Dementia, Shrimp & Grits, and Merlot

Note: I share this story because I believe that the situation my family is facing is not unique. Many in my generation are caring for elderly parents and going through the same struggles that my sisters and I are encountering. And many more will be facing these challenges in the future.

I just spent the weekend in Pensacola, Florida visiting my elderly parents. They are now in their mid 80s. My mom has significant memory loss and my dad, who suffers from emphysema, is on oxygen 24/7. Neither one is very mobile and thankfully neither of them drives any longer. My father recently surrendered his car keys after an accident.

My mom
My mom

Like many, my parents failed to create an adequate plan for living out their final years. Their plan, as far as I can tell, was to live independently as long as possible and then have their daughters care for them. Years ago, when they were living near me in North Carolina, I took them to visit continuing care communities and even 55+ active lifestyle communities. I was successful in getting them to put down a deposit on a retirement community on two different occasions. Each time, after getting home and speaking with my sisters, they contacted the retirement community and withdrew their application. Then, three years ago, they moved to Pensacola to be closer to my sister Susan (the eldest). She has grown children in the area and had pledged to care for mom and dad. My sister Sharon, who lives in Vermont, has also promised on numerous occasions to move south upon her retirement and help care for mom and dad. So far, Sharon has been helping as best she can without actually making the move to Florida. My sister Kerry (yes, I have lots of sisters) has moved to Pensacola to help out.

Now we have a mess on our hands. My mother’s dementia is progressing. She can’t cook or even make coffee. My dad is getting weaker by the day. My sisters are exhausted from caring for my parents and have made great sacrifices. Meanwhile, the demands on their time are only getting worse. My dad is at least paying lip service to moving into a retirement community, but my parent aren’t in the kind of shape that any retirement community would accept them, particularly with my mother’s dementia. I tried to head this situation off at the pass 10 years ago, but my efforts were thwarted by the good intentions of my sisters.

It looks like our only realistic option is to bring in care to give my sisters some relief. My parents have been obstinate and rejected the one woman we brought in to help. I spent a good part of the weekend talking to my mother about being open to outside help. Unfortunately, with her dementia, she’s not aware of all the time and energy my sisters are putting forth to care for the two of them. She can’t remember all the trips to the grocery store, drug store, the meal preparation and the weekly doctor’s appointments. She just can’t remember. I explained to her that she simply can’t remember these things, but assured her that my sisters are going out of their way to keep mom and dad comfortable. I was able to convince my mom that I was telling the truth and we spoke at length about her memory loss. She explained to me that she was aware of her long term memory loss, but had no idea she was forgetting things that happened just yesterday. It was an important conversation, but I’m fairly confident that she won’t remember it tomorrow. And she won’t remember that I came to visit. By tomorrow she’ll be telling my sisters that she never gets to see me and will ask why I never visit.

There are many lessons that I am taking away from this situation. The learning that will most impact my life is the importance of facing the inevitable and truly planning for those final years. What kind of life do I want to live and how do I want it to impact my child? It’s interesting to me that my parents did not serve as caregivers for my grandparents as they became frail and ill; yet they have been comfortable placing that burden on their children.

To close on a positive note, I had some wonderful moments with my parents this weekend. In each of the last two years I’ve written blog post tributes to my mom in honor of Mother’s Day. Of course, she doesn’t read my blog. I sent her hard copies at the time, but those memories are long gone. So, at the urging of one of my sisters, I sat on the couch with my mom and dad and read them the two posts I’d written about my mother. It was emotional and she was touched. It meant a lot to her. Then I played them a couple videos of my conference presentations that I’ve uploaded to YouTube. I just showed them a few minutes of each so they could see me on stage and get a feel for my professional persona (which is no different than the Dan they know). They seemed to really get a kick out of the videos and my storytelling.

On Saturday night we also had a wonderful dinner to celebrate my dad’s 85th birthday. We went out to a fancy seafood restaurant with one of my sisters and my niece and nephew. The six of us had an amazing evening. My mother, who usually eats like a bird, devoured a large plate of shrimp & grits!  She chased that down with some crème brûlée, one of her favorite deserts. Dad ate a big steak and enjoyed a glass (or two) of Merlot. I don’t know how many nights like that we will have together as a family, but I am extremely grateful for that special evening. I am also grateful for my sisters who do so much for family.

5 comments on “Dementia, Shrimp & Grits, and Merlot

  1. Dana Smith

    Important message indeed, thanks for opening up and sharing .. always great to see your writing and to take a peek inside Dan . . glad you had a great trip . . .

  2. Oh my, can I ever relate! My mother has Alzheimer’s and my 7 siblings and I do the best we can to provide the support she needs to stay in her own home. It’s challenging. A few weeks ago, all of us, along with spouses, children and grandchildren spent the week together on Sebago Lake here i
    n Maine. I learned that while people with dementia may lose their cognitive memories, they are able to keep emotional memories, and that’s exactly what our week was all about! Good luck to you and your family Dan.

  3. Victoria Lennon

    Caring for a loved one with dementia is taxing in the best of circumstances. My precious mother was diagnosed at age 62. As her disease progressed, my father – who is very healthy, thank God – became unduly stressed by the constant vigilance required. When he couldn’t take a shower without fearing she would wander off, we put her in a 24-hour specialized unit. It was the best decision we could make as a family. Fortunately, my mom’s best friend’s daughter was charge nurse for that unit so we knew she received the best care possible. I really feel for you and your sisters, as it isn’t an easy road, especially given your dad’s health.

    As Diane noted, you will find certain aspects about your mom never leaver her. My mom never lost her sense of humor, even in the grips of Alzheimer’s. It was so wonderful to laugh with her. Enjoy your time with your mom, try to just be in the moment with her.

    Thank you for sharing your story. On a professional note, great job on your blog and your Twitter feed.

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