That phrase, “It takes a village” usually refers to the value of having a cohesive and extended group to raise children in a benign fashion. However, of late, I have been realizing that this is equally true of the task of taking care of the elderly. My own 94 year old mother lives in a city thousands of miles away from me. Yet I feel strongly my responsibility to care for her. I am fortunate in that I am healthy enough and can afford to travel several times a year and spend up to a month with her at a time, helping her deal with the trivial and not-so-trivial needs of life. Additionally, my brother, who lives somewhat closer, though still a plane ride away, can also come for shorter periods several times a year. And there are my cousins who live in cities closer still and occasionally stop by to visit or take her somewhere.
But even with these advantages, as time goes by, and her memory becomes less and less reliable, we find challenges that only someone on-the-spot can deal with. Today, I got a text from one of the many people contributing to her well-being. Tara, a woman in her 50s, had come by to visit. My mother was struggling with her fear that she would run out of one of her medications before the end of her upcoming visit to see me; Tara became involved in trying to solve this problem, texting me with questions about pharmacies in my area. In fact, I had taken the extra medication with me (at my mother’s request) to increase the space in her luggage. But Mother had forgotten; and I had not thought to write it down for her on the packing list I’d prepared for her. Last week Fritz, whom we refer to as ‘the man in the basement’ because of Mother’s growing inability to remember people’s names, called me with the same concern about a different medication that was likewise safely already here. She’d also forgotten that one.
Fritz initially rented an already over-stuffed basement apartment at my mother’s house, with the loose understanding that he would visit with her from time to time—to alleviate her loneliness and respond to her very outgoing personality, which craves companionship. Last spring, we had found a student, Zizi, to live in one of the bedrooms upstairs, with a similar, more explicit idea of providing Mom with some companionship. But that had not turned out entirely satisfactorily. Zizi was very busy with her schoolwork; and had a very introverted personality. Although as a nutrition student, she was able and willing to stock the fridge with nutritious foods ready to eat—another rather vital service—she was not able to address Mom’s need for interaction.
So when Fritz came searching for housing a few months back (via a neighbourhood internet group), Mom decided—with agreement from my brother and me—to try having a second co-resident. Fritz is quite outgoing and personable; and so far, they are getting along famously. Recently Fritz had some unexpected financial obligations, and Mom offered to give him free rent in exchange for more active involvement in her care. As a novelist, he is interested in experiencing strange new relationships, and has expressed his willingness and interest in performing this part time caretaking role. We are realizing that ensuring that she remember her medications (many pills, some heart-related, as well as three kinds of breathing aids) must be part of this role. We will see in time how it evolves. A former Japanese exchange student who has been part of our lives for decades has resurfaced, and is also providing some help.
Meanwhile another recurrent need that my mother has and that I cannot fulfill from afar is for transportation. She had for years been able independently and spontaneously to go wherever she wanted in her own car—an ability she used daily. Three years ago, her deteriorating eyesight (she sees double) required her to quit driving—a decision thankfully she made for herself. The adjustment was terribly difficult as the alternatives to independent driving all require considerable advance planning (not her forte). Over these three years, she has found three sources of free or very inexpensive transport: the metropolitan area’s public van for the handicapped; a volunteer group called ‘RideConnect’; and participation in River West, a volunteer group connected to the national Village to Village movement (which tries to help the elderly stay in their own homes). She has also become much better at planning ahead. But remembering what she has already arranged is not easy for her. Indeed, given her memory troubles, she has done remarkably well, with the aid of a calendar she consults regularly. How long she will be able to manage this complex task remains in doubt.
Fran, a neighbour and friend, usually takes her to church, and she has two other people she can call on, when Fran is out of town. Fritz has been free every Monday, and has been able regularly to take her to one of her three arthritis swim classes; the other two, she has to arrange every week. Physician visits are frequent, as are monthly or biweekly social gatherings. There are a number of women she knows who can occasionally be counted on for a ride or a visit. Her congeniality and good humour make this option more available than it would be for many elderly folks. She has had to learn to be more explicit about her needs than she ever was before she began to lose these various abilities (remembering, driving, walking without help). And the rest of us have had to learn to ‘go with the flow’. The aging process is not a straight, linear process; it’s one of fits and starts, forward motion and backtracking, so that one never really knows what one will confront.
A few years back, I was sure that her mind was completely going. She would repeat herself routinely, forget everything, and get terribly confused. Her whole personality seemed to be changing to one that was quite self-centered (very unlike her usual self). At the time, I felt a sense of real grief, of loss; I felt that my mother was no longer with us. In August 2016 though, she was in a terrible automobile crash, breaking 8 ribs, and covered with bruises and abrasions. Although this experience was painful, it seemed to jar her brain back into better functionality; and she has been much more alert and active in her own care ever since; her social skills have returned, by and large. On a day to day basis, also, there is variability. One never knows just what sort of competence one can expect from her.
These emotional and cognitive changes are exacerbated by the physical changes that beset her. Her vision can be partially corrected with glasses, one for distance, one for reading. Her hearing can also be enhanced, but not truly corrected, by hearing aids. Glasses and hearing aids disappear regularly, a problem exacerbated by her memory loss. Her ability to walk is severely constrained, as she has drop foot (meaning that one foot is rather uncontrollable). She resists the repeated urgings by professionals to use a walker all the time. Her house is crowded with things and furniture, so there is only a limited space she can maneuver with a bulky walker. Such physical ailments (and more) mean regular visits to medical professionals of various sorts, all of which require further transport.
The Village to Village movement, mentioned above, is an encouraging development. In Portland, Oregon, where she lives, there are several, related, geographically focused organizations. Hers, River West, is new, a little over a year old; and requires a membership fee of around $400/year (something she can afford, but many could not). We have a similar organization, Love Living at Home, here in Ithaca, New York, which I joined as well (similarly fee-based and new). These are networks of elderly individuals willing to help each other and draw on the skills of the group as needed. Each organization has a part time coordinator, who works with the help of the members, to link those in need with those who can fulfill the need. They offer transport, help with simple household tasks, small repairs, comfort and companionship, all subject to volunteer availability; and they organize some social, educational, and entertainment events. These organizations represent an encouraging trend, though the cost ensures that they are primarily a middle class solution—largely unavailable to the many elderly in financial need.
More and more of us will find ourselves unable to do the normal tasks of daily life, as our bodies and minds betray us. And similarly, we are likely to find ourselves living at some distance from those we love, whether potential caretaker or recipient of such care. Moving the elderly from their homes is traumatic and often resisted; and research shows that many die quickly after such moves. I took my mother to some adult daycare facilities, as one option we considered. She was not impressed. Assisted living is expensive, as is hiring caretakers. As an aging and mobile society, we will have to develop ever-more creative solutions to the problems exemplified here. My mother’s situation, difficult as it is, is infinitely easier than is life for those with worse health problems, less money, fewer social resources, and/or a less appealing and resilient personality. Those of us taking care now must think seriously about solutions, as we too shall soon need such care ourselves.