I Wish I Had A River

She wears diapers. She eats with her fingers, and wears a bib. When prompted she will use a fork or a spoon, but often the food ends up on her clothes or the floor. She’s mostly non-verbal. She can’t walk, although with assistance she can take a few steps. She spends most days sitting in her chair, although she likes getting wheeled around the block to smell the flowers. Her favorite book these days is a large picture book about kittens. She has a new kitten, in fact, which she’s named after herself but whom she tires of quickly, when the kitten gets too rambunctious. She knows who I am, but I’m not sure I know who she is anymore. This is my mother, who now has become my child. She’s 70 going on 2.

Her condition is most likely due to a stroke, or a series of them. My mom never took very good care of herself. She preferred high-fat, high-sugar foods, and never exercised, despite having high blood pressure for most of her adult life. She also never took care of her finances, and didn’t save any money for retirement. So now my brothers and I (and our spouses) are left holding the bag.

This experience has been all-consuming. It’s been a full-time job dealing with all the paperwork, doctors, nursing homes, board-and-care homes, physical therapists, speech therapists, and most of all the government bureaucracy. Aside from missing my work since I’ve been laid off, I really miss the chance to escape from thinking about my mom all the time. When I was working, I was singularly focused on what I had to do; now, I have nothing but time, and most of it is spent either visiting her or dealing with one of the many burdens she has left me with. Don’t get me wrong – I love my mom – but this is the hardest thing I’ve ever gone through.

Several times a week I dream about my mom, but it’s not her as she is now. The dream always depicts my mother as walking and talking, having recovered to her former self – intelligent, animated, sometimes cynical and caustic, but fully aware. In the dreams, we have conversations, and sometimes she explains why she was in such bad shape and why she’s better now. The dreams are hopeful, optimistic, sunny. But then I awaken into reality of this bad dream come true.

She was a brilliant woman, once. She went back to school as a divorcee with 3 young kids and still got straight A’s. She went to the USC Social Work PhD program but left with her Master’s because she was bored. She played piano beautifully. She spoke Spanish and Yiddish. She sponsored a Jewish Iranian immigrant teenager to live with us when I was in high school. She took us to Europe and Israel. She sent me to an alternative school because she knew that regular school was making me miserable. She let me grow up without too many restrictions. She got it.

But now she gets nothing. When she does speak, it’s a repeated mantra, “take me out of here,” or “take me home with you.” She thinks that there are Nazis in the house and that they’re torturing her by hanging her upside down. Yesterday she told me that she was being treated like a slave. The reality is that she’s treated like a princess. Mariana, her caretaker, dotes on her every need. She gets 3 meals a day, plus snacks, and treats. She watches tv, goes for walks, goes to the mall, gets her hair and nails done. It’s like a resort where she lives. The house is in a quiet bucolic neighborhood. When she was coherent, this would have been her dream home.

But what’s the difference, if she doesn’t experience reality in the same way that I see it? She must interpret Mariana’s caretaking as hurtful, the feeding and changing as some sort of torture. If I really did take her home with me, would she feel any better? Or would her dementia-addled brain still think that she was in some sort of hell? I long to connect with her, to ask her what it’s like inside her head, her broken body. How frustrating it must be, to not be able to walk, or talk in full sentences or ideas, to focus on the book that she starts from the beginning every time she opens it, to have to use her right hand even though she’s left-handed, to have people treat her like a small child.

Before we moved her into the board-and-care home where she now resides, she was in a skilled nursing facility for a month. While she was there I put up some pictures in her room, taken in the 70’s, of her, me, my brother, and her parents. My mom was about 36 at the time. The nurses all thought that it was a picture of me. I’ve always closely resembled my mother, but I didn’t think that it was that close. If I look so much like her on the outside, does that mean I look exactly like her on the inside, too? Is my brain so much like hers that I will become like she has?

I tend to be an optimistic person, but I’m hard pressed to find anything hopeful about this situation. My mother will never be the person she was. I still have hope that if we adjust her medications, feed her the right things, and possibly find the right doctors, that she will become a little more aware and coherent. But I’ve come to realize that there is no escape from time, no negotiating with nature. Aging, at its core, is something that can never be controlled. This is what happens to living organisms, plant or animal. Some of us will be lucky enough to go quickly, but for many, dying is a long, drawn-out stage of life, and in my mom’s case, I must be the one to shepherd her down this slow road.

I wish I had a river to skate away on.

11 responses to “I Wish I Had A River”

  1. When I was young, my family would go Christmas Caroling witha group from our church. One of the people we always sang for was an old man with Alzheimer’s Disease — I remember being mystified by him and spending a lot of time wondering whether there was a complete, lucid consciousness inside him that could not be expressed because of damage to the interface between consciousness and body, or whether his actual self was where the damage was. (Strongly dualistic, my manner of thinking was.) Is the person that is complaining about being treated like a slave your mother (the intelligent, animated, cynical, caustic woman you remember), who because of the decay of her body and brain cannot enjoy the life she is living, or is that woman gone? …I don’t know, when I try to phrase the question now, it does not seem that coherent or relevant. When I was young it seemed like about the most important thing.

  2. Jane says:

    I tend to be an optimistic person, but I’m hard pressed to find anything hopeful about this situation.

    “If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all.” -Martin Luther King Jr.

    Don’t lose hope, Jen.

  3. Ivy says:

    I lived through something similar. As Camus said (approximately), ‘In the depth of winter I finally learned there is inside of me an invincible summer.’
    Skate away on the river inside of you. Come back. Skate away. You can.

  4. Jeremy says:

    Wow, Jen, this is so heartbreaking.

    I can relate, though my experience occurred in a series of visits with my Oma, not in such a hands-on way… But she also had a series of small strokes, which made it difficult for her to walk, then to talk, then to sit up–until finally she was just a bony, frightened-looking old woman fed by a tube into her stomach. I was never sure if she recognized me when I visited, whether she was happy to seem me or afraid of me… I feel for you.

    (And I guess the only “hopeful” thing that I see here is the fantastic writing you’ve produced out of your last two tragedies…)

  5. Dave says:

    These are such tough issues, and it seems like everyone faces them at a distance and then up close. This was a particularly insightful and sensitive essay. Best of luck with this difficult situation.

  6. lane says:

    Wow this is really sad. My sister has MS and is reaching the point where she can’t really speak anymore. Although I think inside her brain is still kind of OK. It’s just her body, freezing up.

    And 70 doesn’t even seem that old.

    wow, . . . tough.

  7. Marleyfan says:

    What a caring and loving daughter you are. It is obvious from the amount of nursing homes that not many people are able to take care of our parents like you have been able to. I hope that when and if my parents get to this point, that I can follow in your footsteps. It is clear that you need to take care of yourself (most caretakers neglect themselves).

    I’ve been re-reading the Seven Habits of Highly Sucessful people, and the first chapter which deals with being proactive talks about Victor Frankl’s incarceration in the death camps. I really needed to read it, because it spoke about how when we cannot change a situation, sometimese the only thing we can change is our outlook. Frankl said
    “The last of the human freedoms: to choose one’s attitude in a given set of circumstances, to choose one’s own way”.

    Keep your nose to the wind, and adjust your sails as needed, and as my grandmother advised me “always find someting to look forward to”.
    Our thoughts are with you.

  8. j-man says:

    Thanks for all of your kind thoughts. To be fair, I am learning to live with this situation, and am able, a lot more of the time, to compartmentalize my feelings about my mom’s situation and keep them somewhat separate from the rest of my life.
    Lane, I’m so sorry to hear about your sister – that’s really rough.

  9. ginny says:

    I have lived through the same experience. It is nearly unbearable. But I bore it, because I had to. And I am a different person because of it. Best wishes to you.

  10. PB says:

    This is beautiful writing.
    I have been bitchy and anxious all week. How stupid of me not to bask in every moment of health and coherence.
    All we have is now.

  11. Mimi says:

    Take pride in the successes of others.

    What I mean, is that, you will do things differently than your children or brothers. Everyone makes their own choices. Remember your mother for all the good. And know that if she was 100% lucid, she would undoubtedly be so, so embarrassed.

    Any woman with 3 kids and straights A’s in school can take care of herself. And thats what she probably thught she’d always do …

    hugs and kisses to you and YOUR strength.