at work, and I’d use the app “Life 360” to locate him and help him find his way back home. I’d also been planning a trip to NYC for our niece's wedding. He was well aware that I was going, but he would stay at home. Suddenly, a week before the wedding, he thought he was going as well. He was furious with me when he realized I was leaving him home and ranted and raved at me about it for days. Even while I was on the plane traveling to NY, he was trying to call me, furious that I wasn’t answering while the plane was in the air. Because of all the agitation John was experiencing, I called his Dr and asked about taking John off Aricept again. The Dr agreed and after a week or two John returned to his usual self. He lost the boost in cognizance, but was far less agitated, and therefore was happier. And so was I.

I’m neurotic. I like everything in it’s place. And since my life with 2 dementia patients under my care is utterly insane, I need order. I try organize my stuff in an attempt to organize my life as it spins out of my control. So I put everything in it’s place. And John takes everything out. He says he wants to see what’s in the closet, so he takes a whole bunch of stuff out of the closet and spreads it around the room so he can see it. Then I lose my mind! I can’t stand the stuff spread all over the room! If John decides to change his clothes, he might unfold around 15 shirts and lay them out all over the bedroom. And empty his drawer of shorts. And leave clothes everywhere. Then I get to clean it all up. Again and again. And it drives me crazy! I try remind myself that I’ll miss these days, that I’ll miss the days when he was able to do these kinds of things. But it still drives me crazy.