The day I got the call about my father's cancer recurrence I wasn't planning on managing the future of another person. We had a difficult relationship early on after my mother's death in 1972 when I was 9 years old and he was suddenly a widower raising 4 children on his own.
His grief and overwhelming responsibilities as a single dad crashed with my confusion and anger over my mother's death that led to a complete break down in our ability to communicate for many years. Our relationship was so strained and difficult that I was sent to a "boarding school" which was really a Catholic Convent at age 11 and from where I left to live in the US with relatives at age 16 and never to looked back.
Thankfully, after I became a mom and we both grew and matured spiritually, we were able to reconnect in the mid 90's and became great "friends" calling each other weekly and often exchanging long letters several pages long simply "catching up" and mending the emotional wounds and broken fences of my childhood and early adulthood without him by my choice. Soon enough I came to rely on his guidance, humor and emotional support as part of "sanity circle". When he was first diagnosed with Leiomyosarcoma in 1998 I sprung into action to "save" him from what I felt was a mediocre healthcare system in Puerto Rico. I had no idea what I was getting myself into but I was determined not to "walk away" again.
As luck would have it not knowing what I got myself into was a blessing in disguise and, at least for me and my father it was a very natural and loving transition in role reversal with me in the lead role of caregiver and decision maker. I think that time and geographical distance had healed the "conflicts" of our past and that the long winded letters and candid phone calls had eased us into a comfortable and relaxed camaderie that allowed us to be free from the complex dynamics of a power struggle for authority over life and death decision making. He got on a plane at my insistence and surrender his care into my hands seemingly without hesitation. We prayed on it together and even before we reached the hospital for his "second" opinion consult I was his healthcare proxy and held power of attorney over all his decisions but it isn't that easy and simple in most cases.
- WORKING YOUR WAY THROUGH ~~ Few of us are prepared for the enourmous challenge of making choices for another adult. Unlike children, adults have their preferences, habits, and goals fairly well established, and they are notoriously resistant to giving up control. No matter how well we think know someone, there are all sorts of finishing touches he or she expects in personal grooming, doing the laundry, handling finances and especially at mealtime. It can seem like there are thousands of ways to do the simplest task wrong, and only one way to get it right.
The other side of the picture is this: that a person who has suddenly lost mental or physical capacity is often aware that something is wrong. Such a person is often anxious to regain control of the situation. Small matters that would have been irrelevant once are now highly significant. Being able to decide how far apart the drapes should be drawn looms large as a way to impress one's will upon the circumstances of his or her life once more. Respecting the dignity of our loved ones while choosing what's best for them can be a balancing act that demands constant adjustments to the relationship we had with them before the impairment.
- THINGS ARE NOT THE SAME ~~ At first, I tried to behave exactly as I had before his diagnosis. But that was unlikely. He was my father and I had come to rely on him for guidance and advice. Obviously the terms of our relationship had changed and were now reversed. Me, the healthcare reform advocate with a perfect command of the english language and quite assertive when it come to dealing with medical providers and insurance companies, now his caregiver and decision making "director". He, the college professor, father, friend, intellectual and spiritual guide, now dependent upon my judgment for direction and survival ? A shift in power occurred.
Depending on the nature of your relationship in the past the new roles you will both play can be difficult to accept, painful to learn, and confusing to sort out. You may not be able to discuss this reality with your loved one because of a sudden onset of illness or disability. In some cases a progressive condition may lead up to a significant degree of disability we were not expecting or prepare for emotionally or intellectually to manage. But if you can have this conversation, it is a great gift to be able to talk about the shift and admit any discomfort you both feel about the strange new ground you find yourselves on. If such and understanding is beyond reach, it is necessary to acknowledge for yourself that the territory you are navigating is new and the rules have changed.
- IT'S NOT ABOUT YOU ! ~~ Fear, confusion, and anger are emotions that frequently accompany a loss of ability to determine our own way in the world. Touching our mortal limits is a scary proposition in the best of times, as when we narrowly escape an accident or recover from an illness. But when there are long term or permanent changes in our ability to control our bodies or our lives, we express our anxiety by every means still available to us. Some people will retreat into silence or depression. Others will lose their temper often or burst into tears unexpectedly.
Some people, like me, confront the suffering of their loved ones by total involvement; others go into denial and simply vanish. Expect nothing and forgive everything. Most of us are not the heroes we'd like to be, and crisis exposes our weakness. A middle aged mand we met at the hospital after my father's cancer recurrence in 2006 took to blaming his wife for all manner of faults and difficulties inplementing the decisions she'd made on his behalf, including the nursing home she'd selected for his continuing care. Though she came to see him faithfully every day he found fault with her in all things big or small and questioned her loyalty.
- A gentle woman of great religious conviction, she bore the insults patiently and commended his suffering and hers to God. She knew it was the cancer that was talking to her, not her husband, and his fear of death that forced him to howl out his rage in her presence. I admired her dignity and determination to hold on to the love and preserve the bows she took in the altar "to love, obey and honor till death do us part". I was very lucky my father was gentle God fearing man who gave me more love, support and understanding than I ever gave him during our final days together but you must be prepared to accept all possibilities in a personality shift during a significant medical crisis. Respecting the dignity of our loved ones while choosing what's best for them can be a balancing act that demands constant adjustments.
- GET WHAT YOU NEED AND ASK FOR HELP ~~ You don't need legal permission to hire your mother/father a housekeeper or to stock your neighbor's refrigerator. But when it comes to money and health issues, you will need to have the proper documentation to deal with the bank and the doctors with full authority. In some states, power of attorney for health care had been separated out from the authority to make financial decisions, so you may need to notarize two different forms to insure that your loved one is represented in both ways.
It can be a good idea to appoint one family member to manage finances and another to confer with doctors. Taking your loved one to every medical appointment, running errands (the pharmacy, the supermarket, ect.) household chores and/or supervising home health aids not to mention caring for your loved one overnight and during weekends can be an exhausting business all it's own. If a family member (spouse, mother, father or sibbling) can navigate the social security application process to establish benefits (SSD, SSI, Medicare and/or Medicaid) and make sure the checkbook is balanced, the electric bill paid and the mortgage or rent covered that can be a tremendous relief.
There are plenty of ways to make use of outside assistance. Consider any proposal of help, however unexpected and unlikely it may seem. If you are lucky some family members will want to jump in with both feet and run household, at least in the beginning. This willingness to help may pass, so be prepared for volunteers to roll in and then recede or in extreme cases fade away until one by one they disappear. In my case I got very little help so I went online to websites offering advice, services, books or direction to agencies that could help. Some of these resources turned out to be wonderful. Others were less useful. When someone is ready to help, it's best to see what that person has to offer before you decide to reject assistance as a matter of course.
- LET YOUR LOVED ONE DO WHAT IS POSSIBLE ~~ Mental and physical limitations aren't always absolute. Even someone suffering from paralysis and speech difficulties may be able to participate in simple decisions, like what should be included in the grocery list, the brand of soap preferred, or which pajamas to wear. I found that paring up the decision making process enabled my father to take a greater role in what would happen to him. Asking open ended questions --" what would you like for breakfast?" -- was confusing and caused stressed. So I learned to ask --"do you want oatmeal or eggs?" -- if he choose eggs then I could make another choice available to him --"scrambled or boiled?" --.
When we accept authority for decisions a loved one normally made alone, it's important to be aware of how much interest that person shows in the issues to be decided and proceed accordingly. Whenever possible and clinically sound defer to their preference and allow them to be actively involved in the discussion leading to the final decision made. Some people will give up command of domestic matters entirely without protest, but show concern for where the money is going. They may become apathetic during the long docto's conferences about the progress of their condition, but be acutely sensitive to a small loss of function. Yet others will want to have every medical detail explained. Listening, carefully, asking questions that can be answered with a simple yes or no, and patiently involving our dimished family member in the decision making process is the most loving and respectful thing we can do.
- TAKE HEART ~~ When a loved one becomes impaired and needs our care and protection, we may be just as emotionally confused by the new terrain as they are, but with a little time to adjust, spiritual guidance and some outside support, we will find our footing. It may surprise you to learn that you are stronger, more resourceful and more capable of handling the new responsibilities than we thought possible. As Saint Paul said , love "bears all things, believes all things, hopes all things, endures all things. Love never ends" [Corinthians 13:7-8]
About the Author: Wilma Ariza is the Founder of Stevie JoEllie's Cancer Care Fund a thyroid cancer awareness, access to care and free supportive services for thyroid cancer patients and survivors nationwide. The nonprofit organization was born in honor of her daughter Stevie JoEllie diagnosed with Stage II Follicular Variant Papillary Carcinoma of the Thyroid in 2008 a few weeks after her 21st birthday.