You never expect that your mom. the woman who gave birth to you, will one day have to ask you where you were born.
Or that one day your roles will be reversed. Instead of her shuttling you back and forth to playdates, birthday parties, etc.., you would be driving her on errands, doctors appointments, etc..
What about how you thought dealing with child like attitudes ended when your own daughter grew out of “it”. Instead you now deal with those same, and sometimes worse, child like attitudes from your sixty-two year old mother.
When you watch your mom sometimes struggle to find the right words during a conversation.
What do you do when your mom tells you that she is afraid to be home alone? Or how about when your mom says everyone would just be better off if she killed herself?
What about when you are sitting in your mom’s doctors office and she tells you that there is a chance this is Familial Alzheimer’s disease; your maternal grandmother had it, your mom has it, and you and your daughter may have it; testing is difficult, but this would possibly explain the early on-set of the disease in your mom, and maybe for you.
This is my reality, this is my daughters reality, this is my brothers, and my fathers reality to. I suppose no one expected it, which is why we are all struggling in our own way to figure out how to deal with it, how to deal with her; kid gloves or no kid gloves.
Watching my dad struggle to find his own way to deal with my moms illness is sad, and frustrating at times. My dad is the type of person who has very little patience for certain attitudes, and behaviors. He obviously lacks that maternal care giver instinct, but he also expects common sense behavior from everyone, he doesn’t tolerate stupid behavior or pointless repeat conversations. All of which he is now forced to deal with from his wife, the woman he married forty-two years ago. He has now become the husband who is slowly losing the woman he married because she is slowly loosing her mind. It is inevitable that at some point, she won’t remember who he is. She won’t remember their wedding day, or the day they welcomed their first-born (me) into this world, or even their second born, or any of the other events they experienced together. What happens when he is forced to put her in a full-time care facility because her illness is beyond him, beyond my brother and I.
While my dad is experiencing his own heartache over my moms illness, my brother is doing what he always does; avoids and deflects. Don’t get me wrong, out of all of us, my brother has the most sympathy; minus the understanding, for what my mom is going through. He takes her to lunch a few times a month, watches her ridiculous reruns with her, but when push comes to shove and things start getting dicey, he avoids and placate’s. Does anyone really know how to deal with a parent who has early onset Alzheimer’s, especially if that person lacks empathy? My brother is many things, empathetic is not one of them. Again, don’t get me wrong, my brother is a good person, an awesome uncle, an infuriating but great brother, however I sometimes question whether, when shit gets really real, will he be able to hang tough and provide the proper support for my mom. Will he be able to control his own emotions, be rational and mature? I suppose only time will tell.
As a teenager preparing for college, and life as a growing individual, my daughter tends to do what teenagers do; avoid and redirect themselves. T has no problem hanging out with her Grammy, watching tv and just being there physically, however being mentally present is the missing element. Although my mom probably doesn’t even notice because she, like T, is absorbed in her phone playing games while the tv provides ambient background noise. In this way, they are more alike than they ever could have been before, and when things get tense, T removes herself from the situation, not because she wants to avoid the moment, but because she hasn’t figured out a way to internalize her feelings with the situation. It is heart breaking, on a whole new level, when you go from tough love with your mom, to emotional support and a shoulder to cry on with your daughter. All when you haven’t had time to process your own thoughts and emotions, but instead compartmentalized them; filing them away for review later.
Where my brother lacks empathy, I have it in spades. Spending as much time with my mom as I do, I’m fortunate that she will, sometimes, discuss her feelings with me, which gives me an insight into why she does and says the things, and behaves the way she does. Which you would think makes me more sympathetic to her plight. On the contrary, while I am sympathetic, I am also angry. In previous posts I have mentioned that my mom and I never really had that traditional “mother/daughter” relationship. She didn’t teach me how to put make-up on, she didn’t talk to me about my first time having sex, she didn’t talk to me about love and what it means to love another person, she didn’t take me prom dress shopping or discuss the importance of a good pedicure, and we didn’t bond over my becoming a mother when I was pregnant. It is unclear to me exactly what I was expecting as I got older, but at some point I was hoping that things would change. That as we both got older, maybe we would bond more. Maybe she would someday help me plan my wedding, maybe we would someday have that relationship that we were missing for so long. To say that I feel slighted by life, in terms of my relationship with my mom, would be completely accurate. I am not nieve enough to realize or understand, that we are building a different type of relationship, but I want the other one to. Is that too much to ask for? Apparently it is.
As I read more and more about the three stages of Alzheimer’s, I realize more and more that the relationship I longed for, for so long, is gone and will never exist. This is one reason I always vowed to do things differently with T, and now, I’m more thankful for that than ever. Part of me is so happy that if, hopefully not when, I develop this stupid disease, T will have all of those memories I longed for with my mom, and will be able to share them with me, when I can no longer remember them for myself. On the other hand, it breaks my heart that someday my own daughter, may have to take care of, deal with the ups and downs, and handle me the way we are now with my mom.
Life isn’t fair, I know this. We are all dealt a certain lot in life, how we deal with that lot defines us as human beings. When I share my story, I’m not looking for sympathy, pity or anything of the sort, I’m just simply sharing my story.
Alzheimer’s is a terribly nasty disease that, every sixty-five seconds, takes over another Americans life. There is no cure for it, only methods to “slow” the progress of symptoms. Currently my mom is participating in a twelve month clinical trial to test a drug that could slow the progression, if not stop the disease altogether. We don’t know if she has the control or placebo, but if I had to guess, it’s not the control. Which adds to the sadness of her story, her life, and that of her family.
Hold them close and hope for the best, even on the bad days.
Until next time…