Dementia can make even the most reliable, most capable family caregiver
feel helpless. Diseases are not easy to handle, but the way dementia
changes the brain and therefore the memory, body, mood and personality of
the person affected makes it especially challenging. The brain is the
control center. When that is compromised, the results are devastating.
The Only Thing Certain
The unpredictability of dementia is one of its hallmarks. One day, your mom
may recognize you and call you by name after weeks or months of calling you
something else or looking at you as a stranger. One week, your dad may take
a turn for the worst, and you start making plans and preparations. The
next, he may bounce back and show you a strength you didn’t think possible
anymore. Physical strength, ability to handle daily tasks and bodily
function can vacillate too. On Tuesday, your mom might be able to dress
herself, even if you have to set out the clothes for her in advance. On
Wednesday, she may look at the clothes as if she has no idea what they are,
who they’re for or what to do with them.
For you as the family caregiver, riding this roller coaster with your loved
one is draining in and of itself. You feel out of control, helpless to know
which end is up or what’s best for your loved one. You may find yourself
with limited patience and compassion no matter how many times you tell
yourself, “It’s the disease’s fault, not the person’s.” And
because dementia is so unpredictable, a time frame is rarely in the
picture. This decline, or even the up and down of it, can go on for weeks,
months, years, decades.
That thought is often too overwhelming for family caregivers to truly face,
and understandably so. But the reality is this: you need help. Acting alone
is often not just unrealistic, but dangerous.
Self-Care is Not Selfish
Too many family caregivers think not being able to do it alone
implies weakness—or that the need for self-care is selfish. Nothing is
further from the truth. The very nature of dementia and all it entails
emotionally, physically, mentally, and spiritually requires support,
respite, a team effort. To run the marathon of dementia caregiving, you
need trustworthy people to whom you can pass the baton when you need a
break. You need the chance to relinquish your role as primary,
round-the-clock family caregiver and instead take the role of loving,
encouraging child to a parent lost in the fog of dementia.
Because by not getting yourself respite care, a much-needed break, you risk
health concerns of your own. Consider the following findings from a
National Institute of Health study on family caregivers:
Caregiving often results in chronic stress, which comprises family
caregiver’s physical, psychological health
Depression is one of the common adverse effects of family caregiving
Caring for a family memeber with dementia is especially challenging,
causing more adverse health effects than other types of caregiving
Finding a Way Forward
If you’re feeling burned out, act immediately. Start researching respite care
options. If your parent has medical needs, you may need to consider home
health or palliative care. If you feel you can meet your parent's basic
needs—like getting dressed, bathing, or toileting—you may want to consider
professional home care
or to do light housecleaning. Whatever your situation, there are care
options to come alongside you, or fill in the gaps, or take over
temporarily or permanently.
The good news? You don’t have to decide right now what kind of care you’ll
choose. Take the first step to learn more. Give Mom or Dad time to adjust
to the idea of a professional caregiver besides you. Go easy on yourself
through this process; there will be ups and downs.
With dementia, some days will be harder than others—whether or not you have
a professional caregiver’s help. And if you feel your parent won't be
receptive to a professional caregiver,
for strategic methods on having that discussion.