Thursday, January 26, 2012

Love Among The Ruins

Ah, love! It makes the world go round, or so the song says, and most of us will go to great lengths to experience the feeling in its myriad forms. We love our pets, our friends, our children, our families, and most us want to find one special person to love. We want to be connected, to find our soul mate, to feel completed and whole, and we believe if we find the "right" one that our world will be perfect, a heaven on earth.
Most of us have experienced times when we know with our heads that we love our families, friends, and spouse, but we don't feel it with our hearts because we may not like them very much at a particular moment. We feel anger or hurt or sometimes even hatred, but we still act in a loving manner towards the individual because we know that's the right way to behave. This is because most of us know, without using the terms, that love is both a noun and a verb, a feeling and an action. We learn over time that if we act lovingly, the feeling of love usually returns to give us that warm glow in our lives.

But what should we do when love unwantedly disappears in our beloved child, friend, or spouse? Well, when the individual is mentally healthy, we will usually try to change the dynamics of the relationship, if that is possible, or we will end the relationship. However, if the individual is mentally ill, and we are responsible for that person, we have to find a way to live with no shared loving feelings, while still acting in a loving manner. Not an easy thing to do.

Why love disappears in a few people with dementia or mental illness is a mystery--an atrophying of part of the brain perhaps or a chemical imbalance, but it is devastating to the loved ones left wondering where love went. It is a cruel, ironic, twisted stab to the heart. A person who once loved us with all his or her heart is no longer capable of feeling anything for us. Feeling, as we understand it, is gone. No empathy, no insight, no connection at all.

Yet, this person was once a beloved child, spouse, parent, sibling, or friend, and this person needs us to care for him; so what is a caregiver to do as his or her own feelings of love begin to wane in the emotional ruins created by dementia or mental illness?

My wise youngest son, who is my co-caregiver for his father, my husband, says we must choose to act in a loving, respectful way because that is who each of us wants to be as an individual. For example, we could choose to give my husband dinner by himself--that would certainly be more pleasant for us, and he wouldn't care one way or the other--but, instead, we choose to fix a full meal each night and dine with him as a family, honoring what we once had.

Being loving to someone in a void, in a vacuum, in an abyss is at times incredibly painful and lonely, sometimes even a nightmare. It goes against all that we think of as love. Songs do not sing about this kind of love. There is no acknowledging glance across a crowded room. It is all one sided. You give, but you don't get. No Hallmark card endings. All you have with this kind of love is your choice, and whatever choice you make about how you love when you love among the ruins, tells you everything about yourself. This is not the love we think of when we bask in the warm glow of our loving relationships, but it is sometimes a love we must experience.

Take care,

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  1. What a beautiful post. I am inspired by your families love and courage to continue with love dealing with the progression of this insidious FTD. May Strength and wisdom wrap you daily.

  2. Kate: You've had a long road with your husband's dementia and the man you've loved is now a stranger. It's drilled into our minds that love is "unconditional." Whoever circulated that never experienced a loved one with dementia.

    But, as I found with my dad's Alzheimers, you learn to love the stranger who deserves as much love and dignity as any other human being. There are frustrations and setbacks, abuse and moments where you can't take it another moment and you literally run from the house. But, in the end, your compassion comes shining through because that's how you are and they have nobody else.

    Remember Diane Keaton's character Bessie in "Marvin's Room"? There's a wonderful scene where she realizes out loud "I have so much love!" Her sister, played by Meryl Streep, pacifies her with a yeah, yeah, everyone loves you. "No," says Bessie, "I have so much love here inside" to have taken such good care and sacrificed so much for the senile "Ruth" and her bedridden father who had a stroke 17 years before. Hard to believe that DiCaprio played the young son in a mental hospital and that De Niro, Cynthia Nixon and Kelly Ripa were in that moving 1996 film.

    "Marvin's Room" haunted every moment of my caregiving experience, especially when Bessie would entertain her father with a small penlight shinging on the wall. Sometimes that all there is to quality of life.

    Cheers, Kerry Swanson

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