Pat Summitt's Son and Crossing Over to "Caregiving"

A diagnosis of Alzheimer's disease affects families in ways they can't yet fully appreciate.


Last updated: August 29, 2011
Aspirations!!!

Tyler Summitt is a caregiver-to-be. That's what I kept thinking as I saw him sitting in interviews beside his mother, the legendary University of Tennessee women's basketball head coach Pat Head Summitt, who announced last week that she'd been diagnosed with early onset Alzheimer's disease at age 59. At some future date, this college student will cross the line from supportive son into caregiving son.

Here at Caring.com, we talk a lot about the "uh-oh moment," when you first realize undeniably that your parent, spouse, or other loved one has a life-changing -- or lives-changing -- problem. Tyler Summitt has been there already, wondering about his mother's memory problems even before her diagnosis by the Mayo Clinic. But he's sure to encounter another family-member milestone: Realizing that, wow, I've become a caregiver.

Caregiving is an identity that can sneak up on you. At first, you just feel that you're helping your loved one the way you've always provided various emotional and practical support. You're doing what mates or children do. You don't think of yourself as a "caregiver."

Then, almost before you know it, comes the day when you're writing all your loved one's checks because he or she can't. Or you're lining up pills into pillboxes and doling them out. Or you're changing his or her diaper. The nature of your relationship has subtly (or not so subtly) shifted. And your own life, increasingly, risks taking a back seat.

Even if you still don't identify with the term "caregiver," you've become one. You may be a long-distance caregiver, a hands-on caregiver, or a part-time caregiver -- but your primary role as "son," "daughter," "wife," "husband," "grandchild," "niece," has morphed into a dual identity.

Tyler Summitt faces an extra inevitability about this role, since his mother is divorced from his father and he's an only child. Even though Coach Summitt probably has a vast support network and can afford the best professional help, managing caregiving tends to fall especially heavily on the shoulders of an only child.

Do you remember the moment or phase when you first thought of yourself as a "caregiver?" What advice would you give Tyler Summitt and the other caregivers-to-be out there, who know there's been a game change in their lives but can't quite yet visualize the center-forward role they'll be playing?

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18 Comments So Far. Add Your Wisdom.

almost 3 years ago

Anonymous: In a nutshell, Alzheimer's is a type of dementia, the most common form. Dementia is the general name given to a set of symptoms (memory loss, cognitive changes, etc) and can be caused by Alzheimer's, strokes, brain tumor, and many other causes. Type "dementia Alzheimer's" into the search box at the top of the page to see more explanations.


almost 3 years ago

you have said it so aptly. i never imagined how hard care-giving can be. when mom was diagnosed with dementia, the implication of the diagnosis did not sink in as i knew very little about the condition. this was the first time i had seen any person with the condition. i had heard of the so-called second childhood in some aged individuals and had imagined it would be cute e.g, a grandparent wanting to play hide-n-seek. in the beginning i did not think my life would be impacted so deeply. hiring help, i was sure, would give me all the freedom i was used to i must have thought that, though i can't actually remember do so: " when she gets better..." as i remember looking at it as a passing phase. reading and firsthand experience have taught me better it was obvious very soon that i had a real problem on my hands and mind. still considering myself a care-giver came so much later: it was only when a doctor friend of mine pointed out to me that as a care-giver i must care for myself too. i am full time care giver with adequate help, the stress of having to gauge my mother's needs and keeping her comfortable is extreme, considering that she cannot talk at all.


Anonymous said almost 3 years ago

Can someone explain the difference between Dementia and Alzheimer's?


almost 3 years ago

To "anonymous" who wrote this: "Tyler is just a college student...hadn't even had a chance to make his own life yet...probably not even 21 yrs old yet. And now the "curse" of the only child has hit him right between the eyes. Hopefully, his mother has a sibling that can "take the reins" for a while and allow him time to have a "normal" life." First, a curse? Second, what is a normal life? What if Tyler's Mom had cancer, or another illness? Don't we as family always get involved whether it be an illness or accident? Don't we all make adjustments when a family member becomes ill? I don't wish ill will on anybody, but illness/accidents are not planned, and therefore it doesn't matter the age. I'm just a little set back re: that comment. Let's put it this way: I'm 56 and had no clue I'd be taking care of my dear Mother at 93. I already had enough on my plate as I have a husband who had a severe head injury 3 yrs. ago and has Lupus. At this age, before my husband got ill, I had just retired, was enjoying it immensely, and then all Hell broke loose. That's okay though! He is still here with me, we are managing Mother's care, etc. What I'm saying is, illness has no boundaries when it comes to age or where we are in our lives.


almost 3 years ago

Great article and great comments! We discussed something similar in our blog regarding how Pat can alleviate many of the difficult decisions her son may have to make (http://bit.ly/q2iQeK). It is so important for her to keep control over her health care decisions down the road. By putting the proper documents in place TODAY she will be giving such a great gift to her son. Wishing her and her family well during this difficult time.


Anonymous said almost 3 years ago

Tyler is just a college student...hadn't even had a chance to make his own life yet...probably not even 21 yrs old yet. And now the "curse" of the only child has hit him right between the eyes. Hopefully, his mother has a sibling that can "take the reins" for a while and allow him time to have a "normal" life.


almost 3 years ago

Thank you for the follow up. I am well acquainted with 'younger onset' AD. My now 61 year old wife first displayed her symptoms at age 55. The 65 year age was set decades ago when researches arbitrarily used it to define subjects in their studies. At that time the disease was called 'senile dementia'. (the word senile meaning merely "old"). This gave rise to the awful stereotype of senile = dementia = all old people. A common unfortunate experience among people diagnosed at ages below 65 is going to their doctors with all the symptoms of dementia and being told that "I dont know what you have, but it cannot be AD because you are too young". As you know this delays any possible treatments and the necessary preparing for the inevitable. New information about brain function and dementia mechanisms are almost a daily occurrence. I believe it is the job of us, the AD community to exert pressure on society and the medical community to abandon older language that reinforces ineffective stereotypes for terms that better define and describe the entire situation. It is not about political correctness, it is about diagnostic correctness. When famous persons come out about their diagnosis it represents an excellent opportunity to do so.


almost 3 years ago

m-mman, let me chime in to add that both terms are used: "early-onset" is the original term (as in, earlier than the classic form) still the most widely used, but there's a shift to "younger onset" or "young onset" ... of course these newer terms imply that anyone over 65 is "old," a characterization that most 65-yr-olds I know take exception to! You said it best: "Should not happen to anyone" --


almost 3 years ago

Hello m-mman, Thank you very much for your comment. Early onset Alzheimer's disease is a widely used term that refers to Alzheimer's which occurs before the age of 65. If you'd like to learn more about early onset Alzheimer's disease, you can do so here: ( http://www.caring.com/questions/what-is-early-onset-alzheimers-disease ). I hope that helps clear things up! Take care -- Emily | Community Manager


almost 3 years ago

"she'd been diagnosed with early onset Alzheimer's disease at age 59" Oh come On, PLEASE dont say EARLY onset! If early onset happens before age 65, then onset happening after age 65 is considered "ON TIME" (!) . . . Do the folks at caring.com really believe this? There is no correct age for developing AD. It should not happen to anyone. She might have YOUNGER onset, but it is NOT EARLY!


almost 3 years ago

I care for my 94 year old mom with dementia full time. When I was growing up, she was my heroine. She still is. You will realize that your life events and experiences have been preparing you for what you are facing now and for what is to come. Always exercise patience, bearing in mind your mom won't be aware of what she is saying and doing much of the time. Wish I could say it gets better. Unfortunately, it doesn't. Take advantage of all the help you can get. Remember to take care of yourself. If you lose your health it would certainly affect your mom's care. Think of all the years she took good care of you and know you are returning that love and care now. Be thankful in all things. My thoughts and prayers are with you, your mom and your entire family.


almost 3 years ago

The ironic part of this Tyler is that your mom help pull my 76 year old mother off of the coach per say. My dad passed 10 years ago and i, being the youngest of 5 children , now at 43 years of age take full care of my mother at lost her sight in one eye and now has a walking cane. My point is i would not have it any other way. I told mom if you give up on living then i give up and i was raised to never quit anything from my dad.I told her we would do her dream ..to see her Lady Vols life and i kept my promise and for the last 3 years i have been able to take her to a few games....She( MY mom) thinks your mother is the greatest always has and always will...The bond we have now is closer than ever..she is my best friend...it will all be o.k.


Anonymous said almost 3 years ago

Tyler, I am sure holding you to the Father. I am dealing with a husband who has Alzheimers. My mother and mother in law had it also. It is hard and I won't try to sugar coat it but it can be the sweetest time in your life. Your mother has sacrificed so much for you, and now you can help her in return. Don't forget to let others help you, you cannot do it alone.


almost 3 years ago

While I don't like to see others in the same boat, it's just good to know we're not alone. This is a most helpful site overall!


almost 3 years ago

The article asked when caregivers had their aha moment going from support to caregiving. Mine came when for the second time my husband didn't find home anymore. The first time, I figured it was a fluke, the second time not so because the many other little oddities began to come together and the fuller picture "suddenly" became visible. Yes, I was in denial although there were many incidences but of course I wasn't looking. Once my eyes were open, the deterioration seemed much faster than what I had noticed before.


almost 3 years ago

My advice is to check out all resources in Tyler's Mother's community. There is a lot out there that I didn't know about until my Mother needed it. Apply for anything and everything. Check out your local Council on Aging, even law enforcement. Reason I say law enforcement is the area my Mom lives in, has wonderful programs via the Police Dept. There are also Caregiver Groups and Respite. The mistake I made was not being proactive.


almost 3 years ago

Tyler my Mother was diagnosed with Dementia in the early part of 2002 at the age 86, up until that time she had enjoyed good health and the only Medicine she took was an aspirin a day, Dementia as it was explained to me was a fast moving Alzheimer's, soon after she was no longer able to live alone and me being the only Daughter, I gave up my place and moved in with her, I was still able to work the first 6 to 8mo.with the help of my Children, but when she took a fall and broke Hip and Elbow, she came home bed-ridden in diapers and had to be fed and bathed in bed, not expecting my Boys and their Wives to give up their lives to help, I took a leave of absence at work and stayed home to take care of her,she passed away in her sleep Sept.21,2003 and I have no regrets, I know I made the right decision, about 6mo. before she died she told me our roles had reversed and I told her 'You took care of me when I needed it and I WANT to do this for You' My Mother never forgot who I was but towards the end she quit talking and all I wanted was to hear her say she Loved me one more time, so I Prayed and I Prayed that I would hear it again, and one morning about 2wks before she passed, I awoke to voices and it was my Mother and one of my Daughter-in-laws carrying on a conversation, Mama hadn't spoke a word in 3wks but she was sure talking now, I told her I loved her and she responded with I Love you too Baby, she must have spoke those same words 50 times that day, when she awoke the next morning she was not talking, and she never spoke again, but I knew my Prayers had been answered and all I could say was Thank You God,Thank You. Now my Prayers will be w/you Tyler and I know you can do it, you WILL get frustrated and when you do go outside and scream,cuss,stomp your feet or throw something but most of all Pray,Pray and then Pray so more, ask God to give you the strength and the patience to do your job, then go back inside. Being my Mothers caregiver was the hardest job I ever had and the most rewarding. God Bless and keep you, Praying for you and your Mother.


almost 3 years ago

I would add that if Tyler Summit is married, his spouse also needs to be fully invested at least in his role as caregiver, and possibly in hers as well. They need to discuss it up front, in so much as is possible, what the expectations will be for both spouses. As Coach Summit's need for care increases, Tyler and his spouse need to deliberately carve out time to spend together. Often, marriages break up or deteriorate as caregiving consumes more time for one or both spouses.


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