Melissa, 40

When I found out that my mother had Alzheimer’s, a friend gave me a book. There was a quote in it that said, “To tell you about how Alzheimer’s Disease has affected my mother, I’ll have to tell you who she was before Alzheimer’s.” I think that is what a big part of this journey has been about: finding out who my mother was and is, and also who I was and am becoming because of it. It’s kind of ironic that I am transitioning into being a caregiver for a woman who spent her entire life being that for so many other people. As the youngest of four, with a mother who was a single parent and geriatric nurse in a small town, I remember her being the glue that kept it all together.
    When she was diagnosed with Alzheimer’s in early 2007, we all were upset, but she was devastated. As a nurse, she knew what the next season of her life was going to be like. Alzheimer’s is such a cruel disease, and she fought the diagnosis, seeming to prefer that it be anything but that. Over the next several months, we downsized the way she lived from a big house to an independent living apartment. Currently, she still lives on her own, but a woman comes to clean her apartment once a week. (It’s a little taxing on the woman because my mother tends to follow her around everywhere.) That arrangement has been working fairly well for awhile.
    There are three major stages of Alzheimer’s, and in the first one, my mother was still able to drive and meet many of her own daily needs. Really the only noticeable change was that her short-term memory was not as sharp as it used to be, causing more frustration and anger than anything else.
She’s now entering her second phase, so we know that major adjustments have to be made. What I notice now is that she’s really weepy and depressed, and she doesn’t care about her hygiene like she used to. It’s almost like she’s afraid of bathing, like it’s unknown. That’s really hard to accept because I can’t remember her going one day without a bath.
    My brother lives a few miles from her, and although he’s good about running errands and fixing things, it’s hard for him to deal with the emotional side of her disease. My sister is great at that, better than even me, but she lives in Arizona, so that means I am taking on more of the hands-on responsibilities. Every couple of weeks, I drive to Lawrenceburg (about one-and-a-half hours away) to check on her. I’d be lying if I said I look forward to it. I feel guilty even saying that, but it’s true.
I’m married, and I have an 11-, 7- and 4-year-old. My head was spinning way before this all happened. My husband’s mom had a stroke when he was in his early 20s, so he’s been wonderful about it all.  He was an incredible caregiver to his mother, experiencing a lot of what I am going through now, but some things no one can really help you with or comfort you about. Some things you just have to walk through on your own whether you want to or not.
    There are no words to describe how it feels watching your mother deteriorate right before your very eyes. Every time I see her, I see someone different, and it’s emotionally shocking. In the past several months, she has aged almost 20 years. There are even some times when she will come to spend the night with us, and when she gets up in the morning, I have to regroup because I’m shocked all over again by just how much she has changed in such a little bit of time.
    I think one of the biggest challenges is trying to respect her as my mom, when in so many ways, she reminds me of one of my children. Now, I’m the one who has to make decisions for her. I’m the one who has to almost threaten her to take a bath. I’m the one who has to tell her to stop shuffling her feet (she’s starting to forget how to pick them up while she walks). I’m the one who has to console her when she finds herself breaking down over things that happened that she can’t change, some of which took place way before I was born.
    She experiences random moments when she wants to remember everything. If she can’t, she calls someone who she thinks can jog her memory. Some days, that means she’s made a lot of calls to a lot of people. When I visit, sometimes I take her to the familiar places of her childhood, such as her old neighborhood and the family cemetery. She’s an only child, so I think it’s important to her to share her memories and know these things won’t be forgotten.  I have written down and videotaped her talking of the past she remembers, for her sake, for her children and for her grandchildren.  It won’t be long before the grandmother who they know goes completely away.
    Logically, I know that doing this is good, and I hope that it’s helping, but it’s all so mentally exhausting. There’s not one trip I make to visit my mom where I don’t find myself either crying all the way there or all the way back. It’s very confusing, grieving for someone who is still here; preparing yourself for the slow death that is happening right before your eyes that you can do absolutely nothing about. As a self-proclaimed control freak, it can be extra frustrating.
    Then, there are the boundaries. I am having the hardest time trying to find them for her and for myself. My mother can be so verbally combative at times. You can see her struggling between wanting to do things for herself and her fear of trying at the risk of failing. She tends to be very argumentative about the way the disease has progressed. For instance, she claims that her memory is no worse now than a year ago, yet she can no longer do the crossword puzzles that she loves (even the most basic editions) because she has forgotten how to write an “e.” She was so angry when she was told that she would need to have her medication dosage increased — angry at me, not the doctor.
    It’s like everything is an internal battle ... taking care of her and taking care of my family ... feeling that what I do as the daughter of a sick mother and having the right mind to be a mother to my own kids are right ... finding time for my family and then finding time for me ... saying “yes” when I can and not feeling bad for saying “no” when I can’t. That last one is especially difficult.
    I know I neglect my husband sometimes. I know my children don’t always get the attention that they deserve. Children can sense when something is wrong. My baby child deals with it by wanting to sit on my lap every chance she gets, or if I’m drinking bottled water, taking a sip. I love her, and I know that’s her way of showing that she loves me, but right now, it’s a luxury just to have my own lap and my own bottle of water. I don’t always want to share, and I’m trying to find a definitive answer to whether I have to ... if being a mother means that there are not times when I can be my own woman.
I think that’s why I love working from home so much. My home office is the only place that’s completely mine; where people have to ask for permission to go in or use what’s in there. Ironically, that desire is something that I remember my mother instilled in me. When my father died, she had never worked a day in her life. She didn’t even know where he banked. She struggled for years to find her independence, so she always encouraged me and my sister to be more than just a “wife” or “mother.”
    Right now, I’m just trying to find how to “be” while keeping my sanity. Humor has helped a lot. I remember when we were packing my mother’s things, she kept sneaking into the room when she thought we weren’t looking and unpacking things she wanted to keep. My sister and I laughed until our stomachs hurt!
    This has also been a time of introspection. One time my mom and I were watching a movie  and she blurted out, “I wonder if other 70-year-olds miss having sex.” That would mean she misses it. That made me think about my mother in another light. 
    But this whole experience has been life changing. Because I came from her, as she changes, so do I. The cloud is big, but there are many silver linings; lessons I wouldn’t have volunteered to learn, but I’m happy for. I have a larger capacity for patience, and I know that, in time, it will make me a better parent. I have learned how to compartmentalize. At first I thought it was just a coping mechanism, but I now believe it’s healthy to keep emotional things separate. What my husband needs is not what my children need. I’ve learned that I can’t be all things to all people. One time my minister said to me, “What happens if you don’t answer the phone when you know it’s your mother? What would be her back up plan? Everyone needs a “Plan B.” For a Type A personality, that can be hard to accept. I’m learning not to see that as selfish. 
    And, I am starting to demand things for myself ... that it’s OK to take time out to take care of me. I must admit that I feel best about myself when I am doing things for others, and right now, that’s especially my mother. Sometimes it’s hard to ask for help, but no one can do it all. You shouldn’t put the pressure on yourself to expect yourself to.
    It’s not easy. Everyday there is a moment when I want to quit. But when I hear my mother say things like, “Just put me in a nursing home,” the mom in me kicks in and I hear a child saying, “I just want to run away from home.” I know, like all of us, she is just looking for reassurance, so even at the roughest of times, what keeps me going is my hope that one of her last memories will be, “Wow! I’m so loved.” And at the end of the day, I think we all go through what we do to hear and feel just that.