February 26, 2014
Life has twists and turns. That is what makes it exciting. Keeps us on our toes! Over the past six months, my life has changed. Not in the awful, how will I make it change but a change nevertheless. I guess if I really take a microscope, I would realize that the change has been slowly happening over the past two years. Initially, so slowly that it took me over a year to realize the change. Now SMACK right in the face, I see the difference very clearly. Six months ago, my mother was diagnosed with Frontal Temporal Dementia (FTD), early stage Alzheimer’s disease. The change in my mother, has affected her whole family.
I am a daughter, I am a mother. My change is that I have to become a mother to my own mother. Its is very difficult to have your role change. Its difficult for both of us. I have not become the “mother” to a 73 year old woman, but to 5 or 6 year old in the body of a 73 year old woman. My mother whom is my friend, my confident, is gone. There is no more chatting about family, neighbors or current events. If something exciting happens in my day, I can’t share it with her. We talk about the weather. We talk A LOT about the weather. There is no reminiscing about childhood memories, hers or mine.
My Mother wants dignity. She doesn’t want her child “recommending” what she should do. She’s the parent! It must be incredibly difficult to lose control. To slowly slip away from your old self. Here she is losing her freedom. Like a young child gated in a room to keep them safe, my mother’s mind is what confines her. As a caretaker, it is my job to keep her safe, to make sure the gates are “locked.” Finding a way of keeping my mother safe, while letting her feel competent is a tough balance. Her judgement has been greatly affected. She has walked far from home and gotten in the car with strangers. Its very scary to feel that your mother is in danger.
Sometimes it parallels raising a child, sometimes it does not. When my children were young sometimes there were trying days. Maybe I was tired, they were very energetic and there were a ton of things on my “to do” list. I would get through that day and the next would be better. Now I don’t count the days like a did with my children, I count the hours. With FTD, mood changes can be abrupt. One moment my mother will have a sing songy tone in her voice, the next she will be screaming and waving her fists. Then a little while after that she may start crying. This pattern can repeat itself several times a day. I may spend an hour explaining and comforting her on what bothers her, only for it to start all again as if it never happened before. For my mother often the trigger is that she is not allowed to drive. She can’t understand why this freedom is taken from her.
I’ve tried taping the doctor notes to the door saying she can’t drive. I have had friends take her to the store to get rid of the urge, her sons take her out, I take her out. None of these paths truly cure the urge. The urge to feel free, the urge to remain the parent. In her lucid moments, that are fewer and farther between I believe she knows that she shouldn’t drive. I also believe if she were to say she knows, she would admit that something is wrong. Admitting there is a problem is often the hardest step.
To see my mother struggle through this is heartbreaking. this place she is in is a tightrope between two worlds. In one world she is Mom, a quick encounter with her and you may not realize what suffers within. She will smile and wave at a baby in the grocery store bringing joy to them. The second world, she a jumble of emotions. Anger and tears come fast, words come slowly if at all. Its hard for her to explain her emotions if she doesn’t even understand. My mother has often asked me if she will get better. I smile as a sign of reassurance, but my heart chips away each time she asks. Sadly no medicine will make her better. It can keep her stable, but not make her better. Just as a ponder how sad that is, my mother drifts off into another emotion. On her own personal roller coaster, she doesn’t remember the question she asked and she has moved to a new twist and turn.