Monday, February 1, 2016

Full Update

Last January, I posted a full update about mom and the phase/progression of her disease. I want to document where she is at now, one year later, for reference to my readers who are tracking their own loved one's progression, as well as for tracking purposes for myself.

LANGUAGE

It has become increasingly difficult to understand what mom is saying, even for me. Most of her speech is mumbling although every now and then she will say a word or two very clearly. Those of us who are with her regularly can usually make out what she is trying to say by picking out a word or two that is understandable. For example, she might "speak" several mumbled words but we can pick out "driver" or "cancelled" and we know that she is talking about how she was cancelled as a driver. She uses gestures sometimes, pointing in a certain direction, which can also be a cue to what she is talking about. For example, she might be "talking" and waving her hand up the street and off to the right while and we'll pick up on the word Ellen; this means she is talking about wanting to walk to Ellen's house. We've learned to pick up on the cues and words that we can understand to figure out what she's talking about. But there are times where we are completely stumped and can't make sense of what she's saying.

CONVERSATION

As far as conversation goes...it is mostly non-existent. Mom talks but comprehends next to nothing that we say. Once in a while I might get her to understand what I am saying, usually if she talking about going to Ellen's and I answer (several times) with a "yes" that I will take her. Most times, she seems to not comprehend anything we say or answer to her. We try to use gestures and expressions to help aid in her understanding, but even that is difficult.

Nevertheless, we still continue to talk to her as though she understands. My dad will tell her things and joke around like he's always done. I will tell her things going on in my life (my daughter getting married, reminiscing about certain things) even though I know she doesn't understand. I suppose it's comparable to having an infant; you know they don't understand what you're saying but you talk and smile anyway to try and capture their attention or with the hopes that they can feel your love through your communication.

HYGEINE

Mom no longer bathes at all without assistance getting into the shower. I come over 3 times a week and my dad covers the weekends. She won't undress herself at shower time. To get her in the shower, we have to physically remove her clothing from her, like you would a child, and guide her into the shower. For the most part, she washes herself once she's in the shower. She uses about 1/4-1/2 a bottle of shampoo and conditioner each time and just as much soap and usually requires some help rinsing it all out. Once out of the shower, I help her get lotion on her body (her skin has been very dry lately) and I'll try to get some deodorant under her arms. We help her get dressed so that her clothes are on right side out and frontwards.

Mom still goes to the bathroom by herself but over the past few months has started having issues with that. She uses nearby towels and washcloths to wipe and will occasionally try to flush them down the toilet. She has left a mess in the bathroom (and beyond) a few times; I've been lucky enough to discover and clean up one of those incidents, but usually it's my dad who stumbles into the mess. She has had a few potty accidents but it hasn't been frequent enough for my dad to feel justified in putting her in diapers yet. Sadly, I think by next year's update, the report will be diapers.

GROOMING

Mom still goes through the motions of doing her make up, but she often gets confused at what goes where. This morning, for instance, she used her mascara for her eyebrows, eyeshadow, blush and lipstick. She went through the motion of putting on blush as well (she repeats many of the same steps several times) but she dipped the blush brush onto the blush lid; she didn't realize that the lid was on (it's a clear top). She will use whatever is next to the sink in place of moisturizer, including toothpaste and soap. She also tries to spray body spray (or whatever resembles body spray-for instance, air freshener) on her face. Because of this, we've had to move a lot of products from her line of vision to avoid her hurting her eyes and whatnot. This, of course, leads to her rummaging around looking for things and frustrated that things are not where they should be.

She will stroke her hair a couple of times with her hairbrush after her shower, but most times her hair is unkempt and sticking up-a stark contrast to where she was a couple years ago, when she plastered her hair down and wouldn't let even one hair stick up!

DAILY ACTIVITIES

Mom's routine is completely disrupted. She used to be very rigid on her schedules, as you may remember. Now, her concept of time is almost completely gone. She no longer waits until the time changes for computer time, eating time, bathroom time, etc. She spends her days (and sometimes nights) pacing around the house, looking out (and sometimes banging on) the window or front door. She is either looking for Bud (my dad) or talking about walking to Ellen's. She does like to sit outside on the patio now on the chairs; she gets sneaky though. If you won't stay right beside her she will try to get into the neighbor's backyard or walk up the street. She doesn't take many walks anymore-it's complicated. She will play only one computer game and only for a few minutes at a time. She will lay down to nap now and then, but only for short spurts of time. She changes her clothes several times a day, from pajamas to clothes to clothes she's dug out of the hamper. They are almost always put on backwards and inside out. This rotation of living room/front door, computer, wardrobe changes and naps will continue several times throughout each hour and day. Despite our efforts, we cannot engage her in anything: music, TV, books, puzzles...you name it, she won't engage in it. Except for walks. She still likes her walks (most of the time).

EATING

The only solid food she eats is peanut butter and jelly sandwiches, no exaggeration. We've offered her other foods and she won't eat it. She still makes her Slim Fast and drinks Ensure. But none of this is on any kind of schedule like before. She eats/drinks whenever she wants to. Sometimes that means 2:30 in the morning and some days she will eat 5 sandwiches!

SLEEP

Her sleep is all over the place. Dad is lucky if she sleeps through the night. Lately, she has been up several times throughout the night. She will go to bed at 5:00 in the evening and wake up to start her day by midnight-getting dressed, making a sandwich, etc. Dad usually changes her back into her jammies (to signal bedtime), gets her back into bed and will lay down with her to try and get some sleep, but she will often wake up within the hour and start the cycle all over again. The other night my dad finally got to sleep just in time for his alarm clock to go off. I really don't know how he does it.

CONCEPTS/COGNITIVITY

I'm not sure there's much to say in this section. She doesn't understand most concepts a grown adults would grasp. She is smart enough to try and hide her pb&j sandwiches (in her pants!) to sneak them into her bedroom because she knows we don't like her eating back there (jelly gets everywhere). She is sneaky in a few things, so I know there are some things she understands but it's hard to know what she can/can't comprehend. I don't know if she can write anymore. She used to leave notes around the house but I haven't seen her write in probably a year, at least. Every now and then I'll hear her read something (she'll read the "speed limit" sign in front of Ellen's house; that is her landmark to know where her house is). But other times she will stare blankly at words and seem to not understand them. I think there are probably a few familiar words left that she can read.

There you have it, a full update in a nutshell. Some things seem to be the same as last year but some things are most definitely worse.



Saturday, January 16, 2016

Christmas 2015

It's been a while since my last post. The holidays were quite busy for me this year and it didn't leave me much time for blogging. I did my 3rd annual toffee fundraiser to raise money for mom's caregiving fund. Each year it is more successful. This year I made over 70 pounds of toffee which profited more than $1000 for her fund. I couldn't have done it without help: namely my Aunt Claudia, sisters-in-law Amber and Natalie, daughter Maurina and son-in-law Cameron. I want to thank them all publicly for helping me with this effort! And of course all of the people who buy from us every year!!

I have to admit, the holidays left me feeling more than a little down this year. I feel like I've been able to keep upbeat the past couple years despite our loss, but this year it hit me hard. Mom's disease has progressed so much over the year that it leaves me to wonder what next Christmas will bring. Or will she even be here next Christmas? Last year she had no concept of Christmas, but we were still able to engage her for a few brief minutes to look at some gifts we had bought her. And we were also able to get her over to her sister's house on Christmas Eve to spend some time with her family. This year was even worse than last. There was absolutely NO engagement at all. We knew we wouldn't be able to get her over to her sister's house again (I'm not entirely sure that she even knows who her sister, Claudia, is despite the fact that she comes over every week). We didn't even attempt to take her because she wouldn't have understood and would have been anxious to leave the entire time.

Christmas day was just like every other day for her. Nobody really got mom anything for Christmas this year because we all knew that it meant nothing to her. My dad, however, did put a few gifts under the tree for her: a couple pairs of pants and a new shirt. I just don't think he could've done Christmas any other way. He couldn't get her to open them or even hold them at all; she paid no attention to any of it. I suspect that so long as she is physically here, there will always be at least a few presents under the tree.

I struggled with the gift giving this year too. I knew it wouldn't mean anything to her but at the same time, I couldn't stand the thought of not having something for my mom under the tree. A couple of months ago, I bought a new semi-professional embroidery machine. I have been having so much fun with it (sewing is my outlet and stress relief!) and I've made some really cute projects for myself, my family and friends and also for customers. One project, in particular, kept turning my thoughts to my mom. I created a pillow cover with an embroidered temple and phrase "Families are Forever" on it. The temple is significant in our religion because it is what (we believe) binds families together not just in this life, but in the eternities. My mom loved the temple and she and my dad made their family a forever family in 1982, when I was just 11 months old. I knew that if my mom was here today in her right mind, that she would adore my pillow and want one for her couch. My belief in eternal families is what keeps me going in a positive direction. Though we are losing her in this life, it is not the end. One day, mom will be whole again and we will be together again. That is the only thing that gives me any comfort.

The idea sounded a little silly even to me, but I decided I was going to make my mom a pillow for Christmas. I knew she wouldn't open it or even look at it, let alone understand the significance of what it meant. Nevertheless, I decided this was the perfect gift for my mom. So I made the pillow and I let my dad stand in for mom to open it on Christmas morning. I felt really choked up when he opened it, imagining my mom's reaction had she not been stricken with this awful disease. My dad's eyes may have been a bit misty when he opened it (though I can neither confirm nor deny...he isn't one to show much emotion-he's a tough guy- and I'd never throw him under the bus and tell all his secrets ;) ). I like to think that maybe in the next life, mom will remember all that happened in her life-maybe like she's woken from a dream. Maybe someday she will appreciate the gift I made for her.

There isn't much else to say. I love the holidays, but I'm glad they're over. I don't know what next year brings, but it will be sad for a long time. Somehow, I have to figure out a way to feel happy and not sad. I am very blessed to have a beautiful family, immediate and extended, that bring joy into my life. I can never fill the void of my mom, but I try to focus on the positive things in my life rather than the negative. Some days (and years) are harder than others.

Next week I'll give a full update on mom's phase/stage/health.

Monday, December 14, 2015

Sunshine for the Soul

People ask me all the time if there is medication to help slow the progression of dementia. The answer is no. There are some medications to help with the symptoms of the disease. In mom's case, she has become very anxious with this disease. Lately, she has been spending her days looking out the window and the front door and banging on them to get out. The difficulty in taking her out is that she is unaware of any boundaries. She doesn't look for cars when she walks into the street, she will walk into people's houses (usually people she knows, but she has been known to walk up to the wrong door). Most of our caregivers are too nervous to take her out because they feel uncomfortable in how to manage whatever shenanigans mom gets into. But mom gets restless being cooped inside the house day in and day out.

Dad started her on some anxiety meds a few weeks ago. We felt like her anxiety (about getting out of the house) has gotten to the point that she needs something to calm her down-for her benefit as well as the caregivers, who feel helpless at times. The medication seems to be working. She still goes to the door and window several times a day, but she's not quite beating the door down like she was before.

Last week, I took mom to visit her sister again. I thought it would calm her down for the day. Her visit was brief and shortly after we returned home, she was looking out the door again. She bounced between the front door and the window. I knelt beside her on the couch, peering out the window, and she started pointing to the chairs that sat in front of the window, on the patio. In her slurred manner of speaking, I made out what she was saying,

"I can sit there, yeah?"

"Do you want to sit outside mom?" I asked, debating if this would be a wise idea.

I decided I would try it out and see what mom did if I let her outside. I was a little nervous that she would run off on me, but I am not uncomfortable with blocking her or physically bringing her back home (and she isn't too aggressive at this point). I opened the door and told mom to come outside to sit down. She looked at me, seemingly unsure if I was really going to let her out or not.

"I can go out yeah?" she asked, hesitating at the door and looking at me suspiciously.

"Yes mom, you can come outside. Come sit down in the chair. It's a beautiful day," I said, motioning her over to the chairs. Mom cautiously stepped one foot outside the door and ever so carefully made her way to the chair and sat down. She sat forward, looking up the street and started waving her hands and talking. I could make out a few words of what she was saying: "Kristie" (she wanted to go visit her friend/avon lady up the street), "driver" (she used to be a driver), "Ellen" (asking to go to Ellen's again). I gave her the responses: "Kristie is at work", "I know, you were a good driver", "We already went to Ellen's".

After a few minutes, mom stepped up and started walking around the front yard, making her way over to the side gate. She opened the gate and attempted to sit on a big, empty box that dad had sitting next to the trash can. I directed her back to the chairs where it was safer to sit and she walked past the chairs and down the driveway. I was getting a little nervous that she might try to bolt across the street so I stood in front of her and let her talk and point around the neighborhood. She settled down a bit and sat on the brick wall that encircles the perimeter of the yard. I sat down beside her and mom silently looked up the street. Side by side we sat as the warm sun beat against our backs. I glanced over at her and her eyes slowly closed as she said (rather clearly) and pointing to her back,

"This feels good. It's warm, it's not cold."

I smiled and agreed with mom. My heart was warmed by her simple contentment to just sit outside and enjoy the sunshine.

Sometimes life gets so busy that we forget to appreciate the little things in life. This time of year has been especially crazy and busy for me, but mom reminded me to take a few minutes to enjoy the simple things in life, like the feel of the warm sunshine on my back. In that half hour that we spent sitting outside, I was able to just sit back and appreciate a moment with my mom, basking in the fresh air and sunshine. It seems like such a small thing to those of us who enjoy everyday life to the fullest. And life seems to buzz by so fast that we (or at least, I) sometimes forget to stop and appreciate the little things. But to someone like my mom who has reverted back to a simpler life, this moment outside made her day. I will always remember the way she looked when she was sitting on that brick wall, soaking up the sun and enjoying the moment.

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.
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Monday, November 9, 2015

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.

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.