This is part one of a series of articles on how you can take care of yourself
when your loved one has received the difficult diagnoses of
Alzheimer’s or Dementia. This first article will deal with things you might experience with that
life-changing diagnosis, and how you can take care of yourself as these
things come up.
If you’ve ever traveled by plane, you might remember the safety instructions
given by the flight attendant before the plane takes off. They demonstrate
how the oxygen mask comes down in the event of an emergency; their instructions
are clear: put your own oxygen mask on before putting the mask on your
child/ loved one. When you take on the role of a caregiver, you must take
care of yourself if you are to be strong and centered to keep your loved
one safe, and make decisions from a place of health. Therefore: self-care
is of utmost importance.
If you’ve just received a diagnosis of Alzheimer’s or other
Dementias for your loved one, chances are you have suspected or feared
this for a while. You may be experiencing the stress of worrying how your
life will change as you try to keep your loved one safe and happy while
their inner landscape changes daily.
When you hear the diagnosis and begin to prepare for what may lie ahead,
it is normal to experience the stages of grief. If you know and understand
what is happening with you and your loved one, it will ease some of the
emotional burden. Please note that not everyone experiences every stage,
and they might not be in any kind of order.
First Stage: Denial. Very often it takes time to live with news this big. You and/or your loved
one may start out with feelings such as “we can beat this,”
or “this is not happening.” It will empower you both during
this stage to come up with plans. Even simple things like menus of healthy
foods that your loved one enjoys and to support brain function, or a schedule
for regular exercise.
If you both understand that things will change as this progresses, and
have agreements about what the person who has been diagnosed feels good
with (familiar exercises, foods, music, places to visit) you will be working
within the “refusal” stage of grief in a very positive and
empowering way. A danger of this stage is isolation- the impulse to close
down, not tell anyone about the diagnosis, or simply avoid discussing
it. This can be counteracted by gently offering space for discussion,
and reminding yourself to stay open, that things will need to change,
but it is possible to stay positive by stopping bad thoughts and choosing
to dwell on things which are true, lovely, and good. There are always
things in our lives which we can still be thankful for, even in the midst
of hard circumstances.
Second Stage: Anger. Though anger may come, it’s what we do with it that matters. It
can come in outbursts- towards others, ourselves, or even in frustration
in everyday struggles. There can be guilt underneath; guilt over wishing
this hadn’t happened, or “selfish” thoughts about your
own life and welfare during this time.
If you can, create a safe space to work through these emotions; a quiet
place to think or a journal in which you can write out everything you
are experiencing, so that the emotions will not be pent up. This is an
important step to keeping yourself solid and centered during this time
– rationalizing, shaming or stuffing down emotions may cause them
to boil over, so they will come out in stronger and more harmful ways.
We will be continuing this series of articles with the next three stages
of grief, and ways to take care of yourself and your loved one as you
experience the stages. The stages of grief do not happen in order –
they cycle back around; sometimes one can experience all of them in a
single hour, or move from one to the other fairly quickly, or cycle back
to a “beginning” stage. Over time, the emotions will heal
and the experience will be less intense.
Knowing that support is always available, and discussing with your loved
one plans for care in the future, should help ease the pain and uncertainty
of this time. In future articles, we will discuss how the inner landscape
changes during Alzheimer’s and Dementia, and how finding help for
your loved one is not an abandonment of them, but may be the most loving
thing that can be done for both of you.