It has been a few months since I’ve written a new blog post and so much has happened in that time. Let’s play catch up, shall we?
Back in November, I realized that I was really struggling. It’s hard for me to admit that because I pride myself on being a strong person and being able to “handle it.” But, it became clear to me that I wasn’t handling much of anything and that I was just basically going through the motions. I realized that I was feeling sad, stressed, overwhelmed, and drained from helping take care of my mom for the last ten months. When my husband and I moved back home from Alabama at the end of January 2016, I told my dad that I would help out with my mom a few days a week, temporarily, with the goal in mind that we would hire professional in-home help to care for her. At the time, he agreed. I had been physically going over to my parents’ house two to three days a week, but in my mind, I was there 24/7. I never left. When I wasn’t at their house helping out, I was doing things for them and worrying about them constantly. I thought about them from the minute I opened my eyes in the morning to the minute I closed them at night. It was consuming my life.
As the holidays quickly approached, I began to feel even worse. I felt the stress and pressure of taking care of my mom, along with the stress and pressure of getting everything done for the holidays. It became more and more clear to me that my mom now required more help than what my dad and I were able to give her. Her condition was declining as her Alzheimer’s disease progressed. Not only was it becoming too difficult for me to take care of her, but it was becoming far too much for me emotionally. My mom was having much more trouble walking, standing up, and sitting down. She didn’t want to do anything except sit in her chair and “relax.” She also began to have drastic mood swings. She would become angry or upset out of nowhere, but she would be happy again five minutes later. Her confusion and disorientation was worsening. She needed a lot more assistance and guidance when using the bathroom and tended to make a mess when she wiped herself. She also began refusing to allow me to help her do anything and my dad was having trouble getting her to take her medication. Overall, I felt that she had become far worse and I felt that the situation was spiraling out of control and out of our hands.
Just before Christmas, I was on the verge of a total nervous breakdown. I was anxious and worried constantly. I was depressed. I was burnt out. I didn’t care about Christmas at all and I couldn’t wait to get it over with. I wanted to start the process of hiring in-home help as soon as the holidays were over. I knew that my sister and I had our work cut out for us. My dad had always been resistant to hiring help. He didn’t want a “stranger” coming into their house to take care of my mom. While I completely understood how he felt, it no longer mattered if this person was a stranger to my mom. On most days, I was a stranger to my mom. I would spend hours with her only for her to suddenly look up at me and say, “And who are you?” That probably sounds really fucking sad to most people, but the truth is that I had gotten used to it a long time ago. It didn’t bother me nearly as much as it bothered me to see my mom not getting the help that she so desperately needed. Up until this point, I thought that we had been managing her care pretty well. I always said that I wanted to find in-home care, but I also think that I had convinced myself that we were enough. We weren’t.
We all survived the holidays, which by some miracle weren’t nearly as bad as I had expected them to be. My sister, brother-in-law, husband and I began meeting and talking about hiring a professional aide for my mom. We knew that it was going to be difficult to convince my dad, so we wanted to make sure we had a plan before we all talked to him. I may get into the details of these meetings and conversations in a future blog post, but for now I’ll just skip ahead. In total, I believe we had four or five meetings, some with my dad and some without, over a two month period. My dad finally agreed, reluctantly at best, to hire an in-home health aide from Bayada. He agreed to a schedule of three days a week for four hours each day to start.
The aide started about three weeks ago and the transition has been rough, so far. The first week was brutal for me and I know it was even worse for my dad. I went over to my parents’ house the first two days that the aide came and I stayed the entire time she was there. As soon as I left, I would get text messages from my dad, saying how upset and angry my mom was with him. He texted me pretty much nonstop, asking for advice and saying that he didn’t know what to do. He would text me in the morning to tell me that my mom had woken him up in the middle of the night, yelling at him to take her home. She was refusing to take her medication, as well. I finally convinced my dad that from now on he would have to mix her medication with her food so that she didn’t know she was taking it. I know that this is all pretty common behavior for someone with Alzheimer’s, especially when experiencing a disruption to their routine and attempting to transition to a new one. But, it didn’t make it any easier. I felt helpless.
It took all I had not to drop what I was doing and go back over to my parents’ house to help out. At the same time, I knew that there really wasn’t much I could do to help anyway. And, I had realized something else about myself over the holidays. I realized that I needed to learn to let go. I had become completely and utterly consumed by parents’ lives and my mom’s illness. I had lost myself in taking care of them. Not only was I putting myself in their shoes and imagining how they felt, I was walking around in their shoes and feeling their emotions for them. I had become them and their problems and I had stopped living my own life. I had become a shell of a person. I put all of the responsibility of taking care of my parents on my two shoulders and I felt obligated to do everything for them. I knew that I needed to make a change. No matter how much I want to help take care of them, I can’t give up my whole life to do it.
So, that leads me to today. Three weeks in with the aide and I haven’t gone over to my parents’ house to help since the first week. I’ve seen my parents and visited with my mom, but I haven’t been there to take care of them. I know that this is the right thing for me to do in order to take care of myself, but even as I write this, I worry that people will think I’m being selfish. I tend to always put others’ needs before my own and I haven’t been taking good care of myself for a long time. You might not see it, but I feel it. On most days I wake up feeling sad and I don’t even know why. I have to force myself to try to be happy. What makes it even harder is that my husband is overly optimistic and annoyingly upbeat (wink wink, love you!). It makes me feel like there is really something wrong with me. I guess there is something wrong with me. I am empathetic to a fault. I have learned that there is such a thing as caring too much. It is possible to be overly involved in a situation. And, it is absolutely okay to take a major step back in order to take care of yourself. I have to tell myself this each and every time I look in the mirror because I do feel incredibly guilty for taking that major step back. But, I’m working on it. I know that I can’t fix everything and there are a lot of things in this life that I can’t control.
I realized just earlier today that the depression and sadness I’ve been feeling could also be grief. I’m grieving new losses of my mom since her condition has been declining in recent months. I also think I might be grieving the loss of being able to take care of her myself. The truth is that she needs more care than I am able to give her and that is a shitty thing to have to admit. I know that I will come to accept this, as I have accepted all of the other losses that have come along with this journey. So for right now, I’m allowing myself to feel the pain and sadness because I do believe that it has a purpose in my life. It will shape my future. I’m focusing on taking better care of myself. And mostly, I’m learning to let go.