This was a morning that happens about once every two months, cleaning up a considerable mess. Once every two months is not often, for which I am grateful, but this time during the clean up I noticed how much muscle tone Cindy has lost. Even though she eats well, essentially the same as I do, even though she still appears to have a hiker’s figure, there are dimples where on an Expedition Woman there should be none.
I did not think I would have to witness any further physical decline in Cindy, since she could no longer walk on her own. Now I am mindful that, even when not visible, her muscular atrophy will continue because she cannot exercise beyond some very shaky, assisted walking and the range of motion therapy I provide. I also notice some weariness in Cindy now in everything we do, indicating an overall weariness with life. I can turn her wearied look into smiles with saying something like: “Does your face hurt? It’s killing me!” Yet I know the weariness is there and that saddens me.
Even so, I am fairly sure at this point I will be able to care for her here at home up until the end without getting depressed. How can that be? The most recent AARP magazine has an article about how Michael J. Fox deals with his own adversity, Parkinson’s disease. He cites six rules for himself: exercise, pacing, acceptance, honesty, optimism and humor. I’ve touched upon a few of these in the past for overall wellness; now as I ward off depression I have my own similar rules as these.
Sadness is inevitable when caring for a deteriorating loved one, but depression is not. The difference lies in for whom we feel sad. Feeling sad for others is part of our empathetic and altruistic nature, proven to be healthy; we are depressed when that sadness focuses on ourselves, proven to be unhealthy. All my sadness to date has been for Cindy, not for me. Optimism has and continues to fuel me.
Lately the greatest threat to my optimism has been mitigated. After I became a full time caregiver our debts exceeded our income, due entirely to mandatory housing costs. I knew how to remedy the income to debt ratio, refinance the home, yet I could not refinance because of our income to debt ratio, a perfect Catch-22. In February our home equity matured and my equity payment tripled.
I called National Iron Bank and stated flat out I could no longer make those payments. The bank manager lives two houses away from us; she was aware of our condition and said they already were working on a solution to keep us in our home, making clear the alternative was just as unacceptable to the bank. That’s small town life in action. I just got word the bank’s board approved an exemption to the normally hard fast rule for refinancing and I can breathe easy.
Small town life also accounts for the steady sixteen hours of coverage I get each week now. Six of that comes from an agency. I theoretically could get much more than that from an agency, but complications continually arise, despite five different agencies having been tried. Fortunately, ten of the sixteen hours are covered by friends who come to visit Cindy for a couple hours at a time.
During this coverage I am able to work on three projects: writing, which includes this blog; composing the “visual symphony” that will raise funds and awareness for brain health; and the world of discovery that awaits the next episode of my life. Working on such projects also contributes to optimism, while providing stimulating activity and purpose in ways that being a caregiver simply can not.
The importance of small town life for these “depression busters” is essentially the importance of people, for both me and Cindy. The best coverage for us comes on some Tuesday mornings. Occasionally both our pastor and music minister come and have their weekly meeting to plan church events right in our entertainment room, with Cindy as witness. Though she started out as a good Catholic girl, Cindy eventually became the senior deacon at our church. I know that church meetings held in front of her nurtures the strong feeling of belonging she has.
This is where I believe Michael J Fox made an omission from his rules. In the interview he clearly values the support of his wife and others in helping him though his journey. The belonging we have to the important people we have in our lives, whether from a small town or the world of a famous actor, makes all the difference in fighting adversity or depression.
I find the greatest challenge to caregiving and the greatest potential cause for depression to be boredom. Fortunately, my experiences as a long distance hiker has helped with this. Many folks equate such journeys with fun, exhiliration, pain or discomfort. Each of these occur, but they are not as constant as the reality that one has to hike day in, day out, to travel a long distance. The long distance sojourner breaks the journey into small parts, focusing only on one part at a time, in order to succeed.
Throughout the day Cindy and I have our “small parts.” Granted, these same “small parts” occur day after day, but I find that the day has passed quickly by the time we’ve cycled through all the parts until bedtime. On weekends Charissa visits, providing a marker for each passing week. I find that this “marker” seems to pass quickly as well and we’ve started a new week before I know it.
It’s not the challenging mountains nor messes that jeopardize our journeys, but the grind we face in between. Optimism, purpose, belonging and short term goals: these have been my rules for avoiding boredom and depression.
These are good things to remember whatever kind of caregiver we are. Thanks, Barbara
Small parts together make for a big life. The more parts you have the less chance for depression. Best wishes.
Nice philosophy Marc.