Aside from my children, my two most favorite people are Brian my husband and Diane my sister. Aside from children, the only people for whom I have provided care are Brian and Diane. And, aside from the facts that they were in the position of needing care and needed it at the same time AND lived 2000 miles apart, the opportunity to provide care for each of them was ideal.
I love them. Neither had pointedly diminished mental capacities. Neither had (at the point when I was providing care) lost bladder or bowel control. Both feel tenderly towards me. Both respond protectively towards me. I have a relationship with each that is intimate, relaxed and authentic.
Because of this, I repeat, caring for my 'patients' was ideal. I know professional caregivers are under different circumstances. I know family members have to care for less pleasant 'patients' than I have. And I know the care I have provided has been extremely short term. So, for the third and final time, my caregiving experiences are ideal.
Providing care merely was a natural response of love I have for two people who have loved me unconditionally since the day I met them. It was easy.
It was hard. In helping them with basic needs--meds, toilet, shower, clothes, memory, bed--there was nothing awkward about being together, but their very need made them each vulnerable and somehow reduced. There is an almost innate loss of dignity in being unable to independently do the self-care tasks we mastered in our first years of life. As a caregiver, it seems important to give yourself to a degree to BE the person for whom you are caring. A caregiver needs to BE the 'patient's' hands, doing for them what they cannot. There is a corresponding non-physical element of self that is turned over to the patient to help restore that dignity. It is unspoken and even undefined.
This unspoken component is a forever bond between caregiver and patient. I actually see this play out more in the care that my other family members are giving my sister. Through bits and pieces that are revealed, I am seeing only that there are large portions closely held in obscurity. I myself shield Diane and Brian by never speaking about some of our time together.
Caregiving seems such a quiet thing. Even the one being cared for will never know what the caregiver does. They don't need to. It isn't about you, and they are going through plenty without needing to comfort the caregiver.
This moratorium on discussion may be no burden to some, but for those of us who tend to process life through the use of words, it can be a challenge. But that is the nature of caregiving: it is all about self-sacrifice. The motto? "It's not about you."
For the purpose of caregiving, these are the facts, whether they are true or not: You are not sick. You are strong. You are well-rested. You have energy to give. You are clear headed and organized. You are patient. You are clean. You don't have anyplace more important to be.
I found that even when there were truths to contradict these facts, the facts remained. I may have been tired, but it didn't matter when the meds alarm goes off in the middle of the night. I may be behind in my own med schedule and feeling a little wobbly, but if they were in immediate need, I was going to be able to wait until their need was met.
And the ultimate fact that supersedes all others? You never judge.
I may not choose something for myself, but I just could NOT stand in judgment of their choices. It would have jeopardized the trust that was essential to providing the best possible care. They were already so vulnerable. You simply don't pick at someone when they are compelled to such extreme exposure. If you have any issue with that, all it takes is half a second of imagining someone into your own most personal world.
Caregiving is holy. It is what Jesus does. It is ultimate scut- and servant work. You do the work so intimate that you are bonded by non-disclosure agreements--before there was ever such a thing. You are a living sacrifice, you lay down your life for a friend. There is no greater act of love. (Romans 12:1, John 15:13)
There is a caveat, of course. Since we aren't actually Jesus, we cannot give ourselves wholly in the way He can and does. We do have needs and we do have weaknesses--one of which is an ability to turn caregiving into something unhealthy. How like humanity to twist something so good and holy! But that is what co-dependence and enabling are: perverted caregiving.
It is important to set boundaries. We must rely on God and direct our patients to do the same. We must keep our eyes on the goal of health, for ourselves and our patients. That plays out in taking care of our own needs and pursuing activities that maintain our full personhood. It means not designing a situation that sets us up as being irreplaceable. For our patients, we must encourage their self-care in the instances that they can carry out the tasks. We must strike the balance of being dependable without creating a false dependence to stroke any personal desires to feel needed. While we may rest comfortably in the role of servant, we cannot allow our identity to be bound up in being any person's provider. We each have one Provider, and trying to step into His shoes is folly best avoided.
Nevertheless, I see caregivers as secret superheroes and feel as though if one were to look long enough, ethereal capes would become visible and flap inaudibly in otherwise imperceptible breezes. Those capes shield their charges and mask the unspoken provision one person is humble-honored to do for another in need. The cape elevates the superhero above the busy distractions of this life to an unseen dominion that reminds us of what life is all about: relationships, interdependence and love.