Daughter, Local Government Professional, Caregiver
Caregiver
Age: Early 40s
Care Role: Primary caregiver. Moved cross country to live-in.
Loved One
Relationship: Mom
Age: Mid-70s
Diagnosis: Alzheimer’s
Progression: Living at home. Diagnosed 2 months ago, 2+ years after first signs.
Early Signs
My mom was diagnosed 2 months ago. Two years ago, my aunt started writing down changes she saw. I had noticed little things. At the store, she took forever to put her wallet away. She could not find her keys. But nothing made me think this was anything other than typical aging. Honestly, I was often annoyed. A year ago, my aunt showed me her notes and I said “well, that’s just mom… that’s just… that’s just.’ As the “that’s justs” started piling up, I started to see it.
We brought it up at Thanksgiving 2019.
Getting a Diagnosis
My mom said she felt like she was a little forgetful but it was her sleep. This is my biggest regret -- I regret that I wasn't insistent. She said “I’ll make an appointment. I’ll talk to my doctor.” I assumed that meant she’d talk to her doctor about memory issues. But she told him she was having sleeping problems and he prescribed trazadone. Then COVID hit. We assumed she was under doctor’s care for her memory - but she wasn’t. She was living alone and not seeing anyone.
In August, I realized she had no memory of our Thanksgiving conversation. She was not doing well. What she seemed to “remember” was me and my aunt “tricking” her. I pieced together that her long time doctor had retired and she had not gotten a new doctor. She wasn't being seen by a doctor and -- because of COVID - she wasn't seeing people. I jumped on a plane to her.
With the isolation of COVID she was barely eating. She used to go out to eat once a week with friends and then eat for a few nights off that meal. Now, with no socializing, she was barely eating.
I documented everything that was happening. When she slept, when she said things to me. I would record her on my phone. I showed up at the doctor with thirty pages of notes and some audio/video of her odd behavior - not remembering who I am, getting verbally violent.
At the neurologist, she didn’t know what day of the week it was or who the President was or who the last three presidents were. I was fortunate I was wearing a mask and she couldn't see my emotions. He scheduled her for an MRI. He started her on five milligrams of Aricept. She was diagnosed with Alzheimers.
Financial and Legal Planning
My mother is a freaking genius. I think she knew two years ago. In February 2019, she did her will and made me and her sister power of attorney. She set up a healthcare proxy and her living will. Let me tell you how easy it was to already have everything done with exactly what she wanted written down.
I was nervous about the financial aspect. But when I called her financial people, I was so surprised to see all her years of stinginess paid off. I can’t begrudge her that I never had a childhood vacation because now I don't have to worry about having the money to take care of her.
I feel like she knew that she raised me right. No matter our qualms with each other -- we haven't been the closest as I got older, I'm pigheaded and stubborn -- she knew that it's always been me and her and I will make the right decision. I will take care of her.
Paid Help
She was fighting me on having anyone come into the house. I’ve been messaging her nurse practitioner regularly and we had the doctor last week -- and he said “your daughter lives on the other side of the country, you are going to need to have someone come in the house so your daughter doesn't worry.” So she signed a piece of paper agreeing to have someone in. She was pretty quiet afterwards, embarrassed or withdrawn. But the paper is on the fridge now. My next step is to interview someone to come a few hours in the morning and evening to remind her to take her medicine and give her some companionship.
Caregiver Health
Right now, my biggest challenge is just coming to terms with what’s happening. It’s heartbreaking. She’s Wonder Woman. She did everything by herself for so long. I feel like I’m often the bad guy. I tell her my goal is to keep you safe, and healthy and happy. At the same time, I am trying to manage my own mental health. I am having trouble sleeping.
I purposely did not have children because I am not a patient person. But I think my capacity to do this comes from her. She doesn't realize that I have spent the last seven out of 10 weeks with her. I think somewhere deep down she knows that I'm here and that I'm not going anywhere.
I just got us matching medical bracelets for Christmas, like charm bracelets but with her address and my phone number. I set up cameras around the house.
Caregiver Approach
I was talking to a social worker and she said “there is a point where you lie. Where you do what you need to do.” She gave me the go ahead. She gave me permission. I felt like I needed somebody professional to give me permission to do what I knew was right. That was one of the most invaluable things. I'm smart enough to know what I like. When I started questioning her investment people I went to different investment people and had them look at her portfolio. When I didn't understand what her lawyer was saying, I hired a different lawyer. I went out of my way to find a diversity of opinions. And then cross reference them. For me, it's research, research, research.
My mom knows she has memory issues. But she keeps saying "you don't understand you don't understand. I have a learning disability." I’ve told her she has Alzheimer’s and she says “i don't believe that.” A few weeks ago she was doing her bills and she couldn't figure them out and she started crying saying “I don't know if I can do this anymore.” I picked her up and wrapped my arms around her and said you can stay in your house and we will find you help. We won't take anything away from you. She raised me alone and maintained a house and her finances all on her own. She shoveled snow, mowed the lawn, and invested her money by herself. She was Wonder Woman. Now she felt unsafe and not capable. I held her and I rocked her and I made sure that she felt safe. I wanted her to know I’m not going anywhere. We sat down and she wrote notes to herself that I was here in September and I was here in October. She wrote a note that she has Alzheimer’s -- but when she reads it she is shocked and upset every time she relearns it.
Sometimes I lose my patience. My mother made mistakes in her checkbook over the last few years. Now, she will re-realize it and come to ask me to help her and I don’t have the patience to hear it and explain it for the 30th time. She gets very quiet in those moments. We had one blowup where she said “well, if you know I have this disease why don't you just take care of things? Why even bother explaining things, just take care of things.” I took that as permission from her -- that she was ok with me taking control and she trusts I will do the right thing. That trust has given me freedom -- freedom to go to make the financial decisions, care decisions, etc that I need to make on her behalf.