Caregiving throws many challenges our way, including establishing care routines for our elders that are not only challenging, but may be somewhat embarrassing. By approaching these four caregiving situations with dignity and respect, awkard feelings will fade as they eventually become part of your regular care routine.
1. Taking care of "bathroom issues"
Incontinence and trouble with toileting are common among the elderly. Many of you are changing a parent's incontinence briefs. While I never had to do that, there is a day from my past related to this type of care that is branded onto my brain. My dad had endured one of his many surgeries and was at home recovering. Mom had taken care of his toileting needs since he arrived home from the hospital, however one day when I was sitting with Dad so Mom could go out for awhile, he had to go to the bathroom. I certainly didn't mind helping him, but my heart was heavy with the thought that, since Dad was still cognitively stable, he would feel that his daughter helping him with such personal needs was embarrassing.
As it turned out, I needn't have feared. Dad was pragmatic when it came to the human body, and he welcomed my help without any sign of embarrassment. Since I sat with Dad often, I quickly came to the point that the whole process was routine. Still, I've never forgotten the emotion involved that first time.
I've heard from male caregivers who think nothing of changing their mother's undergarments. Incontinence care for them is an act of love, just as feeding her would be. Some men, however, feel great embarrassment when they first attempt this physically intimate duty. I don't believe that their response is the result of prudishness. I sense it's the same feeling I experienced with my dad. Something seems abnormal about handling a parent's most personal physical needs. It seems almost disrespectful. Most of us get over this feeling, as we internalize the fact that tending to our loved one's needs, no matter who the person is or how personal the task, is just one more act of loving care.
2. Giving mom or dad a bath
People differ greatly in their acceptance of needed help. My mother-in-law, Alice, needed assistance while bathing. One would think since we were quite close and of the same gender, that her allowing me to help her bathe wouldn't have been a huge issue. However, Alice grew up with great modesty about the human body, and she never got beyond that shyness. She emphatically did not want any family member helping her bathe. Since she couldn't shower or bathe safely by herself, we found that hiring an in-home agency to send a caregiver for this task worked fairly well. While Alice didn't like them either, she would allow the caregivers to do what they must. I believe that was because it seemed more "medical," therefore impersonal.
My heart tells me that most of us feel embarrassment because we care about the dignity of our elder or other person we care for. One way to get by that is to remind ourselves that it's certainly more dignified for the person to be clean and smell fresh than be offensive to others. When they fight us, as with the bathing issues I faced, sometimes outside help is the answer. That isn't likely to work when it comes to toileting, so convincing the person who is fighting your help that their dignity is at risk if they don't allow some help may be the best approach to take.
3. Dining in a restaurant with disabilities
Dignity is also an issue when taking an elder, or someone with disabilities, out to eat. Many people with Alzheimer's, Parkinson's or other disabilities have a hard time getting food into their mouths, even with help. They may have trouble chewing or swallowing. Some caregivers may be concerned that behavior issues can make fellow diners uncomfortable.
The issue about whether to take someone in this condition into a restaurant brings mixed reactions from my readers. One reader has taken his wife, who suffers from Alzheimer's, to specific, non-formal restaurants all through her disease. He uses a bib himself, just like his wife. He feeds her if necessary, wipes up spills and takes care that she enjoys herself.
Another reader, who has advanced multiple sclerosis, is adamant that her daughter pick up food if they want restaurant fare and bring it home. She doesn't even like to eat in front of the family. Her daughter feeds her before family events, and then she visits with people while they eat.
In most cultures, eating is a social ritual. It's also quite personal in some aspects. How – or if – to take people with disabilities that affect their ability to eat neatly and quietly out of the home to dine is an individual decision.
Some caregivers would feel embarrassed, either for themselves or their loved one, if there is a "scene" around their dining table. Others handle disruption with grace, even feeling that it is a learning experience for those looking on. Each view has validity. My thoughts are that I'd try to figure out, by looking back on my family's patterns with their elders, what this person would have preferred if he or she could tell me. I've used that concept as a touchstone for many decisions involving my elders.
4. Going out in public
Eating aside, taking our loved ones with dementia or other illnesses that affect their public behavior out in public can be tricky.
People with Alzheimer's can benefit greatly from events that stimulate the artistic part of their brains, so art galleries and music events are often very beneficial for these folks. Researchers have shown that some people with dementia, particularly in the earlier stages, can look at a painting and see depth to the message that we "normal" brained people may miss.
The view from the opposite side is that, during some stages of Alzheimer's, people can feel anxious when taken outside of a known environment. Knowing your loved one and how to help this person best enjoy life is important. So is educating yourself about your loved one's disease. Your local Alzheimer's organization can be a huge help in learning about these matters.
If your feelings of embarrassment are more about yourself and how others see you, this is something to ponder. Most of us don't like to be stared at in judging ways, so you aren't alone. But consider a few things.
Most of the people staring at us as we take our loved one through a store or clinic are simply curious. They may feel sorry for us, which we don't like, and it can feel that they are judging us in a negative way. Frankly, some people are. So, aim for the most social stimulation possible, without overwhelming yourself or your care recipient.
Talking through the challenges of caregiving with a trusted friend, spiritual advisor, or experienced caregiver can help. Professional counseling can help, too, though most of us don't have to take it that far. Other caregivers can be a goldmine of support. Use the advice of others, look online for ideas and tips, but mostly do what you think is best. Get advice and then go with your gut, as they say. Sometimes as caregivers that's all we can do.
