University Administrator, Mom, Home Cook, Entertainer & Caregiver
Caregiver
Age: Mid 40s
Care Role: Caring with her siblings; lives locally.
Loved One
Relationship: Mom
Age: Late 60s
Diagnosis: Alzheimer's
Progression: Diagnosed 3 years ago. Lived with son until moving into Memory Care.
My mom is quite young. There is a big difference between younger onset and older caregiving I call myself a caregiver, but I also just placed my mom in memory care. I can't just quit my job and take care of her.
She was diagnosed in her mid-60s. . We were begging my dad to take her to the doctor for at least 18 months, before he actually took her. Then he passed away. And we were left figuring everything out.
Early Signs
We started to notice subtle things. My mom would constantly write notes everywhere. She was always absent minded. But she managed the life of three busy kids, with sports and lots of activities. My dad worked weird shifts so my mom was on her own in the afternoons and evenings. Over time there were a lot of extra notes in the calendar.
My mom was helping me with the kids and she was picking them up from school and taking them to sports. My son started carpooling with a new kid. But my mom kept going back to the first kid. She couldn’t remember that there was a new kid. I thought, “this shouldn't be so confusing.”
Then she forgot my kids at school. We had talked the night before. But she had a normal reaction: she said “oh G-d, I love the children.”
So a year after she forgot my kids at school, she couldn’t get herself anywhere. I’d give her an address but she couldn’t follow directions or navigation. I said to my dad “you have to take her to the doctor.”
After my dad died, I took her to the doctor and I saw reports from the neuropsychologist from this time and it said “she should not be watching children on her own” but she was watching my kids for about four months after that point.
At that time, my dad said “Let me take over driving the kids” and he told my mom “I’ll give you the summer off.” I was shocked. I thought she’d be upset and say “what are you talking about? You never take care of kids.” But she was not. My dad told me later, he was really helping to remind her what had to be done every day.
With my siblings' kids, who are younger than mine, we noticed she wasn't as drawn to sitting on the floor and engaging with them. She became more withdrawn in social situations. We think it was to protect herself, so she didn’t have to work so hard to engage. And, I think she was having difficulty hearing. She loved the kids. But she’d withdraw. And she stopped helping in the kitchen, which was really out of character. But we made excuses for years.
Then when my Dad died a year ago, she wasn’t a devastated widow. She wasn’t someone losing her high school sweetheart. It didn't register.
Telling People
It's been three years since her official diagnosis, and really five years plus since we’ve been dealing with this. She could barely tell us when she was diagnosed. She was so devastated. We were devastated. We never had a conversation with her about that. Now she gets very upset. She doesn't know she has the diagnosis anymore and we don’t tell her. She'll say “my brain is so foggy. My brain doesn't work the way I think it needs to work.”
Legal and Finances
My dad passing away is one reason why we have money for her care. We sold their house. The money will run out in a couple of years. You don’t know how long they are going to live. You need to plan for their healthcare needs, their home needs. But it could be five years, it could be twenty. And a lot of things are not covered by Medicare and you may need several hundred thousand dollars to care for your mom.
My sister, brother and I were trying to budget, where my mom could go. We had to think about if she's had this for definitely three years before but we noticed symptoms five years ago, how long can she live like this.
The same month my mom was diagnosed my dad was diagnosed with cancer. He died two years later. But he couldn't face the legal planning. He didn’t think he’d die. He thought he had time. We would try to talk to my mom about legal and financial planning but she’d say “you know your dad handles that stuff.” As soon as my dad died, we took care of Power of Attorney, etc. It was so easy. And, we are so lucky we got it a week before the COVID shutdowns.
My dad went really quickly. He chose to be cremated and where he wanted to bury his ashes - it was amazing to have two fewer decisions.
Driving
My mom didn't learn how to drive till she was 35. She hated to drive. It was not that hard for us. We took away her keys and said “it's probably not a good idea if you drive” because she couldn't find her way home. And then if she wanted to go somewhere we’d say “let’s go to the store together.” At that point we connected her condition to the accident she got in. Fortunately, no one was hurt. But the car was damaged. It looked bad. And she acted strangely. Back in the day, my mother would have freaked out if she potentially hurt someone. But then she said “I didn’t run a red, I don’t know what you are talking about." This was about seven months before her diagnosis.
Out-of-Home Care
We are only three and a half weeks into Memory Care. She just moved. It's a nice place but I am still learning how to navigate it. My mom was complaining about foot pain. I am her POA, so the facility calls me and asks if they can give her Tylenol. I said “yes! You can give her Tylenol if she is complaining about pain or a headache. I assume you aren’t going to give her too much. It's ok to give her Tylenol without making sure you get a hold of me.” I talked to them the next day and I said “how’s the pain?” and they said “she was complaining about it more so we got an x-ray."
I said “wait. What are you talking about? Couldn’t you have given it a day before she gets an X-ray?” There is so much focus on nurse check ins but what she really needs is to make sure her phone is charged and she is changing her clothes.
One of the reasons why my brother couldn't handle her is because my mom is a pacer. My sister in law could barely work during the day because every 10 minutes she would get up from her computer and go see if my mom was okay. My sister in law had the kids homeschooling because of COVID and she thought “I need to take a leave of absence, I can’t handle this.” We made the decision on memory care because she needed activities. Maybe we could have extended it a bit longer at my place or my sister's.
Activities
In the beginning, she was herself all day. Luckily my mom was never a cook. Once or twice she put something in the microwave for 10 minutes and almost burned the house down. One neighbor sometimes took walks with her. Mom was a paper shuffler. She’d write things on paper like “A Beautiful Mind.” She's doing more now in the memory care facility. She does crafts, baking. I'm devastated I can't see her because of COVID. Just Facetime. But hopefully she will be vaccinated soon.
Caregiver Approach
Nothing is permanent. If this isn't working or money is an issue we could change things. or this or that. There are certain behaviors that are deal breakers. When people talk about how they woke up to literally poop smeared yeah all over bedroom walls, the bed saturated, that’s a deal breaker for me. I cannot deal with that. I would have to have help with that. How the hell do people do that? And they keep going. Every day.
I wish I would have had these conversations with my mom long before I saw any signs. Sometimes we default to “what would my mom have liked in her right mind?” In no way she would want us fighting. She wouldn't want us full of tension. This elder care attorney asked us if we were going to go down with the ship. Because he said if you are not, you have to think about what you can afford. And, when she runs out of money, what you will do. How will you apply for medicaid? It reminded us that we have to be on the same page with the approach to care.
Some of the best advice I got was “make memories while I can.” My mom might have a short term memory problem but she certainly feels love. She can smile. There's still a human being here. It is definitely not my mom, but it is someone who knows my love.
If you approach it with a good attitude, you can have a good day. I’m not talking about people with poo on the walls, you can’t really make a good day of that. But with a good attitude you can make memories now. And my kids have learned to redirect her. They just treat her like Nana. They don’t worry about saying the wrong thing.