Dear Family and Friends

Maybe it’s the lack of snow—we’ve had some unusually warm November weather—but I seem to be spinning my wheels a bit this year, struggling with what to write. 2016 was a good year. Sort of. Should I write about the summer Olympics in Brazil? The election of Donald Trump? The deaths of Muhammad Ali and Gordie Howe? And then it hits me. I want to write about Bill and tell you what’s happening with him.
I realize that I sometimes gloss over how he is. I have told you in a number of Christmas newsletter that he is fine, that he is doing well. Certainly when someone asks me in the grocery store how Bill is doing, I’ll say he is ok. And when he is with me, he is truly having one of those “good” days. But he and I both know that he is deteriorating (his word). His doctor at the Mayo Clinic says that he is now in the moderate to severe stage of his disease. So, I will not gloss over what is happening. Here’s what we know about his Lewy Body Dementia:
It’s the most common disease no one has ever heard of. Doctors know that LBD is extremely complicated, it’s often not caught or misdiagnosed and has no cure. Robin Williams was diagnosed with LBD only after his death. Just this year his wife said that it was a shame he didn’t know what he had; he simply thought he was losing his mind.
A person can be confused one moment and the next moment be lucid. At first when Bill was unable to understand something we had been discussing, I thought he was teasing me. But I’ve come to realize that this is the nature of the disease—moment by moment. When he senses himself not understanding something or he is confused, I know he finds it quite upsetting. We can spend only a few minutes trying to make sense of something; it’s simply too exhausting for him. And please don’t ask him to draw a clock or copy a box design. He watched as someone tried and failed to draw a clock for a neurologist on a TV drama, and he said, “There’s that damn clock. I know how that feels.”

Hallucinations start early in LBD. He sees things that are not there or he will misperceive objects. His nights are disrupted almost daily now; he sees people in our apartment, on our balcony or in our bedroom. A chimney may look like a person on a roof who is in danger of falling off. I reassure him that these things are not as he sees them, that we are safe. But they increase his anxiety, which is another major LBD symptom that presented itself early on in the disease. I wouldn’t think of leaving him at night but I can during the day for only an hour or two. If he falls in the apartment, he often can’t get up on his own so he worries when I’m not there. We’ve talked about his falls in my other newsletters and about his orthostatic hypotension. The meds to treat it work well until they don’t. We still deal with his blood pressure dropping so low that he feels faint or falls. So as you can imagine, getting out to restaurants for our Friday night date are getting more difficult for us. I’ve become more fearful of his falling because it still happens—at the grocery store, at his hair salon. As strong as I think I am, I cannot always hold him up until we can get inside the restaurant. We have a very strong son-in-law in Zack who has come to my rescue so many times as have our friends I have a handicap sticker, but he still needs to get to and from the car.

And, oh yes, I bought a wheelchair and a walker for him, but he doesn’t think he needs them, yet. He has reluctantly used his walker on the road out at camp. The road has no benches and so he sees the necessity. However, it’s been difficult to get him to use it walking at Northern’s Dome. Sometimes there just isn’t a bench when you need one. So last month I finally took the walker out of the backseat when we arrived at the Dome. He immediately told me to put it back in, “I’m not going to use it.” I quietly told him that was fine; that I would push it, and I did. I pushed the walker for a few minutes, and I urged him to give it a try. Reluctantly, he started using it by pushing it ahead of him and then walking up to it. Ok, whatever, I thought. But then he started having one of those dizzy spells. Only now I couldn’t get the walker out of his hands because he had a death grip on it, and I couldn’t turn him or it around so he could sit. I’m telling him to let go and of course he can’t; I knew he was going down and I couldn’t stop him. But at least this time he fell on top of the walker and didn’t hit the floor. It was a small victory, but an important one, as he will now use the walker at the Dome. The irony of progress. Sigh.

 

 

 

 

 

 

 

 

 

So life with Lewy Body Dementia certainly has its challenges for him. Everyday tasks take time to get done and they exhaust him. I’ll try to run out for an errand while he naps. His executive functions are gone, but he is very aware of his difficulties and “worries” about what he is to do. Ever the administrator, he will summon every ounce of willpower to answer questions to other professionals in as thoughtful a manner as he can. It amazes me how well he does. But he will often sleep for hours after such an encounter. It breaks my heart.

His challenges, of course, have been my challenges. Never in my wildest dreams did I ever think that my life would take this turn. It has not been easy, but helping the love of my life along this unexpected path is what I choose to do. I have been blessed that our friends and family want to help me, and help me they do. I couldn’t keep up with repairs and chores at camp if it weren’t for our friends (especially Jim Golden). Our neighbors at our weekly gatherings here at Tourville are so supportive, and then there’s Toni. Feisty, adorable Toni. She was a caregiver before she became Bill’s Wednesday afternoon companion for almost two years now. She allows me to get out for an afternoon of guilt free babysitting, and she gets him out, too. He feels safe with her.
To say that our life has narrowed considerably would be an understatement. Lest you think there is no joy in his life, let me reassure you that it comes in the form of a 2-year old named Greenlea. When I bring Greenlea back here for a visit with her Bapa, she will waltz through our door, shouting “Bapa, Bapa.” And then she begins: “Bapa, I am a princess (she’s wearing her Sophia dress, carrying a wand and wearing a crown.)

Bapa, Calwee ate my cookie.” So many stories for Bapa.  I love bringing her back here to play with her toys, run the halls and climb the stairs. She is well known at Tourville and has her favorite neighbors to visit. She will tell you her name, and when her curls are complimented, she will tell you that they are “just like my Nana’s.” Ask her age. She says, “2, in July.” See what I mean? Joy!

Scotti loves being a stay-at-home mom, contributing to Shana’s fashion blog for moms (themomedit.com) and creating beautiful brides in her makeup business. Her collaborations with her sister took her to Philly for a photo shoot and to Texas for a bloggers style conference. They work hard and they work well together.

This year, Zack started his own business “Oja Renovations.”  He specializes in painting, drywall and interior finishing.  My camp finally got a badly needed coat of paint—the entire inside was done.  We have big plans for next summer at camp, but that’s next year’s news, right? They returned to Lake Havasu in March for a visit with us, and we are already planning this coming year’s visit. Lake Havasu provides a nice break for all of us from the wintry weather here in Marquette.

We flew out to see Shana and Mike in early November. We had just a week there, so Shana and I hit the ground running.  We walked the boys to school every morning and then ran errands, shopped, or grabbed coffee and goodies to bring back to Bill.

Their home, with its renovated kitchen, looks amazing and is near the heart of downtown Philly, a 15 minute walk to Rittenhouse Square.  We took a yoga class, ate lunch at my favorite restaurant, The Parc, and attended “This Is the Week That Is”—an election special put on by an all comedy theatre production. We belly laughed at their irreverent take on current news and the two presidential candidates. Before the show, we ate dinner next door at her friends’ home, who hosted probably 15 of us. (An easy walk for Bill.) Moving to downtown Philly was a good step for Shana and Mike. They are on the go with friends, photo shoots, and activities for or with the boys.

Shana’s fashion blog is doing really well; she added another contributor this year. Her blog had over 2 million hits this year. The big news for Mike is that an interview he did for the US News & World Report was published in the Sept. 23 edition. It’s an interesting article about predictive analytics and healthcare, and how he went from missile defense to medicine.

(They spent only a short time in Marquette this past summer because in August, they were all off to France for a week and then Barcelona where they shared housing with Adam and Krysta, who were arriving from a trip in Morocco. Amazing photos from all four places.)

Raines and Pax couldn’t get enough of camp this year, which of course we loved. We have great photos of them kayaking, swimming, paddle boarding, playing monopoly and, of course, playing with Greenlea. We will miss seeing the boys this Christmas.

Adam flew to Lake Havasu in early March for a short, but sweet visit with us, and this coming year he is bringing the entire family out. What a great treat that will be.

We finally got back to Calgary in July—the first time in three years, and Adam and Krysta had moved since we were there last. Part of the problem was the flight. It left here at 6 a.m. and didn’t arrive in Calgary until 11 p.m. Way too long a day for Bill. I wanted a 2-hr flight. All I had to do was drive us to Winnipeg and hop on a flight there, which is what we finally did. Easy. ☺  (This also gave us a chance to visit with the Schicks in Winnipeg and to attend our annual evening at the Downs with them.) In Calgary, we stayed close to home, walking the neighborhood, enjoying the meals that Adam cooked for us and having those great conversations with Adam and Krysta that come with simply being there.

We almost saw Zachary play soccer. By the time we drove to the game, it had been called because of lightning, which was too bad as Zachary is a phenomenal soccer player.

Jakob is a baseball player on an all-star team and is in his senior year. Hard to believe he will be off to college next year. Where did these years go?

And speaking of years going by, I attended my 50th class reunion this past October. What a hoot! I made the rounds at the mixer Friday night, and almost to a person, I had to look at her/his name tag. Oh and I’m not going to kid myself, they were looking at mine, too.

So once again, I am running out of space, but not out of appreciation, love and gratefulness for the joy in my life, and for the love, support and kindness of family and friends. You are not just important to us; you are everything.
Love, Tina and Bill (Email: costwald@nmu.edu)

PS:  Favorite photos from 2016: