Much has been written about the recent announcement by your mother, University of Tennessee Coach Pat Summitt, that she has early onset Alzheimer’s at the age of 59. I know that it’s definitely caught the sporting world’s attention, but it also has had a wider meaning as people put a well-known face to this terrible disease (much as when President Ronald Reagan announced that he suffered from Alzheimer’s).
I was glad to see you bravely sitting by your mother when she was interviewed by the Washington Post reporter Sally Jenkins about the diagnosis. I found myself flashing back to this time six years ago when I was suddenly hit by my mother’s diagnosis. Admittedly, there are differences – my mother was further along in the disease than yours and I was in my 40s while you are barely into your 20s – but I still can vividly remember the sense of the rug being pulled out from under me.
So I thought I’d share the advice that several people gave me (as well as the information I had to find out the hard way) with you. Here goes:
- Be sure to take time to breathe over these next few years. I know that you’re going to want to be there for your mom, but you also need to make sure you take care of yourself. Being a supportive family member for a loved one with Alzheimer’s takes more time and emotional resources than you currently realize, so it’s important that you begin today in making sure that you take good care of yourself.
- Find out all you can about the disease. Since your mom was diagnosed by the Mayo Clinic, you have access to world-class information. But it’s really going to be important to learn about the progression of the disease as well as the day-to-day changes that both your mother and you are going to face, especially since this disease does not always progress in a linear fashion. There are lots of wonderful resources out there, and one of the best (which was recommended early on to me) is “The 36-Hour Day” by Nancy Mace and Peter Rabin. It gives you a lot of information that will make you go “a-ha” when you find yourself facing a puzzling situation with your mom.
- Be ready for increasing confusion. The interviews with your mother seem to indicate that she’s in an early stage, but you may see some uncharacteristic confusion in the very near future. The reason that I’m saying that is because of her job. She’s in a high-power position as the coach of a top-rated women’s basketball team, so high stress already is a daily fact of life. When you add in all the travel that she’ll face during the basketball season, you’re setting the stage for confusion. In my experiences, having a common routine and a regular setting are really important, especially as the disease progresses. So I’d encourage you to help her come up with a routine that she can take on the road games.
- Find a caregiving mentor – someone who has gone through the same walk that you’re going to be on. It may be difficult to find someone who is your same age who currently is or has been a caregiver for someone with Alzheimer’s. If you’re not able to identify someone, check with the caregiving groups in Knoxville or the Tennessee chapter of the Alzheimer’s Association. Meet that person and be ready to ask lots of questions and share your experiences. It will truly help you become a compassionate caregiver.
- Develop a core group who can provide you with support. This group can include family members or friends who are willing to be on call to listen, to step in when needed, or to whisk you off on a fun activity so that you can get a break from the caregiving pressure. You may not need them now, but stay in close communication with them about what you’re going through so they’ll be prepared when you call.
- Lastly, spend quality time with your mom. The disease has not progressed far yet, so ask her all the questions that you’ve always wanted to know (or think you might want to know eventually). Make time for Summitt family rituals and continually let her know how much you love her. Those are special memories that you can hold tight to as the disease progresses.
Take care and let us know how we can be of help!
Published On: August 31, 2011