A Full Update

It's been a while since I've do a full update on mom. I used to post an update every 6 months, following her check-up with UCLA. Since we've discontinued our visits to UCLA, I haven't been regular about posting updates. So here it is; a full evaluation of where mom is as of the New Year, 2015.

LANGUAGE

Although mom's language showed some slight improvements a few months ago, it quickly slipped away. If you don't talk to mom on a regular basis, it is likely that you won't understand much of what she says. I'm usually able to make sense of what she is trying to say (mostly because she is very repetitive in every conversation...one clear word will tell me what topic we are discussing), however, there have been a few times where I have no idea what she is trying to say. She speaks rather quickly, but most of her speech is slurred and mumbled.

CONVERSATION

This is different from language. Mom used to talk about her childhood A LOT; memories, events from the past. She loved to talk about religion and her pioneer ancestors. As of now, there are only a few things she will talk about: how weird she looks, how nobody supports her to drive her places, how those stupid doctors shouldn't have cancelled her as a driver, how she needs more make-up, how she needs her medicine....that's about it. I never hear her talk of the past anymore. She really doesn't comprehend much of anything we say. IF she does, it is only after repeating ourselves several times and then she might pick up on one word that makes a connection. She talks but she doesn't listen. It's near impossible now to have any kind of conversation with her.

HYGEINE

Unfortunately, this skill is rapidly declining. Mom will go several days without a shower and oftentimes my dad has to corner her while she is changing (either in the morning or the evening) and force her into the shower. Once she is in the shower, she is able to wash her hair and body with prompts from dad. Most days mom will hang her head in the sink in the morning to wash her hair and sometimes she will step in the shower to sponge bathe particular areas. But it has become a real struggle to keep mom fresh and clean.

She still brushes her teeth after every meal and washes her hands after she uses the bathroom.

GROOMING

Mom does still dress herself. However, most days she wears her shirts backwards and sometimes her clothes are inside out. She doesn't notice it at all.

She still attempts to do her hair and make-up. Lately, her eyebrows have been blue but she doesn't seem to notice it. She puts on LOTS of body splash. She used to have 2 favorite scents from Bath & Body Works (Vanilla and Moonlight Path) but now she is down to only one scent: Moonlight Path.

DAILY ACTIVITIES

She hasn't done much for a while now, but her days are more and more dictated by routine and familiarity. She rarely leaves the house; we can't get her to come over for family dinners or gatherings anymore. Her days consist of sitting on her bed while she waits for medicine time (she sits and waits for at least an hour before each time), playing computer games and waiting at the window for my dad to come home so she can pester him to let her drive places. Once in a while she will walk to her sister's house or attempt to walk up to the Avon Lady's house. Other than that, she is a hermit.

EATING

If we thought her menu was limited before, it's nothing compared to now. She has her "Slim Fast" for breakfast every morning and two Ensures a day: a vanilla Ensure with her daytime medicine and a chocolate Ensure with her night time medicine. She eats peanut butter and jelly sandwiches everyday for lunch and alternates between sandwiches and "Slim Fast" for dinner. If we're lucky, dad might be able to convince her to eat a turkey, cheese and tomato sandwich for dinner. She no longer eats salads, tortellini, or even fruit. I don't know what will happen when she forgets what a sandwich is; it's the only solid food she eats!

She is very messy when she eats. She always ends up with jelly on her face and most times it is all over the table; sometimes the chair and floor. Again, she is unaware of the mess she makes and doesn't clean up after herself.

SLEEP

She seems to be sleeping through the night...although I'm not positive about that. My dad would have to speak on that one. At this point, she stays in her bed through the night and knows when it is time to sleep. She continues to nap daily, but her timing has changed slightly (she goes down much earlier now).

CONCEPTS

Mom seems to have lost the concept of time. She can still tell you the names of the months, but she doesn't seem to know what month we are in or what day of the week it is. In fact, my dad told me that on Saturday she thought it was Friday. I have tried to point out days of the week on the calendar for her and she doesn't seem to connect the dots. She still knows what time to take her medicines, but I'm not so sure she understands the meaning of a minute or hour which would explain why she sits on her bed for hours at a time staring at the clock; she is waiting for it to read a specific time as her cue of what to do but doesn't really understand how long it will take until the clock changes to that time. That's my theory anyway...

She has no concept of money. She knows she needs it, but doesn't really understand the significance or the value of costs.

So, there you have it-in a nutshell. I'm not sure if I missed anything, but you get the idea. It's a little frightening to see what is in store in the next 6 months, and the next year. Sometimes I don't realize just how bad it's gotten until I see it spelled out. It's so heartbreaking to see mom's quality of life gone. I really don't know what keeps her going, she lives for her medicine and computer games. It's a very depressing life, devoid of any pleasure. :(

Some Notable Changes

At one of my early visits with mom at UCLA, the doctor and nurse practitioner discussed semantic dementia with my dad and me and what it entailed. One of the difficulties with the disease is obsession about certain things. Obsessive was definitely a struggle that we had with mom at that point. For the past few years, mom had been obsessed about quite a few things. A few things really stand out to me that would drive us a bit crazy which mom would constantly obsess about:

1) Her “fibromyalgia” (I put quotes on it because we aren’t sure if she was experiencing real pains or if they were phantom pains brought on by the disease). Mom complained constantly about every ache and pain that she felt and was very exaggerative when she thought she was feeling some sort of pain shoot through her body. Almost every conversation revolved around these aches and pains.

2) Church. She loved to talk about her Mormon pioneer heritage with anyone and everyone. She would talk about church/beliefs with anyone she encountered to the point where sometimes it was a bit uncomfortable. She was determined to bring her friend from up the street, Maria, to church with her. She was obsessed with The Mormon Tabernacle Choir (she would BLAST the music from her stereo, sometimes singing along).

3) Her job. Everyone she met had to hear the story about what a great teacher she was and how they “picked” on her at work, eventually leading to a suspension and then a resignation on mom’s part (of course all of these problems were due to her disease, we just didn’t know it at the time).

Jill (the nurse practitioner at UCLA) told us that as the disease progressed, these obsessions would slowly go away. It would be a blessing and a curse: a blessing because we had become wary of so many of these obsessions and conversations; a curse because it just means she is farther into the progression of the disease.

A few weeks ago, a realization dawned on me. These major obsessions have gone away. There are some other obsessions that have remained; for example, her daily rigid routine, her hair and make-up regime. She talks about the same things to everyone she sees: how much she is changing in her 50’s, how upset she is about not driving, asking people to take her to Sam’s Club. Indeed, those are obsessions or fixations for her at this time. But those few things that once consumed her and used to drive us crazy the most have nearly disappeared.

Sometimes the changes are so gradual that, unless we look back to compare, we don’t realize how much mom is changing. Most definitely, the disease has progressed a lot in the past 6 months. The disappearing obsessions being one thing, her appearance being another. Her eating is becoming worse and worse; her daily menu now consists of: one “Slim Fast” in the morning (which we’ve swapped with Instant Breakfast to get some nutrition in her), a sandwich (usually pb&j) for lunch, an Ensure for afternoon snack, a Slim Fast for dinner (every 3rd day she will eat a solid meal, either a sandwich or tortellini, and skip the Slim Fast) and an Ensure before bedtime. Rarely does she deviate from this diet, despite all of our efforts to get her to eat actual FOOD. Her speech has drastically declined; even more since my last post about it.  All of these changes make me a bit nervous as I sit and wonder, what is lurking around the corner?

UCLA 6 Month Check Up

Since mom’s diagnosis (in March of 2012), she has been going in for check ups every 6 months or so. This past Monday was another 6 month check up.

The first few visits were fairly beneficial. We were educated a lot on the disease. Last visit (in January), the Dr. was able to recommend medications to help mom with the rigidity and OCD behaviors that come with this disease. But the more and more we go, the more fight mom gives and the less we feel we are getting out of the visits.

It’s not that UCLA isn’t doing their job well. It’s just that there is no treatment for the disease. She is pretty much off the scale that they use for semantic dementia. She can’t identify much of anything from picture anymore. The one category she can still somewhat identify is the pictures of animals. She cannot name the animal correctly (she either doesn’t recognize it as anything or she classifies every animal as a dog) but she still categorizes most pictures as “animals”. Other pictures shown to her (house, comb, toothbrush, pictures of famous people, etc) elicit a blank stare and no response.

The Dr. reviews with us the symptoms of semantic dementia and reaffirms how mom’s behaviors are consistent with the disease. At this point, we are all too familiar with the symptoms. We’ve done our research and taken good notes. We know what is to come in the future. Not to sound like “know-it-alls”, but there isn’t much that they can tell us that we haven’t already heard. They can’t give any estimate of how long until mom reaches the next phase. Every case is individual. Semantic dementia is known to be one of the longer-running dementias; he said it could last as long as a couple of decades. With mom’s rate of progression, I’m not sure that it will last that long for her. In fact, I pray it doesn’t. I don’t say that in a cold-hearted way; rather, I mean it quite the opposite.

Mom’s quality of life is gone. The only thing she has to look forward to each day is her computer games. She has no interest any longer in her grandkids or even visiting with her family for Sunday dinner (or any dinner). Taking care of her is quite stressful. It is heartbreaking to see her decline more and more and it is heart wrenching as we sit helplessly by and watch the person we once loved so dearly slip further and further away. Dementia is a cruel disease.

For my own tracking purposes, I would like to note some characteristics of where she’s at in this disease, as of July 2013 (to compare with 6 months ago):

• Weight: Mom weighed in at 134 lbs. on UCLA’s scale. This is 6 pounds less than 6 months ago, but about 8 pounds more than a month ago when she was having her eating/gall bladder issues.
• Eating: Mom is down to maybe 5 things that she will eat. She starts the day off with Slim Fast (unbeknownst to her, we have substituted this with Instant Breakfast); she eats a turkey and cheese sandwich everyday for lunch; she will snack on Poppycock, fritos, strawberries or pineapple for her afternoon snack; for dinner she may drink an Ensure or she might make herself some tortellini and mixed vegetables. Rarely will she eat anything else, but she will still eat hamburgers and burritos as well.
• Daily Activities: Mom occasionally, very occasionally, do a load of laundry here or there. It usually only includes her own laundry (not dad’s) and maybe some towels. I never see her do dishes anymore. She sits in front of the computer before lunch and after nap to play Spider Solitaire. Sometimes she will go on walks but only if she has a purpose: a trip to the bank, grocery store or a visit to her sister. She rarely wants to come to family dinners or family functions and only does come when she is forced.
• Personal Hygiene: She is still able to groom herself. She showers almost everyday. She puts on her make-up and styles her hair everyday (though it may not look as nice as it once did). She still dyes her hair every 6 weeks on the dot and she brushes her teeth frequently. I have noticed that she is not as diligent about washing her hands when necessary. For example, in the hospital she washed herself with a paper towel in some private areas and wasn’t going to wash her hands afterwards (ewe!).
• Conversation: It is becoming increasingly difficult to hold a conversation with mom. She doesn’t comprehend most of what we say. She seems to pick out only key words in conversations that she understands but cannot comprehend the whole of what we are trying to say. Many times, she gives us blank stares when we talk to her and we receive no response. She will talk a mile a minute about what she wants to talk about, but she seems to hear nothing we say in response. Her speech is somewhat slurred together and mumbled, particularly when she can’t seem to find the right words to communicate.
• Behavior: She has become a little bit more confrontational. I first noticed this in the hospital and noticed it again the other night, when she was insistent on loading her food in their trailer refrigerator (packing for a trip); she broke one of the shelves on the fridge and when my dad tried to fix it, she kept getting in his way and insisting he put her food in the fridge “now”, despite his attempts to redirect him. At one point, he was physically trying to move her back and she raised her fist at him. So far she hasn’t struck anybody…let’s hope it stays that way.
• Sleep: She wakes up around 8:00 or 8:30. Sometimes she will sleep in late, until after 9:00, if she’s had a rough night or a rough day before. She still naps at 1:00 on the dot until 2:30. She goes to her room by 8:00 to take her medicine and tuck herself into bed. Dad says she gets up at 10:00 pm every night to go to the bathroom and then goes back to bed. Sometimes she’ll wake up in the middle of the night and trying talking to my dad.

UCLA 6 Month Update

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.