Five Years

Today marks exactly 5 years since my dad took mom to UCLA and received the dreaded diagnosis: semantic dementia. I remember it like it was yesterday; the tears in my dad's eyes as he delivered the news that night while standing in his kitchen. The struggle to understand and come to terms with what the diagnosis meant. The grief, the anger, the acceptance (still working on that one). The course of my and my family's life was altered drastically that day. The past 5 years have brought about the greatest heartbreak and deepest challenges of my life. Yet, I know that the worst is still to come.

Five years ago, I wouldn't have guessed that Mom would still be with us today. According to the pamphlet that UCLA sent home, the average duration of FTD is around 7 years (at a follow-up appointment, the UCLA doctor told us the average for semantic dementia is 12 years, though it's different for everyone). Although it's hard to know exactly when this all started for Mom, we can trace signs back as far as 2007. By late 2009, we knew there was definitely a problem. That means that, while it's been 5 years since diagnosis, Mom has been dealing with this disease for 8-10 years now.

At this point, she is in the later phases of the disease, nearing the last stage but not quite there yet. Cognitively, she is very late stage, but the final phase brings about a disconnect between body and mind; the mind stops telling the body what to do (walking, talking, swallowing, eating, etc). Mom is still ambulatory (mobile) but I believe we are starting to see swallowing issues now. I would say that a majority of the time that she eats and drinks her water, she ends up coughing on the water. She isn't completely chewing her food either. Sometimes when she coughs, she will spit out chunks of her sandwich. A few times, she has coughed so hard that she's thrown up and we've seen the same issue with her partially chewed food. Other times, remnants of her food remain in her mouth and she doesn't swallow it all. Luckily, all she eats is pb&j and that is pretty soft going down and dissolves after being in her mouth for a while. If she were eating meats or vegetables this would be much more problematic.

If I'm just being completely honest here, it's a blessing and a curse (maybe curse is too strong of a word) that she is still here with us, 5 years later. It's a blessing because we've had time to make preparations and process what is to come-although I don't know if I will ever be fully prepared for "the end". It's a blessing to be able to serve her and care for her, even though she may not understand it now; it is a growing and learning experience for all of us. This has stretched me in ways that I didn't know I could be stretched. It's a blessing because she is still here physically to hug and love on (even though she pushes us away, lol), to say I love you to, to remember. I think one of the things I fear when she's gone is that people will just forget her. The hard part with this disease dragging on is watching her suffer and lose all quality of life, watching her forget everyone around her, watching the tears as she struggles. It's hard to see my dad go through this; I know he struggles but he handles it like a champ. He doesn't ever complain about her, even when he's up 20 times a night with her (no joke!) In fact, just last night we were talking on the phone and he told me that if she wants to get up 10 times a night and fix sandwiches or look out the front door, he'll get up with her 10 times a night and he will re-tuck her into bed just as many times. "One day I will miss it," he told me. His strength, love and dedication is a great lesson to me (it brings tears to my eyes just thinking about it). [He is probably going to be embarrassed that I write this, he is very humble and doesn't see himself as the inspiration that others do].

Five years goes by in a blink. I'm fairly certain that we don't have another five years with her; I'd be surprised if we have two (although I never thought we'd make it this long!) But as long as she is here, I will continue to love her and care for her to the best of my ability. Like my dad said, one day we'll miss this.

Below are pictures of her progression, from before diagnosis and then from 2010-2016.


Before diagnosis


2010- right around the time when we knew something was wrong and were seeking answers


2011-a year before diagnosis


2012- her birthday, the year she was diagnosed


2013-our last family camping trip


2014-the year of dark make-up and (later) the blue eyebrows


2015-the best picture I could get for Mother's Day


2016-taken last Mother's Day


Not quite 2017, but close enough (taken at Thanksgiving)

Severe Dementia

I hate to be a doom and gloom kind of person, but lately I feel really....unsettled. I don't know if that is the right word to describe it, but over the past few months I've kind of been feeling like I need to brace myself and prepare for some more difficult changes heading our way. Mom's disease seems to have progressed to the late stages of the disease. How long this stage lasts, I don't know. But she is more than moderately advanced at this point. I was reviewing the stages of semantic dementia from UCSF's website, and this was the description for the Severe stage:

"After four to five years of SD, the disease is usually quite advanced, which means the person's language skills have significantly eroded, making communication very difficult while the behavioral problems have significantly increased. Typical behaviors seen in late stage SD include disinhibition, apathy, compulsions, impaired face recognition, altered food preference and weight gain. People with left-sided damage tend to show more interest in visual or non-verbal things while people with right-sided damage tend to prefer games with words and symbols. The time from diagnosis to the end typically takes about six years, although this can vary significantly from person to person."

Over the past few months, mom has completely abandoned her rigid schedule and routine. She eats and takes her medicine whenever she thinks it's time. Sometimes, that means a peanut butter and jelly sandwich at midnight. Sometimes, it means pajamas and bedtime at 2:00 in the afternoon. She comprehends nothing that we say to her and her speech is hardly decipherable. But those of you who read regularly already know most of that.

Let me tell you something that you don't know. Twice over the past month (that I know of), mom has wet her pants. I haven't written about it because I thought it might be humiliating for mom. But you know what? It isn't her fault that this disease is ripping away at her. This is progression of the disease and this isn't anything that any of us should be ashamed about, least of all, mom. I know my dad is hoping that it doesn't get to the point of full incontinence, but I fear that it will eventually get to that point.

On Sunday, I took my mom for a walk. Of course she wanted to go to her sister's house, but her sister wasn't feeling up to a visit so I had to try and reroute mom. Needless to say, mom didn't understand my explanation that we couldn't go to Ellen's house and onward she walked. I finally called my dad, who drove up in his truck and brought us back home. But in mom's mind, she was still going to Ellen's. When we walked back into mom's house, she paced around the living room, calling for her sister.

"Ellen Ellen? Is Ellen here, Ellen?" She looked at my dad (who looked a bit confused that she was looking for Ellen in her own home) and I figured out what she thought: that we were at Ellen's house.

"Mom, Ellen isn't here. This is your house mom, we are home at your house," I said to her.

"Ellen, she's not here, no?"

After a few minutes of this, mom rushed back towards the door (where I remained standing).

"Let's go let's go, she's not here no, let's go," mom said.

"Maybe show her the kitchen," dad suggested, hoping it would bring her back to her home.

I guided her into the kitchen and as we approached the doorway, she slowed down and peered in the next room suspiciously. Finally, something sparked inside her.

"Oh! We are home yeah?" she asked.

"Yes, that's right mom, we are in your home now," I answered.

Her disorientation kind of caught me off guard. That she didn't recognize her own home was surprising, even to me. It seems like every week is something new and bizarre: attempting to use mouthwash for moisturizer, wearing a mismatched slipper with a shoe, wiping with a towel; one thing is clear: mom's world is losing order at a rapid pace.

What happens next? I don't know. One of the scary parts of this disease is not knowing what lies ahead. As 2015 comes to a close, I wonder what 2016 will have in store for my mom.
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A Steady Decline

A couple of weeks ago, my adopted-daughter got married. There was a wedding and reception here in California, followed by a reception in Colorado the following week (where my new son-in-law is from). My Aunt and cousins live in the same Colorado town as Cameron, so between wedding receptions, we drove out to Colorado and vacationed with family while supporting Maurina and Cameron with their family and friends out there. Needless to say, the past few weeks have been super busy, fun, stressful, exciting...such a mix of emotions!! My heart is so happy when I look at this beautiful picture. I love my family.

It goes without saying that I missed my mom terribly through this whole affair. My thoughts were turned her frequently and her absence was felt in our hearts.

It had been nearly two weeks since I'd seen my mom before my return last week. I wouldn't say that there has been a huge difference in the time that has lapsed, but there seems to be a steady decline week by week. My dad and I were talking the other day about some things that my mom used to fuss over that she no longer pays any interest to. I thought I'd write some of them down, just to mark her progression.

-Mom no longer asks about dyeing her hair. I think that concept is totally gone. She doesn't even talk about needing her hair cut! She used to fuss about having every hair in place as well; most days it looks as if she hasn't even brushed her hair (although I see the efforts being made...she has just lost that skill).
-Mom is losing concept of time and isn't so rigid on her routine. She still does things in "sections" of the day (morning, afternoon, evening) but aside from eating lunch at 12:00 and dinner at 4:30 (even that can slightly vary) she isn't strictly adhering to a schedule. She might nap at 1:00 on one day and 12:00 on another. I find her in bed often, as a matter of fact. She seems more restless these days and bounces around all day from bed to computer, to peering out the front door or window and devising a way to escape. Some days she will take her medicine at the wrong times as well. It isn't too much of a problem since most of her meds are supplements anyway, but a few times she has dropped a pill on the floor and it wasn't discovered until later.
-She will go longer and longer between shower days, to the point where we've now decided to set a shower schedule. On those days, either my dad or I will see that she gets through the shower. She resists and it takes a little force to get her in, but once she's in she knows mostly what to do (even though she uses half a bottle of shampoo every time!!)
-I've noticed that mom isn't using her Bath & Body Works spray anymore. Just a few months ago she was using a few dozen sprays every morning while getting ready (no exaggeration). She still uses the shower gel to wash her hands and moisturize her face (yes, you read that right), but I don't see or smell the body spray anymore. Furthermore, I haven't heard her nag my dad about going to Bath & Body Works in a couple months. I didn't realize that until I started typing. I bet the gals at the store are missing their sales ;)
-Mom's speech is continuing to decline. I've been pretty good at deciphering what she says, but even I am having trouble understanding what she says. I can usually pick out a word or two of what she's saying and make sense of which topic she's speaking of, but there are some times where I am completely confused at what she is trying to tell me.
-Mom still likes her walks, although the only place she ever goes is her sister's house or the Avon lady/friend up the street (I haven't been hearing about her as much the past few weeks though). She used to sprint up the street when we let her out to go walking. Her pace has slowed considerably. She can now sprint only a couple houses before she starts panting. Remarkably, she still insists on walking and getting her exercise, but she makes frequent stops and is panting and sweating by the time she will resign to getting in the car. It makes me nervous to let her walk too far for fear that she'll collapse, so we always have a car following behind to pick her up when she tires.

And there you have it-an update of the changes over the past few months.

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. :(