"As kingfishers catch fire, dragonflies draw flame; / [ . . . ] Each mortal thing does one thing and the same: / Deals out that being indoors each one dwells; / Selves -- goes itself; 'myself' it speaks and spells, / Crying 'What I do is me; for that I came'." --Gerard Manley Hopkins

01 June 2008

Love is . . .

“Love is what you go through with someone” – James Thurber

Unknown saints quietly work their magic in homes across the country, often exhausted and sad and frustrated, but choosing to love and care for those whose lives have been bound up with theirs, despite often being misunderstood, lashed out at, and finally not recognized at all. They are the loving and tireless caretakers of spouses, siblings, or parents with dementia.

I hate that word, “dementia.” It has such strong connotations of insanity, and yet it is not really insanity as we think of it in popular culture. True, the person with dementia is “out of his mind” to the eye of the observer; but the causes are solely, purely physical: there is as yet no hope of recovery from use of medication, and – because there is no psychological element – there can never be hope of help from psychiatric treatment. I would just say “Alzheimer’s,” which doesn’t have those connotations, but all dementia is not Alzheimer’s, as my father’s is not; different causes exist, and the progression is not exactly the same, and it seems to matter to be precise.

“Vascular Cognitive Impairment” is his condition: dementia caused by a long series of “mini-strokes” – TIAs – that in themselves don’t leave the kind of lasting damage of a major stroke (the typical loss of muscle use, for example, on one side of the body), but over time damage the brain so that dementia occurs. (They are also likely precursors to a major stroke, of which my grandmother, Daddy’s mother, died when she was 90; Daddy will be 89 this summer.)

Dementia begins slowly – perhaps a struggle with numbers or more forgetfulness than comes with normal aging. But its progression is inexorable, and it is surely one of the most painful processes to watch a loved one endure. The puzzled look of a spouse who doesn’t seem to know you; questions like “Do we have any children?”; remarks about “my first wife” when you have been married for 63 years . . . The anger and frustration when you must take away the car keys or insist on a certain diet or give reminders to eat slowly or use the bathroom . . . The fear and sadness and shame in his or her eyes . . . The knowledge that this man or woman you love will never be better, and only worse is to come . . .

And yet these saints who suffer in seeing their loved ones suffer continue to love, to remember what was and to assure dignity despite the loss of return. They learn to speak patiently, to bring beauty, to give respect, to elicit laughter as often as possible. They know that love is not what they receive, but what they give, and they give without reservation. When they are weary and longing for a good night’s sleep, they rise without complaint to help a spouse to the bathroom; when they are berated, they give a hug and set aside the unintended hurt; they never fail to say “I love you” again and again, to offer the reassurance of speech and touch so desperately needed by the one who is losing his or her understanding and grasp of reality.

I stand humbled before these quiet, unknown saints and pray that I may learn from them the grace of giving.


Ralph said...

Dearest Beth,

Keeping you in prayer as you work through, and live through this present portion of life. We all come to this point, but it is always different, and our minds are caught up with so many questions, and so many thoughts that seem to run wild at times like this.

Found this on the Bayly blog, it's from Bill's friends.

Hope that came through ok.

May the Lord bless your week to come, and bring to you a peace that overcomes all of the difficulties.


alaiyo said...

Thanks, Ralph! I enjoyed reading Phyllis's letter; a good encouragement and reminder that we are all only human -- we can only do what we can do and must leave the rest to Him.

I am enjoying a wonderful morning with Daddy today while Mother is out; he is unusually lucid, which it seems to be a special gift to me to hold onto for the future.

I appreciate your prayers so much.

Cindy said...

The mini-strokes are what Great Scott's grandfather went through that caused the slipping of his memory and reasoning ability, and looking back, I marvel at how well his grandmother kept things going and made it possible for him to stay home with her. Blessings immeasurable on your mother and dad, Beth, and on you. May many good memories be made during your visit, memories that your father will retain deep in his heart, even if the mind may misplace them sometimes.

Funny, isn't it, how we can lose the identities of those closest to us, but usually the memory of kindness lingers, even if the name fades. (At least, this has happened with several people I or my family have known.)

Much love,

alaiyo said...

So true, Cindy. Long after my father-in-law had lost names, he reacted with joy to his wife's entrance; she was often the only one who could get him to eat enough. Daddy is like this with Mother; sometimes he misplaces her name or even exactly how she is related to him ("Where is my mother?" he asks me at times when she is out of the room), but he lights up every time she comes in or speaks to him or does something for him. 65 years of marriage can't be lost, no matter what else is!

Thanks for your prayers, my dear friend.

Tim said...

Thanks Beth, very moving. It reminded me of the lyrics to a song by the group "River":

He's up and ready to go by 8 a.m.
On his way to see his best friend
For two years, he hasn't missed a stride
To the nursing home to see his lovely bride

For sixty years, they've held each other close
And now the time has come to let go
He still recalls the promises they made
So long ago, on their wedding day

I will always love you
I will be faithful
I will be there through each and every storm
As sure as there's a heaven up above
I will always love you
My love

Some days she can't remember his name
But she holds onto his hand just the same
They've learned to speak with more than just words
And she knows just what he's saying as he wipes away her tears

He watched her as she slowly slipped away
And said "I'll see you again in heaven some day"
He got down on his knees and gave her to the Lord
He kissed her one last time as he whispered the words

I will always love you
I will be faithful
I will be there through each and every storm
As sure as there's a heaven up above
I will always love you
My love