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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Journaling

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.

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.