Thursday, November 19, 2015

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.

Monday, November 9, 2015


When a woman loses her mom, it's kind of like losing a part of herself.

At least, that is how I feel about it. There are so many questions that I wish I could ask my mom: questions about motherhood and parenting, about marriage and relationships. Sometimes I feel alone and wish I had my mom to talk to about some of these more personal topics. I wonder if my mom has ever had the same thoughts or feelings as I do? Has she ever struggled with any of the things that I struggle with?

Last weekend, my dad pulled out my mom's journal. She only kept one and it was only about 70 pages long, written between the years of 1980-2002. But finding it and being able to read thoughts and experiences of my mom, in her own handwriting, was like finding a treasure. I cannot begin to put into the words the comfort and the connection that I felt to my mom when I read her words. I read about her joys and sorrows of being a motherhood (mostly joy...but motherhood is a difficult job much of the time). I was able to read how she felt about her children, about me. I read about events that had taken place, many of which I remember, from my mom's viewpoint. I read of her deep love for my dad. I always knew how much she loved my dad, but when I read her words it was like I was looking into her soul and seeing her deepest, most tender feelings. While I feverishly read and devoured each word, I felt an inexplicable bond to my mom. I found a part of myself in her, a part that I have been missing for a long time now.

I've thought a lot about this over the past couple years-about missing out on all of these discussions and connections with my mom. My biggest fear is that someday my children will have to go through this, especially my daughter. Don't get me wrong, I love my boys with all my heart, but daughters need their moms in a different way than sons do. At any rate, at the beginning of this year, I decided to start a journal specifically for each child. I don't write as often as I'd like, but I strive to write down thoughts and feelings to each individual child when I feel compelled. Hopefully I will be around for a long while for my children, but if I'm not, then I want them to know me and I want them to know how I feel about them. Hopefully my journals to them will be a treasure, just as my mom's journal is to me.

Monday, November 2, 2015

Newspaper Article

When I started blogging, it was originally a way for me to express my feelings and keep family and friends up-to-date on what was happening with mom. I never imagined that I would have so many readers or people following our story. We've received so much support and love throughout this journey and that really helps to get us through.

A couple months ago, I joined a task force, initiated by the mayor, for our city (actually, the city next to mine...we branched off from the city and became our own a few years ago). The idea of this task force is to get Riverside certified as part of the Purple Alliance. Becoming a purple city means that the city is taking steps to make the community a friendly place for people with dementia through education to the public and businesses, training law enforcement and emergency responders how to recognize and deal with a person who has dementia, and so forth. It's about raising awareness and helping people to feel that they are not alone.

Since I've been attending these meetings, my name appeared on the task force list, which The Press Enterprise (newspaper) picked up. I was contacted by a reporter in September and interviewed about my mom's story as well as the mission of The DEANA Foundation. They (the reporter and photographer) also came and spent a morning with us, observing our day and taking pictures of mom and me. It has been a mix of emotions to do this story. It's exciting that we are bringing awareness to this disease and accomplishing a great work in our community. I am open to sharing this with others in an effort to educate and make positive changes. It is a little difficult to see mom's face in the paper as she is now; I know she would not be thrilled with her appearance these days, if she was in her right mind. But I made sure to include some photos of "before" so that people can be reminded of the person she was-the person she really is. She will always be beautiful to me, and whether she knows it now or not, her life still holds great meaning and she is helping others around her with her story.

You can read the full article here.

Monday, October 26, 2015

Mom's Walks

Lately, all mom wants to do ALL DAY LONG is leave the house-usually to go "exercise" to her sister's house (Ellen). She paces all day long between her bedroom, computer and the front door. She's started doing something new: she puts her mouth to the door and intakes deep breaths. It sounds much like Lamaze breathing and looks like she is trying to suck in oxygen from outside, as if she can't breathe. It makes me so sad to see. I want to take her out walking but it's complicated. I feel like I've got a pretty good handle on things and I'm not intimidated in the least to take care of my mom in any way. I actually do like getting her out to walk. However, I have to consider safety and it's difficult to wrangle both my mom and my 4 year old when walking on busy streets to Ellen's house. I'm also concerned about whether or not mom can actually walk that far these days. It's only a mile, but she tires much quicker now.

I used to be able to drive beside mom while she walked. When she got tired, she hopped into my car and I drove her the rest of the way to Ellen's house. She stayed on the sidewalk and looked for cars before crossing the street. I received many funny looks as I crept behind her in my car, and even concerned neighbors asking if all was okay (understandably...I must have looked like a stalker!) But I was okay with it if it gave mom a chance to get some exercise. Unfortunately, my stalker-driving days came to an end a few weeks ago when I realized that it was no longer safe for mom to be out walking without someone directly by her side. I was stopped, in my car, on the corner of the street, waiting for mom to safely cross. A car was coming towards us, getting ready to turn the corner. Mom looked and saw the car and paused. As soon as the car started to turn, mom decided it was her turn to cross the street. Thankfully the car stopped for mom; it could've been disastrous. That was when I realized her walking-alone days were at an end.

So now the problem remains that mom wants to get out walking and is unable to. Many of our volunteer caregivers are older and wouldn't be able to keep up with her (or have to maneuver her if needed). She can't make it all the way to Ellen's anyway, so two people are needed to make this happen for her. The past two weeks, I've been able to go over on Sunday afternoon and take mom out to walk to Ellen's. I walk beside her while my husband stays with the kids at my dad's house and when mom gets tired, someone comes and picks us up in the car. Last week, she was able to walk the entire way to my sister's house. Yesterday, we started walking to Ellen's house but I called my dad when she started panting and pausing about half mile into our walk. Sunday will probably be our new walking day, since that is a day when the family is gathered together and I have help to follow us.

I was able capture a sweet moment with my mom at Ellen's house. Mom's new way of showing affection is shaking/holding hands with people. She doesn't hug or kiss anymore, but when she grabs your hand, you know it is a show of affection for her. Quite a few times now, mom has sat beside her sister on the couch, holding and swinging hands. It warms my heart to catch those rare moments where mom's heart is happy.

Wednesday, October 21, 2015

Mom's Crying Spells

I try to keep pretty positive on my posts, but sometimes this disease is so overwhelming. For the past week I've been in a funk again; it's such a rollercoaster ride. Part of my down mood comes from watching my mom's decline; it seems like every week there is something new that comes up in the progression of her disease. I've also taken on a little bit of freelance work, writing for a website that talks about dementia and caregiving. I just turned in my first assignment which took me nearly a week to gather my thoughts together for and write. While I am thankful for the opportunity to educate others, and also to be able to write down my thoughts and experiences throughout all of this, it can be difficult at times. Especially as I look back and reflect on all that has transpired over the past several years; it brings up many emotions-some good, and some not-so-good.

Even though I like to stay positive, I think it's important to share all sides of this journey, especially for readers who are going through this same thing. They need to know that they are not alone and that it's normal to feel down and discouraged at times. We are mourning the loss of someone we love who is still living, and that's a difficult thing to process.

One of mom's latest "things" that she is doing is crying. They aren't full on tears, but very often she will ramble about something and then her voice gets a little deep and crackly, her eyes gloss up and her lips quiver downward. She's done this a few times over the past year or so, but it is becoming very frequent now. I would say that at least once throughout each visit/encounter with mom, I witness one of these crying episodes. It breaks my heart. I want to break down and cry with her-and nearly did the first time it started happening consistently.

I was helping her blow dry her hair a couple of weeks ago when mom started mumbling something. I couldn't make out what she was trying to say but suddenly, out of nowhere, her eyes welled up, lips turned downward into a frown and her voice was cracking. There were tears in the corner of her eyes and I was a little caught off guard.

"What's wrong mom? What's the matter?" I asked her.

Of course she didn't respond to my questioning, but she continued crying about something. I turned off the blow dryer, looked into her eyes and patted her back, reassuring her that "it's okay". I could've cried myself, although I'm not much of a crier. My heart hurts every time she does this. Much of the time I don't understand what she's saying and I have no idea what she is thinking that is making her feel emotional. Is she scared? Is she confused at what is happening to her? Is she sad? I feel so helpless. I wish I could give her the comfort that she always gave to me.

My sister posted a little sentiment today about our experience over the weekend. I was going to blog about it, but then she wrote it, so I'm just going to paste here what she wrote:

"Sunday afternoon, my sister Cassandra walked with my mom over to my house. As soon as she walked in, my mom began asking, "Jeremy, Dominic, Raelynn?" I tried to explain that the kids were not there, but she continued to wander the first floor of the house looking for them. Finally, she stopped in the kitchen and her eyes welled up with tears. In the entirety of my mom's illness, I have never seen this, as some of her earliest symptoms were apathy and no show of emotion. My sister and I rubbed her back and assured her the kids would be back shortly (I then called my dad, who was just getting to his house with my kids after church, to bring the kids over). My mom sat on the stairs in the meantime, and when she saw one of my cats, she pointed and asked, "What's that? What's that thing?" My sister told my mom that she used to like cats and then took my mom's hand and stroked the cat. When the kids walked in a couple of minutes later and came and hugged my mom, her eyes again welled with tears as she again asked, "Jeremy, Dominic, Raelynn?" She visited for about 5-10 minutes before she was ready to go home.

I have been thinking about my mom a lot over the last couple of weeks, particularly how proud she would be of all of her grandchildren. When I became pregnant with Jeremy at 18 years old, it was not an ideal situation and my mom was naturally worried; however, once he was born, he was my mom's pride and joy. She loved being surrounded by her grandchildren; she loved babysitting, teaching, loving, and being a part of their activities. She shows little interest now; she usually pats them on the head and smiles and then continues whatever she is doing. No doubt that if she was herself, she would be the world's best grandma."

This disease is hard and the hardest parts are yet to come.

Wednesday, October 14, 2015


Last week we had a couple of celebrations of sorts.

First, we celebrated The DEANA Foundation's 1st birthday! It's hard to believe that just one short year ago, we gathered together with an idea in mind and had our first official foundation meeting. Exactly one year later, we awarded our first 2 caregiving grants! We've made a lot of progress over the past year; we still have a long way to go, but we are getting there inch by inch. Certainly, this was cause for celebration! And so we held our foundation's 1st birthday party at Farrell's Ice Cream Parlour last Thursday. We had a great turn out, a lot of which was family. Due to other events of the week (which I'll cover in a minute), we had a lot of family visiting in town. My dad's four sisters, several of my cousins and my twin brother's family all came into town and joined us for the celebration. Three of my mom's four siblings also made it to the celebration (the 4th sibling lives in Montana). We handed out buttons for every attendee to wear and it was just amazing to look around and see my mom's silhouette (our logo) being worn on all of our partygoers. I can't even express what it felt like to have that show of support- not just for the foundation, but in honor of our inspiration behind the foundation: my mom. Here are a few photos from that night, beginning with my mom's siblings and then some other photos of family and friends.

Sadly, the reason we had so much family in town was because my grandma (dad's mom) passed away a few weeks ago. On Friday, we celebrated her life with all of our family and friends. It is sad to see her go, but we had a lot of laughs (and some tears) at the great memories of grandma. For the first time in many years, all 16 of her grandchildren were together. It's sad that it takes death to bring people together, but good that we could all be here with each other. Family is everything.

Saturday was the Walk to End Alzheimer's. Because of all the family in town, we had a huge team this year!! It was so amazing to have everyone there in love and support of my mom. I know some people don't understand it (it doesn't change the situation with my mom), but walking together unites us and symbolizes our love and support for not just my mom, but for my dad as well. My dad and I are a lot alike in that family support means a lot to us (I suppose it's most accurate to say that I've inherited this value from my dad). I know that it meant the world to him to have all of his sisters there with him. Family is everything to him. I'm really glad that we were able to do this together and send the message to my dad loud and clear: he is not alone!

This year we also set up a foundation booth at the walk. It was great to meet new people and make new connections!

We were also invited back to sing The National Anthem again (my sister, Christina, friend, Mickelle, and myself). It's an honor to be asked to sing our country's anthem at an event so near and dear to me. The coolest thing happened this year: the MC looked down from the stage and saw the Team Dee Superheroes and thought they all looked so awesome that he invited the whole team up to stand with us while we sang The National Anthem! That was incredible!

As you can see, I have an amazing family. I tear up just thinking about how awesome they are. I couldn't have asked for a better way to spend all of these celebrations than with my family. They mean the world to me! This is what gets me through from one day to the next-knowing that all these people have my back and are there to help us get through this. Thank you all for being so incredible!

Thursday, October 8, 2015


One of the things I like about writing this blog is making connections with other people who are traveling this road. I receive emails often and in a way it's comforting to know that I'm not alone.

About a year ago, a reader emailed me and entitled her email "Your mom is just like mine!" It turns out that her mom was also diagnosed with FTD, the semantic variant. Over our correspondences, we found so many striking similarities of our moms at that time. We've become friends on facebook and although we don't talk often, I often think about her and her mom (as I do with all of the people I've emailed with!) For some reason, I was just thinking of her the other day, in fact, and thought about how I should send her an email to check in and see how her mom was doing. Today, however, my question was answered when I saw her post on facebook that her mom had passed away over the weekend.

I feel an incredible sadness for what this family is going through. I have been feeling a bit melancholy today as this reminds me of what the future holds for my mom and my family. The reality is that there are no survivors of dementia. It is a disease that ravages a person day by day, inch by inch. I don't know how much time we have left with my mom. Some days it feels like she can live another 10 years like this because physically, she is in good health. But then I am reminded that this is a disease of the brain; when the brain dies, eventually the body will catch up. Even though I know what the future holds, I ask myself, am I ready for that? I don't know how to answer. On one hand, I believe in a life after this one, where my mom will be free of her disabilities and pain, a place where we will all be together again. Other days, I don't feel like I am ready to give her that physical good-bye.

Dementia is an emotional roller coaster. There are constantly ups and downs-or should I say downs and even more downs. There isn't really anything "up" about it but I try to be positive in this journey and enjoy the time that I do have left with my mom. Today, I feel sad. I hold back my tears for this friend and her family and for the fate that awaits my own family. I want to wrap my arms around my mom and hug her tight (even though she'll push me away!) because I'll never know when one day might be the last.