Doctors, nurses, therapists, and all those serving in every medical and recuperative facility are all caregivers. What they do cannot be minimized. The significance of their roles in health care and health management serves a far greater impact in today's society despite and apart from what technology has done to modern medicine. Having said that, it is also worth as much to say that there is one area of caregiving that is not part of the regular conversation but is becoming more and more common as the percentage of the aging population and long term survival ratios from serious ailments are increasing.
While nursing homes and other iterations of assisted living are now integral to societies in the "First World" countries (a rarity, if non-existent, in "Third World" societies), there is a statistical, perhaps a noticeable phenomenon of more and more folks electing to remain at their own homes. This is looking through the lens or prism that has to do with caregiving that involves a family member towards another who has medical or health issues living at home. It does not matter what kind of health problem is involved, the family member/s who take/s up the role of caregiver in the day-to-day activity within that household is what I refer to as the other side of illness.
Just last week my wife and I were in the waiting room in one area of the hospital where they do specialty scanning and other radiology testing (including the somewhat ominous sounding section - "nuclear medicine"). The DAtscan procedure that my wife was going to have was for thirty minutes but the total time we were scheduled to spend there overall was for four to five hours. There was one hour of wait time after she had a full glass of water, before a radioactive tracer can be injected intravenously. Then we had to wait for three more hours before the actual brain scan which takes about another half hour.
In the first hour of wait time another couple came in. The wife was the patient but we at first couldn't tell by her cheery demeanor and a smiling face as she talked. She was scheduled for a series of tests. After a few more minutes, a mother and daughter came in. Naturally, conversation in a small confined area took on its humanly natural spontaneous course.
The older couple - I say older but I surmised we were about their age once they revealed they had been married for 53 years!; they in 1970; my wife and I in 1971 - were the epitome, just like my wife and me, of a growing number of couples living at the same home long after it had become the proverbial "empty nest".
The mother and daughter had a profoundly sadder story in caregiving. The daughter who has had cystic fibrosis since childhood just graduated from high school via homeschooling. Deeply heartbreaking was that the mother herself - the caregiver - was diagnosed with muscular dystrophy (MS) not too long ago. Needless to say, the mother intimated, both of them are frequent visitors to the diagnostic wing of the hospital. In her own words, "we know the drill" as they were ushered in and out by one technician or another to go from one test to the next. Every time they were back at the waiting room the poor daughter would just lie down and take a nap on the couch, only to be awakened again for the next test. One can't help but feel for both of them. But anyone who sees them go through it will have to be in awe of the mother. She worries, of course, about what it would be like once MS takes its toll on her. Her faith, she said, was what kept her going. She is the caregiver who sooner or later will need one herself once MS takes its inevitable progressive stage.
Every Friday from 10-11 a.m. at the local Baptist church I take my wife to a group exercise that is designed for those with Parkinson's under the auspices of the Houston Area Parkinson's Society (HAPS). There's about a dozen or so who attend; naturally, each is at different stages of Parkinson's and at varying ages. About half are men, although men with Parkinson's outnumber women by 2:1 in the general population. A physical therapist leads the chair-bound exercises although standing up and down is part of the routine.
Every third Friday of the month, in the adjoining room, there is a support group meeting for the caregivers while the patients are doing their exercises.
As in every support group meeting, the seats are arranged in a circle. The moderator sits in one of the chairs and we all can see and hear everybody. This was my first time attending. Every caregiver was a spouse - six husbands and six wives (in this particular session).
One husband came even though his wife was not there for the exercise because their daughter took her to attend another family member's social function. He obviously did not want to miss the support group meeting and I think I understood why from a one-on-one conversation with him later after the session was over. He found solace and comfort from the other caregivers like him - he sort of said that much - and perhaps he simply needed a break.
In cases when the caregiver is dealing with a significant other who has dementia or Alzheimer and other cognitive difficulties, the emotional and stressful complexities take their toll. It is so much tougher for the caregiver once what used to be a vibrant, conversation-filled relationship is no longer there while the afflicted partner may not be completely aware of what is going on to be emotionally or cognitively connected.
One caregiver husband is 87 years old whose wife is wheelchair-bound from a progressively advanced Parkinson's. In one of our conversations, he recalled that his friends back in the early stages of his marriage teased him about marrying someone quite a bit younger than him, a nurse at that, ensuring himself of a caregiver in his old age. Instead he became the caregiver from the day his wife was afflicted with Parkinson's from nine years ago. At 87, is he not one likely to have a caregiver himself soon? Such is another side of caregiving.
It is heartening that we see couples remaining in their homes, managing and coping as best they can. But it was heartbreaking to hear one of the wives talk, "Now, I find myself the one talking to service men, repair people and handymen who come to fix things in the house. It used to be that all I ever did with the car was put gas in it, drive and park it. Now, I'm the one talking to the mechanics and always worried about its maintenance. I am not just the primary, I am the only driver in our household".
There are obviously many more stories about caregiving, extraordinary sacrifices and the inevitable phenomenon of so called role reversals. Role reversal as in the example from the previous paragraph is also one circumstance seen where and when the children take on the role of caregiver to aging or ailing parent/s. Usually, this role is that of a daughter taking care of a parent; but daughters do not have a statistical monopoly of that role because sons are known to assume what is now referred to as reverse parenting. The challenges associated with role reversal are not so much about taking the parent to the doctors, making sure they are taking their medication or for them to be eating properly and on time, but dealing with the emotional conflicts that accompany "parenting in reverse".
Most common in role reversal is that of simply taking on what used to be the other spouse's role. Again, as exemplified in the paragraph earlier, there are challenges. Obviously, not only can we not cover everything on the subject, we cannot reasonably find one common rule to apply because each situation is different from the next. There is not one particular way anyone can claim will work in one situation to apply universally.
In caregiving within a household, the greatest need is of course that of the afflicted. That is what gives caregiving its nobility of purpose. And it is through the caregiver's embrace of the responsibility and dedication that allows for that nobility to endure.
Why it works cannot be explained in words. It is the summation of a shared life from the moment both promised each other, "for in sickness and in health", however many years ago that was. Below is a quote where I end this musing.
"Love is an action, but it is also a choice. Loving another sometimes means laying down the self and choosing the needs of another. When the rubber hits the road so to speak, it is then that these vows matter most".
----- Michele Treacy
What of my own personal perspectives, or views through the prism and lenses of my experiences? Regular readers have had a glimpse. These are in the Archive:
{Parkinson And "The Other Side of Day" 12/19/2022; "The Other Side Of Morning" 12/28/2022; Through The Eyes See You 07/11/2023; "For Kindness Begins Where Necessity Ends" 02/04/2022;}
What of those living alone? {The Vigil of the Lonely 07/24/2021}
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