The New Normal (Our Life with LBD)

I don’t really know if it can be called normal. Normal seems to mean that something stays the same over a period of time, long enough that you can grow used to it. We can’t seem to grow used to things that are changing all the time as we deal with the husband’s problems. “Normal” has come to mean regular frustration as he deals with less of almost everything he needs in every situation.

It snowed yesterday and was wet, slushy and slippery everywhere we went. The husband’s shoes were getting wet and were clearly not what he would need for winter, so today we shopped for boots. This is something we both remember him doing by himself, but since he no longer drives, I am with him everywhere he goes.

The first thing we had to do in the shoe department was find a place to sit down. Dennis can’t walk very far or stand very long without getting tired, and he always has to sit to put on his shoes. We struggled. Putting on boots can be such hard work. I fetched pair after pair from the shelves, opened them up and pulled and pushed until he could get his foot down inside. Each time he had to stand and test out the feel of the boot. Up and down, over and over. He was worried about the small bench he was on as it would start to tip as he pushed himself up. We finally found a pair. I think he would have liked to go home at that point, but he had also wanted to get a new watch.

After pointing him in the direction of the jewelry counter, I thought, briefly, that I would let him look over the options and choose. But no, I decided it would be easier if I helped him so we went together.  His vision is one area where “less” keeps happening. In order to see the time he decided the face of the watch had to be white, with dark hands and numbers that were easy to read. No shiny reflective surfaces would be suitable. The band had to be easy to close. He would have liked one that showed the date, but finally decided that he would do without since he couldn’t read those small letters anyway. It didn’t take us very long to pick one out but by then he was really tired. He went to the pharmacy where they have benches, and sat waiting while I got a few groceries.

And we are getting very good at finding restrooms in all the places we go. This was Walmart and he had to walk to the far end of the store for that before we could leave. He walks very carefully, and very slowly.

Often we think of dementia as robbing a person of their memory first. That is not a given with Lewy body dementia. Right now some of the husband’s most frustrating symptoms are motor related. He has less strength, less balance, less flexibility, less stamina. He will tell you that he is also forgetful but I find that he can make himself remember most anything he wants to, given enough time. He may get overwhelmed with thinking too hard, but he still thinks correctly. He remembers. And that is what is hard – remembering what he used to be able to do, but no longer can.

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We got the boots.

4 thoughts on “The New Normal (Our Life with LBD)

  1. New normal is not always what we had signed up for but somehow the end result does happen. Great job on the boots. I have learned that online shopping takes away a lot of the motor shopping frustrations. Both my husband and I are impatient shoppers so browsing through online choices solved that delema. Besides most stores do not carry size 15 triple E sneakers slippers or boots.

  2. Shirley and Dennis, It sounds like this is quite a struggle. We will continue to pray. One thing I’ve learned, no matter what happens, I simply don’t stop praying. I spoke with a very good friend (80 year old pastor) who was diagnosed with Stage 4 lung cancer. I was doing a concert in his church the morning he told his congregation. He said, “I’ve taught you how to live, now I’m going to teach you how to die.” The doctors gave him 9 mos. to live. That was 10 years ago and today he is well and still pastors in the panhandle. We will continue to pray. Love you both.

    • We certainly haven’t stopped communicating with God about our lives, and thank you for your persistence as well. We are asking for what we know he can do, and at the same time resting in what he is allowing. Is that contentment? I hope so.

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