Dad, Son, Tech Professional & Caregiver
Age: Early 40s
Care Role: Caring with his dad and sister; lives locally.
Age: Mid 70s
Progression: Living at home with husband. Diagnosed 5 years ago. Plays tennis.
I have a close relationship with my parents. I live five minutes from my parents but seven or eight years ago, I lived twenty minutes from them. I’d see them once a week. I noticed my mom was repeating the same ideas, repeating the exact same sentences.
It was being triggered by alcohol. It was like coming out during drinking. My parents were social drinkers. I thought they were just drinking too much. They heard that concern and cut back on the drinking. Then I realized the repetition was seeping into more interactions. She couldn’t remember what had happened earlier in the same call or in the call that day before. My wife was thinking it was something bigger. But my sister and I didn't take it head-on for a year and a half. We were waiting to see how it played out. And, I’ve learned that while my wife’s family is extremely direct, my sister and I like to sequence things, process them, and figure out the right way to communicate.
We're not scientists. We're not informed on this. We haven't had a history of this in our family. We were kind of like, playing it out. None of us thought it was as significant as Alzheimer's. You can look back at a longer time horizon and then see signals.
Getting a Diagnosis
My wife had to push us and say “you guys need to talk about this.” We went to see her primary care physician. He was in his 70s and we were frustrated that he wasn't on top of things. The doctor made a recommendation to a neurologist in that same hospital system. They did tests.
I don't remember the test results. But the feeling I got from that conversation was like “you are at the beginning of some cognitive problems but let's play it out.” My sister and I said “no.” But we had to convince my dad. So we decided to look for another neurologist. Through friends, we got connected with a neurologist and she diagnosed my mom and we’ve been working with her for six years. She’s a researcher but she spends a portion of her time with patients. It took 12 months from the time we went to see her primary care doctor until we had a diagnosis.
There was a lot of waiting. And waiting for test results. We did behavioral tests. Tests like you do with a child “read this” . . . "now tell me what we read." We did blood tests.
She resisted the diagnosis and was hiding things. She was taking notes on the side during appointments so she could give herself hints on the tests. She wasn't totally in touch with her abilities.
The hardest part -- and I don't mean this with any judgment -- was my mother’s unwillingness to participate with us. So it had to become a dynamic where my dad, my sister, and I would need to do three way conference calls. My dad would have to hide those conversations from my mom. That was for five years. He’d go sit in the car. This is as recent as six months ago. She’d say “why are you talking about me? I don't understand what you're talking about.” It was just easier to try to work around her, rather than bring her along. So it was hard because she was unwilling to acknowledge and accept for reasons.
We brought an inner circle of family in before the full diagnosis. Then there was the harder question around her friends in the community. One interesting dynamic for us is she's extremely physically active. She's still playing tennis. She goes on a walk for an hour every day. By the facts of her life, you'd never think she’s someone with Alzheimer’s. But she would start to have fumbles in social environments. Then it was a question of “when do we bring in more people into that? They probably aren't seeing it if we were seeing it as a family.” But then how do we tell them and are we telling my mom that we are telling them? It took two years. The timeline was really set by my dad.
Legal and Financial Planning
My dad is an accountant. So he had generally done the planning. He was going through scenarios in his mind and planning. He didn't know all the pieces -- what's the cost of memory care? He knew that it was going to be a big chunk. So he started to build that into his own estate planning. I was informed but not involved in the power of attorney discussions. Those were difficult; she felt her rights were being taken away.
My dad and my sister, with a care adviser, created schedules for each week. It was self-reinforcing. She was staying so active and she was being social. She really wanted to continue to connect with people. She is constantly going to the schedule. Her OCD came out. She would said “It's Thursday.” She's thinking to herself 50 times throughout the day at one o'clock on Thursday I’m playing tennis. We also wrote it on a board in the house. She likes checking things off a list.
I do a video call with my parents every day. We built it into our bedtime and my son learned to read with them on video chat. She can still read. She needs my dad to help her with some words. But reading is a way my kids are hearing her voice. She doesn’t speak fluidly on her own. But she can speak to my kids through the reading. It's almost like a glimpse into my mom.
My mom has had a companion for four years. A woman, similar age who goes on walks with her, drives to the ocean, goes to the zoo. So she has a pal. Someone with positive energy. And it gives my dad a much-needed break. But now with COVID she comes only one a week and my dad needs more relief.
We wanted to keep my mom at home, so we got a full time caregiver starting around May or June. We have someone 40 hours a week, but it hasn't been a perfect fit. She’s not keeping my mom active or showing up with ideas. She doesn't have activities to do with her. We know that the physical activity - walks and tennis, the outdoors - works. She was doing puzzles for a really long period of time that was really good for her. We tried coloring. She didn't like it. She can’t draw in the lines.
But coinciding with COVID shelter in place, she took a decent decline in the months from March to September. I think it was the removal of activities that lead to less cognitive connections happening in her brain. She needs to be reminded of her family members now. She's not able to participate in conversations.
Driving was a really big one. We had started taking a lot of things away from her. She was like “the hell you're taking things away from me.” We blamed the neurologist for a lot of this. Post diagnosis, we didn't feel like she should be driving anymore. If she was approaching a freeway ramp she wouldn’t process fast enough whether she should go north or south. At the neurologist, they said after diagnosis you can’t drive. I don't know if this is true or not.
It was mostly a freedom restriction thing for her. She hasn't struggled with depression until recently. We took away driving five years ago. She remained extremely active. Her schedule was busy with a lot of people involved, keeping my mom extremely busy. Her friends did things with her . She has a very rosy disposition. Her line was ”I could have cancer and die. So this is better” It was a lifestyle change, but she it didn't age her.
Personal Care and Day-to-Day Stuff
My parents have been married for nearly fifty years. This threw their marriage upside down. My mom was the homemaker. My dad was useless. My mom wanted to feel helpful and useful. The hardest thing for her was to lose cooking. She gravitated towards doing the dishes, and cleaning. She likes to be purposeful. Not cooking anymore was hard.
About a year ago, we felt like we needed to start planning for a memory care facility. My dad's analytical needs meant he had to collect the information and organize it. We have an intimidating amount of criteria. We're not doing assisted living. We need to be at memory care. My mom is really active so we need a facility that can accommodate her active and young nature. We toured five places for her. I know that people wait way too long and they get screwed. So we put down deposits at the two places we like. We’ll see how it plays out. But we realize we were solving for the criteria of my mom a year ago -- but post COVID she’s in a different place.
I'm aware that I'm not tackling some of the emotional side of losing my mom. That's one piece I haven't really gone into. I'm practical and solving all these challenges. There's an emotional layer and it's gonna come out at some point. It's so ridiculous that I'm like, so on top of so many things in my life and I'm intentionally pushing this away.
Alzheimers is in the back of my mind. I've never really had a strong memory. I write notes. Is that my destiny or not?
My Dad is a CPA. When he was preparing peoples taxes, he worked with lawyers and he’d be an expert witness. He was used to working with a network of professionals. He believes people develop expertise and you should trust them. That’s why we have such a team we are working with. Secondly, he goes to sleep, way better every night feeling like he's done absolutely everything he can for my mom. She did so much of the lifting. He feels so proud when he gets third party validation of his caregiving. So, when we talk with our neurologists and she says "it's amazing that you guys have this system," he beams with pride.
I spend 80% of my time supporting my dad. 20% supporting my mom.
My sister and I coordinate and then bring ideas to my father, who is the decision maker in the process. We have a lot of “consultants.” An ecosystem. A therapist for my mom, a therapist for my dad, a geriatric advisor. We're fortunate to be able to kind of invest in this type of support. The neurologist. A caregiver advisor. A therapist for him. A therapist for her.
What we’ve mastered -- is the dynamic between me, my dad, and my sister. We’ve been a really strong team. We are generally on the same page. We're a tight knit family. We make decisions together. We are really involved.
I was a little bit further in my journey with my parents than others. My sister is two years older. We were both raising kids. Our kids are young. We had started taking more over for our parents. We had kind of already started supporting them.
We're so fortunate. We don’t have limitless financial resources, but we have enough money to make some decisions without struggling to figure out the money. And my sister and I work really well together. We're a functioning family. My parents are married. We have great relationships with each other. It's not all hunky dory but we are fortunate.
I wish we had started the journey earlier. I don't know whether we’d get different outcomes. Maybe we could have maintained her cognitive health longer.
It's challenging to work with your family. I wish my sister and I would overrule my dad more. We might think he’s making the wrong call but we have trouble with confrontation. Sometimes I am too confrontational and he is sensitive. Fortunately we've been able to make fairly quick repairs.