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.