As a young man, my parents were always healthy and it never crossed my mind that I would eventually have to endure a complete role reversal with them. The child takes on the paternal role of caring, nurturing, and coordinating the activities of daily living, and the parent becomes increasingly helpless. This phenomena becomes increasingly apparent as you yourself reach middle age, and witness so many friends and families take on the roles of primary caregiver of a disabled child, sibling or parent.
In today's health care climate, it's often the only viable choice due to the prohibitive costs of quality home and medical care, and the special attention a quadriplegic patient requires. On the other hand, no one will take care of your loved ones the way you would, so doing it yourself has many advantages as well as providing peace of mind to the family. Of course with my background, this kind of personal care for a quadriplegic is easy. However, I have trained many live-in caregivers over the years to assist me, and none of them had any prior medical background. Each provided excellent care, and allowed my loved one to live years beyond anyones' expectations. I realize each case is different and this article is not meant to replace a hospice nurse or a visit from a medical doctor. It will however give you an idea of what to expect if you considering providing care to a quadriplegic in your home.
Time: You have to first try to fathom the incredible amount of time it takes to care for a quadriplegic patient. The time spent can be divided up into two categories. The time you spend planning and providing care, and the time you spend being confined to the home because leaving them alone simply isn't an option. It can be done if there is a "stay home adult" such as a spouse, to help out. Remember, some patients require attention almost all their waking hours most days of the week, and some require considerably less, depending on the level of function. How is this possible? Consider the following points.
- Feeding: at least 1/2 hour per meal, but if your patient isn't a good eater, you may spend a few hours in food preparation, coaxing and spoon feeding and encouraging them to simply chew and swallow.
- Bathing: 1 bath a week burns up about 2 hours in bathing, grooming, dressing.
- Toileting: While a quadriplegic wears diapers, you may not elect to use stools softeners to the point where the patient poops in their diapers every other day. So toileting on a bedside commode is an option that can take about an hour or so per week.
- Laundry: Sheets, bibs, drool cloths, clothing, towels.
- Food Preparation: special diet? that takes time!
- Doctors visits: home visits by the doctor or nurse, or loading up the patient to take them to the clinic.
- Skin Maintenance: turn the patient every 30min to prevent bed sores. This is incredibly important
- Oral Maintenance: often overlooked, if you don't pay attention to this, the patient's healthy dentition will quickly decline
- Any other special medical needs
- Accounting and booking
- Other personal affairs
Money: It really helps if the patient has their own financial resources and insurance. I found that the initial expenses of setting up your home care is a little tough, but the monthly expenses aren't as bad. Here are some of the items I recommend. Some may be covered by your insurance.
- Diapers: You get what you pay for and the cheaper they are, the more they leak. Try large diapers, even if your patient is tiny.
- Formula or other special diet
- Special Clothing and gowns
- Hospital bed
- Special mattress: Air filled, self turning
- Suction device
- Oral care equipment
- Bedside commode
- Bathing equipment
- Medications, ointments, stool softeners, etc
- Other incidentals
- Caregivers on call to give you a break (respite care)
Physical Ability: To handle the care of an adult quadriplegic, you really have to be in good shape yourself. There is a lot of lifting dead weight, and a back injuries to the caregiver is a very common occurrence. In addition, physical strength to simply turn the patient, pull them up in bed, change their clothing, transfer them from the wheelchair to the bed, or toileting, all takes a lot of physical stamina. With that in mind, consider this. Do you have the stomach to change soiled diapers, give sponge baths, do oral care in a mouth with rotten teeth, feed the patient through a tube, suction mucous, etc.? You don't want to put yourself and your loved one in a situation you both suffer from and can't get out of.
There are many resources to help you out with many of the above issues. If your loved one isn't yet ready for hospice care but is still gravely disabled, most insurances will cover home nurse visits in what they call a palliative care program. These usually consist of RNs that will come by every now and then and check on the progress, do a medical assessment and help you in finding a solution taking care of your patient at home. So if you decide to go for it, know that you will be providing a service that no one else can. Love and care in a familiar family home and environment.