What's New/News:                                                Vol. 2, Issue 10

ADVOCACY NEWS

The topic is not pleasant but it is one that some of us must eventually face. When, how, and why do some people make the decision to place a family member with a disability in an institution? And how does one choose the place?

First, let me start by saying that the decision is never easy. Some of us have an elderly parent who is too frail and disoriented to live alone any more and cannot take care of her personal needs. Some of us have a family member who was injured in an accident. Others have a severely disabled child. This family member is too much for the others in the household to care for. At some point, the question of institutionalization becomes an issue.

Some people choose to keep the individual at home -- diapering, feeding, bathing and taking care of the disabled person’s every need. It’s admirable. Some people can do it. Others can’t. I remember growing up across the street from a family who had a son who was born so severely mentally disabled that he could not walk, talk, clothe himself, use a restroom, etc. The mother took it upon herself to care for the child into adulthood. She did everything for him. The family could not go to a movie together. The parents never went shopping together. The two other children had to plan their lives around their brother. It worked for them because they decided they could handle it. I am not sure what happened to the person when his parents became too old to take care of him. He may not have lived that long. Another family made the same decision. The mother kept saying that her other daughters would take care of their disabled sister when the mother could no longer meet the girl’s needs. Long before the mother died, the sisters decided that the mother was too frail to meet the needs of the now fully-grown disabled sister and the sisters moved her to a nursing home.

The moral of both stories is that, even if a family elects to take full responsibility for a family member with a disability, eventually, unless the disabled person dies, the caretaker will age and become unable to care for the individual. The issue of institutionalization will emerge again. The only problem is that if the family has not prepared for this possibility, someone else may make the decision for them. If the mother dies, the child must be placed somewhere. If the adult child turns 70 while caring for an aging mother who is 90, what happens when the adult child can no longer provide for the mother? There is simply no escaping the issue.

Let’s consider things to look for in the institution if eventually one must face this difficult decision. The first consideration should be attention given to the patients. People in nursing homes, hospitals and other institutions need attention. They need personal contact. It’s important. Take the time to see what kind of attention the staff provides the patients. What activities are available? How much time do the individuals with disabilities spend in bed? How much time is devoted to physical activities? Look at the schedule then observe the reality. Do the two match? Next, consider medical care. What is the quality of the care and how is it provided? How close is the nearest hospital? Does the building smell of urine? (Not a good indication of quality.) What are the qualifications of the employees? Are there enough doctors, nurses, aides, etc? Next, look at the pictures on the walls, the paint, the carpeting, etc. Does the place feel comfortable? This question can be answered from the gut. Go with your gut feelings.

Check to see if the institution has the right equipment. One nursing home that accepted children did not have medical equipment the correct size for children. They didn’t notice this oversight until they needed the equipment. The child died. Check to see how the staff is screened before hiring. That same nursing home hired a nurse who actually contributed to several deaths through neglect. Consider the philosophy of the administration and staff. Are they committed to providing your loved one the highest quality of life possible? What kind of training does the staff receive? How often is it provided?

Of course, many other considerations must be sorted through before placing your loved one in an institution. In addition, you need to consider your family. How close is that institution to your home? Can you visit frequently? That loved one needs you and you have a duty, an obligation, to visit frequently no matter how hard it is on you to go visit. Imagine how much harder it is on your relative. Do not neglect them. Keeping a regular vigil does provide an incentive for the staff at the institution to keep "on their toes".

I could tell you horror stories about different institutions. However, I can also tell you that there are very nice, professional places that will care for your relative with a disability. My advice would be to "start small." Look for smaller, more personal homes. Oftentimes, these places are wonderful and can provide the services you seek. Check them out thoroughly though. Bigger, more modern places can also provide the basic services and add more therapy or technology. Do your homework.

Even if you believe that your loved one will never have to live in "one of those places," have a written plan for that individual. Plan for your demise, your disability, your inability to continue to care for that person. Then, even if you never have to implement the plan, you can rest at night knowing that your loved one has an insurance policy to care for him or her in case you are unable to provide the services that person needs.

I can’t tell you that you will be appreciated for your sacrifice if you keep the individual with a disability at home. Nor can I tell you that you would be condemned for placing that same person in an institution. You should do what is best for you and your entire family. Then, whatever you decide, you should go on with life knowing that you did the best job you could do. Just do your homework and have a placement prepared for that time when you must face that decision.

Karen

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