Care Giving is a Two Way Street
My class is finally coming to an end. The last topic addresses women as caregivers and the stress that results. In the United States, at least 75 percent of home caregivers are women. Depending upon the amount of care required, they can spend up to 16 hours per day providing care. In addition to being caregivers, many have families and jobs.
Others are elderly spouses who lack the time to tend to their own medical problems. Research has found that being a home caregiver is an independent variable for early mortality. The focus was for us to become aware of the problem. As therapists, we were asked how we could address this in our clinical settings.
As we discussed the topic something interesting came up. Many of us commented on having met patients who add to the burden of care giving by being difficult or demanding. Everyone had an example of someone who wouldn't help with transfers, wouldn't let anyone but the caregiver help them and constantly needed a pillow moved or the head of the bed adjusted. I've had patients who demanded their caregiver stay with them while they were hospitalized even though nursing and others were available to assist them. Given patients like these, it's easy for me to see why caregivers are exhausted and frustrated.
The odd thing is the same patient who won't help her daughter with transfers will walk 100 feet with me. Or, the man who can't assist with a bed bath will be supervision for a shower with OT. I've lost count of the number of times I've heard "she won't do that at home." I could probably make a fortune if I collected and sold on Ebay the unused equipment well-meaning doctors have ordered that the patient won't use. The equipment is meant to save time and make things easier for the caregiver. That doesn't happen if the patient refuses to let it be used.
Home health is a community resource that is heavily relied on. Again, the intent is to help the patient get stronger so he or she can assist with care. Home health therapy only helps if the patient participates. This is another source of frustration. I've been told many times therapy came to the patient's house but mom or dad didn't like it, so they stopped coming. I've had patients tell me they didn't like the therapy because it was too hard. Hospitalized patients tell me the same thing. I'm not sure where the perception that therapy should be easy came from.
I've seen husbands and wives hostile toward therapy. He pleads with her to do therapy. She refuses because either she can't or she's too tired. I've had daughters and sons plead with parents to work with therapy to get stronger to no avail. Many times these are patients who could easily get up and mobilize but won't. This makes me wonder who will become the new caregiver when the current one is no longer capable of providing care. I also wonder about families and jobs that are lost due to caregiver duties. I have a friend in this situation. She is a caregiver for her mother. She told me her mother gave up her life to take care of her grandmother for many years. Now she expects the same.
I'm sure there are many reasons for this: fear, pain, confusion as well as wanting to be waited on. The average caregiver provides $35,000 annually at home. Baby boomers are starting to age so the cost and demands will increase. Many women put their lives on hold, neglect their own needs and medical conditions to provide care. We therapists are in a unique position to offer help. We can work with the patient to overcome barriers to assisting. We can work with the caregivers to help them ease the burden. Sometimes the best thing I can do is tell the caregiver it's OK to take a few minutes for herself.