Date Night

I had another Daddy-Daughter Date Night tonight. Mom called last night to see if I was free because her Pokino night got moved to a week early. Dad can still stay by himself, and Mom can feed him before she goes, but when he and I go out, it makes it easier on Mom, and it’s good for him to get out of the house. 

She doesn’t tell him way in advance (meaning not even as early as lunch whatever day we go) that he and I are going out, but she does tell him about a half hour before I come get him and has him change clothes from his around-the-house T-shirt and older pants or jeans to something casual but nicer. Occasionally she is still home when I come, but usually she’s already left.  

He’s getting worse, but for years his short-term memory has varied. Sometimes he’s fine; now it’s becoming the norm to answer the same question repeatedly in a matter of minutes, even when it’s something familiar like getting ready for church on Sunday morning. Back when Meggie was in middle school, around 2007/2008, we all went to the Downtown Stroll in Brenham—a parade before Christmas. She was in the parade on her dance school’s float. I don’t know how many times as we sat watching the parade Dad asked if she was going to be with the cheerleaders from her school. Positive: he knew she was a cheerleader. Negative: maintaining our cool while repeating, “No, she’s with the dancers tonight” for the 37th time that evening. But when I moved in with them for a few months before my divorce was final, he never once asked me why I was there.

I never know which Dad I’m going to get when I see him. 

For whatever reason, so far he has remembered our dates, even when Mom leaves before we do. She told him I’d be there around 5:30, and by the time I had put my car in park in their driveway, he was walking out to meet me. I suspect he was watching from one of the front windows. He remembered his wallet (good, since it was his treat!) and his keys. He knew we were headed for dinner not something else. We discussed where to go just like I would with anyone else, and he asked, “Where did we go last time?” I was glad he remembered we’d done this before. That gave me a sense of our old normalcy. 

We opted for Bush’s Fried Chicken again. I ordered his meal as well as mine, which is still weird, even though I can do it as naturally as I used to order Meggie’s when she was little. He asked me if the meal was on him. “Yes. Mom put some money in your wallet.” He pulled out his wallet and in typical Dad fashion made a comment about whether or not she had—not a case of his forgetting, just being difficult. I told him, “She better have or you’re going to be washing a lot of dishes tonight to pay for this,” and the cashier muffled a giggle. As I looked at her, and Dad pulled the bill out of his wallet, she said, “I’m not getting in the middle of this!” He understood and he laughed. 

I had asked if the fries were fresh as I placed the order since the last time we were there they were not, and they cooked not only a batch of fries but also okra for us. We waited at the table without him asking why we didn’t have our food yet, then watched the Little League game that was on the TV, ate the meal and talked like we always have. He also picked up his chicken and stripped it to the bone—no fork tonight! 

He asked about Mom only once, as we got close to home and passed a white Tahoe like theirs. He wondered if it was her, and I told him that she was off having fun. “Without us?” When I pointed out she was with the ladies, he agreed he was better off not there.

I do enjoy going out with him, but I know it’s always a roll of the dice as to how the time will be. That’s always been true with his lack of patience when something doesn’t go right, but the dementia exacerbates it. He gets frustrated so much easier, at lesser difficulties, and has an even harder time letting the problem go. I go, regardless, in part because he needs to be out to stimulate other parts of his brain. That helps with the disease. Taking him also helps Mom. She doesn’t have to be concerned what he might do when he’s with me. I also go because, thankfully, we tend to do so well together and because in a way, I’m … selfish, for lack of a better word as I write this. It’s a gift to both of us for the moment we are in as we make the memory (not the general present since there’s a chance right now he might not remember we went tonight). Mostly the gift is for me, though, because too soon—even if it’s a decade away—we will reach that point where I am a stranger to him in person, but not in these memories, and I will smile at the cashier shaking her head at us as we were our old selves. 

The Beginning

We had a scare with Mom a couple of weeks ago when her blood pressure went way high (200ish/100ish), and she experienced numbness from her face down her neck and her left arm. She spent the night in an ER observation room and stayed stable, and after all test results came back normal, they discharged her the next day. She saw a neurologist a few days later who wanted her on Lipitor for her high LDL. She's had high cholesterol levels for years despite watching what she eats and has resisted taking any meds for it ever since Dad was on them.

About a dozen years ago, his cholesterol levels were high, so his GP put him on a statin drug. Not long after, he began feeling tired and weak and had problems remember stuff. We were living out of the Houston area at the time, but I could tell a difference talking with him on the phone--not as much as Mom saw with him all the time, but still a difference. I knew little about the drug but kept telling her it was the drug since he was fine before he started taking it and this all began afterward. She said the doctor was running tests and all the levels came back within the normal range.

As he continued to worsen and the GP didn't change anything, Mom and Dad were getting frustrated (and I was still insisting he should get off the drug to see what happened), the GP finally recommended seeing a neurologist. He examined Dad, checked tests, ran others and said that yes, indeed, the statin drug could cause Dad's symptoms. It might not be, but it was certainly easy enough to stop the drug and see what happened. If Dad improved, we had the answer. If not, we'd look for another cause. He also recommended taking CoQ10 to get those levels where they should be.

Well, before long, daughter Meggie talked to Dad on the phone and told me, "Grandpa sounds like himself!" It took a few weeks, but he really did return to pretty much his old self: not tiring easily, able to do regular work again and remembering as he always had. We were pleased and relieved.

The GP might have been pleased with that, but he was not pleased with Dad's still-elevated cholesterol levels and put him on a different medicine, one that works in the small intestine instead. Once again, not long after beginning that medicine, Dad started having weakness, fatigue and memory loss. Long-term memory was fine. Short-term was not. Liver panel and other tests again showed everything was fine despite what he was experiencing.

This time Dad got off the medicine relatively quickly. This time it made no difference. Neither did CoQ10 nor anything else he tried.

Searching the Internet was still pretty new at that point, but I started looking for answers, both for what had happened and what we could do. Medical professionals and drug companies stated that reported incidents of memory loss after taking cholesterol-lowering drugs were just anecdotes and coincidence. No study had shown a connection.

Then, I found a former NASA flight surgeon who had experienced short-term amnesia after being on a statin drug. He had begun investigating cases and causes. Many others had reported similar experiences, like the woman who had called the sheriff, insisting an intruder had been in her home--she found footprints outside in the snow and someone had eaten part of her sandwich. The sheriff found that the footprints matched her snow boots, and as they talked, he figured out that she had been eating lunch, gone outside for something, come back in and forgotten what she had been doing as well as going outside for whatever reason. She had been on statin drugs. He didn't have as many reports of the memory loss Dad was experiencing (it was short-term memory loss but not like amnesia), but he had some.

The doctor had been researching and reported that the body needs a certain amount of cholesterol for the body--including the brain--to function properly. No one (at least then) knew how much was needed, and it appeared that it varies for individuals. Lowering cholesterol levels to what doctors recommended might be too low for some people and result in fatigue, muscle weakness, and, yes, memory problems.

I know some still say the drugs and memory loss are not connected. (I'm not going to argue with you since not everyone who takes the drugs develops dementia, and not everyone who has dementia has taken the drugs.) I also know that Dad's memory not only did not return to what it had been, but it kept getting worse, and he was finally diagnosed with early-onset dementia, one of many forms of dementia. He was in his early 60s.

I keep an eye on developments about cholesterol levels and medicines and interactions. Although most in the medical and pharmaceutical fields still insist there's no connection, more now are at least saying there could be a connection, and some state there is a connection. It's frustrating, especially when a friend in the pharmaceutical field told me that despite what the tests showed, the GP should have pulled Dad off the drugs immediately based on the symptoms he was having.

It is what it is, though. We are on this road, which most recently has had more declines for him. What's good, though, is I have learned that we are not alone on it, and the people who are coming alongside and the resources available through many sources, including the Alzheimer's Association (http://www.alz.org/ is the main site, with local sites also), will make it more bearable. I hope those reading my blog are not on a similar road, but if you are, come along with me. We'll make it together.

Eating Chicken With a Knife and Fork

Mom called me this afternoon to see what I was doing for dinner. I was going to run an errand and then grab something out. Dad had been working outside in the Texas June heat and humidity cleaning out his van, and he was still wiped out. She needed to go to church and hadn't planned on feeding him. Could I do anything with him? 

Dad has never been self-sufficient when it comes to cooking. On his best day in my lifetime, if Mom didn't leave him specific food and he had to scavenge, lunch would be cold hot dogs or something equally appetizing. I've never seen him plan and execute a meal, although if Mom handed him the meat, he was good with the grill.

Now, with his early-onset dementia that has been getting steadily worse over the past 10 or so years, he is more lost in the kitchen than ever. 

Mom rarely asks for help on the spur of the moment, and it was not a problem for me to adjust my plans. I swung by Kroger for some fried chicken on my way home and headed back to their house. 

He was waiting, expecting me, which is a positive. So far, he's always known who I am, and he knew why I was there. Mom had set the table and cut up some sweet, deep red watermelon that was well chilled in the fridge. 

Some foods are just meant to be eaten with your fingers. Hot dogs, burgers, sandwiches, BBQ and fried chicken, among them. Dad always gently teased Mom for using a knife and fork. He could strip a bone with his teeth as well as any of my dogs could, although not quite as quickly. 

Tonight, I gave him a thigh, and he picked up his knife and fork and began trying to cut it. He did that the last time we had chicken out, but I thought it was because that piece was right out of the fryer. 

As I watched him, it struck me how far his disease has progressed. It wasn't so much the knife and fork as it was his inability to figure out how to cut the meat away from the bone and his frustration at being able to find a piece larger than a nibble.  He finally got it turned better and ate about half the piece in bites he cut. 

Dad reappeared a few minutes later, picked up the piece and soon had the bones on the discard plate, stripped completely of any morsel of meat.  If my dogs got to chew on chicken bones, they would have been sorely disappointed. 

We had a great time talking about nothing in particular--grocery stores we had been to, his getting a hair cut as a third-class cadet at Kings Point Merchant Marine Academy, and silly stuff people had posted on Facebook. I nearly got him to spit a mouthful of tea. 

He might not remember I was there by the time Mom gets back from church, but that's OK.  Well, not really OK, but how it is. It's part of the disease.

I'll remember for him.

(This is my first blog about us. I'm going to use it to help me remember what we do, how we feel, and what's happening with the dementia, and maybe to encourage others who are also on this path. I'll post recent happenings and also go back over the years to fill in other parts. Come along with us and help us remember.)