Daughter, Mom, Entrepreneur & Caregiver
Care Role: Caring from afar with siblings and dad
Age: Early 60s
Diagnosis: Early Onset Alzheimer’s
Progression: In assisted living. Diagnosed 7 years ago.
My mother was young. She started experiencing memory gaps: gaps in conversation, searching for words. She was very articulate, erudite, witty. She was struggling to contribute to the conversation. She would read something and she could not remember the details. Little things.
She was probably 54 and she had been told that it was related to menopause.
She confided in me in our kitchen. She didn't think that's what it was. She was saying, “hey, if I’m going crazy, can you do some things for me?” And, I kind of dismissed it.
The moment that stands out was the day my little sister heard back from colleges. She was 18. She got into a lot of amazing schools but she did not get into her first choice, my mother’s alma mater. My mother found my sister crying in the bathroom and my sister shared the news and my mom comforted her. That night at dinner my dad said to my sister “Oh, so what are you thinking about school?” My sister shared that she had made her choice. My dad said, “well you still have not heard from your top choice.” My sister turned to my mother and asked “why didn’t you tell him?” And my mother responded “you didn't tell me.” It became a huge fight.
I realized, ok, something is very very wrong. I had been pushing my father to get her tested. And, basically, a few months later, that's when we got the diagnosis.
Getting a Diagnosis
By the time she had the diagnosis she accepted it. It happened in two stages. We got a test that confirmed that she had mild cognitive impairment that could lead to these different things, but then you have to go through a process. It's not like there's a blood test. And then eventually it was July of I think 2013 or 2012 when we found out it was Alzheimer's.
After the diagnosis, my parents went out-of-town for four or five days. My father sent out a blast email to my mom's siblings and his siblings and us and their close friends and said “this is the diagnosis .We will be away for a few days.” So there was an immediate push to get the news out. But then and I think we all dealt with it very differently. I would say that my sisters and I immediately recoiled. It was very intense. We were also young. I think I was 26 and my youngest sister was eighteen. We just didn't know how to deal with it.
Alzheimer's is a misunderstood disease. Anything that's cognitive and mental is. I was afraid that people would judge me, or would think differently of me. So I didn't tell many people.
And I felt very protective of my mother. Then, over time, it got just more difficult to hide. It became something that I immediately said. We were dedicated to keeping her social and to keeping her social life pretty unencumbered. I would bring friends home and say “this is what's going on and this is how we're dealing with it and if you're uncomfortable, you don't have to come to my house.” I took a very open approach. But I had to process it. And I went to therapy.
I had a lot of concerns at the time. I was in the beginning of my relationship with my now husband and I felt like I had to tell him right away. I had to be like this is what's going on, you can opt in or you can opt out. And I was very insecure about talking about it with my in-laws because I thought that they’d view me as damaged goods.
Financial and Legal Planning
It was probably a year, maybe two years before we got to that place. Then there was power of attorney, HIPAA, Health Advocate. That was very hard for her. It's one thing to give somebody power by attorney to act on your behalf when you are impaired, it's quite another to have that power of attorney triggered. At that point that it was triggered, that was pretty calamitous.
Our first line of defense was to keep her routine going as long as possible. She went to her exercise class. We shared it with her instructors. We coached her into sharing her limitations. My dad did a great job of doing that.
Eventually, my mother got a little afraid and her life kind of condensed. She just spent a lot of time watching procedurals. I can't even listen to NCIS or Law and Order or Bones. I hear that music… and I can't.
She had trouble with groups. We used to eat dinner out as a family. We did a lot of group socializing. Gradually, that went away. She could not follow conversations.
My dad had her pretty well programmed. She would go to choir at the Y.
Then she developed an inability to complete a project and would become obsessed with that project. She’d be driven to distraction and anxiety.
Driving really was not a big deal for her. My parents live in a big city. When they left the city, my dad did a lot of the driving. They only had one car. My grandmother lived three hours away and my mother drove to go see her. She kept doing the drive for far longer than she should have. One day, it was an awful incident where my mother got in the car and she got lost. It was pretty horrible.
The bigger issue. Frankly, it was not driving but walking in her neighborhood. You just walk out of your house. You walk everywhere. We all lived in fear. Basically everyone within a three to four block radius of my parents house knew who she was and knew that she was cognitively impaired. We were constantly afraid of her being taken advantage of.
We tracked her on her cell phone. But then she’d forget her cell phone, or she’d forget to charge it. We wished we could put a chip on her.
Personal Care and Day-to-Day Stuff
She wouldn’t put on deodorant. She struggled with personal care in the bathroom. We went through her closet and got rid of anything with a zipper or button.
At a certain point, my mother could not be left by herself. She could not walk up and down stairs. She was sleeping all the time. It took a huge toll on my father. She fell down the stairs because she lost her balance. There were a few things. She was doing yoga class at her gym and she was unable to follow instructions anymore. And the teacher did not want her in class anymore.
My father was struggling. It just became clear it was not just her health we had to worry about.
Being at home was not relaxing. You were completely constricted to the apartment and your life all of a sudden would be consolidated to the rhythms of hers. It was super hot in the apartment because her body could not regulate temperature.
That narrowing of her world probably happened about two years in. At first she was by herself during the day. It got to a point where we could not leave her by herself. A family friend had an au pair who the children had outgrown. My mother knew her fairly well and she came in as my mom’s companion. She still visits my mom at her assisted living.
They did a lot of beading and jewelry making together. Coloring books.
It was January of 2018, five years after this all started, when I started to think that we passed the point of no return. I was visiting my parents. It was like six o'clock in the morning, my mother came into my room and she called my name and said “there's a strange man in my bed.” She didn’t know who my father was. A couple of times that happened. And, for me, that was the beginning of realizing that we were not in a safe place.
He was the last person she struggled with. When she wasn't sure who he was. But it still took us seven months to get to the point where we were ready to make a decision. We were so determined to carry on. We still went to the mountains that summer. We rented a place. Getting her off the boat was painful. My father was really struggling. My husband said to me-- and I knew it, I just couldn’t say it -- “you are at this point.” So I started raising it with my sisters. My sisters were devastated. Then I started to say something to my father. My father did not want to hear it. Then in October he had an incident and a decision had to be made. That was that.
We looked at a number of places. We knew that we wanted her to stay close by. There were some options that were just so terrible. There are very few really good options. They cost an arm and a leg. But, we realized this was the decision and so we said “ok.” We ended up picking up one that is super close.
We were concerned because we heard that they reserve the right to kick you out in the first few months. We were worried that her adjustment would be really tough and they would kick her out. We heard there was a situation where you could have to move someone around three or four times. We were just really afraid of that.
We wanted to go somewhere relatively small. We wanted a place where there were certain activities and it sounds silly but she’d get her nails done or hair done and they can do stuff like that.
She's in a very caring environment. They treat her like a person. They care about her a lot. We had a really rough first eight weeks. They told us not to have contact with her for the first four weeks and just let her acclimate. It's just not the right choice for her. It caused a lot of distress. We had to change her medication. She acted out. We were all horrified. It was a relatively new place. They were just opening up and there were some gaps in care. We had to come in and tell them and fix it.
You learn to manage the different levels of communication. You bring chocolates for the nurses. And you make sure you know who’s in charge. There are caregivers and the nurse that is on call and the manager. So you escalate different issues. It's like anything else, you really manage it.
I have to give my father a lot of credit. He bore an extraordinary burden for us. We prompted him to make a lot of decisions. He was so involved in the day-to-day that he didn't necessarily see the decline in the beginning, whereas I would see it. But my mother was always big on therapy. So we got therapy early and found support groups.
Right now, with my mom, I focus on quality of life and comfort. I don’t necessarily worry about engagement. I worry is she comfortable? How do we eliminate her anxiety? When she falls now she doesn’t go to the emergency room. That causes so much distress. I really think about maximizing her quality of life. It's not about prolonging life. It's about minimizing discomfort.
I hate when people ask “how’s your mom?” Why do you ask me that question? It's only gonna get worse. It feels gossipy. And I still want to protect her. If you want to ask how's my mom today? Yeah. I could do that. Sometimes it's good and sometimes it's bad.
But I definitely want to talk about her. I want to talk about her with people who loved her, in the way that she wanted to be remembered.
You know, I think if it were “I think about your mom and I’m just wondering how you are doing.” That’s a beautiful question.
As a family, we did really well at acknowledging this was happening. We’ve tried hard to be kind to one another in the process and have a measure of openness and honesty in the process, measure being the key word.