Top 8 Truths of Dementia Caregiving
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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- 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.
- 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.
- 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
- 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.
- 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?
- 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.
- 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.
- 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.
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.