Men as caregivers, and aftermath

By Christopher M. MacNeil

His name was Gilbert but everyone called him Todd. In 2012, two years after a heart attack that was not considered major, Todd was diagnosed with Stage 4 congestive heart failure and given a one- to two-year life expectancy.

With that and other diagnoses of Type 2 diabetes and renal failure, Todd was prescribed a half-dozen medications and medical devices to monitor daily sugar, blood pressure and oxygen saturation levels. In time, Todd’s daily medications increased to 13 and the number of his medical conditions to 21.

What might have been an intellectual disability was an ironic comfort in that Todd did not understand the full extent of his condition. But it also prevented him from understanding how to take his daily medications and functional readings and to get to and from one or two weekly doctor appointments. Those gradually increased to three and four appointments weekly.

It fell to Todd’s male companion since 1988 to take on the role of caregiver, a job that comes with no training, long hours, sleepless nights, sometimes dirty working conditions and no pay. The caregiver soon learned that he had to educate himself about Todd’s condition and how medications could interact with each other and create further complications. He learned that doctors don’t always explain what patients and caregivers should know to carry out a higher quality of care.

The caregiver also learned about professional and personal sacrifices. Working fulltime and up to 60 hours a week when Todd was diagnosed, the caregiver’s employer told him he had to “work around” Todd’s care because he, the caregiver, was “here to serve” the employer. Instead, the employer got the caregiver’s two-week notice, a sacrifice the caregiver has not regretted to this day.

Some friends of the caregiver became ex-friends with comments about the caregiver having to “wait for someone to die” before he could accept an invitation to dinner or a “night out.” Like the caregiver’s job, friends were readily discarded if for no other reason than their lack of humanity and compassion for a dying person.

The “deadline” of two years of life that Todd was given in 2012 came and went in February 2014. For the next 3 ½ years, he and his caregiver moved on with the daily routine of medications and appointments with doctors that steadily expanded to include a general practitioner, a nephrologist, additional cardiologists and an internist. At the same time, as his body weakened, Todd suffered sacrifices of his own. Always active and socially involved, Todd became unable to hit the gym at his beloved Y and to attend social functions and gatherings that he treasured.

As the number of Todd’s weekly medical appointments steadily increased from one and two to four and five a week, getting him to them and back home became difficult for both Todd and his caregiver. Those out-of-home medical appointments came to an abrupt and unwanted end in July when Todd was taken by ambulance to a hospital after a fall in his home. A day later, Todd and his caregiver were given the prognosis of the hospital’s chief cardiologist and transplant specialist: “maybe six months, maybe a little more or a little less” to live. He was returned home after five days in the hospital with hospice services.

Sept. 6, 2017, less than two months after being given “maybe six months” to live, Todd passed away. suddenly but quietly in a hospital bed in his home. For Todd’s caregiver, comfort came in the assurances by multiple medical professionals that Todd suffered no pain based on the lack of tell-tale signs on his body. The deeper comfort came from the same professionals and attendants who removed him from the home: Todd, they told the caregiver separately, was one of the most “peaceful” people they had seen.

Todd’s caregiver is left now not used to giving up the daily routine of tending to Todd and an uncertainty of how to move forward. Through the years and after Todd’s passing, well-meaning friends told the caregiver he now has his “freedom” and could “get (his) left back.” But the caregiver cannot remember the life he had before his role as caregiver, and he doesn’t care to remember.

The dynamic of one man as caregiver to another man was fodder for occasional murmurs by hospital personnel that Todd and his caregiver overheard during their long journey together. Most gossipers assumed the two men were gay lovers, explaining why Todd did not have a “woman taking care of him.” Neither Todd nor his caregiver were bothered by what anyone assumed: far more important issues were of paramount priority.

It wasn’t until after Todd’s passing, however, that the caregiver was informed by the hospice agency that it had a men’s support group consisting of male caregivers who had also lost the person for whom they cared. At present Todd’s caregiver has a call into the program’s chaplain to pursue involvement for group support and grief resolution.

On a deeper level, however, the caregiver has been given a treasured legacy that Todd left behind. Todd never complained that his health slowly stripped him of what had been an active professional and social life, and his example, courage and faith were inspiring enough that his caregiver does not regret or resent whatever it cost him to be a caregiver for 5 1/2 years. He instead tries to remember to be grateful that Todd survived 3 1/2 years beyond the time he was given in 2012.

Yes, male caregivers do exist and, yes, they need and deserve the support that female caregivers receive.

And yes, men do cry.