mobility

Bittersweet

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THOUGHT FOR TODAY: The bitterest tears shed over graves are for words left unsaid and deeds left undone. -Harriet Beecher Stowe

This TFT came via Anu Arg’s newsletter to me this morning and when I read it two thoughts occurred to me. The first observation is yes but more importantly talk to the people you care most about and listen to them. The second observation is that I have been getting Anu’s newsletter since he started it in college about 1994-ish. Long ago and several email servers back. He and I share a love of words and their meaning both old and new. Today’s word is chirk. An old one that means cheerfulness. (Such a contrast to the TFT)

The Last Day

Today is our last day at the beach in Florida. Is it bittersweet? Tomorrow morning we will return home to our regular daily life (sweet). Am I reluctant to leave this Florida beach (bitter)? No I am not. It was/is however a nice change of pace.

Florida is hot. The humid air sticks to you like Luke Skywalker does to Mark Hamel. Fine white sand is everywhere. Tile floors although easy to maintain feel like a NHL practice rink just before the Zamboni comes out to a parkie unsteady on her feet. Those are a couple of the nuances that did not dissuade us from taking the opportunity to come here with Anna’s family. The experience was sweet. Going home will be sweet as well. No bitterness here.

Cheryl made it through all of the little inconveniences that come with being away from home and slightly off schedule for several days. Her schedule is very different from the rest of us and especially me. I suppose that I should be more cognizant of that but I am not. I am always hopeful that her disease interlaced with dementia will cure itself and we can move on with our life, run around and travel, drink fine wine, keep a schedule, make love again, just simply be. And that makes me forget where she is and where we are. Alas.

Red flag day

There is only sweetness coming when we get home. This vacation adventure with our daughter’s family has been hard on Cheryl but she does not seem to know it. She only knows that I am angry when she is doing something different than I am trying to get her to do. The page I have here about Dementia alludes to a lot of those little daily frustrations that I have observed. I should read it more often. Daily, perhaps?

… talk to the people you care most about and listen to them. Even when they are suffering with dementia and memory loss, she is still in there. Thanks, Anu. I often forget about that. The bitter can overwhelm the sweetness.

Carpe Diem.

Walks on the Beach and other Memories

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Our selfie

When the children were small we began a tradition of making a trip to Myrtle Beach about once each year. The company that I worked for at the time used a pair of common vacation weeks which always landed at the end of July and the first week of August.

The company paid us salaried folks every four weeks called a period. The vacation weeks were the middle two weeks of the eighth period of the year. There were thirteen periods in a year and every few years a week was added to the thirteenth period to correct alignment with a normal calendar year. The Roman’s and later on the Pope would have been proud of Cincinnati Milacron.

Every year for 15 years or so our family went on vacation in the hottest part of the Ohio summer. Since my father worked for Milacron the memories of this vacation time goes back to childhood.

Cheryl liked to hike and walk. Not being an especially athletic person she substituted hiking and walking for any other athletic endeavor. At Myrtle Beach we would get up early hike the empty beach. It is where I first saw the green flash that occurs when the sun comes up over the ocean.

On other vacations over the years hiking was a big motivator. In every state park or national park or area that we stopped in walking and hiking was a major part of the experience. Maps were collected upon arrival and put to good use during the stay. In one Kentucky park our hike was about ten miles. It is without a doubt the thing I miss most with the onslaught of Parkinson. Her struggle to walk freely and move easily is disheartening. It was in many ways our main entertainment.

Conversation, discussion, debate, points won, points lost were all accompanied by a satisfyingly long walk. I think I miss those more than I can easily express.

Today my daughter and her husband took a long walk down the beach together. I was envious.

The hat

This time at the beach I am pushing her here and there. There are special wheelchairs for the beach and they are free. There is good ice cream across the road. I pushed her there too.

Carpe Diem.

More AHA Moments – Boats

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Cheryl told me she is scared to be on her brother’s boat.

Recently Cheryl’s youngest brother invited her and the rest of her living clan and clan-in-laws for an evening ride on his pontoon boat that he moors in a small man made lake near his home in southern Indiana. I am always on the hunt for things to do with her that let her socialize a bit out of and away from our little condominium living situation.

Since Ken’s text message came to me on the family text chat, I told her what he proposed. Cheryl responded with, “I will think about it.” This is a phrase that she learned from her mother as a small child and she has used throughout our fifty years of marriage and many times during our child rearing years. Roughly translated it means “NO” or “no thank you.” But being the polite person that she is, she does not want to hurt anyone’s feelings, she rarely says no directly. (She also learned this from her mom.)

Cheryl has a lot of her mother’s traits. She does not want to put anyone out. She does not want to offend anyone. She can be angry with me as could her mother when she thinks that is appropriate, as when I am being pushy. She does not want anyone to stifle their good time by worrying about her welfare. She is okay with isolating herself to (her perception) benefit others. She enjoys the presence of small children even if the small children are unsatisfied and complaining about it. She enjoys the presence of big children and wants to be a part of their life even if the big children are uninterested in letting her in. She likes big family gatherings.

Most recently she has a new special Parkinson’s patient walker to help her move around with steadiness. After her appointment with her MDS neurologist on her birthday several days ago, I ordered this for her. In the picture is her new U-Step. I should have gained my AHA here since I just ordered this over the phone three days ago. (I am buying her a stabilized walker and suggesting we go on a boat that will wobble every time someone moves.)

U-Step walkers are designed specifically for folks with PD to give them a strong base to walk with and against

But, getting back on track, she said to me that she is scared to be on Ken’s boat. That is the first time she has ever expressed that to me.

AHA MOMENT – Occasionally these pop up and I cannot always understand her needs. Prescience is not a strong trait of mine. But imagine for a minute, here is a person with balance issues and I am promoting going on to a less stable surface than she is used to. She can lose her balance and fall backwards when changing positions in our living room. Our building is built on a slab. It is hard to get a more stable surface. AHA (you moron).

Ken caught on pretty quick and proposed dinner tonight on the deck at Willie’s restaurant next to the puddle (his term for the man made lake.) Tonight is anything goes pizza Tuesday. Willie’s fits into the anything goes part of pizza Tuesday.

We will go tonight and take the new walker for practice and hopefully greater stability.

Carpe Diem.

Once in a while the road seems straight even when it is not.

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