Living With An Adult With Disabilities

I spent several years both during and after college working with adults with disabilities in a variety of settings - classroom, residential and workshop. I loved my work, viewing it as a challenge, a ministry and a blessing. The folks we worked with had a range of physical, mental and emotional limitations. Some were healthy and agile, while others were fragile and weak. Some were mentally sharp, while others possessed little power over their minds. Some were garrulous, while others rarely or never spoke. Some were sweet and timid, while others daily lashed out at themselves or others.

Two of the guiding principles which my teachers and employers branded into the very core of my being, were the importance of offering choices and the necessity of individual dignity. Looking back, I can see how these two might have conflicted with one another, but at the time, they functioned neatly together for me. Even though I loved - truly loved - these people, I felt able to make objective decisions in their best interest without great emotional angst.

I am not finding the same to be true as primary caretaker for my aunt. There are a couple of recurring conflicts which stir up great uncertainty for me. In some respects, they seem like small issues that should have simple solutions, but because of my emotional involvement, I remain unsure.

When we have a day at home, I let Riesa pick out her clothes. She can wear whatever she pleases. She can mix and match styles, seasons, colors, layers...whatever! I figure she is making herself comfortable and happy and that's perfectly fine.

However, when we are going out, I want her to look nice...as "normal" as possible. (Now, those of you who see her every week may think her wardrobe isn't "normal" but it reflects the tastes of her 85-year-old mother who has always purchased her clothes for her.) I want her to be dressed appropriately for the weather and the occasion. The problem is that sometimes she doesn't want to wear what I have picked out for her, and is determined to wear what SHE wants.

Here's how the conflict between those guiding principles of choice and dignity play out in my head:

1. She is a grown woman, not a child. Give her the respect of having her own opinion and let her wear what she wants!

2. She may be 50 years old, but she doesn't possess the discernment of an adult...she needs help making decisions. Just like a young child who is not left to choose his own diet, sleeping hours, or wardrobe, she needs guidance. It would be wrong not to offer that guidance.

3. But is it more than guidance I should be offering? Do I have any responsibility at this late stage in her life to "train" her? Should I try to teach her that you don't wear jeans to Sunday morning church, or a Cardinal ball-cap to a banquet? Or that a purple turtleneck doesn't match under a red cardinal t-shirt?

4. If I let her choose, she may choose that which detracts from her personal dignity, because its lack of appropriateness makes her stand out in the crowd even more than she already does.

5. What statement am I making to the "public" about the dignity, respect and value of persons with disabilities if I don't help her look presentable? Am I communicating that she is less important than myself if I'm dressed appropriately and she isn't? Dressing her well is one way of stating that she matters as much as my children do...whom, by the way, I also "force" to wear certain types of clothing on certain occasions!

6. Afterall, am I really concerned about HER dignity or MINE? Do I really care if people wonder why she's wearing THAT, or do I care that it might reflect badly on ME as her caretaker? So, as in other situations in life, the two become inseparably intertwined. The way my children look, act and treat others is a reflection of my mothering...whether or not it is consistent with my mothering, it is perceived as such! So, am I acting out of pride because someone might judge me, or am I acting in her best interest?

7. At this late stage in her life, shouldn't I just allow her to do what makes her happy (as long as it isn't immoral, of course!)? What few joys does she have? If wearing a certain shirt on a certain day pleases her, why not let her wear it?

8. Finally, is it worth making her UNhappy to preserve her dignity or my reputation? When I force my will on her she is reduced to anger, frustration and tears. In matters of greater import - such as bathing, eating, bedtime - issues of health and well-being are at stake and I find it easier to justify imposing my will on her...not easy, by any means...I don't like it when she's unhappy or mad at me, but justifiable.

By the way, there is one simple solution that occasionally works: I offer her a choice of 2-3 appropriate shirts or outfits, and she chooses one. When that happens, it's the perfect compromise. She's happier and her dignity and my reputation are preserved, but there are times when none of my choices suit her...thus the conflict.

I don't know if anyone has experience or answers for me, but there you have it...the guiding principles of dignity and choice conflicting with one another on a regular basis. It's not the end of the world, but some days it weighs on me. Other days I just do what needs to be done and move on without much angst.

But it does this: it keeps me seeking the Lord for patience, understanding, wisdom, joy and a servant's heart. That can't be all bad, eh?