Who doesn’t know someone – or a lot of people – who informally use music for therapy? A friend of mine has a plaque on his kitchen wall near where his daughter who has severe disabilities often sits to use her switch activated devices and toys. The plaque is homey and simple but the words are powerful. It reads: Where Words Fail Music Speaks. My friend discovered years ago that playing his guitar for his daughter could connect them on a very basic level as well as bring both of them joy.
Whether you’re caring for someone with dementia or visiting them from time to time you’ll want to do your best to make them feel good. No one will ever hit the right note every time but knowledge helps. With that in mind, here are a few pitfalls that you can avoid in order to help make your time with a friend or loved one who has dementia less stressful.
Family caregiving is more of an art than a science. Most people who take on the challenge of family caregiving do the best that they can under their unique circumstances, yet, they often receive criticism, sadly even from other caregivers. How can family caregivers who are already doing so much for their love one(s) weather criticism from outsiders about how they provide care?
...The team’s research provided physical evidence that the effects of chronic stress, which is often part of the caregiving life, can be seen both at the genetic and molecular levels. They used volunteers who were Alzheimer’s caregivers and compared them with an equal number of non-caregivers matched for age, gender and other health and environmental aspects. The researchers looked at blood samples from each group for differences in the telomeres as well as populations of immune cells. According to Glaser, “Caregivers showed the same kind of patterns present in the study of mothers of chronically ill kids.” He added that the changes the Ohio State-NIA team saw amounted to a shortened lifespan of four to eight years. The researchers believe that the changes in these immune cells represent the complete cell population in the body, suggesting that all the body's cells have aged the same amount as the immune cells.
For most anyone who has been diagnosed with dementia, or has loved someone with a type of dementia, the formal diagnosis was a moment frozen in time. A moment where the thought of possibly having a brain destroying disease became a confirmed reality. That pivotal moment is life changing, however people can move beyond that moment in time and learn to live with dementia.
I've found in my experience that it isn't always the elders who shy away from end-of-life talks. Some do, of course, but many would like to discuss the arrangements they've made for finances, as well as their opinions about what measures they would want taken if they needed someone to make their decisions if they can't, however the adult children often find excuses to put off that particular "talk."
I watched my mom struggle with painful arthritis in every joint. She'd had two hip replacements and her knees rubbed bone against bone with every step. Sometimes, watching her struggle with her walker tore at my heart so much, I could hardly help but insist that she let me get her into the wheelchair. Yet, we both knew that if she didn't move she'd get worse.
Dear Carol: I’ve cared for my wife who has dementia for several years but now she’s begun wandering and needs constant supervision. Our kids think that both she and I are both better off if we place her in a nursing home, so we are on two waiting lists. One of the homes that we're considering has a rule that the family isn’t supposed to visit for the first two weeks after the person is admitted, and after that visits should be infrequent. They say that family visits disrupt the routine that they are trying to put into place for the elder and that seeing family members simply confuses them. The other home welcomes visits from the start, saying that while they hope that the family feels comfortable leaving their loved one in their care, they like to have families help with getting the person settled and as comfortable as possible. I hate the idea of leaving my wife in a new place and not being with her to help her settle in, but I want what is best for her. CF
Caregivers often find that many of their superficial friends drift away over time because the caregiver is too busy to have fun. These friends are not bad people. They simply don't know what to do to help the caregiver and they find it easier to share their time with people whose lives are less complicated. Are you this kind of friend?
Most of us dread the thought of moving a loved one into a skilled nursing facility, and this sentiment doesn’t change for those who are fortunate enough to have a selection of stellar facilities to choose from. We know that we are giving up a certain amount of direct oversight, which can be hard even though we are well aware of our limitations as individual caregivers. We also know deep down that this move is an admission that a loved one has passed a certain point in their health where returning home or resuming even a few aspects of self-care is no longer a possibility. In other words, this transition is a direct dose of reality.