A Dry Run

Mid-summer Mom started having problems with high blood pressure that included scary effects of numbness, tingling from her face down her arm. She went to the urgent care center because her doctor didn’t have an appointment available. Urgent care sent her to the ER. They didn’t want her driving. Thankfully, Dad had gone with her. She called me en route, and I let my boss know I might be leaving. Systolic was over 200 when she got there. 

She didn’t want me to let a bunch of people know what was happening, but I knew Dad couldn’t handle hearing all the information—wouldn’t be able to process it all—and I knew Mom didn’t need to try to handle him along with her health. I called friends of ours and told Marianne what had happened but not to put it on the prayer chain yet. Her response was, “We’re on our way.” They know where Dad is and are good at talking with him, answering the repeated questions and also working with anger. She stayed in touch with me via text messages and phone calls as I worked to get my editing done so I could leave when needed. 

When doctors decided late afternoon to admit Mom overnight to monitor her, I contacted my sister, who didn’t yet know she was at the hospital. She immediately canceled all her appointments and headed to the hospital. 

I finished my work, got what Mom needed for the night and went to join them. By the time I got there, Mom was settled in an observation room behind the ER, and she, Dad and Alice were giving the nurse a hard time. (Imagine that!) Mom’s biggest concern was getting Dad fed as he had refused to leave Mom even with Marianne staying there. Alice and I took him, leaving Mom in peace and quiet. 

Dad is to the point that he cannot stay alone for more than a few hours. He will forget to eat. He doesn’t remember where Mom has gone. He’ll get fixated on something he decides he needs to do and not be able to let it go. He doesn’t know what medicines to take when.  We had to figure out how to manage him, the dogs at the two households and my niece. 

Alice was great. Niece decided she could stay alone, which took care of her and their dogs. Alice volunteered to stay with Dad and took him to their house after dinner. I stayed with Mom a little longer to be sure she was settled and get final instructions for Dad, which we can’t do with him there. He is aware enough of what goes on that he would know we were talking about him, not with him. If not done right (“You and Terry are going to go have dinner, and she will bring you home. I’m going to play a game with the ladies.”), it’s like treating him like a little kid—something you must avoid with dementia patients.  I would stay home, which took care of my dogs, but be ready to go the few houses down, or back to the hospital, at a moment’s notice. I also remembered to let the nurses know if anything happened to call me, not Dad. 

When I got to the house, Dad was still upbeat. He had been during dinner, but I wasn’t sure what was going to happen with leaving Mom behind. We had to remind him a couple of times where Mom was, but not like sometimes, when we repeat information every few minutes. He helped me get the coffee together so he could push the button in the morning—part of his routine. I pulled Alice aside and gave her Mom’s advice, including sleep with the bedroom door open because he might go looking for her during the night and put sticky notes on the bathroom mirror and back door about Mom and one about the Tahoe being at the hospital. As I was leaving, Dad was making jokes about having an evening of fun without Mom there: a good sign. 

Alice said that he made it all the way until about 6:30 a.m. before he came looking for Mom. She reminded him of where she was, and Alice went ahead and started her day. Back at the hospital, they continued entertaining the nurses and other staff. As I wrote in an earlier blog, some things never change. 

We were grateful that test results came back normal, despite the BP still being high, and the doctors discharged her early afternoon. Dad drove her home. 

I’ve wondered what we’re going to do if Mom isn’t able to be his primary caregiver. It’s a full-time job. My job is such that I can work while with him, although I know it will slow me down. I’m not sure how it will be, though, with my dogs, as he doesn’t like dogs inside. In some ways, I think they would be good for him, but I also know it could be some stress for both of us. Assisted living is a possibility, but that’s expensive, and not my first choice for him, not now.  It’s been in the back of my mind for a long time, but Mom’s experience really brought it to the forefront. I hope it’s one of those situations where we make the plans without ever having to put them into action, but if we need to, we will pull together and make it work because that’s what we do—with the help of great family and friends.

Some Things Never Change

Friday night I went to Mom and Dad’s for dinner. Dad is almost always watching TV when I get there and usually doesn’t come to the kitchen or dining room until we tell him dinner’s ready. (To which he tends to respond, “I’m not hungry yet” as he gets out of his recliner.) This was one of the times he came when he heard me arrive. I was taking stuff to the table, and as I walked back past him standing by the closet, he looked at me, burped and looked quite pleased.

I raised an eyebrow at him and said, “That’s where we left off last night.”

“I had one left over.” He looked even more pleased with himself. 

I’m not 100% certain whether he remembered we went to James Coney Island for the last of their 92₵ chili dog nights on Thursday, but he definitely gave an appropriate, typical-Dad comeback.  While the burp wasn’t appropriate, as those of you who know Dad know, that was totally typical Dad, although he can’t always do them at will any more. He may lose his “professional” status.

A few years ago, when the dementia was still mild, Mom commented, “Of all the things he forgets, why can’t Jimmy’s be one of them?” Dad not only grew up on James Coney Island, he knew the family, hence “Jimmy’s” for short. Mom’s never been thrilled with it but would go for Dad. I like it, so it’s a win-win for us, especially since she tends to send us alone.

When Dad got in the car, he knew exactly where we were going, which is no longer the norm. I usually have to tell him at least once as we drive. We joked heading down Hwy 90 and contemplated tagging the train cars that were pristine while we waited at a red light. The last time we went on the special night, the line was halfway down the wall when we arrived and out the door when we left. I decided we should go earlier this time just in case—a lovely idea that countered getting stuck in traffic merging into a single lane. Dad didn’t get upset at the delay (whew!). Time for more jokes. He didn’t tell any, but he got the ones I told. I commented on some apartments a friend used to live in before he moved out to the country. Dad remembered he had moved and visiting his place. Outside of having to remind him a couple times where Mom was (with friends), the meal was totally normal. He even did fine with the messy chili dogs that sometimes stress him.

I went in with him when we got back because Mom had left some food for me. He didn’t remember why he had change in his pocket (he had paid for dinner) or why a dime in the drawer where he keeps his wallet was somehow important, but he did know about the stories in which people find some coin or flower or other object that reminds them of someone special who has died. What he remembers and forgets is an odd juxtaposition in conversations, but all part of the disease. I’m grateful for the normalcy we still have.

As I headed for the door, I thanked him for dinner, and he thanked me for driving. I said that I had enjoyed it. Then, he looked at me, made a fist, and tapped his chest a couple of times. I knew what was coming, returned his look and burped first, which I can rarely do on command. He deflated, shoulders slumping in jest, defeated because with that, he couldn’t do his. It’s as good as disrupting someone’s sneeze with a “bless you” as they’re revving up. I laughed in triumph; he laughed in response, and I left shaking my head at him.

The burping is so Dad, but it’s something I’d be OK with him forgetting. With our luck, that is one thing that will stay the same.

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.