My wife and myself have been caring for Flora, my mother-in-law who has had progressive dementia, for nearly 8 years. Today is February 2, the day of her 79th birthday.
Following morning meditation and the taking of an early respite of coffee and toast, Flora was changed and bathed, which is a two-person endeavor. It is a process of holding her up and walking while providing a lot of physical support. Even though she is now spending a lot of time in bed or in a wheel chair, we walk with her a short distance from the bedroom to the bathroom so she doesn’t completely stiffen up or become more arthritic with resulting pain and discomfort. We move with her slowly and carefully to avoid a fall or syncope which is defined “as a syndrome characterized by a relatively sudden, temporary and self-terminating loss of consciousness; the causes may vary, but they have in common a temporary inadequacy of cerebral nutrient flow, usually due to a fall in systemic arterial pressure.” Holding a 4’8″, 80Lbs women whose legs just collapse under her while the rest of her body is totally “dead weight” is not an easy task, challenging strength, balance and stability even when two people are involved trying to avoid a minor injury or broken bones.
Now the absorbent, cotton-like paper brief renewed, clothed warmly with a cotton pullover, sweater and sweat pants, we sat her in the wheel chair and brought her to the table. Looking out the large kitchen window at last night’s 15″ snowfall will require significant work and effort to clear our driveway, parking area, walkways and drainage swale. The snow awaits me unmoving and patient while the wood and propane stoves efficiently warms the kitchen and the other rooms in our home.
On this special morning, we proceeded to made her another espresso coffee to go with the tiramisu cake from Whole Foods with layers of whipped cream, powdered chocolate between a type of light, airy angel food with dollops of whip cream and swirls of sculptured dark chocolate, with a single blue candle on top of this marvelous convection. Even though she is not to be fully cognizant of the occasion, she seems to enjoy the tastes of the cake and the addition coffee following our duet of Happy Birthday. Since 8:30 texts, phone calls and FaceTime appearances from family members with well wishes, air kisses and loving sentiments have been streaming into our mobile signal which is being received by a fiber optic internet cable because our rural location is absent of cell phone towers.
When we lite the candle of her birthday cake, she did not respond to blow it out. Though sometime she will spontaneously just blow on my face, but this time, we helped with our breath. She did, however, commune with us in her own vernacular of gibberish and babble. Here, I hesitate to use the words struggles with or challenged by her dementia because on the surface, she seems to just be present in the moment without analysis or judgment, though at times she resists her need for care. When living with her daily needs as cognitive, emotional, physical changes are in a constant flux, you are always attentive, and yet, on some level your consistently making unconscious adaptations and adjustment to her care. These subtle changes often become conscious when the weekly hospice nurse makes a visit and asks probing, follow-up questions that tend to encourage new insight and specificity.
For most of us, we cannot access when our death will come but come it must from age, illness, or accident. So how does one under these circumstances care for an individual who surely will die soon while remaining true and attentive to the fullness of that life presenting itself in unexpected and unique ways. While caring for Flora in this fragile state of failing of body and mind, being attentive to the actualities of the moment is key, to let go of thoughts, and the transient show of mind, to slip fully into her present moment, to be aware with loving intent to the details of this life.