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

Time

By Bud Focht

Hi, my name is Bud and contrary to what Mick Jagger said, time is certainly NOT on my side, no its not.

I’ve heard for years people use the old expression “there just isn’t enough time in the day” and it’s true. It is also true that there just isn’t enough time in the week, or the month.

Not enough time to write my blog. At work I have no time to spare to write these days. I used to write it on my lunch hour. Now my lunch hour is spent driving home to be a caregiver.

When I am home with my wife Terry I can’t find time to write. I am usually tending to her. Entertaining her, helping feed, bath and clothe her. Hanging out with her. I don’t want to take time away from that to write. Sometimes I want to, I just can’t.

This time of year I work about 70 hours a week, which includes every weekend and many nights.  A large part of that time is spent on the road and the good news is that when I do travel by car I can take Terry with me.

We just made our annual trip to Niagara Falls and it was great. The warmest and sunniest it has been in Western New York since we began going there five or six years ago.  Every year I work in Buffalo on Friday and 20 minutes away in Niagara on Sunday so on Saturday we go to Canada and visit the Falls.  This year it was about 35 degrees warmer than what it was last year when we were there. Very sunny. We got to see a rainbow in the Falls.

The best part about the trip was that for four straight days Terry was never out of my site.

The bad part of working so many hours this time of year is that most of the time I am working is time spent apart from Terry. That bothers me. Terry’s independence is dwindling. When I am not with her, her quality of life is declining. It is hard for her to entertain herself.

When Terry is home alone she enjoys watching country music videos on TV. They are short, three minute stories she can follow and they are set to music. Music has been so important for Terry since she was diagnosed with Early Onset Alzheimer’s Disease.

It is input her brain needs. And the songs can bring back memories.

Terry has been sleeping in lately, not getting up until 10 am or later. On cold or dreary days she sometimes sleeps till noon, staying warm and comfortable under the blankets.

And I love that!

First, because I am jealous. I would love to sleep in every once in a while.  I have not been an early riser since college days. (in college I was always the first one up in the morning and the last one to bed at night. I was having too much fun to sleep.)

Second, I love her sleeping in because I am more at ease at work knowing Terry is sleeping. I know she is safe and not bored or confused about anything. It is less time she has to entertain herself until I get home at lunch time and again at the end of the day.

If I am not there Terry can dress herself in the morning and fix herself cereal. She can make herself a sandwich for lunch if I am not there but I almost always am, making her soup or hot tea, two things she cannot make herself.

Terry can still wash and dry the dishes but each day the list of dishes that she no longer knows where they go continues to grow. We laugh about it when we find things in strange places.  I’m thankful that Terry’s personality allows her to laugh it off.   Her cognitive decline never gets to her the way it sometimes gets to me.

She can no longer wash or dry the clothes but she can sort them when they come off the line or out of the dryer.  But like the dishes, she sometimes has trouble remembering what clothes go in what drawers.

When I am at work I try to leave for her a list of things to do, obviously things she still can do, to keep her busy while I am not home.

In the song Time Is on My Side, Jagger sang about a woman leaving a guy, with the guy saying she’ll come running back, that time is on his side. Yes it is.

Terry’s independence is leaving her, and it is not coming back. Time is not on our side. No it isn’t.

I’ve read about how stressful being a caregiver to a spouse can be. The stress I can handle, for now. The time Terry and I share these days is great. We have grown so close and we laugh a lot.

I think the amount of time it takes is what makes being a caregiver so difficult. It is a lot like being a working single parent, time-wise, that is.  

(You can’t compare nurturing your child’s growth to trying to slow your spouse’s decline. But time-wise, being a caregiver is a lot like caring for one of your children.)

And like raising children, it is something that you wouldn’t trade for anything. Sure, I wish Terry did not have Alzheimer’s. But she does. So how can we make the best of this time?

By sleeping in, shortening the days. Shortening the time she is alone. On days that I do not have to work at night I come home at lunch time. Then I come home at the end of the day so Terry is only alone for a few hours in the morning and a few hours in the afternoon. If I do have to work in the evening, I come home early, pick Terry up and she is with me. And sometimes Terry hangs with our son or one of our daughters while I work nights or weekends.

That happened recently. I had a long day in the gym, two different teams competing, too long a day for Terry to be there, so she stayed at home, where she feels comfortable, safe. Our oldest daughter and our son both came home that day, took Terry for a walk around the park, fed her her meals and basically just hung out with her.

That night and the next day all I heard from Terry was “We have great kids.” And we do.

We have that on our side. We just don’t have time on our side. No we don’t.

When Terry was first diagnosed in the spring of 2014 the doctors said it was good to start the medication ASAP because it can give us an extra year or two.  Well, it is coming up on two years since Terry began taking memantine and donepezil.

This time of year I used to soo much look forward to spring, as most people do I guess. Now I look forward to lunch time to see Terry. I look forward to the end of the work day to see Terry. I look forward to our road trips together. I no longer look to far forward.

Sometimes I wish I could call “Time!”  Stop the clock. Take a time out.

Time is flying by and the future is not a pleasant one. If only time could stand still for a while. But it can’t.

There are two theories about what time is. One is that time is part of the structure of the universe, a dimension in which events occur in sequence. The other is that time is not an actual existing dimension that events and objects “move through”; it is just an intellectual concept that enables us to sequence and compare events.  That’s why you can’t travel through time.

Time travel has always been a part of people’s imaginations, from H. G. Wells to Marty McFly.

If I could control time I think I would just hit the pause button. I realize Terry is not going to get better, we can’t go back in time. But I pray that she doesn’t get worse.

Not to be confused with Mick Jagger, back in the 80s Boy George sang “time won’t give me time, and time makes lovers feel like they’ve got something real.”

Terry and I feel we have something real, alright. Dementia. We’re running out of time.

A band closer to my liking, Green Day, sang “So make the best of this test, and don’t ask why. It’s not a question but a lesson learned in time. It’s something unpredictable but in the end is right, I hope you had the time of your life.”

Terry and I, believe it or not, are having the time of our lives, at least what is left of them, because it is only going to get worse. We are certainly going to be tested.  We live in the present. We don’t look forward to the future. We don’t have enough time to do that.

Until next time, hope time is on your side.

Bud

Happy New Year

By Bud Focht

Hi, my name is Bud and like a lot of people this time of year I did some reflecting back on the last 12 months.

When a lot of people look back on 2015 they think of things like the debate over the  legalization of gay marijuana (that might have been two different debates I’m thinking of), the Pope’s visit, and the former ‘greatest athlete in the world’ going from the man on the Wheaties box to the woman on the Vanity Fair magazine cover.

Most of the reflecting I did was concentrated on how much the cognitive skills of my 56 year old wife Terry have declined due to her Early Onset Alzheimer’s Disease.

I am not going to go down the list of all the things Terry can no longer do, a list that includes many things she could still do this time last year.  Instead I am thinking of, and am grateful for, all of the things Terry still CAN do.

She can still enjoy watching her favorite television shows, even though she no longer knows how to use the remote control.  She watches reruns and still laughs at all the same parts. (It’s like when our kids were little; they would watch the same movies over and over. I think we actually wore out a tape of the Bambi movie)

Terry can still enjoy listening to her favorite country music station on the radio.  She can identify most of the singers, especially her favorites, or the name of many of the songs she hears.  It is a good thing she only listens to one station, since she no longer knows how to change them on the radio.

She still loves to go for long walks. Before the polar vortex made an appearance this month we got to take a few one-hour and two-hour walks during the Christmas break when I actually had a couple of days off. The unseasonably warm weather made it perfect for the long hikes.

Terry can still enjoy putting jigsaw puzzles together. She just needs a little help getting started.

One of the most important things she can still do is laugh. There is not a day that goes by that I do not hear her laugh. It is the greatest sound in the world.

THE most important thing she can still do is she can still enjoy life. She is happy, and she feels safe, as long as I am around.

Terry and I are spending more and more time together now. I see her in the morning before I go to work, giving Terry her medicine. I see her at lunch time, make her soup or hot tea, and I see her in the evening. If I have to travel for work, Terry goes with me. I am very grateful that I have a job that allows that.

The one positive thing that has come from Terry’s EOAD is that we have grown soooo much closer. I am very grateful for that.

Okay, maybe a little bit tooo close, like having to help her shower and get dressed. And by help her shower I don’t just mean physically helping her, but reminding her that she should shower.

But that is just part of being a caregiver.

A lot of my reflecting has been on how I have handled being a caregiver. It has had its positive and negative effects on me.

The positive is that I get to spend so much time with my partner, my soulmate. I don’t think there is a couple out there that spends as much time together as Terry and I do.

One of the negatives is that because of all the time I do spend with Terry, my social life is zero. I recently went out for about an hour to see some old friends who got together just two miles from my house to celebrate a 60^th birthday. That made it pretty easy to get out, and Terry was happy that I was seeing them. Twenty, thirty years ago we saw them all the time.

But the other night was the first time I had been out with friends in months. I just can’t feel comfortable leaving Terry by herself.  She tells me she feels safe with me, but how does she feel when I am not there?

Another negative effect is since I come home every day for lunch, I can no longer use that time to work out. Believe me, I am no body builder or cross fitter. But I used to walk every day at lunchtime and occasionally pick up a weight or two. Just things to keep the blood pumping and keep the weight off. I didn’t lose any weight but I didn’t gain either. That is, when I was working out. Since I’ve stopped working out my weight has reached an all-time high.

With the cold weather Terry has begun sleeping in lately. She goes back to sleep when I leave for work and sleeps until 10am or sometimes even later. Even though she comes from New England Terry does NOT like the cold, and she is so comfortable under the warm blankets in the morning she just stays there. It is not like she has to get up to accomplish anything.  She no longer goes to work.  She doesn’t even go to her Bible studies anymore. The few chores she still does around the house aren’t going anywhere. There is no rush to do them.

I am happy Terry sleeps in late because it is less time of the day she has to be bored. That is what I worry about when I am away from her, Terry not being able to entertain herself. Not being able to keep busy.  When I leave for work in the morning I leave a note, a list of things for Terry to do, and she does them.  But if there is no list, nothing telling her what to do, no ONE telling her what to do, she doesn’t know what to do.

Terry is back doing jigsaw puzzles again, which I am grateful for. She was doing them last winter but once spring came around she was puzzled out.  But she received a few for Christmas and with the cold weather keeping us inside she has put two together since Thanksgiving and is working on a third one now.

Over the last 12 months Terry and I have been able to travel. We spent a summer week in the Shenandoah Valley in Virginia, we spent four November days in Cancun, we visited her family in New England three times, and we visited friends at the Jersey Shore.

Reflecting back on the last year, I would have to say we did a lot. We made the most of it. And that’s really all you can ask of a year, to get the most out of it. Especially when you know, and dread, what the next years will bring.

What will come in 2016 is anyone’s guess. If this time last year you would have told me Donald Trump was seriously being considered a candidate for president, I would have thought you meant president of the Hair Club for Men.

I hope this time next year I am just as grateful as I am now for the things Terry can still do. Still enjoy.

Until next time, hope you are grateful for your 2015.

Bud

Don’t Tell the Worry Wart

By Bud Focht

Hi, my name is Bud and for the first time in my life I find myself keeping secrets from my wife.

It is not that I am being deceitful, just a little secretive. Eventually I come clean, but not until I have to.

I realize that does not sound very good, sounds like a lot of cheating husbands. But trust me; it is for her own good. (That sounds worse). 

Let me explain.

My wife Terry has become worrisome. This is a trait she never had before. Her faith has always helped her stay calm. She has always been able to put things she cannot control in God’s hands. These days she gets nervous about what lies ahead.

We are all nervous about what lies ahead for Terry, who has Early Onset Alzheimer’s Disease, a disease that only gets worse with time.

But Terry is nervous about the immediate future, if I happen to tell her about it. I have discovered that, if I don’t tell her, she is fine.

Terry has long been my shotgun rider, accompanying me on road trips. She has always enjoyed them and so have I. This time of year I make a lot of road trips and it gives me peace of mind having her with me.

Lately, however, if I tell her we are making a road trip, she gets nervous about it and works herself up into a fret and is scared to go. She gets so nervous that it affects her stomach (and lower). I think that is what worries her the most, the fear of having an accident (not with the car, either).

It is a vicious cycle. She gets nervous and it bothers her stomach, and then she gets nervous about her stomach being upset on a road trip.

But if I don’t tell her in advance, and then right before we go tell her, she is fine and she wants to go.

I believe her fears stem from the fear of the unknown. Because of her hippocampus no longer working, Terry has difficulty picturing what will happen next. That is why I had to take the car keys away from her a little over a year ago. She could no longer picture in her head how to get places, places she had been hundreds of times.

Now if I tell her we are going to make a trip, she has trouble picturing it and she gets scared, nervous. So, I no longer tell her. That is, until the last minute.

It started a few weeks ago when I had to travel to Maryland, a three-hour drive. We planned and talked about the trip for weeks, but the day we were scheduled to go Terry backed out. She was scared. She wanted to stay home, one of the only places where she feels secure without me.

Fortunately, our youngest was able to come home that night and stay a few hours with her and make her supper.

It happened again the following week; Terry just wanted to stay home.

So last week when we had a three-hour trip to Connecticut, I didn’t tell her. I just came home from work and said let’s go, and she was fine. She wanted to go. And she had a good time. No accidents.

So that is what I have to do from now on, just not tell her.

I am afraid that is easier said than done. I have always been one to plan everything out, and I need to say my plans out loud, using Terry as a sounding board. It is tough not having that partner anymore, someone to discuss things with. Someone to give me a different opinion on things.  Someone to give me advice.

I miss that.

I miss being honest with my wife. I miss planning things with her.

But if being a bit secretive is the only way to have her come with me and enjoy the trips, so be it.  It is a small sacrifice for me to pay to have her company on the trips. To know she is safe and happy.

It turns out that honestly is not always the best policy when it comes to dealing with my Terry.

Until next time, I’ll be keeping my plans to myself.

Bud

Oh yea, I have a blog

By Bud Focht

Hi, my name is Bud and it was recently brought to my attention by a few different people that I haven’t written a post for my blog in a while. What started out a year and a half ago as a weekly therapeutic vent about caring for a wife with Early Onset Alzheimer’s Disease seems to have dwindled into a bi-monthly effort. 

(Now does bi-monthly mean twice a month or does it mean once every two months or does it mean that you like both boy and girl months? I’m not sure.)

I am sure the decrease of my writing output is due to a number of things.

First of all I am entering the busy (I should say busiest) portion of my work year, so time is not what it used to be. (And speaking of time not being what it used to be, how much does it stink that it gets dark at 5pm? Is that depressing or what?)

My caregiving has also become a bit more time consuming, as my wife Terry now needs more assistance in her day-to-day activities.

Another big reason why I haven’t written much lately is because of something our mothers taught us at a young age. “If you don’t have anything nice to say, don’t say anything.”

The last few months have not been that nice. They’ve been tough. I got spoiled during the summer months, seeing so much of Terry, being able to spend so much time with her. Being able to help her with everything. That is getting harder to do these days.

Fortunately Terry has been able to go to a lot of the sporting events with me at work, mostly soccer games, a field hockey game now and then, a couple of swimming & diving meets and a couple of cross country meets. Terry likes going to all of these events, especially the cross country meets. She ran track in college, coached youth track on the CYO level (even took some athletes to the prestigious Penn Relays) and enjoys going to our son’s triathlons. These races are a nice, comfortable environment for her.

It’s funny, though, that when we are at these outdoor events, Terry is fascinated by flying objects in the sky. (I know, where else would they be?) She loves watching airplanes or helicopters pass overhead. And she likes pointing them out to me. Sometimes IN THE MIDDLE OF THE GAME. God forbid a hawk, a crane or a heron would fly by. 

I wonder why that is? She was never like that before. But now whenever we are outside Terry loves to point out anything moving in the sky. 

The soccer games that Terry went to with me this fall were played on a field surrounded by woods, and the trees the past few weeks have been unbelievably beautiful. Just on the other side of those woods is an airport. I think she saw more of the airplanes coming and going than she did of the games or the foliage. But she was happy. And I was happy too, having her nearby.

I hate being apart from her, worried if she is okay. It is becoming more and more difficult for her to entertain herself when she is alone. Not only entertain herself but simply handle things by herself.

But even though I always want to be with her to care for her, every once in a while it gets tough being a caregiver. It reminds me of when I was a young father, sometimes I would get frustrated with the kids.

Usually because I didn’t have enough time, didn’t have enough rest, or didn’t have enough to eat.

Regrettably, I was never the most patient father.

I started out being a very patient caregiver. (That is, once we knew why Terry was forgetting everything or could no longer figure things out the way she used to.)  But lately I can sometimes feel myself getting frustrated.

Usually because I didn’t have enough time, didn’t have enough rest, or didn’t have enough to drink.

That is when I need to take a step back and try to put things in perspective.  In a situation like this an old urban friend of mine would always say “Fool, you better check yourself before you wreck yourself.”

So I did check myself. I took a “Caregiver Stress Test” on line at alz.org. I didn’t do so well. So what else is new? Taking tests was never one of my strong suits. Until I got to college, my teachers were never that impressed with my answers.

Well, I wasn’t too impressed with the answers I got from my stress test, either. Like;

“Sadness, grief, loneliness and anger are all normal feelings as Alzheimer's slowly takes away the person you care about and your life is forever changed. Expect to feel loss and grief. But don't be afraid to acknowledge your feelings and to seek the comfort of others who understand.”

No shit! Not exactly an eye-opening answer. Not exactly the answer I needed to wind down.

The fall outdoor sports season is now winding down.  Soon the basketball season will begin and Terry will be making most of the road trips with me. I am lucky that we can do that.

I have to keep reminding myself that I am lucky. I mean, it totally sucks that my Terry has this disease and is slowly becoming less and less independent. But I have to remember to appreciate every day that we get to laugh with each other. And that happens every day.

I was reminded of this today when I heard an old favorite song of mine on the radio. Twenty-some years ago I was an R.E.M. fan and they wrote an anti-suicide song geared toward teenagers called “Everybody Hurts.”

That song states that everybody hurts, everybody cries, so hold on. You are not alone.

One of Terry’s favorite songs these days is called “I Hold On” and is sort of her motto with this disease. In that song it says “I hold on, to the things I believe in, my faith, my love, our freedom, to the things I can count on to keep me going strong. I hold on.”

So Terry and I will continue to try to hold on. And I will try to be more patient. And maybe even write a little more.

Until next time, did you see that airplane?

Bud

Apple, Penny, Table

By Bud Focht

Hi, my name is Bud and if I was a still life painter, I would draw a nice, sturdy wooden table, with a bright red apple on it next to a shiny cooper penny.

My wife Terry had her annual visit with the neurologist this week.  He is the doctor who first told us in the fall of 2013 that something was wrong.  We went back to him last October, a year after Terry was diagnosed with Early Onset Alzheimer’s Disease, and he ran the exact same tests again, which included an EEG (like an EKG except it is for the brain, not for the heart) and an MRI of the brain, as well as different tasks he gave her to do in the office.

Terry did just as well, or just as bad, on almost all of the tests the first and second times, and the MRI and EEG showed no difference from the first and second visit.

This time he again asked Terry to remember three things, an apple, a penny, and a table.  Funny how he never changes it up. It is always apple, penny, table.  When I was talking to my kids last week, before the visit, I told them and Terry he is going to ask you to remember an apple, a penny and a table. Then he is going to ask you a bunch of questions, and then he’ll ask you what the three things were.

I didn’t tell Terry the questions he was going to ask. This is not the test that I really want her to study for. I want a true reading coming from the doctor’s exams. The only reason I told her and the kids the part about the apple, penny table was because I knew Terry would not remember it. She hasn’t yet.

The neurologist asked Terry to spell the word WORLD, which she could do. But he asked her to spell it backwards and she had no clue. She gave it a couple of tries, usually starting with W, but could not do it. For the third year in a row.

But it was how she handled the inability to spell the word backwards is what the doctor took notice of.  She admitted, “Oh, this is not my strong suit.” And “This is a tough one” but half laughing while saying it.

Finally when she gave up she said “I’m a mess,” and started laughing again. He was happy to see and hear that she still has a sense of humor, that she is a happy person. And healthy.

The doctor asked her to show him her left, little finger and she did that, and to put her right thumb in her left ear, and she could follow those instructions.  But then he asked her what the three things she was supposed to remember and again, for the third year in a row Terry had no shot.

Could not remember apple, penny, or table.

I had to tell the doctor all of the things Terry can no longer do since our last visit in October. Last visit I had just taken the car keys away from Terry.

Since last October Terry can no longer use the oven, stove or microwave. She can’t text on her phone. She can turn the TV on and off but can’t change the channels. Same with the radio. She can turn it on and off but can’t change the station.

One day I was listening to the football game on the radio and forgot to put Terry’s country station back on. The next day I came home from work and Terry told me, “for some reason they were talking a lot about the Eagles today.”

She can turn the treadmill on and off but doesn’t know how to change the speeds. So she can do it when she is home alone, she just can’t go too fast.

Lately she’s been putting the dishes away where they don’t belong, but she gets a kick out of it. We call it my daily Easter Egg hunt and Terry laughs every time I pretend to give her a hard time when I am looking for things.

Because Terry is still healthy and still has a sense of humor, and because she knows what is going on, she just can’t remember things, the neurologist didn’t order the EEG or the MRI this time. He doesn’t think the brain has begun to shrink yet.  The decline has continued but it has been gradual, which means the majority of her brain is still okay, it is just the hippocampus not working. She just can’t remember things.

Once the brain begins to shrink, there will be more drastic changes. But for now, she is healthy.

So for the first time, Terry and I left the neurologist’s office in a good mood.

After the doctor’s appointment we took a nice, two hour walk on the tow path next to the Delaware River and Delaware Canal. We were walking along and all of a sudden Terry turns to me and her eyes are real big and she says “APPLE, PENNY, TABLE. APPLE, PENNY, TABLE.”

We both almost fell in the canal laughing. I told her I was going to quickly call the doctor back and see if he’ll change her grade.

The rest of the walk she was like ET when he first started to talk “ET Phone Home, ET Phone Home.”  Terry kept on saying the rest of the walk “APPLE, PENNY, TABLE. APPLE, PENNY, TABLE”

Unless some of those “drastic” changes occur, we again will not see the neurologist until next October. She will continue to be on her two medicines, Aricept and Namenda, for another year. Between now and then I am sure I will have compiled a new list of things that Terry can no longer do. I just pray that laughing isn’t on that list.

Along with Aricept and Namenda, laughter truly is the best medicine. I know it has been for me.  It is the only thing that has gotten me through this, being able to see Terry laugh.

Until next time, maybe I will draw that table with the penny and apple on it. I’m sure that would make Terry laugh.

Bud

Coming Out No Party

By Bud Focht

Hi, my name is Bud and I have been having trouble ‘coming out.’

No, I am not gay. And as Jerry Seinfeld famously said on one of his television shows 20-some years ago that then became a catch-phrase, “not that there is anything wrong with that.”

No, I have been having trouble telling people that my wife Terry has Alzheimer’s Disease.

It is not that I am ashamed of it. I’m not trying to hide it. As a matter of fact, it is just the opposite. I want people to know. I would much rather people know what her problem is rather than wonder why she can’t perform so many simple tasks.

I guess I would rather people know she has an incurable disease than think she is simple-minded. I would prefer that she was just not that smart.

Most people I work with know. All of my friends know.

The problem is, when I try to tell people, I get emotional. I’m not sure why that is.

Obviously, it is an emotional subject, but it is something I’ve been dealing with for two years now. Even before she was positively diagnosed in the spring of 2014, it was the fall of 2013 when I knew something was seriously wrong, more wrong than just “menopause” which her primary physician had suggested. It was two years ago when I first took her to a neurologist to have her checked out.

Turns out it was more “mental-pause” than “menopause” that she was suffering from.

Terry’s condition sometimes gets to me, but for the most part I am able to handle it. Except when I try to tell someone.

I remember telling my neighbor this past summer. I was a mess. I was fine, making small talk. Then she saw the Walk for Alzheimer’s tee shirts on the clothes line and asked about it. When I tried to tell her it was Terry who we were walking for, her and I both started balling.

And it happened again the other day, with a total stranger.

I took Terry shopping for some new clothes, but she was having trouble in the fitting room. Even though I only gave her one item at a time to try on so she would not get confused, once she went in there she wasn’t sure what she was supposed to do.  (I’m just so glad that she didn’t yell out “Hey, there is no toilet paper in here!”)

So I went up to a sales person to ask if I could go in the fitting room with Terry. I didn’t want her to think I was a perv or anything so I tried to explain Terry’s situation, and I started getting emotional again.

I guess knowing it and actually hearing me saying it are two different things.

Fortunately, the sales person was very understanding and said there was no problem with me going in there, and she even offered her help if it was needed, which was nice.

What was not nice was the fact that I almost lost it, in public, in the middle of a store.  And I hate Terry seeing me upset. I need to be strong for her. She gets a lot of her information these days by reading my reaction to things. If I am calm, she is calm. If I am laughing, she is laughing. I don’t want her all bummed out because she saw me crying.

I remember the day I wrote my first blog. I e-mailed the link to many friends and some co-workers, telling them what had happened. After I hit send I had to leave work for the rest of the day. I totally lost my shit. I was even having a tough time driving home that day.

That seems like a long time ago, June of 2014. Fifty-two blogs ago. A lot has happened since then, and most of it has not been good. But some of it has been.

The relationship that Terry and I have is great. We have never been closer. We are almost always together now, and enjoying each other’s company.

Unfortunately, the amount of time we are together is as much a necessity as it is a choice. Terry’s decline in cognitive skills has not stopped.

For the most part it has happened gradually, so it never really hit me that hard. That is, until I try to tell someone about it.

When my friends and co-workers ask about Terry, how she is doing, it isn’t really THAT tough for me to talk about, for the most part.  But it does get to me.

The everyday dealing with it, however, is something that I have been able to handle. I guess I have Terry to thank for that.  She still has a great disposition. She still laughs every day. She still smiles most of the time.

Lately she has been getting a kick out of my daily “Easter Egg hunts.”  One of the few household chores that Terry can still preform is doing the dishes. But after she dries them and when she puts the dishes away, there is no longer any rhyme or reason as to where she puts them.  She puts the pots and pans where we keep the tupper wear, and she puts baking dishes away in various places around the kitchen. She doesn’t even try to put my travel coffee cup away. She just leaves that out for me to put it away.

Terry is beginning to worry more about things. But she has faith in me, she knows I will take good care of her, and she constantly thanks me for doing so. As if she needs to do that.

I never mind taking care of Terry. I think I am good at it. What I am not very good at is telling people about our situation.  Not in person, anyway.

Until next time, I guess I just won’t be that good at ‘coming out.’ Not that there is anything wrong with that.

Bud