Changing Times

I haven’t written a blog in months. Lots have been running around in my head. I started one about evacuating during Hurricane Harvey, which I may still complete. But no finished products. Time and my schedule have been partly responsible. The major reason more recently is that to write means making what we experience more tangible, more permanent, in some way. If it’s only what happens when I am with Dad, I can shut it off some when I come home. I can think about other topics. His dementia is always reality, but it’s not mine for the moment. There’s a finality about the situation to me when the words are written. Proof that something happened. Yes, it’s all digital, and I can erase it, but it’s still different.

Five years ago I moved back to the Houston area. God provided a rental house a few doors away from Mom and Dad as well as a job I do from home. I was beyond-words grateful because it put me in a position where I could better help them. I knew about the effects of dementia from volunteering at a nursing home with my dogs and from the experiences of a few friends. I read articles and saw news stories here and there about the disease. Nothing, though, prepares you for the daily reality, especially when the downward spiral accelerates. While we still have happy times and see Old-Dad within Now-Dad (and I will try to write more of those), the days are harder. The descent is more rapid, sometimes it seems like a loss every day.

I am … amazed isn’t right … shocked or stunned, I guess, at the changes a person with dementia undergoes. Although I saw people change at the nursing home, I was disconnected from what was happening to them. How completely pervasive the disease is and how it takes over every aspect of someone’s life—and the lives of caregivers—didn’t register. I saw snapshots of the changes. I didn’t live the full-length movie. The awfulness is indescribable. (And I know it makes for a depressing returning blog. I’m sorry.)

When I returned, the effects on Dad were noticeable, but there weren’t too many and not too often. Among his abilities, he could (in no particular order):

• Drive solo in the neighborhood or around town when someone was with him to give directions
• Get his own lunch from the fridge or snack from the pantry
• Choose his clothes and get dressed
• Tie a tie
• Mow and edge the yard
• Use the TV remote and rarely get stuck in the system to the point he needed help
• Shower, shave and brush teeth independently
• Write articles for his high school alumni club
• Choose among two or three options at a restaurant
• Set the table
• Empty household trashcans and take the big can to the curb
• Understand the comics in the newspaper
• Have a daily devotion independently
• Wash his hands appropriately
• Express what his needs were, such as something hurting
• Understand what he was signing for on documents
• Vote at the voting booth
• Tell time on an analog clock
• Follow directions to help around the house, like where to put something away
• Stay home alone for several hours
• Keep himself occupied with different activities
• Play games on the computer
• Sort his business card collection
• Complete the daily Jumbles in the newspaper
• Find public restrooms by himself
• Choose gifts and cards for Mom
• Follow several directions given at one time
• Repeat a process after receiving directions
• Answer the phone and take a message
• Play games like Mexican Train dominoes with only a little help
• Initiate stories when a situation reminded him of a memory
• Serve food to himself at the dinner table
•  Identify foods on the table, peas versus broccoli, for example

 Now he can’t.  

Turning 50

I turned 50 this month. I’m not quite sure how I feel about it. There’s obviously nothing I can do to change it, and I don’t hate that I’m 50. I also don’t feel 50. I don’t feel different than I did at 49 or 45. Thanks to the rheumatoid arthritis, I hurt more than I did at 40 and am a bit more limited, but I don’t even feel like I’m 10 years away from that. I guess it’s not supposed to be any different since I just moved from one day to the next, but it seems like something should be different. Somehow, something momentous.

What I find really weird about it is remembering Dad’s 50th party. I was in my mid-20s. Not yet married a year. Mom and Dad went out to dinner with friends. My job was going to Mike and Marianne’s house to help set up the surprise party. The pretense was going there after dinner to play games. Probably chicken foot or Mexican train with dominoes. Friends filled the house, and Dad was totally surprised. We had a great time.

Dad was still sailing cargo ships. The captain. He could take a ship and her crew anywhere around the world. They had computers onboard then that took care of lots of stuff, made parts of his work much easier. Dad could still take out his sextant and plot where he was on the ocean almost to the exact spot. He wasn’t as fast as the equipment, but I know he was every bit as accurate. He was almost as good on land. If you needed to know where something was in Houston, he could tell you. And he was always up for a road trip.

He was also making pretty much anything he wanted out of wood. He had a huge radial arm saw from the 1970s and lots of other machines. We could give him a picture of something we wanted built, and he could draw up the plans and turn it out. His work was beautiful. I have a chest, shadow boxes, spoon boards, a couple of little tables from him. There’s a bigger chest at the foot of Mom and Dad’s bed that he made. A big chest of drawers divided into three levels. Lots of little boxes to hold decorative stuff, many of which were for displaying Texas flag items when they had the craft booths with Coomer’s Craft Mall.

He could put in a new electrical outlet or drop a new telephone jack into place. Light fixture or ceiling fan needed replacing? No problem. He built new fences for friends. Constructed platforms that could be assembled in different configurations for the new church building. He was almost as good as Mom helping in the kitchen at church or camp. He was king of the grill at our house.

Dad was always on the alert. He would hear the softest noise outside and be out the door to see what was happening. He even woke easily from a sound sleep, ready to defend us. We were safe.

He couldn’t do everything, but he sure could do anything he put his mind to.

As I write this, I’m babysitting him. He doesn’t stay alone much now. He would for a few hours at most, definitely when Mom would run to the store in the neighborhood. In the last couple of weeks, he no longer wants to be by himself. Mom isn’t comfortable leaving him either.

He’s restless at the moment. We’re watching NCIS. He didn’t care what we watched, but the master builder lost interest in a tiny house show within about 30 seconds. He chose NCIS. I wasn’t sure it was going to stay on because about 20 minutes into it, he was bored. The shows have to have horses running around or stuff getting blown up like on The A-Team to hold his attention, and even then, he flips channels like crazy. I Love Ranger Perry Van Dyke Eyewitness News makes for some interesting storylines, though. TJ Hooker will be on at the hour, which might have just enough action to keep him occupied for a little while.

We had a good time at dinner. He likes to go out and do stuff even though he doesn’t remember where we’re going or what we’re doing for more than a few minutes, sometimes seconds, and once we’re done, it’s totally gone. We had pizza at a nearby spot where you can still sit down to eat in the restaurant. He paid as I told him to get the 20 and the 10 out to cover the $23 and change. As he reached for his wallet, he feigned that he didn’t have it (which might not be feigning although he’d had it in his pocket 30 minutes earlier). I told him that he’d better because I wasn’t paying, and he’d have to wash a lot of dishes. He just grinned and got the wallet out.

I told him a little bit about work as we ate. He laughed when I mentioned the first time Uncle Karl let Mom come along with him and some friends when they were teenagers. He was mortified when she ate her pizza with a knife and fork. A little later I opened the local ABC news app to give us some more topics to talk about. Dad doesn’t do well initiating conversations much of the time, but with the right topic, he’ll usually respond to statements and questions or at least enjoys listening to the information.

Mom told us we could stop at Randall’s for a better snackie than the banana and yogurt and pudding at the house. We found a 7UP cake with a free bottle of 7UP because the cake is a new product and cherries for a great price. A lady was contemplating getting some, and I told her, “At $1.77 a pound? You have to think about it?” She started to cave, and I said to get a small bag. She said that she couldn’t do that because she wouldn’t get any once the others knew about them. Dad jumped in at that point with, “You need to get better at hiding it!” She laughed and said that yes, she needed to find a better hiding place for her stash. 

Now he has lots of explosions and fistfights to watch thanks to William Shatner. We had our cake, and he’s leaned back in the recliner. Mom is on her way home, and I will be soon.

Life is still good.

Good News

In June 2016, right before my parents’ anniversary and my birthday, we got another twist in Dad’s health with the diagnosis of chronic pancreatitis along with two stones and two cysts in the pancreas. One cyst had precancerous cells. Back in August I wrote about changes the diagnosis brought (http://rememberingfordad.blogspot.com/2016_08_01_archive.html).

I wondered at the time if this was the answer to “Please don’t let him die from dementia.” This is going to sound weird to those who don’t know how dementia progresses. I didn’t want him to have cancer, but I knew that it might mean that Captain James Scott Cummings wouldn’t fade away totally. Maybe death would come while we still had some of him. I can’t necessarily say it would be merciful, because having lost loved ones to cancer, I know how awful it is. However, there’s something about seeing the person and having him/her recognize me and whisper a special prayer or “I love you, Terry” once more. When the last stages of dementia take someone, you’re strangers. That tears at my heart like few other thoughts do.

So for the past few months, we’ve been adhering devotedly to Dad’s low-fat, low-spice, smaller portions diet despite his efforts to eat the way he always has and still wants to. We are now adept at setting food on the table to try to keep him from noticing it—for example, veggies near him, pasta/bread at the other end and/or behind something else. That way his “Can I have more of that” as he looks around has a better chance of being something that’s safe for him. We try to portion what he should have, such as putting a handful of baked potato chips on his plate and leaving the bag in the pantry. One of us will serve him at the table, partly for portion control and partly because he has trouble doing it himself with many dishes. Mom and I (and my sister or daughter if they are there) will often ask another to serve some food to us too. Not sure if he notices or not, but it’s a safe gesture so he doesn’t feel inferior somehow. We avoid some restaurants, including mentioning their names, as much as possible, and Mom now simply tells Dad, “You can’t have X,” at others. He even semi-willingly ate a salad with fajita meat at a Mexican restaurant instead of his enchiladas and controlled how many chips he had.

Follow-up appointment

The original plan following the procedure to destroy the cysts had been for another endoscopy to check the pancreas. That’s bad because anesthetics are hard on people with dementia. Thankfully, his gastroenterologist changed that to some specialized MRI that they were able to do at a nearby hospital instead of at the Texas Medical Center, as much as an hour away. It still meant no breakfast (often difficult, but really not good when you don’t understand why) or coffee (which I don’t even want to think about), but it was much easier on him and Mom.

They went back to the doctor to get the results last week. I was grateful for our friends who went with them so Mom didn’t have to deal with driving to or in the Med Center and so someone would be there when she got the news. I tried to stay focused on my editing.

When my cell showed “Mom Cell” around lunch time—while they were still gone—I felt a moment of panic. Her voice was off when she said, “I couldn’t wait to call you.” I couldn’t identify the tone. Not helping the panic. She almost couldn’t get the words out.

“The cysts are gone. … The stones didn’t show either.”  

Dr. T has multiple residents, students and fellows, working with him. A couple came in for preliminary questions and were authorized to share the results before Dr. T came to discuss them fully. They were amazed at the MRI. So was Dr. T., who is one of the best and most experienced gastroenterologists around. He’s seen a lot and did comment that the stones could have been hiding or shifted depending on Dad’s position, but he was still astonished at the results.

Mom told them all that people had been praying.

Where we go next

I thought the stones blocking the exit from the pancreas were causing the pancreatitis and that no stones meant we could relax some, and Dad wouldn’t need the expensive medicine to be able to eat. That’s not the case. He can have a little more food, but we still have to watch fat and spice. It would have been nice to stop that, but it’s become the norm, so it’s not that big a deal. Other than my missing my fried chicken and Jimmy’s chili dogs partner. The precancerous cells were in the cysts, so no cysts means those are gone, but I know if his body had them once, they could come back.

None of that means anything in relation to the dementia.

But it was good news—a fantastic answer to prayer. We needed it, and we are grateful.