Stepping Into the River
by Sheryl Karas M.A.
Am I a caregiver wholeheartedly — or am I "doing the right thing" and suffering through it? Am I a martyr to a "good" cause? Or am I able to say "yes!" to the challenge and do whatever it takes to line up support and make changes in my personal life that will support me and my loved one through the perils ahead?
Mental attitude is everything in caregiving. Nobody goes into a marriage or brings a child into this world expecting to be another person's fulltime caregiver for the rest of their lives. Nobody chooses caregiving... at first. But on some level we all must choose if we are to make the most proactive decisions on our own behalf.
Those who don't actively take on the caregiving role tend to hold off the inevitable problem-solving as long as possible. They allow themselves to do only what needs to be done in the present, hoping against hope that a cure will be found and the patient won't get worse before they absolutely have to chart a course and pay attention to what needs to be done. Caregivers with this approach tend to go from crisis to crisis in a state of panic, buffeted about by any minor change in their patient's condition, unable to marshal all resources at their disposal and develop a plan of action that will be sustainable over the long haul.
On the other hand, caregivers who actively choose the role, who take it on as a job and decide that whatever needs to be done will be done can gather their resources and put together a plan of action. Together with their affected loved one, family and friends they can look ahead and decide how they want to proceed. In the worst case scenario, what kind of care would their loved one require or prefer? For example, does the family want to keep the patient at home as long as possible? How will round-the-clock care be provided? Who will do what? What financial resources does the family have to see this through? Should a financial planner be consulted? What needs to be put into place now so the desired level of care can be provided in the future?
Let Go of the Shore
The hardest thing a proactive family caregiver has to learn is how to let go of how things used to be. But those who accept that their loved one is losing abilities one step at a time and find a way to focus on dealing with the challenges-and pleasures-of the present moment keep their equilibrium more easily than those who cling to the past. I recently received an email message, proportedly delivering a message from the Hopi elders for the year 2001, that addresses this topic very well. It says:
"There is a river flowing now very fast. It is so great and swift that there are those who will be afraid. They will try to hold on to the shore, they will feel they are being torn apart and will suffer greatly.
"Know that the river has its destination.
"The elders say we must let go of the shore, push off into the middle of the river, keep our eyes open and our heads above the water.
"And... see who is there with you and celebrate."
I take from this message that one needs to "go with the flow" or drown. Be willing to let life be different from what it once was. Be willing to go on the journey knowing something of value may come out of it. And keep your eyes open and your head above water so you can see what's coming and who is there to help you.
Seeing who is there to help you means letting go of who you think ought to be there. Too many times I hear of caregivers who expected their children or their long-time friends to be taking a greater role and sadly find that help and companionship is not available where they thought it should be. Meanwhile they are surrounded by other caregivers in support groups and on-line chats — people who understand what dementia caregiving is like and long for a little human companionship themselves — who they never think to call to share dinner or pool resources to split the cost of respite care. A paid caregiver can often care for two or even three patients as easily as caring for one — but it requires organization and the willingness to try something that might not work. It is hard to let go of the shore. It's hard to embrace new friends or pay a stranger to come into your home. But clinging to the shore, in this case, means loneliness, overwhelm and depression. Is letting go really worse?
The last word in the Hopi quote is "celebrate." Most people don't think caregiving is worth celebrating yet I have met people who have succeeded in making the job of caregiving a sacred and ultimately positive experience. They do it from a place of love and, whenever the going gets rough, they remind themselves of why they have chosen it. They choose and choose time and again, always reminding themselves that they have a choice (their loved one could go into a nursing home, other relatives could be asked to take up the challenge). This feeling of choice gives them the ability to tap sources of strength otherwise unavailable. It enlightens their ability to make decisions on their own behalf knowing that they have chosen to be a caregiver and to do that job properly they need to be well-rested, well-exercised, well-fed, and well-supported. And if the time comes that they have to make another choice they do it out of love, knowing that their relative's well-being depends on their own. If the caregiver can no longer do the job without putting their own physical and emotional well-being on the line, the most loving thing to do — the most professional thing to do — is to deliver their relative into the safekeeping of others (other relatives, in-home support, nursing home or assisted living) who can take over where the caregiver cannot.
There are many times in life where we cling to how we want things to be instead of responding appropriately to what is actually happening. Seeing things as they really are is often painful. It requires sacrifice and readjustment. But it is far better to make necessary changes with your eyes wide open. When you step into the river with your eyes open you can find the most positive ways to follow current, avoiding the rocks, and even finding time to enjoy the scenery.
Caregiving Articles
A new version of this article can be found in Sheryl’s latest book The Spiritual Journey of Family Caregiving.
Caregiving Articles
© Copyright 2007 Sheryl Karas & Paul Hood