The Next Stage

By Bud Focht

Hi, my name is Bud and I am not quite sure if I am ready to take my caregiver career to the next level, but it appears I have no choice.  I got the call. I’m going to The Show, as they say in minor league baseball. I’m going to be on the Big Stage, as they say in acting.

The Big Stage because I am afraid my wife Terry’s condition has progressed to the next stage.

‘Progressed’ is a curious word to use there. Progress usually means something good, something positive.  This is anything but.

I am sorry to say that Terry has advanced from the mild to the moderate stage of her Early Onset Alzheimer’s Disease.  I always knew this day would come, although I prayed that it wouldn’t.  It was inevitable. The meds she has been taking could only slow it down for so long.

In everything I have read, Alzheimer’s Disease is classified into stages. Some break it down to seven stages, some to three stages. They all have one thing in common. Each stage gets a hell of a lot worse. And each stage requires a hell of a lot more from the caregiver.

According to the medical journals that classify in seven stages, Terry has moved from stage three to stage four.

Other materials I have seen keep it to a basic three stages; mild/early is stage one, moderate/middle is stage two and severe/late is stage three.

If we are going by the three stage approach, Terry has moved from stage one to stage two.

This is the longest of the three stages. This is when Terry’s happy-go-lucky personality begins to change. She begins to get scared, frustrated.  Or angry.

The other day I came home from work at lunch time, as I always do for the last year or so, and Terry was crying and she started yelling at me that she hates me because I leave her alone all the time.

All the time?

I leave for work around 8 or 8:30 in the morning and am back home at 12 noon to spend lunch with her. I stay as long as I can, usually until 1 or 1:30 and I am home from work at the end of the day by 5pm. I often work at night and on weekends but fortunately this time of year I can do a lot of that from home.

When I am not home I have lists of things for her to do, to keep her busy, entertained. Do the dishes, wash up, brush your teeth, dress for the day, watch TV, listen to the radio, read the paper, call Bud.

Later that day and the next day Terry was very apologetic about what she said and told me over and over the way she really feels about me. She just really does not like being alone. More specifically, she does not like being without me. She trusts me, and needs me, to make more and more of her decisions.

I realized that it was not Terry yelling at me but the disease. I think the last time Terry yelled at me was in the 1980s. I think the last time she told me she hated me was when she was in her 32^nd hour of labor with our first child’s natural childbirth. (She didn’t really say it but I could see it in her tired eyes).

Thirty-some years later, she has begun acting in unusual ways, textbook behavior according to the journals. I realize this is due to damage to the nerve cells in her brain and it makes it difficult for her to express her thoughts, to perform routine tasks.

Some tasks about as routine as they get.

Thirty-some years ago I lived in New England for a while and there was a local plumbing business that had a controversial slogan. On the side of their trucks and on a billboard in town it said “Need Help in the Bathroom?”  Being in my early 20s I thought it was funny but after countless letters to the editor and talk radio show complaints, the company changed the slogan. Basically, they just erased the “in the Bathroom” part.

That is the part that I wish I could erase. The fact that Terry now does need help in the bathroom.

Not all the time, mainly first thing in the morning, but enough times to make me worry about our road trips. Fortunately the road trips are done for this year, and who knows what next winter will bring. I don’t even want to think about that.

For now we will try to make the most of the spring and look forward to summer when I am home even more.

The next stage. The ultimate for caregivers like me. Of the three stages this is the longest and probably the last one that I can handle on my own. I am afraid the final stage is out of my league.

Until next time, hope you can enjoy the next stage of your life.

Bud

Sun Upping

By Bud Focht

Hi, my name is Bud and one of the best days of the year for me is coming up this Sunday. Day Light Savings. The day we turn the clocks forward. There is nothing better than delaying sundown.

I have been doing a little reading on Sundowning lately, but I can’t find any information about Sun Upping.

Sundowning is a symptom of Alzheimer’s Disease and other forms of dementia. It is a psychological phenomenon associated with increased confusion and restlessness. It is common with Alzheimer’s patients for confusion and agitation to worsen in the late afternoon and evening, or as the sun goes down, hence the term Sundowning.

It has been two years now since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, and I am afraid she is creeping toward the mid-stage part of the disease. I need to help Terry with just about everything these days.  The mid-stage and advanced stages are when Sundowning is more common.

But I have noticed that is not the case with Terry. It seems as the day goes on Terry is more alert. It is in the morning when she sometimes has ‘accidents’ and does not make it to the bathroom in time. It is in the morning when she washes the dishes but doesn’t know where to put them after she dries them. It is in the morning when she is the foggiest.  

But in the afternoon when I come home for lunch she is alert and in the evening after dinner she can still enjoy and even solve some puzzles on the Wheel of Fortune.

She doesn’t suffer from Sundowning. She suffers from Sun Upping.

I am thinking that Sundowning is common with Alzheimer’s patients because most of them are in their 70s and 80s. Terry was just 54 years old when she was diagnosed with Alzheimer’s.

There are quite a few things I have learned to do as a caregiver to help Terry through her day.

I give her a list of things to do and it is almost always the same. Keeping a regular schedule helps Terry a lot. I have found things that she can still do, things she enjoys doing, and that is what we do.

Terry loves to go for walks and we do that as often as we can. They say Sundowning has to do with sleeping problems but Terry sleeps well at night. A change in the body’s circadian rhythms, or the sleep-wake cycle, can cause Sundowning, so they say to keep your home brightly lit in the afternoon and evening to help reduce the symptoms.

In Terry’s case, she loves to close the blinds when the sun goes down. I kid her that it is her favorite part of the day because she always asks me around 5 of 5:30 if she can close the blinds.   According to studies published in Clinical Geriatrics people who were exposed to more light late in the day showed less agitation. Light exposure helps your body recognize the difference between day and night.

I know I get agitated in November when it gets dark at 5pm!

Next week it will not be until 6:30, 7pm when Terry will ask about closing the blinds. I look forward to when it is 8:30 when the sun goes down.

Stress, frustration and fear play large roles in Sundowning. Now that our road trips are over there is nothing for Terry to stress about.  There was nothing really to stress about, but the trips were out of her routine and that worried her sometimes. But once we made the trips she always enjoyed herself.

She is comfortable in our home and if she is not at home she is with me, and she is always comfortable with me. Soft music playing in the house is suggested to create a calm environment.

Terry has music on all day. Either the radio if she is reading her Bible or the television watching Country music videos. The other day when I came home at lunch time she had both on.

I had the television muted before we went to bed the night before and forgot to unmute it. So when Terry put the TV on it was silent and of course she had no idea how to unmute it. So she kept the TV on for something to look at and she listened to the radio.

As Terry’s condition worsens, there will be more and more problems we will have to overcome. But so far, Sundowning is not one of them.  Not yet, anyway.

And now that the sun will be going down a lot later in the day, it marks the time of year when my hours at work ease up a bit. I will still be working every weekend until June, but half of those weekends I can work from home. I still work some evenings, but will be getting home at 8pm instead of midnight.

Terry and I survived the winter and are looking forward to the spring. We are looking forward to the sun not going down as early.

Until next time, hope the sun doesn’t go down on you.

Bud