Unfortunately, I find myself increasingly in a situation where friends tell me that a loved one has been recently diagnosed with dementia. And increasingly, I find myself thinking back to when we finally heard the words “Alzheimer’s disease” come from a doctor’s lips.
So how can family members prepare for the long road ahead? Thinking back to the first days, weeks and months after my mother’s diagnosis, I’ve developed the following five tips for people whose loved ones have just been diagnosed with dementia.
1. First of all, find out from the doctor what stage of Alzheimer’s disease or dementia your loved one currently is in. My mom fought so long and hard to avoid diagnosis that we were thrown into dealing with issues caused by the middle stages of Alzheimer’s. Because of this, our family faced different challenges than those faced by a family that hears an earlier diagnosis. Therefore, you need to know what the current starting point is for your caregiving efforts so you can effectively tailor your efforts.
2. Begin to educate yourself about Alzheimer’s or dementia and what it will mean for your loved one. The HealthCentral website provides a lot of good information. When my mom was first diagnosed, however, this website wasn’t yet in existence. Instead, a friend whose husband had dementia pointed me to the book, “The 36-Hour Day” by Nancy Mace and Peter Rabins. That book provided a great education on what was going on with Mom as well as suggestions about caregiving issues. I found the book so informative that I purchased a copy for my father, and I’d encourage you to do the same.
3. Develop your own support group. In my case, I was fortunate to have friends who had dealt both with Alzheimer’s and with caring for aging parents who were willing to give advice. I’d strongly suggest that you identify these people in your life and then begin to learn from their experiences. Although I didn’t do so, I’d also encourage you to find and participate in an Alzheimer’s support group in your area. And be sure to stay involved in this web community by asking questions and sharing your story.
4. Identify roles for family members and take care of one key task. It’s all too easy to totally jump into the caregiving role in response to a loved one’s diagnosis. However, that can lead to burn out as well as frayed relationships with other family members based on your perceptions of their level of caregiving support. Therefore, I’d strongly encourage you to hold a family meeting in which you discuss who will assume different roles, such as caregiving, maintaining finances, etc. Brainstorm all pertinent tasks and then share the load within the family or identify how the issue will be handled. And at least one family member should make sure that one key task is completed - all legal documents needed for end-of-life care are completed and maintained in a central location.
5. Begin to carve out some quality time daily for self-care. You’re embarking on a long, winding and stressful road. Trust me when I tell you that it’s very easy to put off taking care of yourself, especially in the early rush of caregiving. And then as the stress increases, you begin to see and feel the consequences of putting yourself last (such as not sleeping, gaining weight, etc.). This vicious cycle can lead to the deterioration of your own health; if that happens, you’re not going to be fully there as a caregiver for your loved one. Therefore, it is critical that you begin on Day One to carve out some time for yourself. Take a walk. Go see a movie. Eat healthy meals. Know that whatever you do, practicing self-care is an important gift to yourself and to your loved one.
These five tips can help set the tone for your caregiving efforts. By focusing on these five areas, you can better deal with the issues that will arise in your caregiving journey.
Published On: June 29, 2009