Caring for a loved one who has a serious medical issue can be difficult, caring for a loved one who has a mental impairment such as dementia is devastating. Unless you have been in a caregiver’s shoes, you have no idea what goes on in their heart, mind and life of a full-time caregiver. I am speaking on this point of view series in a different spot now, being the daughter who had to make the difficult decision to move her mother into a long-term care facility. This opens up a whole new can of worms for me, a different form of sadness and grief. When I brought my mom into our home, I had already had four children and one of them was not even a year old yet. I had no idea the ride that I was about to embark upon, and I am blessed to have been the one that my mother trusted enough to care for her. Believe me, it was not always easy, and I was not always the best at it, but I have learned to give myself some.
This is from the daughter who was the full-time caregiver to her mother who has Frontal Temporal Degenerative dementia. This is in present tense form because it was a recycle from mid-internship last summer when my mother was still living with us.
Truth One: I hate doing this taking care of my mother while struggling through finding my own identity, being a mother of four young kids is difficult. I constantly wonder if I'm doing the right thing by everyone.
Truth Two: I have learned that honoring your parents does not mean that you should feel guilty if they have to go to a facility. In fact, I have learned that to honor my mother, I have to learn to make the best decisions as to what would be best for her, for myself, for my children. I'm still honoring her even if she's not in my direct care and I know a lot of people struggle with that notion, as I have heard first hand many times over.
Truth Three: Even with the best knowledge and the best tools on self-care, you can still find yourself struggling with depression and anxiety. I have even experienced a nervous breakdown, which resulted in me going to the emergency room. Now, this is not all based on just taking care of my mother, but this is based on a combination of trying to be the best mother or trying to be the best professional counseling intern that I could be. Biggest thing that I have learned is that I need to be honest.
Truth Four: Over and over again and in all the information that I read, I kept hearing that “your parent’s still in there somewhere”, your “mother's still in there somewhere”. Well, truth be told, they're not the same person. They're becoming the exact opposite and it's okay to acknowledge this. It's okay to be frustrated and angry for the things that you're losing or for things that you may ever have. This illness is taking over your parent and, in this case, it's my mother. Let's be serious about this dementia thing, it is no joke. I'm not talking about just Alzheimer's, I'm talking about what my mother has and that's Frontal Temporal Degenerative Dementia and it's no joke. They're definitely different animals, they're going to revert back to being a child to needing depends and having their food cut up. It's not fun, it's not great, I'm not being happy-go-lucky. I get angry with the thought of “oh my mother is still in there. She’s not the same person, no I can't have conversations with my mother, and it hurts terribly, awfully bad.
Truth Five: I have learned to finally say out loud that I am stressed, I'm angry, I'm confused, and I don't enjoy any of this. This is not what I want to be doing. I'm glad that our family is blessed to be able to take her in but finding the blessing through the pain is difficult. Honesty has truly become my best friend.
A dear friend of mine asked, “are you worried about your mother going into a nursing home because you're afraid that you're not going to visit her”? Choosing honesty, I said “yes”, and I say yes because as a wife, a student, as somebody who wants to work and as a busy mom of four, I am busy with various things for kids’ activities and I can't guarantee that I can get up to see my mother on a regular basis. To be honest, I don't really want to see her as she continues to decline. Now of course, I would go see her and of course, I would be the manager of her care. My MAIN point is being honest with yourself is going to help release the anger, the anxiety, the stress, and a little bit of the depression. It may not be a cure-all, but at least you will be honest with yourself.
To the child who cannot or is not able to visit their parent on a regular basis, I see and hear you. I do not judge you because I understand where you are coming from. It is not an easy task to go do especially when you are busy with a young family. My children do take my first priority, and I can also say that my health has been a cruel enemy and I am trying to find a way to get better and to be able to give more of myself to the life I already have. Just try to give people some grace when it comes to visiting a loved one in a nursing home or long-term care facility. DO NOT judge them and ask first, how are you doing? You have no idea what life is like for someone who has to see their parent pacing the halls of a nursing home, unable to talk, cannot acknowledge you and what you know is “my mommy is gone”.