Up the Down Staircase

The past two years have been the most difficult years of my life. Two years ago, my husband and I sold our home and moved in with my parents to help care for my mom, who has been diagnosed with Alzheimer's.  Now, two years into this experience; I have a lot of insight, and at the same time I am more puzzled than ever. 

  So many emotions.

 There is frustration. Watching my mom start to be frustrated; then angered by her lack of ability to do what she used to. I have learned to re-direct, speak slowly, calmly, and talk about the mundane things. I have never taken so much comfort in 'small talk'. As she has slowly lost these abilities, she has had to learn to accept help and direction.  The frustration comes from the inability to really do anything for her except comfort her. That has been extremely difficult. 

There is fear. Sometimes she says she is in pain, and she can't tell me where. She has fallen twice when I wasn't there. I have realized her fragility; and the fact that her care depends on me.  I have always been a student of human faces. I like to watch people's faces as they react to funny or happy things. My mom has always worn a constant happy smile, but now;  Her face wears a near constant expression of anxiety. I have watched even her facial expressions change over time.  Her whole demeanor has changed.  I understand the 'shamble' and aimlessness described in the movements of Alzheimer's patients, because I see it now more every day.  It scares me that I can't really do anything to make it better. 

There also is a certain dark humor; an absurdity. Occasionally I remove kleenex from the dishwasher, bread from the cabinet, or socks from the refrigerator, and it's all in stride. There is so much need, And the need is constant.  Ironically, I have had the Alzheimer's help guide The 36 hour Day on my audible for several weeks now, but have had no time to listen to it. Even as I sit down to compose and write, I have gone to help her soak her infected toe, dress, find her glasses, to fetch water, to plan the afternoon, start and assist her with chores, reassure her about where her shoes and wallet are several times, to help her tell which bottle is deodorant vs. face moisturizer....and on and on.  It's the routine. And there is a lot of comfort in routine. It is your reaction to it that either makes it pleasant and routine, or traumatic and troubling. My mom still makes fun of herself, and I am so reassured when she laughs and smiles, because I see glimpses of her old self.   I also realize that I have aged from 40 to 80 in 2 years.  I know when we need Metamucil and distilled water in the house. I know where the heating pad is, I nap as a hobby, and go to bed at 7 pm. Also it feels cold in her, doesn't it?  :)  Laughter truly is the best medicine.

Then, there is guilt. The slow realization that it isn't about how tired, or stressed out I am. When I say the past two years have been difficult for me, I then think of how they are beyond difficult for my mother. When I feel like I am drowning, the times I am prone to self-pity, I remind myself that it isn't happening to me. It's happening to her. For my mother, it must be terrifying. To wake up each day and lose a little more of yourself as you knew it. I can't imagine how scary and confusing it must be for her. I feel guilty being able to do things like drive, work; when she can no longer do those things and I wish everyday I could make it better.

Finally, there is love.  I have an amazing support system of friends, neighbors and care givers. My Dad has been wonderful despite having health issues himself.  My husband and son take on A LOT of extra duties and are wonderful. We have a wonderful woman that comes during the week while I am at work. We have family dinner each Sunday and it has become a very important thing for us. It is when my mom is the most expressive. She loves that her grandson is there. And I know that having her family around is the best thing for her. She likes when her kids and grand kids call, when she can go out and garden. She is in her own home, and that has been very important. And it's those things that make a life, and make her feel like her former self again. I do love that. 

Writing is cathartic.  It's hard to end a piece like this, because just like the quote above I have no idea what the ending is, and I dread thinking of it. All I have is this present moment, and I finally understand why people say ‘live for today’.

Now; If you will please excuse me..... I need to go remove a roll of saran wrap from the dryer.