The legendary Pat Summitt (Coach of the Tennessee Lady Volunteers womens basketball team) recently disclosed she has early onset Alzheimer’s dementia. She is 59 years old. Reporters asked other coaches and past players to comment and they invariably said things like she is tough and she will make it through. Pat Summitt is undoubtedly a very tough and accomplished woman whom I admire immensely (even if I haven’t forgiven Tennessee for beating Rutgers a few years back). But dementia is not cancer, and you cannot beat it. You can be brave as she has been and use your celebrity as an opportunity to educate people about a horrible illness, but inevitably Pat Summitt will cease to be the person we know her as. There is just no getting around it.

I understand that when reporters ask such questions people don’t want to say how difficult her life and the life of her family will eventually become. Their lives have now been changed in such a profound way that there are no words for it. Her family will watch this celebrated woman become confused and watch her personality change in ways that they cannot even imagine at this point. They will need to make decisions on how to best care for a woman who probably hasn’t asked for help much in her entire life. Does she live with her family or in a facility? Does she go to day treatment or does someone to come in and check on her? I hope the days are long before her family has to answer those questions. I also suspect that when things get bad Pat Summitt will disappear from public eye and we won’t hear much again until she passes away.  Her family will make that decision to protect her legend. It is the same decision I imagine I would make in those circumstances. But if we never see dementia sufferers or their families when the illness gets bad, how will we ever have any idea of what to expect if it happens in our family. Many of us who are now middle aged are going to face this struggle with our own parents. Perhaps we have already watched our parents go through it with their parents. It is estimated that 1 in 8 Americans over 65 gets dementia and half of those over 80 have it.

Yet do we ever really hear the caregivers talk about it? The toll it takes on them to care for a parent in one of the most difficult struggles that they will ever face. What it is like to take of the person who always took care of you, or even worse take care of the person who didn’t take care of you. The emotional toll is devastating, but caregivers often don’t talk about it because they may feel resentment, but not want to admit it. You can deeply love someone and still have feelings of anger, sadness, and frustration while you are taking care of them. Care giving is an emotionally charged and complicated position to be in. Yet we don’t talk about that part of it. Most of us don’t know what to say to someone going through it. A caregiver may not reach out because of guilt or just feeling so emotionally burdened that they cannot talk to others. Alzheimer’s causes a grief that can go on for years. You lose the parent numerous times before your parent is really gone.

I wish Pat Summit and her family all the best. I hope she has many years of coaching ahead of her. But I also hope as our country ages that we start talking about not just those who suffer from dementia, but their families too. Let us not just pretend that it gets better, because it doesn’t, but we can help people feel supported in their own struggles.

Please add your story to the comments.