I would suppose over the years as a caregiver, I have had the honor of accompanying many in the last years of their lives. Some have been easier than others to work with. They being more lovable and very fulfilling, at least on the interpersonal and emotional level, to take care of. Others (?), well there are different levels of complexity. For personal problems, or issues, that have not been addressed in the earlier stages of life, tends to surface as one ages or grows weaker; either through disease or simple old age. For that is a time of transparency, being truly themselves; you get large doses of honesty, the good, the bad, and yes the ugly. This can be ‘down to the bone’ kind of thing. Trying ones patience to the limit and yes at times failing, but still trying to keep some kind of emotional balance during the time of care giving. For care givers, in order to be good at their job, have to be open to their own issues of power and control. In patient care, there are some things that have to be done for their own well being, even if they fight it. However this is only done for those who lose the ability to think on a rational level about their own care. This does not mean I will always agree with someone’s choices, but I will respect it if they show the ability to think rationally. For instances there have been times when those that I care for have chosen to stop taking their medications, and I had to comply, for they were not psychotic in any way. At other times, some have refused going to the ER, even if prompted to go. Yet they where in their right mind, and their wishes had to be respected. Even if told that their choices could lead to their death, they still persisted in their decision, which I acquiesced to. In my line of work, because I only take care of the elderly, it is easier to understand when someone comes to the conclusion that enough is enough.
Each relationship is very complex; each one can try the caregiver in ways that lead to self reflection, and the struggle to grow, so as to become a better companion for those cared for. There are times when patients need to be encouraged to express their emotions. So the caregiver needs to learn to be comfortable with not only deep expression of self that are sad, or depressed, but also those involving deep anger and rage. For these will often arise, often in dementia patients; for with them, what you see, is really what you get. Some patients will have times when they will simply cry, they perhaps not knowing the why of it; but needs to be nurtured and allowed to happen anyway. For we each have a right to our reactions, no matter what stage of life we are in. The only time interventions are needed is if others are affected negatively in the expression of powerful emotions. Usually in the context that I work in, they may just need to be by themselves for awhile, or perhaps in the presence of a caregiver who can be there as needed. Some need to be comforted, others simply encouraged to express what they are feeling. This is more often than not very helpful for the patient, allowing at least for awhile, some peace to surface.
From the start, it is understood that the relationship with the patient has only one outcome; death. For some, soon, others, it could take years. The main concern is making their last years as comfortable as possible. There is always some attachment and when death comes, always sorrow mixed with relief. The relief can be more intense when certain patients die. Also the level of sorrow different; there will always be varying degrees of mourning. I still miss some patients that I have taken care twenty years ago. Again others, I don’t miss at all. Yet it is impossible, at least for me, not to love those I take care of to some degree. It is not hard, for each one is unique, and it is truly an honor to be able to accompany them on their last leg of their journey, no matter how short or long that is.
Some I can develop a personal relationship with, others it is impossible, so the void left after one dies will differ, it cannot be helped. I don’t feel bad about this, for all I want to do is to help each of them as much as possible. I know my limitations, made peace with them a long time ago, and this has helped me in my work. For I am well aware of my lack, my failures, and my striving, which will always be with me; it is simply being human. Caregivers have to accept their humanity, yet still do their jobs. Some days are better than others. For anything worth doing takes a certain discipline to accomplish. I also know as I get older, almost 60, my abilities will change, my emotional reserves will lessen a bit, I will become fatigued easier. All of this I have to be aware of if I want to continue to do my joy in taking care of others, and not to become a hindrance. In some ways I have already begun the separation process, which will be completed in a few years or so, five or six years at most.
I fail in many ways, but that is only a spur to continue on my journey. One day, sooner or later, I will find out what is like to be taken care of. Hopefully I will not be too much of a bother, yet I do dread it. I would be dishonest to say otherwise. The thought of being cleaned by others, turned, fed, is not something I want to dwell on. Yet I also know that in reality it is a gift the elderly give us, to allow others to take care of them. It allows us to show love, compassion and yes empathy hopefully, which is healing for both parties. Each stage of life has its challenges. Those that belong to the latter years I think, is to be able to let go slowly with grace and courage. If not, well that is ok to, for it is the last purification, albeit a painful one, that those lucky enough to get there must face. So if I live long enough to be taken care of, I hope that I can be gracious towards those who only want to help……..my gift to them.
Those caregivers who take care of loved ones, family members, have a much more difficult journey than those like me who work with others. They are often left alone by other family members, and this can be a danger to those who have to carry the burden alone. It is not uncommon for a caregiver who is alone in their responsibilities, to actually die before the one being cared for does. The level of stress that they must go through is often unappreciated by other family members, until it is too late. This is often made more difficult because the caregivers themselves do not ask for help, desire it, and actually fight being given assistance. Families need to understand the compulsive side of care giving that can take over in these kinds of situations and be willing to help, even if grave difficulties are met.
There is a stigma about sending family members to a home. Yet in today’s society, in many cases, there is really no choice in the matter. It is better to send someone to a care facility than to try to do it on ones own, especially if it is something that can continue for years. The shame it not putting someone in a home, it is warehousing that is the problem, and should be a source of shame for those who forget their loved ones, and never visit them.
Nursing home care can be problematic, for often those who work there are underpaid, and over worked because of understaffing. So that can have a detrimental affect on care, though no fault of those who are the caregivers there. The majority are very caring people who work under trying conditions, so they should be treated with kindness and consideration.
Visiting loved ones can assure that good care is given and that their patient rights are respected and adhered to. Also showing appreciation to the caregivers can go a long way, for they are often ignored and looked down upon, even by those who have family there. In reality they are the back bone of the organization, so it is good to let them know that you notice the care they give your loved ones. Things like this can actually forestall burn out in some of them. I am lucky where I work, we have plenty of staff, and we are small. Sad to say, this is not true in other facilities, were profit is the main concern, or the only one. Yet there are many good facilities out there, more than the general populations knows.
For some care giving is a way to make money, not much, but it is a living. For the many, it is a calling, one done in love and compassion for their charges. Look and see, pay attention, and speak up, both for the good done, also for any infringements you may see. Above all visit, sit with, talk to and touch your loved ones.
Br. Mark Dohle, OCSO
Holy Spirit Monastery
