When someone receives a diagnosis that their loved one has dementia or Alzheimer’s disease often they are not sure what their next step should be or whom they should tell. However sharing the diagnosis with those close to you and your loved one is that next step.
By telling friends, neighbors and colleagues you will be helping yourself come to terms with the diagnosis and help you better understand the disease. In telling others you also begin to create a circle of care for yourself and for your loved. These individuals may be the ones that step in to care for Mom when you are sick or will be there when you need someone to listen. Tuck their offers of support and help in your back pocket and utilize them when you are in need.
Telling friends, neighbors and colleagues can be done with a phone call, e-mail or a letter. However, the most important people to tell are your family members, especially those closest to your loved one. Many families find that calling a family meeting is the most productive way for everyone to understand the diagnosis and begin planning for the future. In some instances families will include their loved one in all or part of the family meeting. However it is important to gauge if this appropriate and comfortable for your loved one and everyone involved prior to the meeting.
It is also important to remember that not all families are the “Brady Bunch.” Some families have a history of discord or miscommunication. In this instance you may want to consider calling in a third party to moderate the discussion: a clergy member, geriatric care manager, social worker or family therapist.
Prior to the meeting set ground rules such as agreeing to only discuss Mom’s diagnosis and not past wrongs or misdeeds. If the discussion gets heated or off-track feel free to pull it back or implement the use of an object that must be held in order to speak.
Have the exact diagnosis and any pertinent medical information regarding your loved one’s condition available for everyone to see. Also include the medical professionals’ contact information this enables others to contact the professional with further questions.
After discussing the diagnosis move on to your loved one’s situation as it stands now. What can we do to help them immediately? Can they live alone? Should they be driving? Delegate or divvy up the items, discuss plans and then prioritize. After looking at the present it is also good to discuss future issues and begin planning for those as well.
However, remember that a diagnosis of dementia or Alzheimer’s disease is usually not a sprint, but a marathon. It may be many years before you will need to face some of the more intense decisions in your loved ones life such as “Should Mom go on Hospice?”
After the meeting write down what was discussed, including who agreed to do what and by when and then distribute this written log to all involved. This will ensure that everyone is on the same page.
After the initial meeting, phone calls and letters it is important to keep in touch with those you have told. Perhaps you will want to hold regular scheduled meetings, set-up a phone tree or e-mail list. Make sure that you delegate someone else to take care of managing these communications.
Remember, as a caregiver of someone with memory loss you are already running the marathon. The focus of your strength and stamina should be to care for your loved one.