Son, Community Activist, Finance Professional, & Caregiver
Age: Mid 30s
Care Role: Caring with his dad and siblings; lives locally.
Age: Early 70s
Progression: Living in Memory Care. Diagnosed 8 years ago.
My mother was diagnosed eight years ago. She was in her mid 60s. Her mother died from dementia, not Alzheimer's specifically. She had watched her mother go through it and she feared it. My father is a geriatric psychiatrist. He had no idea. I think this is why doctors aren’t allowed to treat family members.
After my nephew was born, my parents and I came to help out. My sister in law gave us instructions for what we had to do. My mother was getting really frustrated and doubled back on things that we had just discussed. I told her I could handle it alone. Earlier that day, she had misplaced her glasses. We had all joked about the missing glasses. When we found them, she put them in her purse. Twenty minutes later she said she couldn't find her glasses. We all laughed thinking it was a joke. But she didn't remember that she had just lost her glasses and we had put them in her purse.
I think the glasses are an example of the ways that the patient and the family unconsciously cover. The previous Thanksgiving and Christmas, I had recorded the family telling stories. It took me several years to go through the videos. When I listened to them, I heard how much we were covering for my mom. We were finishing her sentences. Or she’d said “Why don’t you tell that story, you tell it better.”
I talked to my dad the day after the eye glasses and the attempted babysitting incidents. I told him that I thought she was having memory problems. The next month she went in for a four hour neuropsychology evaluation. She got an Alzheimer’s diagnosis a month after that.
Getting a Diagnosis
She’s not from the US. She grew up in a very buttoned up culture. She was taught to soldier on. She was in denial over the diagnosis. So was my dad. When we voiced challenges we had noticed, my dad would say “I don't want you to pathologize your mother. “
She went kicking and screaming Luckily, she was about to retire. So she was able to tie that up in a bow.
At that time, we decided as a family to all move to be together. We decided to spend this chapter of our lives together. So within six months of diagnosis my parents and my sister and I moved out here -- near my brother.
There was a point, once we were all living near one another where the three kids said we have to talk about what this all means for the family, we want to prepare. They felt very ganged up on. They felt we were talking about them behind their backs. It's hard for parents to give up the role of being the one who takes care of their kids. And, for physicians to be the one that's being taken care of. We suggested that they both go to therapy. My dad looked at us with shock -- and he’s someone who believes deeply in mental health.
So a lot of denial. Then, when things become unsustainable they would retroactively take action. They couldn't be forward looking.
My parents didn't want to tell anybody. They thought it was shameful. They didn’t want pity. I’m a little glib but my parents are afraid of being vulnerable. I believe being vulnerable makes you stronger. They didn't want to tell anyone, even my mother's sister.
Eventually, it became unsustainable for them to not share. They couldn't keep up the charade. After a year or so, they started to tell people. They found none of the negatives they assumed might happen happen. And, it got easier to talk about
If they had told people, they might have de-stigmatized it in their own mind. My mother and father could have begun processing the diagnosis, a terminal diagnosis. Maybe she could have had conversations with her sister or her friend. Her best friend got Alzheimer’s and maybe they could have talked about it.
Once I started being more open, people came out of the woodwork.
It was a slow progression for a while. We found her an art teacher to serve as a companion. She would come over and do activities with her and drive her to see friends. The art teacher was an acquaintance. She was fairly compliant with getting a companion.
Then, she started to get really needy and she needed my dad at all times. We gave her a doll, which she enjoyed. When a caregiver came over, my mother would ignore the caregiver and just try to interact with my dad. He was at the end of the rope, he was seven years in and completely depleted. We tried other things. We rented a studio apartment a few blocks away so she could go there with the caregiver. Then we started to have real problems. She’d smear feces on the wall. She started to need help going to the bathroom.
My mother drove for a solid two years after diagnosis. After one of the neuropsychology evaluations -- we did one every six months in the beginning, the doctor told her that her executive function had declined and she could no longer drive. She got very upset, aggravated to the point that they gave her an Ativan. But then when she agreed to it. She was still able to remember big things so she knew she could no longer drive. She had already gotten a little scared of driving. But this was a major signpost that it's bad and it's going to get worse. She understood the logic and that was hurtful.
We discovered that Apple Watch is a way to track my mom. We looked at other options -- but so much of the market was designed for kids. It was clunky looking and not something my mom was going to wear. She’s not going to keep her phone on her. We tried to use the Tile before realizing it doesn't have a cellular connection and can’t provide real time tracking. Because of the tracking we were probably able to keep my mom in my dad’s house longer. She got out like ten times and in some cases was a mile away before we were able track her with the Apple Watch. It's great that we were able to track her but maybe there would have been more of the canary in the coal mine if we didn't have the ability to track her.
She went into Memory Care about a year ago. We were seven years since her diagnosis and likely Stage 5 or 6. . The memory care is extremely expensive. Makes a college education look affordable. It was a hard decision but the right one. We worked with a Geriatric Care Manager, who served as a disinterested third party and helped mediate conversations among the family and with the facilities. She asked many of the tough questions none of us had the emotional strength to ask.
She had been really combative for six months before. We started looking at homes but found that none of the Memory Care facilities would take someone who is disruptive or needed constant one-to-one attention. Fortunately, it was a phase and she returned to her kind self. I think sometimes people think of Memory Care or Nursing Homes as a silver bullet when you are at the end of your rope, but it may not be available to you for the very reasons you are at the end of your rope.
She went into Memory Care in November. At the end of December something changed and she was really freaking out. We thought maybe a UTI or impacted fecal matter. But that wasn't it. She became disruptive and violent. She’d go into other people’s rooms. She was sent to the ER three times in three days. It was a really bad time. We changed her antipsychotic medications and fortunately she got to a point where she could be in the Memory Care unit as long as someone was there with her at all times. So that’s where we are.
We are almost ten months into COVID. My dad has seen her in person once, outside of the facility. Besides that they’ve been locked down.
I found Alzheimers will show who the person is deep down. If somebody is a mean drunk, they are a mean person but able to cover when sober. Once you take the inhibitions away, see what they really are. We've been so lucky and blessed, when you take all the layers away, my mom is a very sweet and amiable person. It could go a lot of different ways.
My dad has grown incredibly. He was never the caregiver or the comforter in our family. He was focused on enforcing rules. I think initially he thought you could enforce rules, like you do when disciplining children, and my mother would mold to the rules. He’s realized you can’t do that for Alzheimer’s. You can’t get angry at someone when they do something wrong, it's not going to change their behavior in the future and it's going to stress them out. Slowly he has grown at having that understanding. If she says something wrong, there's no reason to correct her. She won’t learn this and retain it. Distract, deflect, try something else.
For my parents a lot of times we had to repeat ideas many times until they came around to them. We couldn't deal with our parents how we would deal with co-workers. You know, when you present a recommendation on a project and give supporting evidence. We needed to get my parents acclimated to new ideas. When we proposed that my dad go to therapy, we learned that if you just treat him like a coworker and say “here’s my idea” he is going to get defensive. Frankly, managing the non-Alzheimer's parent is the one I spend more time on.
I wish we had come to terms with things earlier and used this as a teachable moment for processing emotion. My sister disagrees with me on this. She says “that wasn't mom.” I am trying to be the sort of person who can react that way in my own life but that’s not the way she processed emotions. Its unrealistic to expect that at this moment, when she is declining, she’d learn something like this.
She was a published writer, an academic. I’m sad she didn't write letters to her kids or grandkids. She didn’t do anything for preservation. I wish she’d written down some things for us what she has learned in her life. There were a couple of years after diagnosis when she was in pretty good shape. She was really smart.
You mourn while the person she is still alive. You're mourning her but you constantly need to care for someone who looks exactly like her. When she is angry or sad or scared, it tears at your heartstrings. It makes it really hard to process. I feel like a lot of my memories now are my mom in this state, they are crowding out the memories of her in her prime.
The big lesson is recognizing and coming to terms with the fact that you're not caring for that person, you are caring for their body. When that body does something to hurt you, whether saying something or even physically becoming violent, it's not your mom. It's not your mom. Her body may be around for a while and I will treat it with reverence and make her feel safe and comfortable and happy. But its not the same person I knew before. And you can’t feel hurt by the person doing irrational things. I believe dissociating in these circumstances can be healthy. Then when my mom forgets who I am or forgets who my dad is, it's easier to just continue the conversation and accept that I’m a friend stranger.
You have to protect yourself if you are going to keep your loved one safe and healthy. If somebody is violent, you need help. If you are at the end of your rope, you need support from your community and friends. You have to watch out for your sanity and your health because you can’t sacrifice yourself for the person you are caring for. You won’t even be a good caregiver then.
I don't know the appropriate way to say this. I'm never gonna let this happen to me. I don't want to be like that and I don’t want to be a burden. My mother is so vulnerable and so scared and confused by the world. The simplest ideas, just walking outside, shake her with fear. She doesn't know where she is. I’m going to take care of my mom and keep her safe and happy. Its my responsibility and I’m happy to do it. This isn't a complaint about my mom but a reflection of what I want for me. It's much more more brutal than anybody can really imagine,