Her husband’s Parkinson disease had progressed significantly since we’d last seen each other and her stress progressed along with it. The kitchen counter was covered with pill containers and dosing schedules; the wheelchair was sitting by the ramp to the car and her husband waiting patiently for his aide to help him get dressed.
My friend, let’s call her Mandy, barely said hello before launching into a description of the difficulty she had getting her husband ready for bed the previous night. Apparently, he sat in the wrong chair in the living room while watching a football game. The chair did not have the jack that would propel him to his feet. It took two hours to get him upright and ready for bed in a tiny room near the kitchen. He could no longer climb stairs to their bedroom. She was exhausted and near tears.
Her situation is repeated in homes throughout the country where one spouse or child or elderly parent is losing physical, and often cognitive, strength due to neurological diseases that get worse over time. My friend is one of the fortunate ones. She is able to afford the service of professional aides and a physical therapist because of insurance purchased many years earlier when they were both healthy. Someone much stronger than she is can carry out the actual “heavy lifting.” That person is experienced in how to move a body that cannot move itself without great difficulty. But like so many others, she is dependent on the aide showing up, and she has to scramble to find people to fill in on weekends and holidays.
The Family Caregiver Alliance, a non-profit organization that provides support for people like my friend, a so-called informal caregiver, states that the numbers of unpaid caregivers in the U.S. in 2015 is about 43.5 million. Their caregiving, if paid for, would cost more than 470 billion dollars a year. More than 75 percent of the caregivers are women, and more than two-thirds of those receiving care are also women. It is estimated that 20 hours or more each week is devoted to the needs of the spouse, child, or parent so the informal caregiving is akin to an unpaid part-time job, with few entire days off.
Anyone who has filled this position knows that the tasks range far beyond giving out medicine at the right time. Often the number of tasks increase to the point where the patient needs help in just about every activity of daily living, from dressing and undressing to personal hygiene and being fed, and the responsibility of running the household, paying bills, and making medical appointments. The must-do list simply grows longer as the impairment from the disease increases.
The toll this takes on those who give the care is well-characterized and predictable. Just about every aspect of life is affected: sleep, physical and psychological well-being, work, socializing, pursuing personal interests, and hobbies. They all give way to the needs of the patient. Simply getting out of the house to do more than a quick trip to the supermarket or dentist is a rarity for many.
Mandy lives in a residential neighborhood only a few blocks from a library, stores, restaurants, and a supermarket so she sees other people when she takes her husband for an outing in his wheelchair. And she manages to get to a yoga class once a week when her husband is with his aide. But she has rarely has time to work on a collection of essays she has been writing, and her former volunteering activities have been abandoned. But she is fortunate; at least she is able to leave the house a few times a week.
Some diseases are easier to deal with than others, but no one gets to choose. When the caregiver is able to still share an emotional and cognitive life with his or her spouse or partner, the caregiving is bearable. But if the patient is unable to communicate and respond to the caregiver, it makes the caregiving even more difficult. Despite that it is the disease, and not the individual, who is responsible for the changed behavior; it may be extremely hard for the caregiver to hold onto that fact when dealing with unexpected anger, depression, apathy and sometimes non-recognition. In a study of the emotional burden carried by the caregiver, Croog, Burleson, and their team reported that anger and resentment was a common complaint along with lack of personal time and social isolation. There are support groups for the ‘”informal” caregivers, and they are geared toward helping with the specific problems presented by a disease, for example, Alzheimer’s, Parkinson’s, or ALS.
Over a cup of coffee, Mandy told that that the one thing she did not expect, as her husband’s symptoms worsened, was being alone so much of the time. “We have many friends; we both lived in this community for decades. But very few come to visit anymore, and we rarely are invited to other people’s homes because of lack of wheelchair access. And some people just avoid us because somehow they don’t know how to act around someone with a debilitating illness.”
Fortunately, my friend is strong and resilient, an excellent manager and a person who is able to meet the unending obligations she encounters. But she, like so many others in her situation, would like to have someone who understands and can share with her the difficult emotions and conflicting feelings she is experiencing in fulfilling the “in sickness” part of her wedding vows.
She too would like some care.
Spouse caregivers of Alzheimer patients: problem responses to caregiver burden. Croog SH, Burleson JA, Sudilovsky A, Baume RM. Aging Ment Health. 2006 Mar;10(2):87-100.