First, learn about the disorder your loved one has been diagnosed with
When you can grasp a better understanding of the condition your friend or family member is dealing with, it only makes it easier for you to have empathy and remain emotionally connected. “Sometimes families believe they are seeing a ‘loss of emotion’ but they are actually observing the patient not being able to understand directions or conversations and participate appropriately,” says Jennifer L. FitzPatrick, clinical social worker and author of Cruising Through Caregiving: Reducing The Stress of Caring For Your Loved One. “This leads to guilt and frustration on the part of family and friends.” Don’t hesitate to do your research or ask the patient’s medical staff as many questions as you may have. In addition, the Alzheimer’s Association offers endless information about the disease and most other irreversible dementias through their website, classes, and support groups. You’ll meet others who have struggled with emotionally connecting with their friend or family member, and better prepare yourself for what’s to come. Here are 16 things people with Alzheimer’s disease wish you knew.
Start focusing on your emotional connection early on
Patients are now getting diagnosed with Alzheimer’s disease even earlier than ever, when the disease has not fully progressed to a level of total confusion or disorientation. “During these early stages, try having conversations about what you both can do to stay connected as the disease progresses,” suggests Celeste Holbrook, PhD. “One exercise I practice with my patience is having the diagnosed individual tell their close family member or friend something special that they would like them to continue even long after he or she can no longer recognize that person. This gives the friend or family member some clarity and concrete action, to know that he or she can and should continue to do or say certain things despite the toll the disease has taken.” Even the concept of the Alzheimer’s patient knowing that these behaviors will continue long after they can properly respond is immensely encouraging. Though it’s important not to make promises you may not be able to fully keep. “Countless caregivers promise that they will never…put the loved one in a nursing home, bring strangers into the home, etc.,” says FitzPatrick. “When a caregiver makes and strives to keep such promises, anger and resentment often build which decreases the emotional connection.” Instead, tell your loved one you will arrange the best care you can possibly find without saying anything more specific.
If you are a caregiver, don’t do it alone
Most caregivers lose their emotional connection to the patient with Alzheimer’s disease sooner than other individuals in the patient’s life because they stop being a husband, son, grandson, etc. They begin looking at their loved ones as patients more than as their wife, mom, or grandmother. “Find other friends, family, and paid help so you can have some time just being emotionally connected, rather than having a ‘clinical’ relationship,” says FitzPatrick. If you are a full-time caregiver, and for whatever reason cannot seek outside help, be sure to schedule some time away so you can refresh your mind, fortify your patience, and get some space. “As with any long-term illness, you will be grieving the loss of your loved one far before they die, so it’s important to take measures to look after your own well-being—with therapy, meditation, time with other friends, or getting a professional to clean your house—so you can be open and available to emotionally connect with your Alzheimer’s patient,” says Dr. Holbrook. These tips can help you avoid caregiver burnout.