It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way.
-Charles Dickens, A Tale of Two Cities
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The close of caregiving feels very much like the start of A Tale of Two Cities: there is an awakening and a realization that time has become before and after. Caregiving lies in a middle that is both the best and the worst of times without end.
End of caregiving [Pixabay].
Big Changes
The world shrinks over time to just the needs of the person receiving care or the situation that takes up more time than expected. The choice to give care is tested by changes in the foundational areas of relationships, social circles, finances, health status, and faith.
Relationships. The large circle of friends and family members who are there during the before stage may drift away. Giving of care or being present is not a disease, but strolling on Facebook late at night sees many caregivers posting frustrations with the lack of family support, friend support, someone to just listen, someone to help with the bills, or someone just to sit with a loved one while the caregiver escapes to go grocery shopping for a few hours. Family dynamics are in the spotlight as the tug of war of responsibility for the one who needs care stretches out. Tales of caregivers who give up homes and drag minor children to live with the loved one to give care in that person’s home only to be kicked out by other relatives when death is near are not uncommon. No one expects to have to contact an attorney to preserve basic human rights, yet the journey of caregiving sometimes can have this side effect. One way to help might be to see who can help out the caregiver.
Sometimes it is not the change with friends, but with family members, especially if a marriage or a serious relationship is involved. Are both partners on board? Even when both partners say yes, sleep interruptions at night, unexpected finances, and decreased lack of couple time can take its toll. The pledge and promise traditionally given,“in sickness and in health” is tested with the introduction of a chronic or terminal illness for the partner or close member of the family. In my own caregiving experience, I found out very quickly how the commitment to caregiving can impact a relationship. My partner presumed that caring for a loved one would take less time and require less effort than it actually did. It’s not fun to be up seven or eight times a night followed by a full day of work. It didn’t take long before the relationship was over. Looking back, it was a really good barometer as to how much the commitment of caregiving meant to my own life journey.
Not all the relationship changes are negative;in fact, while the number of friends and family members who are present may dwindle, the solidity of those who remain and new relationships increases. The quiet friends or family members who have taken on the journey of caregiving at some point are the ones who come out from the shadows with gifts of wisdom, time, practical suggestions, and their presence. They are the ones who say “call anytime” and they actually mean it. If you call at midnight or 1am, they pick up the phone. They are there. These are the blessings of relationship during the middle of the caregiving journey. These are the individuals who may send text message jokes, flower bouquets, emails of hope, or the phone number of a plumber when you need one.
Social Life. At the start of the caregiving journey, it is not hard to find time to go out with friends or to keep what seems to be a normal schedule. Social identity quickly shifts into the label of “caregiver,” as everything revolves around the care and health needs of the one who needs care. In the middle, social life can often collapse. If the caregiver gets out, it is usually with the loved one, unless prior arrangements are made. Social events are scaled down. One woman compared it to when she was raising kids and her friends wondered where she went for nearly a decade: everything revolved around pregnancy, childbirth, infants, toddlers, and young children who cannot care for themselves. With long-term caregiving for serious illness or the elderly, the timing is similar. Enjoying a free night out with friends becomes more rare either due to financial limitations or just plan exhaustion. Just when the caregiver needs to have more stress relief through maintaining social networks, financial, emotional, or physical problems can make it more difficult.
There are many articles on the costs of caregiving. Some are geared towards having the loved one moved into a nursing home or assisted living facility as the only real solution; others point out the costs so that those who are in the caregiving phase or who will be shortly can figure out what can be done with all options. Until the stage of hospice, the options lend more to social isolation, financial problems. or both. One AARP article discusses the very real isolation that happens with caregiving.
One alternative that I found was increasing a presence on social networking, especially Facebook. Just type in “X disease” or “caregivers of X disease” and a list of groups will pop up. These are safe places to share the joys and problems encountered on the caregiving journey. Some respite care or other associations will hold daytime social events for caregivers. These luncheons remind the caregiver that he or he is a person first, an individual with an identity separate from just being “the caregiver.” Other options are taking the loved one to as many events as possible, which changes the social circle. There were times that anywhere I went, I took my mother: rituals, opera, literary readings, sci-fi movie nights, dinners, concerts, and classic films. Fortunately, we enjoyed the same things and had a similar sense of humor.
Just as there bright spots in relationships during the caregiving journey, there are upsides in social circles. Instead of going out, having people over or going to daytime events may become the norm. New friends understand the illness because they are caring for others or have cared for others during a similar time. They don’t expect you to have the perfectly clean and neat home, or they offer to come and clean. They might bring a meal instead of eating out because they know that the loved one might not be comfortable eating in public. The new friends are on the journey with you, and you are on the journey with them and their loved ones.
Financial. Giving care may mean giving up something else like a job promotion, working in a beloved career, or even keeping a full-time job at all. It is hard to work fifty or sixty hours a week and still give care without some compromise. This may be working from home more, sharing caregiving duties with other family members, finding adult day care or other respite care, or placement of the loved one in a home. In the before stage, the grey area between caring for someone who can live at home well and someone who needs to be in a facility is rarely discussed. It is a pitfall that occurs in the middle, when it may be too late to find other options. Articles often discuss the cost of a nursing home or the cost of an assisted living facility, yet caregiving continues even when the loved one is not in a family home. There is the time spent on a daily or weekly basis making sure that the loved one does not feel abandoned or that the loved one is getting the best possible care.
Unfortunately, the financial aspect of caregiving is like a roll of the dice: even when you think you are prepared for the worst with savings, living in a multi-generational home with family care, or long-term care insurance, you won’t know until you are close to the end whether it was enough. Even then, there may still be questions. We do not live in a society where illness, death, aging, and the complications from each of these are viewed outside of a rigid model that favors youth and good health. So in the end, there remains the question of whether enough time, money, or sacrifice was made to help the loved one reach and cross the river.
Health. Stress doesn’t take a break when caregiving. In fact, one of the biggest side effects of extreme caregiving is caregiver burnout. The tricky problem is that it sneaks up on you. How can you complain about aches, pains, lack of sleep, or crankiness when your loved one is ill or dying? Impending death outweighs the cost, at first. The desire to care may come from a place of love, a desire to serve someone in need, or a necessity;however, the reality of caregiver health is that many problems created through the giving of care may shorten the caregiver lifespan in the end.
Working out while caregiving is hard, but well worth it. One side effect of working through extreme caregiving was learning to build two care teams: one for the loved one and one for the caregiver. Normally in caregiving, the first team is obvious; after hearing multiple times about making sure to take care of yourself, then you remember that the second team is even more crucial to make the journey. A team for the caregiver can include doctors, chiropractors, acupuncturists, massage therapists, counselors, social workers, clergy, nutritionists, and anyone who is helping the caregiver keep body and soul together. One of the best parts of my caregiver team in the end was the entire hospice team. Hospice considers the respite for the caregiver an integral part of the loved one’s overall care. The person receiving care feels better and gets better care with a more relaxed caregiver.
Laughter is a great stress antidote that sometimes just has to be found. Finding some sense of humor, especially in the darkest moments, helps with keeping the stress from boiling over as much as possible. Funny movies or even just silly memes can break the tension.
Crystal Blanton’s column, “Seeking comfort and stress reduction in today’s times,” is another good reminder for those who give care that stress reduction helps with the major changes that occur.
Faith. Even for those who have a strong sense of faith as a rock can find the giving of care over a long period of time challenging. At some point, there is anger at the disease that can spill over into anger and frustration towards others including the self and the loved one. It happens. This is when faith is strengthened even as it is tested. My personal solution was to spend more time in prayer, to do more ritual, to attend more ritual, and to spend as much time talking with the Gods as possible. I spent as much time in various media sharing my thoughts, anguish, and pain with friends, family, and other clergy. The religion of the other person really doesn’t matter when discussing the despair and pain of caregiving. This is one area that can affect anyone and everyone.
One challenge personally as a caregiver was religion. My mother practiced Christianity. I do not. The normal offerings of having someone come by to pray or to speak with me as the caregiver or to pray over me were primarily Christian.
The solution was to cultivate more time with clergy in my own tradition or other traditions that fall under the pagan umbrella. This was not the time to be picky over whether the person followed a polytheist, Wiccan, Heathen, Druid, or other Pagan path. As a polytheist, I found others who could understand how to stay true to my own path without feeling overwhelmed by the religious monotheism standard represented in the contemporary health community.
At the same time, because faith is a universal quality in many, it was important to never reject the prayers or best wishes for the health and continued journey of my loved one or myself. When you are thirsty and in need of clean water, the source matters less than the actual water.
After. When the end of caregiving comes, one of the biggest side effects is the empty space in mind, heart, and life. Time curves, at times seeming not to pass at all, or at other times to be longer than days or weeks. There is space to reclaim identity and a need to re-claim the before, in the new space of the after. So much has changed during the period of caregiving that the first dilemma is where to start.
The path down to the underworld with the loved one may not be the same as the one back. Often, it is not. There may be a period when the desire to stay in the Underworld or that area is stronger than the need to return to this side. While it is very peaceful with the underworld, eventually there is a tug back to world above. Grief shrouds the individual with each step back and provides healing in its own way.
A path back [Pixabay].
Caregiving has indeed been the best and the worst of times. The side effects vary in length for each person. Anticipatory grief gives way to grief after a loved one’s passing. The bodily stress of extreme caregiving lends to time appearing to slow down or to speed up. Like the dawn of a new day, the caregiver emerges from a cocoon where the only criterion is the level of devotion and commitment to the task. A new frontier lies ahead, and it is truly the unknown. The questions of “Where do I go now?” and “Who am I?” resound in the emptiness left by the absence of active caregiving duties. Paperwork, funeral arrangements, bills, condolences received, and a slow return to work are surface actions that mask the soul’s journey back from a trip that will never be forgotten. The end is where the caregiver returns to caring for the self. That is the most difficult task as at times, the road back may not be a clear one.
If I knew five years ago what I know now, I don’t know that I would really change much. Except for the manual on the side effects. I would want a copy if there was one. In the end, the journey is universal, yet individual. As the end of formal caregiving signals a new year, there remain the same hopes that the end of an old year carries: the best of health, happiness, love, friends, family, and home.
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