Parental Caregiver

During the NJ Sandy hurricane in Oct 2012, I was in Hawaii with my parents. We missed the hurricane, damage, and blackout, although a portion of a tree did fall into my yard and fence, which I cleaned up upon our return.

I was already in part time caregiver mode back then. My parents enjoyed traveling throughout their lives, however it had been a while since their last vacation. Mom wanted to take what turned out to be their final big vacation. Dad did not want to go, but gave in. His dementia symptoms had already begun. Mom realized that the two of them could not go off on their own. So I was invited to join them. The trip was a balancing act for me. Knowing my role, I helped out my parents, and also took advantage of alone time when I could. I experienced my one and only helicopter ride, overlooking breathtaking scenery. That was fun.

Flash forward to Jan 2016. As I left my parents’ home one day, my Dad, who’s dementia had gotten worse, said to me at the front door, “Don’t leave me alone”.  I knew that it was time for him to get additional care. However, when I confronted my parents with the idea of getting a professional caregiver, they both adamantly said no. Looking back, I could have gone against their wishes and hired a professional immediately. After all, they spent a lot of money for long term care insurance. Instead, I chose to move in with them. For me, the timing was right. After fourteen years working at the same company, I was struggling in my most recent job. The combination of work stressors and part-time caregiver stressors were too much for me. So I left my job, fixed up and rented out my home, and moved in with Mom and Dad. As it turned out, my caregiver role was the most difficult job I have had. This is a challenging role for one person. Yet somehow I got through it, although my health did suffer. While I knew of the importance of “caring for the caregiver”, I simply could not figure out how to make it work.

The original plan was for me to take the night shift, and my mom take the day shift. We purchased a bed alarm. So every time Dad got out of bed, an alarm would go off in my room. I’d wake up, and help him out. But when it was time for me to go to sleep at the end of my shift, my Mom, who had her own challenges, would continually come into my room to discuss things on her mind. Needless to say, I did not get any sleep. So, I then insisted on Dad going to adult day center from 10am-2pm during the day with bus pickup, and getting a professional night time caregiver. The day center turned out to be a success. However, it took a while to find a quality night time caregiver. Once I got up to find my Dad wandering around the house while the caregiver was sleeping. Luckily, we ultimately found a great caregiver, who was extremely supportive, especially at the end of Dad’s hospice care.

Taking Dad and Mom to all their doctor appointments was a big learning experience for me, as I interacted with their doctors, listening, asking questions, and then following doctor protocols at home.

Subsequently, I cared for Mom, who had anxiety and mild dementia. I did my best to keep her involved in groups and activities that she enjoyed. However, it was a struggle to get her to participate. If I took her, she still enjoyed attending political and homeowner association board meetings, as well as dance class. For a while, she did not feel ready to attend the adult day center. But eventually, she gave in, attending a few days a week, and enjoying certain activities there. I eventually brought in caregivers to keep Mom company for two purposes. First to give Mom a connection with another female, and second, to give myself time off. However, it was a challenge to find someone that Mom felt a connection with. After trial and error, we found someone who worked out well, at least for a period of time.

Eventually, the caregiver role became too much for me. I was tired all the time, and had no life of my own. And my own difficulties with the situation caused challenges between myself and my caring brother, who lived far away. Ultimately, the day center social worker recommended we try an assisted living facility. Mom reluctantly agreed to try it out. It was not a good fit, as there was too much alone time, and she was getting lost. After a month, we got lucky. A local nursing home, with a great reputation in assisting individuals with varied levels of dementia, accepted Mom into the mild dementia wing. I was extremely pleased with the facility and the staff. I still visited almost every day, but I felt comfortable that she was well taken care of. Unfortunately, while Mom did not get Covid-19, the isolation rules in the nursing home took its toll. I was no longer allowed to visit, although we spoke on the phone periodically, and got to chat via a video call once a week.

And ultimately, during her final two weeks in a hospital, she was left alone most of the time due to the Covid-19 restrictions. I was finally allowed to visit her the last few days of her life.

Although very challenging, I am very happy to have spent all this time with my parents during their final years. I had many enjoyable moments during my stay. My parents and I had many bonding moments during this time, for which I am grateful.