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Top 8 Truths of Dementia Caregiving

Most of us find, as we travel our unique journeys, that certain phrases or concepts take on the status of truth in our world view. Our personal truths may not be identical to those of others, but we know what is true for us.

Below, I've shared, as food for thought, a few of my own truths that have developed during my personal caregiving journey.

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  1. What type of dementia does your loved one have? Alzheimer's is the most well known type of dementia, but there are many others. Vascular dementia, Lewy body dementia (LBD), Frontotemporal dementia (FTD), Parkinson's disease with dementia and mixed dementia are some of the most prevalent. For this reason, it's important that the physician who tends to your loved one knows the different signs of dementia, and is qualified to treat his or her specific case. Educating yourself about the type of dementia that your care receiver is coping with will help you understand his or her behavior and allow you to provide more compassionate care, as well.
  2. Be as flexible as possible. People with dementia often change not only day to day, but moment to moment. If your loved one is having a bad day it's most likely not your fault. Do what you can to help while hoping that tomorrow will be better. Watch for patterns, but know that some days will be better than others. Caregivers may have to shift a shopping day to another time because their loved one is having a particularly bad day. Try not to let these small disruptions become larger than they really are.
  3. Accept that others will offer advice. People with no understanding of what caregiving entails will be more than happy to tell you how you should handle your caregiving life. Since they haven't been in your shoes, they can only guess at what they think they'd do under similar circumstances and in their minds, they are right. Take a deep breath and smile while they have their say. Then do what you feel is right for you and your care receiver. If you feel you need advice, find someone with similar caregiving experience and ask for their perspective.
  4. Detachment is vital for our mental health. We need to detach from our care receiver enough to keep our own sense of self and not allow their needs to define our whole lives. If we have a controlling, cranky elder we cannot please, we can't let their behavior saturate our sense of self to the point that we feel we are failures.
  5. Empathy is necessary for compassion. No, this is not a contradiction of my point above, nor is empathy the same as sympathy. While we must detach from our care receiver to remain a separate being and have perspective in our lives—and we likely feel sympathy for their pain, their confusion and their loss of dignity—empathy is what makes us a compassionate caregiver. When we empathize with someone, we put ourselves in their place. We consider how we would act if we were in a similar situation. What would we want someone to do for us so that we could feel better?
  6. Self-care is not a luxury. If we neglect our own health, we will pay a price. There are certain routine medical tests caregivers need. If a middle-aged woman doesn't have a recommended bone density scan, she could find that she has developed osteoporosis the hard way - by breaking a bone as she shifts her care receiver to a new position. Take care of your own needs; for your personal benefit as well as for the benefit of your care receiver.
  7. Don't judge your caregiving skills by the response of your care receiver. People with dementia are going to have bad days. If you are educating yourself on how to cope with negative behavior, and asking for help when you need it, you are likely doing fine. Try to remember a good day when your care receiver seemed to find some enjoyment and see if you can replicate that to some degree.
  8. Know your limits and ask for help. Nearly everyone who is trying to care for a person with dementia is eventually going to need some help and it's vital to keep in mind that caregiving needs to be a team effort. Whether help comes from respite care provided by friends or family, hired in-home caregivers, adult day care, assisted living or a nursing home, dementia caregivers need assistance. Without at least occasional breaks, neither the caregiver nor the care receiver is likely to have the best quality of life that can be realistically expected.

Many of your truths may be different, my friends. But I believe that a number of them will be similar to mine. It's what we caregivers share – that fellowship of having given of ourselves to help our vulnerable loved ones and others.

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.
 






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