Friday, March 18, 2016

Traveling with Alzheimer's-An Update on BB

Last month our cousins from Nashville called my Dad and offered him their condo in Marathon, FL. They had rented it for the month of February and my cousin's heart doctor wouldn't let him travel so he generously gave it to someone he thought could use it. My Dad called me and said is this crazy? And I thought, Hell no. My father LOVES the water and I know that our time with BB is dwindling. Carpe Diem I told him and he booked their flights immediately. 

Then I started know how you are used to your kids being in daycare and then when you go on vacation it isn't vacation? Dad wasn't going to be able to do this by himself. Technically he could but he would get absolutely no reprieve. So I talked it over with Max and we both agreed I should also carpe diem and book myself a trip down there.

I arrived on a Monday into Key West and once in their rental car heard BB's familiar phrases. "I love you". "Yay". "I miss you". Those are some of her favorite things to say these days. 

We went to Blue Heaven for lunch (THE BEST!) but unfortunately since my flight was delayed we hit the lunch rush so had to wait at the bar for an hour. Mom gets testy waiting. Thinks that people are cutting in front of us, annoyed at people standing close...etc. She wandered over to listen to the live music and danced (wiggled) a bit and would get angry if we tried to get her to come sit back down. She cannot go to the bathroom unattended  and I was thankful I was there as this gets very awkward for my dad in public restrooms.
Once at our table all she wanted to do was pet the cats (which they ask you not to) and clean off the windowsill from leaves. If her food isn't finger food she needs to be fed and you will catch her doing things like drinking the ketchup to putting a knife in her drink. 
This is about how most meals went that week. I would sit with her and feed her and make sure she didn't chug her cocktails and try to keep her happy. She knocked back half a pina colada once and I said whoa BB, let's slow down and she got VERY ANGRY so I had to redirect her and point out fish or pelicans that were close by. It worked thankfully. She is much easier to redirect during the day. I am almost like a court jester to a queen. Keep her laughing and happy and she will be okay.....

Our daily routine would be Dad and I up early; he would go for a walk and I would log into my laptop and work from about 7am-11am. BB would come downstairs and have her breakfast on the couch and watch the Today Show while cleaning up specs of dirt on the floor, the table, anywhere. We would venture out everyday for lunch and tool around the different Keys and then back to our place for the afternoon and then back out for dinner. I forgot how beautiful the water is down there and we ate nonstop amazing meals all along the water. 

The entire trip had mom totally confused. Whose place were we staying in? She thought her cousins owned it, that took 4 hours of repeating the explanation to get her to stop asking. Tuesday when she woke up she had no idea I was there and couldn't figure out when she saw me how I got there. She no longer walks, she shuffles but its almost a shuffle stomp. She hangs on to her purse barely just as a kid would drag a lovie behind them. 

I was thrilled that Dad was able to go fishing one day. That made my whole trip worth it. This man loves boats and being on the water. If Mom didn't have Alzheimer's he would have rented a boat for the week and been on there every single second.

But the entire time he was gone she didn't know what to do. Where is he? Why hasn't he called? How is he coming back? How did he get there? She didn't articulate as I have typed but those were her general questions. Her way of asking is "My Man?" "When coming back"? 
Even when he would step outside for a business call or to see the sunset she would wait at the door for him, almost like a puppy dog. Her separation anxiety from my father is off the charts.

Our last day my Dad woke up with the stomach bug. Normally this would be no big deal but this was too much for mom to understand. I ran to CVS and got anything he could need and made her lunch ahead of time but I was scheduled to leave Key West (1.5 hours away) at 3pm that day......and nobody to take me there. I offered to change my ticket but Dad insisted I leave. I think this was a realization for the both of us. If Dad's health takes a turn, even for something like a stomach bug, he has no help. Mom sat there so confused and saying she wanted to leave not understanding Dad couldn't drive. I ended up taking uber to Key West but the entire situation brought new light to what we are dealing with. Dad cannot do this alone anymore. He has daycare during the week but what if something happened to him at home one night? Mom wouldn't know what to do.....

I think in BB's eyes she enjoyed Florida. She got to see manatees and dolphins and made friends with pelicans. Animals are her favorite thing right now and everywhere we went she could talk to them. 

But I don't think she loves traveling anymore. She likes to be somewhere familiar and while she uttered her other favorite phrases "I love it here", "So beautiful here", we know that this was probably her last big trip. She would get very tired just walking around a few of the resorts and went to bed most nights by 8pm. So as much as we want to take her on fun trips before the inevitable, she is the happiest at home with her Boykin, Gumbo.
We have our annual beach trip in July and I honestly don't think that she will be able to handle it. She cannot do stairs alone, cannot use the restroom alone, cannot eat alone, and typically cannot be alone at all. I can't help my Dad in the capacity I normally do because i will have two young kids to sunscreen down and chase all over the beach. If she is able to go we will need full-time help, and it would truly be her last trip. Ever. This might sound like I'm being selfish not wanting to deal with it but you have to think about them. She doesn't like the sand, the heat, the water, and when my kids are loud and crazy it sets her off. Would we be bringing her on that trip for her....or for us?

My Dad asked me how I can be so matter of fact about what is going on. He still sees the woman he has been married to for 42 years sometimes. He tells her to dip her quesadilla in sour cream and I signal to him she doesn't need it. We went to an Italian place and he wanted her to get pasta but I made her order friend shrimp (for the 3rd day in a row) because its easier for her to eat. He so badly wants her to wear the Pink Lilly Pulitzer dress her bought her last year but she can't fit in it anymore. This is so incredibly hard for me and my brother but exponentially harder for my Dad. And I feel like it is my job to put on my superhero cape and help him plan, organize, and make this transition as smooth as humanly possible. I have my moments, just ask Max, but as my friend at the ALZ Association Scott told me, "it's good that you have hardened a little to the disease. It is the only way to survive it as a caregiver."  It is brutal..... quite possibly the most heartbreaking thing I have ever experienced but for me to help my Dad take action I need to try to quiet the mother-daughter aspect of much as possible...... and put on my planning hat.

Thank you for reading this. And for praying for us on this journey. I hope this somewhat enlightens people on how devastating Alzheimer's is for all. 


  1. Thank you for sharing is a beautifully written explanation of what y'all are going through..I am thinking about all of you a lot during this very heartbreaking time and I will help in any way I can so don't hesitate to call me. You have been a spectacular daughter to Robin and Barbara. Your Father has told me many times that he doesn't know what he would do without you. I hope you have a wonderful Easter in Arden. Please give your parents my love. ❤️❤️❤️�������� Mollie

  2. Katherine, thank you for sharing. This is heart breaking and so tough and unfair. But I look forward to your updates because I have come to care about your family as a reader - and we are Insta buds and with Richard in common (I don't know if you remember, but I commented back on your post about Richard Bagnal - he was a good friend of mine from high school)... I don't know if I have ever mentioned but I work at Wake Forest Baptist in the Geriatrics Department and we have an Alzheimer's Center here and a wonderful man here named Ed Shaw - do you know him? There is a lot going on here and would love to send you information if you were every interested. I know you have probably gone further down the rabbit hole with other centers and locations, but just wanted to offer it up. And you and your family are in my thoughts. Alzheimer's has affected my family as well and I hope if it does happen to my mother as it did her's, I can handle everything with as much grace and strength as you have.

  3. Thank you for putting you heart on the line for us and sharing….cannot imagine what you and the family are going through, but your descriptions help us see just how heartbreaking ALZ is. I'm sending love and good wishes to you all.

  4. My heart aches for you all and I love you so much. Thanks for letting us share in your hard journey. Hugs. Wish we were there to help.

  5. Thank You for sharing, Your views are so helpful. Alzheimer's has touched my husbands family. His grandmother great Aunt. His parents both died from something other, But taking care of his Great Aunt was very difficult, on everyone. I am so thankful that you are sharing your journey. It will help others down that road..We need more research. With people like yourself making more people aware maybe down the road we can find a way to prevent the disease all together.