Ventilator-Assisted Living©

Fall 2005, Vol. 19, No. 3

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Her Life: My Caregiving

Jeffrey D. Sadow, Bossier City, Louisiana (jsadow@pilot.Isus.edu)

Caregiving for a full-time ventilator user is expensive and potentially time-consuming, and those are its easier demands. As with so many activities in life, much of what goes on in caregiving revolves almost exclusively around time, energy and money.

While personal care tasks are specific for each individual, mine include transferring Deshae from bed to wheelchair to toilet to minivan, driving her to medical appointments, administering medicines orally and through a nebulizer or portacath several times a day, suctioning her airway multiple times daily, changing her trach tube as often as daily but more often weekly, using devices to simulate cardiopulmonary therapy and coughing, assisting with range of motion physical therapies, all personal hygiene, dressing and grooming, and meals and feeding. Then there is the maintenance, cleaning, adjusting or otherwise tending medical equipment, including Deshae’s most animated one, her service dog Ulina.

I am blessed with the strength and ability, because Deshae is petite and lightweight, to lift her without the assistance of another person or a lift (this fact may change as we both age). After much practice, I can flip up skirts, pull down underwear, etc., all while holding up Deshae midway in transfers from her wheelchair to the toilet and back. This avoids the need for catheterization and for adaptive clothing.

Another reason I can tend to Deshae on my own during transfers is that, at this time, she can spend short periods – about ten minutes – without using the vent; if air quality is good and she lacks severe pneumonia, with effort, she can manage an hour or more.

So far no one is required to use an Ambu® bag during her disconnections from the vent or to hold the vent tubing to keep it connected to Deshae while I lift and move her. If she could not breathe for herself at these times, we would require more assistance.

Something else that helps reduce our need for outside assistance is that, with the trach cuff deflated or with the trach capped, Deshae can speak and greatly facilitate task direction and accomplishment. With her prodigious mental energy, she handles the business aspects of her health care.

Between that and her physical and pulmonary therapies, Deshae clocks nearly a full-time job on basic survival tasks. This is in addition to her work with LSUS.

photo of Deshae and JeffreyCurrently, I am Deshae’s sole caregiver more than 140 hours a week. Many weeks we have 16-26 hours of help from a privately paid nurse; all four of Deshae’s health insurance plans deny hourly home health coverage. Fortu-nately, my job is flexible and allows substantial opportunities for telecommuting, but Deshae needs another caregiver when I must work outside the home or perform routine tasks such as grocery shopping. As any primary caregiver knows, help from others, either paid or volunteered, is vital – you cannot do it alone.

Volunteers to help primary caregivers of vent users would be wonderful, but several factors deter people from volunteering. (And some of these apply to paid attendant/caregivers.) First, knowing someone’s life potentially depends upon your reactions creates a high-pressure situation many refuse to accept. Second, some people may be uncomfortable dealing with the physical aspects of vent life, such as suctioning. Third, adequate training can take more time than people can give and may prove overwhelming. Fourth, people may be uncomfortable performing unpleasant tasks at another’s behest – tasks that can require substantial time, energy and conscientiousness. Fifth, willing volunteers (Deshae’s grandmother) themselves may be too frail to handle the physical demands of the task.

Finally, and perhaps most important, there is the absolute uncertainty about how controlled your life will be at any time by the needs of the vent user. While somebody is in your care, you never know when your life will be disrupted, while at the same time you know you cannot escape this without potentially risking the person’s life.

Any number of things can intrude upon your lifestyle, without warning. This includes while you’re sleeping; you must awake immediately and make the proper decisions to avoid or to reduce the severity of a crisis. Bluntly and understandably, most volunteers psychologically do not want to place themselves in this position for any extended period.

All of the above factors bring me to paid attendants/caregivers and money. To perhaps over-generalize: wealthy families can afford to pay large sums out of pocket to obtain excellent care; poor and low-income families have all their needs paid for by the government and receive adequate or low to adequate care; and, for the rest, private insurance may be able to provide adequate care, but any gaps in coverage threaten to send such families into poverty (at which point they qualify for government coverage but often only if the primary caregiver divorces the spouse or quits his or her middle-class job).

Deshae and I fit into the last category. For others in a similar situation, I advise you to inform yourself fully about government programs and legal instruments (such as a special needs trust). For most middle-class Americans facing long-term vent life, it is largely up to you to seek the means to help yourself maintain even a semblance of your former quality of life.

Helpful information often is sparse and uncoordinated. Insurance companies wishing you weren’t costing them far more than your premiums pay will have to be dragged kicking and screaming to fulfill their ends of the bargain. The incredible inefficiency of government-directed health care financing will frustrate you. But with much persistence and energy, you may be able to secure good quality care.

Given all of the drawbacks and demands and displeasures, why do I help my wife endure vent life? Because, for better or for worse, I will give all that I have to maintain the presence in my life of that “pearl of great price.”

Read the accompanying article ...
His Choice: My Life by Deshae E. Lott, Bossier City, Louisiana.

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