Daughter, School Counselor, & Caregiver
Age: Mid 50s
Care Role: Primary caregiver. Lived with Loved One.
Age: Early 80s
Diagnosis: Dementia, not specified
Progression: Passed away at home 7 years after diagnosis.
My mom passed away Sunday. I took a step back from my career at the beginning of 2020 so I could care for her full-time. I’m very proud of what Momma and I did together.
Eight or nine years ago, we thought Momma’s hearing was getting worse. She would misunderstand almost everything I'd say. She got hearing aids and she lost one. She didn't want them. So we didn’t push it. She could never find anything in this house, like her remote. We were already living together. But she didn't need us earlier. She tried to do the laundry and would put bleach in it. She would ruin clothes with bleach.
She gradually got forgetful. I’d go to work and call her at like 10 o'clock when I figured she'd be up. I’d see how she was doing. I'd call her again around one o'clock, just to see if she had eaten. I'd look in the trash when I got home. She was eating peanut butter, cheese crackers. Coca Cola. She couldn’t fix anything. She didn't know how to operate the microwave.
Momma got sick and ended up in the hospital. While there, she had an MRI. They said she'd had a stroke a while ago. But I never saw any signs. My little Mamma would go to the casino nearby. She would go from 6pm till the sun come up at seven in the morning. She’d drive home and be fine. She was tough. After we got out of the hospital, I took her to a neurologist. They said “well there's some brain damage.” The doctor started her Aricept. We never got a clear diagnosis
For a couple of years there was slow the progression of her forgetfulness. They did a test at the doctor. I said “something's wrong with Mamma. She's just getting too forgetful. She can't do anything.” They asked her to draw a clock that showed three o'clock. He left the room. She said to me “you're gonna have to draw this clock.” When he came back, I told him I had drawn the clock. After that appointment, they put her on Aricept. After a few years, she was declining more so she put her on Rivastigmine patch. A little round band aid. You put it on your back. She tried to take it off but she couldn't reach it. She was on that for two or three years. Things started getting worse last year. She wasn't on any medicine all summer.
She was an ideal dementia patient. She was very agreeable. She kept a positive way about her. She was aware the Aricept was slowing down her problem. Her two cousins died of Alzheimer’s
Her main activity was going places with me and visiting. Coloring books, other activities, . No can do. She didn't want to do something for “dorks.” She loved makeup and fixing her face. So she’d spend time putting makeup on, even if later on she’d put lip pencil on her eyes and blue shadow on her cheeks and not notice something was off.
When I was at work, I’d picture her at home not eating. For a year, I called her twice a day to check in -- and lived with her. Three years ago, I tried so I could be with Mamma more. I took a job in real estate and I took her with me wherever I went. She would sit in the car while I went in for a showing or a closing.
She had a close group of girlfriends. They did a few trips together every year. They’d listen to music. The friends took her away last year for the weekend. They had to dress her, change her underwear etc. Afterwards they said “that might be the last overnight.”
Two years ago, so six years into the diagnosis, I could no longer leave her home because I knew she might leave the freezer door open or turn on the stove and burn herself. Then I started to have to be a full time caretaker. I’d do some work from the house and sometimes hire someone to watch her for an hour or two while I went out.
Then 2020 came. Damn that COVID.
She didn't know where she was. We’d be sitting at home and she’d said “if that waitress comes back here, have her bring me another beer please.” I gave her a Swiffer so she could dust when she roamed around in the evening. She said “I need to go feed the horse.” We hadn't had a horse in over 15 years. She was still appreciative. She said “thanks for giving me this little tool but it isn't very fun.”
I tried to be present. I think they get very lonely because they're confused. They don't remember the bad episode. I did a lot of music, singing silly songs. She loved that. The Saturday night one week before she died,
Yeah, plainly the Saturday the week before she died. We knew it was the end, so we asked friends to send notes. When the messages flooded in, I told her we were going to read the messages the next day. She said “well that’s something to look forward to.” She was appreciative.
She never cared about not driving because she had me so she could go everywhere she wanted to go. Every once in a while, she would say, I'd like to get my car and just go somewhere But she never tried it. She never tried to find her keys.
Personal Care and Day-to-Day Stuff
By March, she had forgotten who I was but was friendly when I introduced myself. She seemed happy to have a new friend. She still was focused on showering and looking pretty. She dressed nicely every day but words were getting harder and harder for her. I started looking for additional support.
In June, six month before she died we still went out and got our nails done. She’d go out in a wheelchair. She’d say nonsense, as fast as she could, to strangers. Here, wearing a mask may have been helpful; people didn't try to understand her. Afterwards she’d say how nice it was to talk to people. One day she said she had to go home and get ready for a funeral. I asked who died. She said I had. After that, she went downhill. She went downhill rapidly over the weekend. She lay down a lot. She never seemed comfortable. She’d get mad when I touched her arm or tried to guide her. Sometimes, when I needed a weekend off, she would go to a respite care overnight.
We live in a town with 10,000 people. We don't have an adult day care drop in center. That would have been a huge help. Every time the agency sent someone to come to the house to help, they sent a different person. So I’d have to show them around and get comfortable with different people in my house. It’s too many strangers. Sometimes things went missing.
In February, I had a packet sent to me from the nearby nursing house. I said “Shoot, I can't do this crap anymore.” I fell asleep one day and she ran out. She went halfway down the street. I can't do this anymore. I was getting the ball rolling setting her at the nursing facility. Then they shut down. I'm so happy I didn't put her in there - I wouldn’t have been able to see her.
Just a few weeks before she died, the simple act of eating had become difficult. It was hard to put on her clothes. She wandered around and ignored me. She refused to sit down to eat or get dressed. She no longer had the ability to understand and take part in her care. I used to put toothpaste on her toothbrush and she would brush. Now, she looked at the toothbrush as if she’d never seen one before. I put up a Christmas tree, something she used to love, and she didn't even acknowledge it. She was more interested in a piece of paper towel.
She was still chatty. She’d talk non-stop while I was on the phone with other people. One month before she died, she could no longer sit on the toilet or use a fork. She was quite helpless. But, she’d sing with me -- or her visitors. She didn't get the lyrics quite right but she would sing along.
I was pretty content being in the house with Mamma all year. She wasn't doing so well before COVID. There had been a level slope downward from 2012 to 2020. In the last year or so she was definitely in the last stage. She would choke while she ate. We had to pick up the fork for her the last month or two because she forgot how to use the fork. To get her drink, I had to put it up to her lips. It was rough. Then we both got COVID. Just before Thanksgiving. We think we got it from the home health aide. I had the home health aide for the last year and it was wonderful. They’d come twice a week. They’d give her a shower, fix her hair. So I could run to the grocery. In the beginning, I’d call a friend or relative to come sit with her. But the last year or two I’d pay someone to sit with her if I wanted to go out.
When Mamma got COVID she felt a bit sick but then felt better on Thanksgiving day. She sat and ate Thanksgiving dinner with us. She was not real talkative. I could tell she didn't feel good. That weekend she got sick again. That weekend she just quit me. We were home just the two of us. My brother and the hospice nurse arrived. My brother had been there maybe 5 minutes, holding her feet, when she stopped breathing.
She was talking till the near end. She’d say crazy crap but she was talking. She didn't know who she was in a mirror but she kept talking, maybe because I kept talking to her. Just a month before she died, we’d sing together. She was singing “She’ll Be Coming Round The Mountain” just a few weeks before she died.
You know, 80% of the time I was doing everything for her and nothing for me. I gained a lot of weight. Three days after she died, I got my haircut for the first time in a year - colored for the first time in seven years. I liked fixing her up better. I am glad I retired and took care of her.
My job I felt I was her entertainer. I tried to keep her light. Happy. We’d listen to the radio. She used to smoke but she forgot she was a smoker. The week before she got COVID, she said to me “Man, I sure could use some cigarettes.” So we went to a drive thru to get them.
I probably didn't do any of it really well. I would lose my patience with her. When she pooped in her pants, I’d go “Good God!” I would yell at her and regret it. She’d pick up a tea glass and turn it upside down. I know she didn’t mean it. She thought she was doing something else.
I do feel good about trying to entertain her. She called me Mama but I think our roles reversed. She’d say “Mama, are we going to go somewhere ?” Like a child.