Life on Wheels by Gary Karp
Authors: Gary Karp
Tags: General, Juvenile Nonfiction, Medical, Health & Fitness, Philosophy, Physiology, Health & Daily Living, Physical Impairments, Physical Medicine & Rehabilitation
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about the adaptation of their home. As discussed in Chapter 7, Home Access, this may not be a simple matter of adding a ramp or putting in grab bars. Contractors may need to get involved, doors might need to be widened, lifts installed, or full additions built onto the house. Some people find they must leave their existing homes and find another more accessible place to live. These things take time—and money.
Equipment is another key to the discharge process, but the task of identifying a wheelchair is difficult to accomplish early in the rehab process. As Bonnie Sims explains:
In the first weeks of rehab, most people plan on walking out. The last thing they want to do is order a chair when they believe there will be no need for it. Power chairs can be especially complex. There isn’t sufficient time to prescribe, fund, order, and fit the chair prior to discharge. We do have a loaner system that makes timely discharge possible in most cases.
Many major rehab centers have special apartments designed as transitional living locations, but most insurers will not pay for a stay at such a facility.
Building a Support System
You want to create an environment for yourself that helps you continue coping. The choice of people you interact with makes a big difference.
Your relationships will change with some people. A disability has a way of flushing out relationships, of showing who is really committed to you as a true friend or even a family member, and who is unwilling or unable to accept you on new terms. There is both heartbreak and joy in this. You will find a deeper connection with some people in your life, and you will be disappointed in others, facing the loss of their presence because they are unable—perhaps only for now—to face their fears raised by your disability:
I found out years later that some of my closest friends felt my life was over once I had become paraplegic. A couple of them did not see me for years, and when we reunited later, they said that, at the time, it was just too painful for them.
You will also meet new people and develop friendships in ways you might not expect. You have control of who you interact with and in what ways. You have new priorities for maintaining your health and redefining an active, satisfying, and meaningful life. You have to choose how you need and want to live, give people you’ve known the chance to understand your new terms, and try to have enough people in your life who inspire you and support you.
Relationships take work. Expressing emotions to each other is part of the process of deepening your connection. Even if others grieve about your disability or tire of the caregiver role, keep communication open. The relationship can grow, so long as people are expressing themselves.
In her book,
Coping with Limb Loss
, 6 Ellen Winchell, PhD, describes aspects of a successful support system:
Our lives are enriched by emotionally nourishing relationships.
We are innately social beings who turn to each other in times of need.
Knowing people love and care about you reduces your sense of isolation and the burden of the experience.
One “best friend” is not a complete support system, but is an overwhelming responsibility for that person.
You are not a burden to people who care enough to want to contribute and will find meaning for themselves by doing so.
Accepting support is not a matter of shame—everyone needs support in some way at some time in their lives.
Family Caregivers
By speeding the date of discharge, insurers have placed more responsibility for care on families. Coverage for home nursing and personal assistance is also limited, so families end up carrying much of the load. For a person with quadriplegia who is ventilator dependent and must have someone nearby at all times, this is a large task indeed.
According to a June 1998 article in the
San Francisco Examiner
:
Managed-care companies and hospitals conscious of the
Equipment is another key to the discharge process, but the task of identifying a wheelchair is difficult to accomplish early in the rehab process. As Bonnie Sims explains:
In the first weeks of rehab, most people plan on walking out. The last thing they want to do is order a chair when they believe there will be no need for it. Power chairs can be especially complex. There isn’t sufficient time to prescribe, fund, order, and fit the chair prior to discharge. We do have a loaner system that makes timely discharge possible in most cases.
Many major rehab centers have special apartments designed as transitional living locations, but most insurers will not pay for a stay at such a facility.
Building a Support System
You want to create an environment for yourself that helps you continue coping. The choice of people you interact with makes a big difference.
Your relationships will change with some people. A disability has a way of flushing out relationships, of showing who is really committed to you as a true friend or even a family member, and who is unwilling or unable to accept you on new terms. There is both heartbreak and joy in this. You will find a deeper connection with some people in your life, and you will be disappointed in others, facing the loss of their presence because they are unable—perhaps only for now—to face their fears raised by your disability:
I found out years later that some of my closest friends felt my life was over once I had become paraplegic. A couple of them did not see me for years, and when we reunited later, they said that, at the time, it was just too painful for them.
You will also meet new people and develop friendships in ways you might not expect. You have control of who you interact with and in what ways. You have new priorities for maintaining your health and redefining an active, satisfying, and meaningful life. You have to choose how you need and want to live, give people you’ve known the chance to understand your new terms, and try to have enough people in your life who inspire you and support you.
Relationships take work. Expressing emotions to each other is part of the process of deepening your connection. Even if others grieve about your disability or tire of the caregiver role, keep communication open. The relationship can grow, so long as people are expressing themselves.
In her book,
Coping with Limb Loss
, 6 Ellen Winchell, PhD, describes aspects of a successful support system:
Our lives are enriched by emotionally nourishing relationships.
We are innately social beings who turn to each other in times of need.
Knowing people love and care about you reduces your sense of isolation and the burden of the experience.
One “best friend” is not a complete support system, but is an overwhelming responsibility for that person.
You are not a burden to people who care enough to want to contribute and will find meaning for themselves by doing so.
Accepting support is not a matter of shame—everyone needs support in some way at some time in their lives.
Family Caregivers
By speeding the date of discharge, insurers have placed more responsibility for care on families. Coverage for home nursing and personal assistance is also limited, so families end up carrying much of the load. For a person with quadriplegia who is ventilator dependent and must have someone nearby at all times, this is a large task indeed.
According to a June 1998 article in the
San Francisco Examiner
:
Managed-care companies and hospitals conscious of the
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