Dementia is a beast, there is no doubt about it. It is a thief that comes to steal and destroy. As I watch (and listen to) my mother’s frantic anxiety as her mind goes away it’s laughable to think that experts say that exercising your brain with hard thinking could keep dementia from finding you. From my vantage point that’s like saying you can think the dark away if you try hard enough. There is so much we don’t know, however, people who provide hands-on-care (as well as some experts) do know that well-accomplished highly educated people struggle more, struggle harder with losing their memory, their ability to think and reason clearly, and with losing the ability to maintain a solid sense of self. An extra crossword-puzzle a day will not fix this problem now, nor would it have kept it from happening.
My responsibility is sad and heavy. From quite a distance I provide the plan and the direction for my mother’s care. Care is a loose term as she is completely resistant to help. Her dementia has reduced her cognitive abilities by at least half and she continues to believe that this frustrating and frightening state of affairs is due to something that other people are doing to her. Her raging anger is justified, but clearly misplaced.
The people who provide the little care she will accept are members of her recently deceased husband’s family and a friend or two from their tiny country church. Of course, she doesn’t recognize it as care, so their ongoing presence in her life is acceptable and for the most part welcomed. On occasion they invite her over for dinner (but she is becoming disruptive), they spend their days off with her (outside because her house is seriously dirty), they pick her up for church (where her conversation goes around and around in an unhappy loop), they take her to the very small local grocery store (because she becomes grossly overwhelmed in the large supermarket a half-hour away). They take her to doctor’s appointments and will pick up her prescriptions when I let them know that the pharmacy called. They are like a silent army around her, trying valiantly to treat her like the person they remember to be. They check in with me by phone, texts, and email. We work together to do the best we can. I drive the 6-8 hours once a month and usually stay anywhere from three days to a week. One time I stayed a whole month. All of this strain and fear and extra effort of kindness and care have to happen because she refuses to leave her home for a care situation and because she can’t be placed against her will—not yet, and not without some catastrophe.
I do not mean to downgrade the efforts of these beautiful people by referring the “little” care she will accept. They are giving mightily and would do more if she would let them. But this means that there are no prompts for hygiene, no housekeeping or laundry being done, no one is allowed to clean the spoiled food out of the refrigerator, and no one is cleaning up after the animals who are not encouraged to use good in-house hygiene habits any more. And no one really knows what she eats or when. There is new danger everywhere when a person can’t remember how to turn things on or off, or how to lock and unlock. In our last phone call she told me that people have locked her out of everything in her house, that she can stay in only one room during the day, and the only way she can get out is to crawl under the door. (She speaks this as literal truth, but it takes some decoding to understand that it’s a description of how she feels.)
Sad. Frustrated. Often overwhelmed. All of us. Most of the time.
The local authorities say that she seems to be doing okay and that she’s not in clear danger. They might change their minds if they continued to hear and see what the rest of us hear and see. But it is what it is. I am grateful for my years of experience in the field of elder care so I know more than many people who are faced with a similar situation and I have a few more resources at my disposal.
And so we practice mercy—certainly the people who live around her continually show mercy in practical ways. I do the physical work while I’m there in her home, I clean (which upsets her but keeps her more safe), I cook beautiful enticing food (that she often can’t taste or recognize), I listen to her spiraling anguish (which goes on and on) and do my best to relieve her anxiety and redirect her to more peaceful thoughts. But the rest of the time I’m praying and searching for better ways to help her and keep her safe.
I’m not Catholic, but I set great store by many of the teachings of Pope Francis—no matter if you’re Catholic or Protestant or somewhere in between you will find that he does speak universal truths.
Last November he made a statement that went straight to my spirit, my heart. I am one of those who feel gifted for works of mercy, and whenever someone speaks about mercy in new ways I listen. I have his words on the desktop of my computer so whenever I open it I see …
Now is the time to unleash the creativity of mercy, to bring aboutnew undertakings, the fruit of grace.
He wasn’t necessarily speaking to adult children of aging parents with dementia, but the words certainly spoke to me. There is so much power and movement here—unleashing indicates that something has been restrained and that it’s longing to be freed. Creativity speaks to all kinds of empowered movement across the whole spectrum of the human experience. And beautiful mercy, so often thought of as only gentle and quiet, meek and mild is now shown as a power ready to break out allowing us to do new things that still, in the end, point back to grace. Powerful, innovative, creative work that makes way for kindness, compassion, and care that meets needs and changes the world. Sometimes it means pushing against the norms, envisioning new things, and taking risks in real life, other times it means being quiet and meeting needs in a way that is relevant only to the person on the receiving end.
That’s what I want. I need more of that kind of power unleashed for me, in me to find the way to get the best care for my struggling, lost mother when it seems like every avenue of help is closed. I need that unleashed power to better fulfill any and all of the life tasks ahead of me. I need that power to see and begin new things.
And so I pray and listen, ready for the next step.