Today was our 6 month check up at UCLA. I want to write about it while it's still fresh in my mind...I will do my best to relay the details of the visit ;)
Many people ask the question: "Now that she has her diagnosis, and there is no cure or treatment for semantic dementia, what is the point of continuing to go to UCLA?"
First of all, UCLA has been a Godsend to us. When our regular medical clinic doctors could not figure out what was wrong with my mom (over the period of 2 years), UCLA made a diagnosis in a matter of a few hours. These people know their stuff...they are the leaders and true experts in the field of dementia. It goes without saying that these are the professionals who will guide us through this dementia process. When my mom's primary doctor and neurologist "didn't feel comfortable" signing mom's disabilities form, because "she seems fine to me", UCLA helped us to obtain disability and Social Security for mom. These are the people we want on our team.
There is no cure for dementia. The protein present in the brain (in semantic dementia) was only discovered in 2006. There is a lot of work and research to be done. They can't do this without patients. By taking mom to UCLA, I feel like it can only help further their research in the disease. When and if they come up with experimental drugs for this form of dementia, we are already on their radar.
Mom does not share our feelings of gratitude and respect for the UCLA team. It was after her visit (and diagnosis) to UCLA last March that mom was "cancelled" as a driver. This just illustrates the point that these people are true professionals. They are mandated to report their findings to the DMV and did such; the other doctors were negligent in doing this. For anyone who has been around my mom over the past few days, they've heard her resistance about her upcoming appointment at UCLA,
"I don't want to go to those mean doctors who cancelled me as a driver."
My dad had to bribe her to go. She really wants to drive up to Utah for her and my dad's anniversary next month; dad told her that if she didn't go today, there would be no trip to Utah. It may sound harsh, but sometimes you do what you gotta do!
Last night, I told my dad that he should drive his truck to the appointment, rather than the SUV which she tends to get more motion sickness riding in. When I arrived at his house this morning, they were sitting in his truck, ready to go. Mom skipped her morning Slim Fast (which dad always urges her to do on a long car ride) and the combination of the two seemed to do the trick; she made it to UCLA without any car sickness!
Upon arrival at UCLA, my dad dropped us off at the front doors to go check in while he parked the truck. I walked mom to the receptionist and no sooner than I told them her name, mom started talking over me stating exactly how she felt about the visit,
"I'm not so happy about being here, cuz this doctor is the one who cancelled me as a driver, even though I was always a really good driver too and I don't know why he had to cancel me. I just hope he'll let me be a driver again..."
I redirected mom to sit in the waiting area until we were called back. Dad joined us and a few minutes later, Jill (the nurse practitioner) came out to greet us and bring us back to a room.
"Hi Deana, I'm Jill. I'm the nurse, do you remember me?"
I didn't hear mom's exact response, but it was something like, "You're the one who lived in San Bernardino."
Jill was amazed that mom could recall that Jill had mentioned, at their previous meeting, that she grew up in San Bernardino. Not even my dad or I remembered that detail! The only other thing mom seemed to remember from her previous visits was the fact that they "cancelled" her as a driver. And boy did she give Jill an earful...all the way down the hall and into the room!
Dr. Mendez followed behind us into the room, shook our hands and right away, mom unloaded her driving woes to him,
"But I was just so sad that you cancelled me as a driver. I was always a really good driver too. And even though, they say I have that thing...that demen-dementia thing-but I don't think I have that. What are the symptoms of that, dementia? 'Cause I don't think I have that. And I was always so good as a driver too, I never got any tickets and never any accidents, I was really so good. And even before you cancelled me, months before we went on a trip to San Diego and I drove all that way, really long way, and I did so good too and I wasn't such an unsafe driver. I'm just so sad. I can't drive myself to the store and to church and other places too and to the pharmacy and see family and other friends too..."
This conversation went on for about 15 minutes with no pause for Dr. Mendez to respond to what she was saying, no joke. Dr. Mendez tried to redirect her by asking questions. He sat right in front of her, giving her direct eye contact as he spoke.
"How are you doing otherwise?"
Mom looked at him for several seconds, trying to make sense of his question as he repeated it for her.
"I'm okay," she said hesitantly, "but I really felt so much better when I was a driver...and I don't know why you cancelled me and could I please drive again?"
She continued on, rubbing her hands together nervously, which Dr. Mendez noticed. After asking her a few times if she was nervous, and receiving no answer, he turned his attention to my dad and me.
"She seems really nervous, does she always do this with her hands?" We nodded our heads. Mom continued to talk about her driving, rarely pausing and unable to follow his redirection. Dr. Mendez finally asked us some questions, as mom continued rambling. At one point, when Dr. Mendez was looking and speaking to me, mom looked over at me, then back at Dr. Mendez and said, very assertively,
"Why do you keep talking to them when I'm talking to you?"
I have to admit, we were all suppressing our giggles at that remark.
Dr. Mendez began asking her questions in an attempt to assess where she is at in the progression of the disease. If you read about the appointment 6 months ago, you might remember that she looked at several pictures and [attempted] to name the objects and people that she saw. On the scale that they use to assess how advanced her disease is, mom was only able to pass 1 out of 20 questions. Basically, she is no longer on the charts for that assessment, which means it was not useful to put her through that series of questioning again. Instead, he asked her more basic questions.
"What is that?" he asked, pointing to mom's wedding ring.
"Huh? This? My wedding ring," she stammered.
"What is this?" he asked, tugging on her navy blue, fleece sweater. Across the front of her sweater are the words: USA. Mom looked down at the sleeve he was tugging on and responded in a low, somewhat mumbly and stuttering voice,
"This, oh I got this in Massa-Massachussetts when we went. And it says America on it, oh see it has the letters USA on it."
"But what is it?" Dr. Mendez asked again.
"It says USA," mom said, mumbling some other things about her sweater.
Dr. Mendez tried another article of clothing.
"What is that?" he asked, touching her shoe.
"Hmmm?" mom asked, looking down at her shoe while he restated the question.
"That's my shoe. And my sock," she added, looking at her sock. Then added "Jeans" as she patted her lap.
As the doctor questioned mom, I noticed that her demeanor changed and she seemed more reserved and submissive, as she tried to comprehend what he was asking her.
Dr. Mendez turned focus back to her sweater. "So what is this then? Is it your shirt?"
Mom opened up the front part of her jacket to reveal her shirt sleeve. "My shirt, yeah."
"That is your shirt, what is this thing over your shirt?" he asked again, touching her sweater.
Mom sat quiet for a moment, trying to figure out what to name her sweater. She raised her eyebrows, then furrowed them down again and she stared at her sweater. She let out a quiet "Hmph" to indicate she was thinking but not quite sure. She tugged on her right sweater sleeve with her left hand as she very meekly said,
"It's to keep me warm."
Dr. Mendez pointed to a button on her shirt.
"What is that?" he asked.
Mom studied her button intently and mumbled something inaudible. He tried to redirect her attention to the button on his shirt. It took a few promptings before she finally looked up at his button.
"I have one too, what is this called?" he asked.
She looked back down at her button and said, very quietly,
"Hmmm. I don't remember the name. It's a ba-a ball thing."
He then pointed to her purse.
"What is that?"
"Hmmm? My purse. That's my purse," she said, extending a protective hand onto her purse.
Dr. Mendez pointed to the strap on the purse.
"And what is this on your purse?" he asked.
"It's...you put it on like this," she said, grabbing the strap and putting it over her shoulder.
Our semantic memory helps us to recognize and identify things in the world around us. Our brain lumps things into categories. For example: a dog, cat, octopus, etc would be lumped into a category with animals. Pants, nylons, sweaters, etc would go into a clothes category. Mom's brain is forgetting the specific names for things in each category, but is still identifying the category itself that it belongs in. She can remember the name of her purse, but she can't name specifics on her purse (such as the strap/handle). She can still, in so many words, explain the function of many things even though she can't remember the word for it. But even her memory and recognition of many things is diminishing.
Dr. Mendez then reviewed some information about semantic dementia with us. First and foremost, he reassured me that there is no genetic link found in this particular form of frontotemporal lobe dementia. In almost every other variation of frontotemporal dementia, there is a familial link; the semantic variant is not one of them. Semantic dementia is linked to a protein found in the brain. It was only discovered in 2006, so there is still very little known as to why it is there and what it is doing.
There are no medications at this time to treat semantic dementia. The only thing we can treat are the symptoms that come with the disease. We talked about many of mom's symptoms, and worked a plan around how to treat those. One symptom we addressed is mom's rigidity in her routine and her obsessive behaviors. There are SSRI's (Selective Seratonin Reuptake Inhibitor) that can help obsessive behaviors. They are safer to take than many of the medications she is on and could possibly help with her OCD. I say possibly because each person is individual; what works for one will not work for all. They have seen improvements in some patients while in others the medications have not helped. We won't know until we try. If it is successful, mom might relax a little in her rigid routine (she is obsessive about her naptimes, leaving at a certain time from family dinners on Sundays, etc).
Another way this medication might help is in her fixations on aches, pains and bodily functions. Dr. Mendez explained to us, as he did at previous visits, about the "hypochondria" in these patients...this time in a little more detail. Patients with semantic dementia tend to (for whatever reason) become fixated on bodily functions. They seem to lose the meaning of what bodily functions represent. For example, their stomachs may growl and make noise and it confuses the patient; they can't make sense of why their stomach is making that noise and they tend to obsess about it. As Dr. Mendez was explaining this to us, my mind flashed back to the countless complaints day after day from mom about her bodily functions.
"Gosh, I'm burping so much," she says, as she lets out exaggerated burps, "I just don't know why I keep burping so much. I'm so weird. I wish the doctors could help me know why I'm burping so much."
"I'm so weird, my stomach keeps making these weird noises, I don't know why it's doing that. I'm so weird."
"I wonder if I should ask the doctor too why when I yawn I get all this watery stuff in my eyes too. It's so embarassing, I'm so weird."
Listening to Dr. Mendez' explanation connected a lot of dots for me. Focusing and obsessing on these bodily functions is part of the disease. In congruence with the bodily functions is the focus on the aches and pains. What might feel like a twitch or a pin prick to you or me feels like a very "severe" pain to mom. She is obsessed with every little thing she feels.
My dad brought up the subject of her medications. One concern we've had is the amount of medications that mom is taking (each one related to some ache or pain she is feeling).
"With the amount of medication she is on, she shouldn't be feeling any pain. She should be in la-la land," dad told Dr. Mendez.
Dr. Mendez agreed that dad had a valid point. Surely, if the pain were real, the medications she is on should be controlling the pain. He suggested that by taking an SSRI, it could relax those obsessions and fixations on her bodily functions and perhaps some of the pain would dissipate. If it works, we could then wean her from some of the pain meds she is taking.
So a plan was set: they will write a letter with their recommended plan of action and send it to mom's geriatric doctor (we all feel it's best to keep medication under the control of only one doctor). The medication they are prescribing is a generic form of Zoloft. It has been effective in some patients and unsuccessful in others. There is no sure way to tell until we try it out.
Another concern we brought to the table was about mom's weight and eating. At her last visit in July, mom weighed 152 lbs. At this visit, she weighed in at 140 lbs. (though she argued with them that their scale was inaccurate...her scale weighed her at 135 lbs). They reiterated some of the things we already knew; people with semantic dementia become very selective with their foods. They begin to lose recognition of different foods. We have certainly seen this to be true with my mom and Jill recognized that as well, having read my Thanksgiving blog. If mom does not recognize a particular food (which is most of the time), she will not even try it. Another problem is that people with this disease tend to lose their sense of smell. Eating is 90% smell. If you don't recognize a smell, or if you have problems with your sense of smell, eating becomes an issue. This, combined with the loss of recognition, is the cause of mom's lack of interest in eating. As it is now, there are about 10 things on mom's "menu" list of foods that she will eat. As time goes on, that could dwindle down even less to where she only has a couple of things she will eat. Surely, this will become an even bigger problem than it is now.
Dr. Mendez and Jill asked us if we had any other concerns or questions. My dad asked,
"Is there anything we should be expecting in the near future?"
A good question.
In relation to the food dilemma, people with dementia tend to put things in their mouths that are not food. I have read this before; patients will eat paper or put small objects in their mouth, which can become a choking hazard. They lose the meaning of food altogether. In the next year, we could possibly expect to see mom putting things in her mouth that are not food, OR she might try to eat food items in an inappropriate way. For example, she may try to eat spoonfuls of flour (it's technically a food, but it is not to be eaten by itself!)
We asked if there was any way to estimate about how long each phase will last. Understandably, they are hesitant to answer that question. This disease affects every individual differently. It could last up to 20 years with some and maybe only 2 years with others. He also made a comment about my mom still being "so young", even though she falls into the age category; she is still relatively young to be going through this. I expressed my concern that it seems to be progressing very quickly with mom. I don't intend to sound like a pessimist; but I consider myself a realist and I simply want to be prepared for what is ahead. I slightly held my breath as I figured out how to ask the question that has been on my mind,
"Is this disease more aggressive when it hits at a younger age?"
Dr. Mendez looked straight at me as he confirmed my suspicions, "Yes. It is more aggressive when it hits at a younger age."
I do appreciate his honesty.
We talked some more about prevention...making sure mom is kept safe when she is alone. Ideally, we would like someone there to monitor her and ensure her safety when dad is away, but unfortunately that is not possible at this time (we're working on that). In the meantime, we need to take necessary preventitive measures to keep her safe, just as you would a small child.
We discussed the topic of speech and I asked if she would eventually lose her entire ability to talk. He explained that it's not exactly that she will lose her ability to speak, but she will lose words, meanings of words, objects and concepts, therefore making it difficult to communicate. We can already see that happening. I suppose only time will tell how severely her speech will be limited.
After an hour and a half of talking with Jill and Dr. Mendez, we left feeling a little more educated on what is to come. We feel satisfied with a plan of action between UCLA and mom's geriatric doctor and hopeful that we might see some improvement in her behaviors. We will also be receiving additional resources on support groups and seminars to help us in this journey. We will follow up in another 6 months and in the meantime, they are there to assist us with whatever other questions or concerns that come up.