Daughter, Mom, Small Business Owner, & Caregiver
Age: Early 60s
Care Role: Primary caregiver, moved her mother from out-of-state to live with her
Age: Early 80s
Progression: Lived with daughter until moving into Assisted Living. Diagnosed 3 years ago.
My mother has always been very responsible when it came to her finances. She lived in a different state. One week, I called her and her phone was disconnected. I asked my brother to check in on her but he wasn’t looking too carefully or couldn't come to terms with the idea she was sick. So I asked a female cousin and she said “something is not right." So, I convinced my mom to come down to stay with us.
Financial and Legal Planning
The first thing I thought about was "okay let's make sure we get her affairs in order." She couldn't remember how to write a check. She had written checks for decades. I got Power of Attorney but she was combative and a bit depressed. She had been independent her whole life and now it was being taken away from her.
I’m caring for my mom. But I don’t have the luxury to quit my job. It's full time and it's an hour commute each way. The nurses would come and be with her during the day. That was a difficult process. I asked questions, but I don’t think I vetted those caregivers thoroughly. I’d do it differently next time.
I brought some caregivers in during the day to keep an eye on her. She would leave the stove on. She put things in places that didn't make sense. She locked herself out. It was winter. It was cold. Fortunately, my neighbor knew my number and called me. So I drove the hour home from work so I could let her in and I thought “we can’t do this.” So I knew we needed someone with her.
I worked with an agency. You don't really know the nuances unless you experience it. I interviewed three or four agencies. The rates were pretty similar. But it's the little things that you don't know about. Like, if they stay over 15 minutes, then that's an additional cost. You know, sometimes, I wasn't home exactly at the top of the hour. She had a bit of pension and social security but it wasn't enough to cover the hours we needed.
We had a couple of nurses. The last one was excellent. But in terms of activity, a lot of them just sit there watching TV. You want people to get her to exercise, take her for walks, read with her. The last one kept a log of the day because I wanted to know that she was eating and what she did throughout the day. I put a camera in my house because people say they do things but I caught a number of the paid caregivers sleeping.
We looked at assisted living because we had to. At four in the morning one night she left the house and was going door to door knocking on doors. She said “my children are locked in the car! I need help!" The police were called and it was heartbreaking. We are lucky the police were kind-hearted. That prompted me to say “we can't afford around the clock care and I can’t stay up with her all night. We have to figure out something else.”
When the police officers showed up, he was talking to her kindly and he told me that his father had Alzheimer’s. I broke down at that point because, out of all the police officers, that one understood.
We worked with a woman who helps families find assisted living facilities. I worked with her for a few weeks. It educated me a lot and taught me what questions to ask. The main thing was the home had to be safe and feel like home. The true deciding factor boiled down to whether or not it fit in our budget. We could only afford a certain amount including my mother's social security, pension, and a state subsidy. The one home I really liked didn't accept the subsidy. But we found this place which is ten minutes away from my home. It's really convenient. I can just pop in. I have a good relationship with the director.
At assisted living, she has been sent to the hospital a few times. I’d find her in the hallway in the ER. They know that she has Alzheimer’s. I think from a medical healthcare perspective, there is some bias. One time, I couldn't pick her up. So the assisted living had transportation to bring her back. She was terrified. She was pleading “please come get me.” From that point on, I say if she needs to be picked up to go to the hospital or back to the home, it needs to be me or my husband.
It was difficult to convince her to go because she felt this was the end of her independence. But she connected with one of the caregivers at the home which was really helpful.