Sunday, October 21, 2012

The Other "V" Card

Momma said there'd be days like this...I think. These days, it is hard to remember any words of wisdom that my Mom once passed along. Not only that, today is a day I am in a "funk." Actually, I have been in it for almost a week.

Today, I thought, "How did my life get to this point?" The point where I am doing my mother's laundry and labeling her items with a laundry marker. Like a mother sending her child off to camp...except that the roles are reversed. The child is taking care of the mother. I knew that this role reversal would eventually happen. It is just too soon.

And today, like almost every day before I go see her, I have a feeling in my stomach. That feeling of nervousness. Anxiety over what I am going to get with her. Who is she going to be? What is she going to say? Will it make any sense? All I know is that I will never have the Mom back that I so wish I could. The Mom that I once had.

I want the Mom who would go scour Marshall's with me looking for a deal. I want the Mom who would sing "All The Pretty Horses" with her soft voice to my children. I want the Mom who would look content sitting on the couch, feet up, truly engrossed in her next new book. I want the Mom who always had a soft and soothing voice whenever I talked with her. I want the Mom who baked gingerbread cookies every Christmas, for me during my childhood and then with me. Heck, I'd even take the Mom who had slight dementia and laughed with me because sometimes a conversation was a sort of charades game of words.

I look at other people with their mothers and I wish I had what they had. I listen to them complain about their mothers. How "She is so annoying. She is always talking to everyone, even if we don't know them!" Or "My Mom won't stop calling me!" Man, do I wish I could say that.

And I know a lot of people out there are thinking, "At least your Mom is still alive. My Mom didn't get to meet my baby." Trust me, I get that I am lucky to still have her around. I love the days that we laugh or that I walk through the garden with her, even if her mind has turned the blowing leaves into little scurrying animals. But today I am playing my victim card.

Today I am weepy and pissed and so utterly sad that I am sitting at home writing her name on her laundry so it doesn't get lost. I am pissed about punching in security codes in order to get into a new wing at her facility. I am tired of going to see her and hearing a story she has created that something is wrong and someone is misbehaving... and it certainly isn't her. I am tired of sweeping out dried leaves and ripped pages from books from her dresser drawers, where they have been safely stored away for no good reason. I am tired of the fact that she can't tell the difference between a doll and a real live baby. I am especially tired of the guilt. Feeling guilty that I am doing the wrong thing or not doing enough for my mother. The guilt, the sadness, and the anger are just sometimes too much to bear. They envelope my being. And I can't start crying because the feelings are so deep that I am not sure what it would take me to stop. I imagine sobs that are encompassing my soul, tearing my body. I can't go there today.

So instead, I will have my solitude. I made some homemade soup. I took a long hot shower. And I sat and did my Mom's laundry. Today I will play the victim card, for tomorrow I will be dealt a new hand.

Tuesday, October 9, 2012

Spinning the Wheel

Being a caretaker to an Alzheimer's patient is a little like spinning the roulette wheel in the game of life. You never know what you're going to get. But today, I won. 

It's been a while since I've written about my mother and the disease that is taking her and some have asked for an update. In June, she was transferred to the locked down facility called Clare Bridge. She had been trying to leave the health center and, in fact, she did leave three times. People at the facility saw her leave and followed her to see where she would go and how she would react. The first time she got to a place where she was lost but she somehow found her way to the front desk, the main door of the entire facility. Let me explain. This place is huge. It is on 87 acres that consist of independent living, assisted living, a health center, and Clare Bridge- the locked down Alzheimer's unit. It also has ponds, walking trails, a historic cabin, and gardens. 
Imagine if you will, a resort for senior citizens.

All of this is sandwiched between two busy roads in Northern Indianapolis. There are many places she could go and get into trouble. In her defense, each time she strayed, she stayed on the sidewalks. The first time, as I said, she made it back to another door, the main door. She was flustered and confused, but Mildred, the keeper of the gates, knew my mom and made sure she got back to her living quarters okay. The second time she "took a walk, " she again was followed and did ok. The last time, she got completely turned around and made it to the end of a street to a stop sign connecting to a busy road. The staff following her immediately helped her. It was the last straw. She had to go to Clare Bridge and it had to be today. 

Today” was in June, and I happened to be in Colorado visiting friends. My wonderful husband, Jason, and my mother-in-law, Liz, took on the task of helping her move and making sure she was emotionally ok with what was transpiring. That evening Jason called me in Colorado to update me on the situation. He said that she was moved and the instant she moved, she didn't realize she had lived anywhere else. As depressing as that notion was, that she had no recollection of having lived anywhere else, it was actually a relief. It meant the transition would be a lot easier than we thought. 

June and July passed with few problems, but then things started to disintegrate. She was irritated. She still wanted to be able to walk outside, but on her own, which really she had not been able to do for years. She didn't want to participate in planned activities. Trying to explain to her that the activities would be fun and that she should participate was like telling a child that they should take those piano lessons they hate. She was having none of it. 

By the end of July, she was downright pissed. She was waking up at night. She was pacing. She was always agitated. I would get calls that she was mad, she wanted to leave and was getting aggressive. My mom who hardly ever raised her voice, never cursed, never raised a hand to anyone was fighting the staff. Literally fighting, yelling, pushing, hitting.

I remember one call in particular. The staff was right in the middle of a situation with her and was hoping that I could help. I was driving home from a visit to Virginia and Maryland and was in Ohio when I saw that a call was coming in from Clare Bridge. I always get a sinking feeling when I see the number pop up on the screen. The "oh, no. what’s wrong? kind of feeling." The nurse called and said, "Molly, I'm calling about your Mom. She's really mad and agitated."

"What's wrong? What set her off?" I ask. 

"Well, she says she wants to leave, she has to get out. She has her make-up, toothpaste and a roll of toilet paper and she won't leave the door. Gordon is trying to calm her down, but she is yelling and pushing him."

I laugh, "Well, sounds like she is in survival mode. At least she sort of knows what she would need." What could I say? It initially struck me as funny and there was not much I could do driving on 70 West a couple of hundred miles from home. The nurse laughed and then asked if I'd talk to her. Apparently she also was saying she was waiting for me. 

I hear her call my mom to the phone.

"Yes?!" I hear my Mom's voice so riddled with anger, it is scary. Like the voice of a stranger. A voice I have never heard come from my Mom's lips. 

"Mom, it's Molly, your daughter. What's wrong?" I ask.

"I have I get out of here. They are telling me I can't leave, but I am. I am waiting for you because there is no other choice. I am not staying here."

"Mom, I need you to calm down and listen. I can't be there right now. I'm not in town." I try to explain. I speak clearly and in a tone like I am speaking with a child. "I can come see you tomorrow, but I need you to listen to the nurse. You have to behave. You cannot leave. You live there now. Ok? I promise that I will be there tomorrow."

"FINE" she screams and I hear the phone thrown down and bang onto the counter. Then she starts to rant. "I can't believe you called her! She is going to come here and kill me. What's the point?! I should just be killed!"


The nurse comes back on and tries to reassure me that they will take care of her and not to worry. She thanks me for talking to her. I tell her to call me as much as needed and that I'd be there tomorrow.

Not to worry? A stranger has possessed my mother. A mean, abusive, unruly woman is in place of the loving woman I always knew and I am not to worry? Right.

Tomorrow came and I headed into Clare Bridge with all sorts of stories swirling in my head. I was scared to go in knowing the state she was in yesterday. I hoped that it didn’t become an emotional or physical fiasco. I walk in, see her and say, "Hi Mom, it's Molly, your daughter. How are you doing today?"

"Great! It's so nice to see you."

No memory of yesterday's dramatics. None. A blank slate.

Within a week, she was transferred to a geriatric specialty program at a small community hospital. She ended up staying there for two weeks to regulate her medication and behavior. She had experimental medications, one-on-one attention, counseling and activities, and visits from me. The doctors and staff there were again saying what I am accustomed to hearing, "Your mom is so beautiful. She is the sweetest woman. We wish she could stay here with us."

It worked. She no longer tries to leave. She is the sweet soul she always has been. She participates in activities. And now she also "works" there at Clare Bridge.

She has been a caretaker her entire life- an older sister, a mom, a teacher, a counselor, a friend. She now believes that the other patients, the people she lives with, are babies and children. That's what her brain perceives. She oversees the patients, the “children.” She is there to take care of them, and just as being a caretaker for her can be overwhelming to me, it is to her as well. She worries about the "children". Why isn't anyone coming to get them? Where are their parents? She cries for them. She talks to the staff about them. She tucks them in and talks with them. She loves them as best as she can.

Her job is important to her. In her own way, she tells me about the people that are misbehaving. She takes me on a tour around the garden and tells me about how hard they've worked to get it like this- so lovely. She counsels them. In her reality, she must keep them safe. She must love them and care for them. 

She is in her her own world, her own reality, but to her it makes sense. It can be stressful at times, but she believes she is bettering these people's lives. She is helping them. And I believe she is. Her sweet and compassionate soul is a joy to have around again...finally. 

By the luck of the draw, the spin of the wheel, today was a good day. A day of disjointed conversations. A day of singing to music with the warmth of the sun beating in on us through the sun roof. Enjoying the beautiful weather and the turning leaves. A day of enjoying my Mom's peaceful soul. A perfect companion. 

Friday, October 5, 2012

Powerful Words

It happened. I wasn't sure the day would come, but it did. It may be fleeting, but today is the day my son realized and said that he is good enough. Not just good enough, but awesome.

And last week it happened. Except this time it was my daughter. Innocently showing me what she wrote in her school journal. She is loving and powerful and...weird. So she says, and I believe her.

Since my children were born, as most parents do, we wanted them not only to feel loved by their family, but also to love themselves. As a parent, many times a day, every day, I tell my two kids that I love them. My husband does the same. We do our best to reinforce in them why we believe they are such wonderful human beings. We share with them what others say about them as well.

The past few years with Jake, our son, have been tough. They have been riddled with tears and hard questions. "Why can't I learn like everyone else?" "Maybe I'm just not that smart." "Why would someone say/do that?" Jake is plenty “smart”, but his mind does not process information in the same way as most people. Just imagine a condition a lot like dyslexia, but not quite and with no defined treatment or teaching protocols, and you will be almost there. Frustrating? Oh, yeah.

Jason and I have been constant advocates for our son. For instance, we have helped him with his schoolwork, spent endless hours with educators to help them find ways to teach him, and we have tried to help him find a sport or activity he likes and honestly understands. We've explained at times that people aren't always kind. His mind takes it all in and you can almost see the gears turning, trying to process the information we have given him or the situations life has thrown at him. 

Well, fourth grade has been a great year so far. We have discovered Brazilian Jiu Jitsu and Jake loves it. The instructors are kind and patient and work with him in a very "hands on" manner, which is just what he needs. Jake is feeling stronger and more confident. He radiates coolness and pride when someone asks him about it. And school, which is still tough at times, at least seems manageable to him. He isn't crying everyday. That is a win. Folks that is a HUGE WIN!

So today Jake was working on some homework. He has been trying to catch up after being out sick all week. As he is working, I hear, "What?!...Mom, could you come here? This doesn't make sense to me." I go over and read the homework. It asks him to fill in the blanks and to tell the teacher what his ideal self would be. I can see that he is concerned about this question, and he is fretting over what seems simple to me.  I calmly say, "Well, she is asking you to fill in how you want others to know you. Do you want to be smart, funny, athletic, quiet, a good singer...stuff like that." Jake is still perplexed and I start understanding where his problem is with this statement. I said, "Jake, here, they want to know your name or what you want to be called. For instance, you could write Superman. And here, imagine what you would want your friends to yell out about you." He seems satisfied and I go back to my ironing. Soon, he walks over to me and says, "I did it. I answered the last question too. Could you check and make sure I did it right?" I take his page and read and fight back the tears of happiness. He thinks he is awesome just the way he is. I tell him it's great, just perfect.
And Reese, my daughter. She has been the outgoing one. She makes friends easily and is very smart. Things come easily to her. She has such an amazing spirit. A vibrant, kind, creative, yet full of energy kind of spirit. Jason and I have always said that we need to help her continue to grow that spirit without stifling it, yet make sure she has the correct discipline and support. There's a fine line with her. As confident as she is, she looks for validation. "Momma do you like this outfit? Is it pretty?" And "Don't help me! I will do it myself!" And "Do you think Daddy wants to see my work? Can you leave it out for him?" We have always taught both of our children that you can do or become whatever you choose. Reese did wrestling, her choice, for two years, even when she was the only girl. She has spunk and thank goodness she knows it, at seven years old. To describe herself as loving and powerful is amazing. To even have an idea of what that means, at her age, is truly wonderful. And weird...we all are in some way and she is proud of her own weird way. 

When I saw what she had written, I wanted to jump up and shout, "Yes!!!" And if I was at home I would have, but to do it randomly in the middle of my son's Jiu Jitsu class would have been a little strange. But I was glowing from the inside out! 

It's times like these that you realize you're a pretty good parent and that your children do listen to you. Sure they hear you yell out, "This door is a piece of crap!" and repeat that. But they also hear the good stuff. The stuff that you want them to soak up. The "I love you’s", the times you whisper to them when you think they are sleeping,"You are such a sweet boy". The "You have such a great spirit" and "How's my beautiful girl today?" The things that matter.

I took a lesson from my parents. Every night at dinner, when we are all sitting and focused, each one of us answers a question: "What's the best thing that happened to you today?" Because no matter how crappy (There's that word again) your day has been, there is always at least one good thing that happened. Now, I've taken the lead and added another thing. We also finish the statement, "I am awesome because..." Too many times we forget the good stuff, especially about ourselves. And sometimes it doesn't seem to matter if someone else tells you that you’re awesome, you've got to believe it yourself.

So maybe it was the kind words my husband and I passed along. Maybe it was the conversations and statements of awesomeness at dinner or maybe it is their inner being that just knows that they are awesome. Whatever the reason, they got it. They are awesome. They are loving and powerful. And yes, they are weird. Me, too.