One of my dementia clients is very, very sad. Alice is 100 years old. She’s not quite five feet tall, and has always been a very active, energetic person. Over the years I’ve been visiting with her, she’s told me repeatedly that she weighed just 2 ½ pounds when she was born, surviving against all odds. She went to work immediately after graduating from high school, and moved from the small town where she was born to the “big city” of Austin as soon as she could. She worked for 26 years at the same bank, holding a variety of jobs, from teller to head of the safe deposit department. Her description of trying to control the gigantic vault door, especially given her diminutive stature, is both vivid and delightfully amusing.
She married the love of her life and best friend, and together they raised a fine son who calls her every night to check in and make sure she’s okay. She and her husband spent wonderful times together camping and fishing at their little cabin on the lake, and later driving all over the country in their motor home. She told me about the time she was forced to surrender a precious bag of homegrown tomatoes from a roadside stand when they crossed a state line that didn’t allow importation of produce. She “learned my lesson and hid my tomatoes after that!” She has fond and happy memories of those times, and dearly misses her husband who passed away several years ago.
Alice’s hobbies included knitting, crocheting, playing cards and reading, among other things. Later in life she joined a women’s tap dancing troupe, and “just loved to dance!” She also loves to walk. Supported by her walker, she parades up and down the hallway of her residence, and if someone is with her, she can go outside to stroll around the garden “and listen to the birds.”
But sadly, in addition to dementia and the hearing loss that’s typical of people her age, Alice has also lost virtually all of her vision. Consequently, most of the activities she has always enjoyed are no longer available to her. And her advanced dementia pretty much rules out learning anything new. (Somewhat ironically, the activity I can offer her – music – is not something that has much appeal for her.)
So Alice is bored. This vibrant, pint-sized powerhouse is horribly, painfully bored, which has put her in a pretty dark state of mind that makes it hard for her even to enjoy conversations that used to delight her. She receives excellent care in a wonderful facility, and while I’m not privy to her medical treatment, I feel sure that she’s being given whatever pharmaceutical intervention is appropriate. But that doesn’t relieve her boredom. Lately her refrain is, “I wish there was something I could do!”
Therein lies the rub. And it’s something I’m seeing more, the deeper I move into the world of dementia- and elder-care. That is, people who have been “doing” all their lives, can no longer “do”. Pretty much all that’s left is to “be” which, if you’ve ever really tried it, isn’t as easy as it sounds. (To read about my own challenges with this, check out my post from a few years back, Do-Be-Do-Be-Do.)
But as I struggle to offer something meaningful to Alice and people like her, I take comfort in the advice of a dear friend who is a professional therapist and also one of the wisest people I’ve ever known: If all she can do is to “be”, then “be” with her. So I “be” with Alice in her boredom, in her loss, in her sadness. Because sometimes “being” is really all anyone can do.
Addendum (Aug. 4, 2016): I just came back from visiting with Alice and she was in the best mood! Happier than she’s been in about six weeks! She was chatty, laughing, and very glad to spend time with me, sharing her favorite memories. I don’t know if some meds kicked in or what, but I am thrilled and had to share the good news!
Addendum (Sept. 12, 2016): Days after the addendum above, Alice slipped back into despair, sobbing almost continuously and saying she wanted to die and “get out of here”. During our weekly visits, all I could do was hold her hand, remind her she was loved, and continue to “be” with her. This morning at midnight her prayers were answered and she passed away. I hope she has gone to join her beloved husband and continue their adventures! I will miss her terribly, but my heart is soaring at her release.