The Hardest Decision a Caregiver Will Ever Make
I first realized my mom shouldn't be living alone when I visited her in Florida a few years ago. I arrived at her house and knocked on the door, but she didn't answer because she was asleep on the couch in the middle of the day. When she finally let me in, her speech was slurred and I could tell that she had overmedicated herself. There was barely any food in the refrigerator and a bowl of moldy pasta was in the microwave. While I was there, she repeatedly forgot about food in the microwave and couldn't remember if she had taken her medication. She would sometimes take several of the same pills in a day. It was the same with coffee-she'd pour herself a cup not realizing she'd just finished one, and then be hopped up on caffeine all day. Over the phone, she was able to convince me she was fine, but when I was with her, especially on that visit, I could tell she was not OK.
She was diagnosed with Alzheimer's disease in 2011, but her dementia was clearly getting worse before that. In the fall of 2012, my husband and I decided she needed to move in with us in New York. It seemed like the perfect solution since we had an upstairs apartment in our home so she could have her privacy but we could still keep an eye on her. She came to live with us in October of that year, but within months we realized we needed more support to keep her safe.
I wasn't able to watch my mom 24/7 and when she was alone she would get in her car and drive around the neighborhood. She was strong-willed, and when I told her she shouldn't be driving, she wouldn't take no for an answer. She would curse at me when I tried to take her keys. One day when I thought she was upstairs, I saw her sitting in her car about to back out of the driveway. In times like these, I learned to distract her instead of offering explanations of why she couldn't do something. For her, chocolate, dancing, and animals would always work wonders. So this time, I ran out with chocolate and told her we could go out later but look what I had for her!
"There was a learning curve with all this. Realizing that doing right by my mom meant safety above all else changed everything."
When things got really bad, my first instinct was to hire a live-in aide, but I couldn't afford 24-hour care since my mom didn't have long-term health insurance and didn't qualify for Medicaid. My only option was to hire private aides referred by local agencies, but they typically work with seniors who are immobile. My mom always had a lot of energy and was used to daily mile-long walks and she wanted to go outside alone, so she would fight with them every day. The turning point came when I consulted an elder attorney and learned that even when my mom's funds ran out, Medicaid would never pay for 24-hour care at home like I had thought.
At that point, I knew I needed to consider moving her to an assisted living facility. Mom had enough savings to cover the cost, and a family acquaintance had a good experience when he moved his mother to a senior home in New Jersey. But other friends told us that they would never put their relatives in someone else's care. So if I was thinking of moving her out, did that mean I didn't love my mom as much as these people did? Or that I wasn't doing all I could to keep her home with me? But I had to separate my emotions from the situation. Mom was not safe or happy living with us.
In April 2013, I visited an assisted living facility in New Jersey, still unsure what I wanted to do. I was concerned they wouldn't accept her because she could be antagonistic at times. I just hoped my mom would be on her best behavior when she went for her interview. Luckily there was a dog there, and my mom loves dogs, so the staff got to see her sweet side. I was honest about her normal behavior, but they reassured me she would be OK. Mom answered their questions as best as she could. They let us stay for lunch and then they had live music afterwards-all of her favorite things! She loved it there and when they told her she could help take care of the dog, she was thrilled. I decided to give it a try.
The day before we moved her in, I spoke to my mom about it but I could tell she didn't really understand that she would be living there. She was quiet on the 45-minute drive over. My stomach was in knots the entire way but I kept pointing out the beautiful scenery and how wonderful it would be for her to live in such a charming place. I kept reminding Mom of the dog, the dancing, and the porch she could sit on. I kept everything positive even though a big part of me was worried it would not work out. My sister met us there and I think it helped her feel secure that both her daughters trusted this place, so she should too.
"Leaving her felt like the first time I dropped my sons off at Pre-K."
When it was time to leave, I felt worried that she might forget that she was supposed to stay there and try to wander off. But the staff had given her a bracelet that would set off an alarm if she walked out the door. Still, I was apprehensive that after all this time of watching her and keeping her safe I was just supposed to leave. My two sons are now 26 and 24, but I still remember what it felt like when I left them at Pre-K for the first time. It felt like I left my pocketbook somewhere and didn't know what to do. I was leaving my babies with strangers. Leaving my mom at the assisted living facility felt the same way. I still wasn't sure I did the right thing and on that ride home without my mom and second-guessing myself, I broke down. In one way, it was a relief that she would have the help she needs, but I felt so guilty that I needed other people to care for her. The facility has a rule that I'm not allowed to come back for a week so my mom can adjust to her new home and bond with them, but they did a good job in calling me every day. They would tell me that she was sleeping well, and dancing in group programs, and that they really enjoyed her.
The next week, I visited her and was relieved to see that she knew her way around the place very well. My mom and the dog were best friends, and she loved the dancing, and the staff. They also enjoyed her. She was active and very verbal, often telling them her tough-girl Brooklyn stories that they loved. But not everything was perfect. She would sometimes call my sister and me and demand we come get her. She spent about a year at the facility and I had come to realize these mood swings and paranoia were part of her disease. Her calls were more a result of the dementia than her actually hating where she was. So, instead of reacting and explaining why she needed care, I would tell her not to worry. She would express a huge relief that I was listening to her and reassuring her that things would be OK. There was a learning curve with all this. Realizing that doing right by my mom meant safety above all else changed everything. It meant separating my emotions and not getting my feelings hurt when she yelled or cursed at me or not feeling bad when she demanded to go home because she said she could live alone.
My friends were nothing but supportive. They understood why I did what I did-they knew Mom and how difficult things got. Some even asked what took me so long. Those that said they would never put their relatives in a facility didn't live it with me. I thank goodness for my husband because without him I couldn't have done this. It was a lot of work to have her come live with us and then move her into the facility, but he did everything to help her.
Over the next year, my mom's Alzheimer's got progressively worse-she started acting more belligerent and violent toward the staff members-and the assisted living facility could no longer give her the care she needed. In November 2014, I moved her to the Cobble Hill Health Center in Brooklyn, which is more equipped to handle her needs. I felt the same guilt and apprehension of having to leave her somewhere new all over again. But I met the doctors on staff there and felt better right away. Now my mom is 78 and happy. The staff and doctors understand her illness and they like her sassy personality. I am grateful to them for their expertise and for treating her (and me) like family. I'm happy to say I don't feel guilty anymore. I did the best that I could, I followed her wishes by finding a safe place for her every step of the way. I know that what's good for me is not always what's good for someone else, but I am at peace with my decisions even though they were rough ones to make.
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