Friday, July 8, 2016

A Very Long Goodbye

Over a week ago bore witness to the passing of Pat Summitt, long time coach of the Lady Volunteers NCAA Basketball team out of the University of Tennessee. Pat retired from her position a few years back as the coach with the most wins in NCAA basketball ever, men or women's teams. Pat was not only known for a winning program on the court but top notch program off the court as well with a 100% graduation rate for her players, virtually unheard of in any college sport. 

Pat Summitt was forced to step down due to the encroaching effects of her disease. Coach Summitt was diagnosed with early onset dementia as a result of Alzheimer's. How early? Pat was only 64 years old when she died.  

Being struck down by Alzheimer's at such a relatively early age is not unheard of but it is decidedly outside the norm. For most patients, dementia is more likely to hit in the 70s. My wife's grandparents were quite advanced in years when one then the other began experiencing symptoms of dementia. My own mother was 72 when she was diagnosed.  

My mother will be 78 years old next month. She lives in an assisted living facility now which takes really good care of her. They make sure she has her meals and gets her medicine. They help her with her baths and whatever else she might need. It is, from my experience so far, a good place staffed with good people. Nonetheless, the fact that she no longer lives in her own home is still a source of distress for me, even if the decision to take her out of that home fell on my shoulders. 

Yes, it was the right thing to do given the resources available. In home care was not an affordable option nor was it a viable option for her to move in with my family or other members of her family. She has access to 24 hour resources that can help her whenever she needs help. And we visit her at every opportunity. My niece Julie who deserves some kind of an award for all that she has done for my mother sees her every other day, sometimes every day. And that's a woman with 4 kids and a full time job. 

The path of Alzheimer's is at once certain and uncertain. The ultimate destination cannot be avoided. Pat Summit, the all time winningest coach in the NCAA, could not avoid it at age 64. I look at my mom and I know where this is going to end. 

But when? And how? Alzheimer's is an incredibly insidious
condition. There are glimpses of my mom's very sharp mind that tells me she's just fine. And there are other times when she doesn't remember that I walked in the door 15 minutes ago. I used to take comfort in the fact that the former events outnumbered the latter. These days, the count is less encouraging. 

Recently Hospice became involved in mom's care. Hospice is known for its exemplary work with both patients and their families in times when the patient is at the end of their life. However, they are also involved with what is called palliative care. In these cases, the end is certain but the journey to that end is less so. Recently, my mother's doctor noted that my mom's condition had reached a point that Hospice would be of help. While the staff at the assisted living facility have been kind and caring, Hospice can supplement their efforts and provide more immediate, personal help to my mother.  

My mom isn't quite sure why the extra people are coming in to look after her. She lumps them all together as being part of the home she lives in now. And she does see the place where she is as home. She's made friends with other patients and with the staff. 

I have run into an odd thing and others in the family have noticed it too. Whenever possible, we check her out to have lunch or go to church. I like to take her to her favorite Chinese restaurant when I can. All the while, she seems fine. At some point, she'll say she needs to get back to the assisted living place. "They'll miss me if I'm gone too long," she'll say. Yet the minute we're back in her room, she gets disoriented. She'll ask how long we have to wait before the doctor will see her. Or she'll wonder why this room likes her room where she stays. It's confusing and confounding to me as I gently guide her back to the reality of where she is.  

That's the reality of having a loved one with Alzheimer's. It's a very long goodbye and one never quite gets used to it.  

Thanks for reading. And remember to be good to one another.  


Tomorrow and the day after, I've got two Doctor Who related posts coming up. 

Oh, and here's a picture of my mom with her son, the deranged hairy pirate. 

Doctor Who: The Dalek Planet - Episode Four

DISCLAIMER:  I'm doing this for fun, not profit. This is not officially sanctioned by the BBC and the producers of Doctor Who.   In c...