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.

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.

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.

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.

Celebrations

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!

Reality

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.

The Prodigal Blow Dryer

A month or two ago, mom's blow dryer died. For those of you who read regularly, you know of mom's attachment to her blow dryer. My dad thought about replacing it, but it really was for the best that it disappeared as it was becoming a problem. Consequently, mom complains daily about us "losing" her blow dryer. Part of her resistance to get into the shower and wash her hair is due to the fact that she has no blow dryer for her hair (and wet body).

For weeks now, I've been meaning to bring over my blow dryer on the days I shower her. By the time I get the kids off to school with everything they need, I forget to grab my blow dryer (and I head over to her house straight after drop off). I was talking to my dad about it and it turned out that he found a spare blow dryer. He tucked it away in the spare room for me to use this morning on mom's hair.

With how much mom's been missing her blow dryer, you would've thought that she'd be ecstatic to see me walk in the bathroom with a blow dryer in hand. It didn't go over exactly as I thought. To start with, during her shower she continued her mumbled complaints of having no blow dryer, despite me telling her, and even showing her, that I brought my blow dryer over. When she got out of the shower, she went about her usual routine of applying make up and brushing her hair and I turned the blow dryer on and attempted to brush-dry her hair while she was readying herself. She didn't seem to notice whatsoever that I had the blow dryer. In fact, when she was done with what she was doing, she turned and walked herself over to her bed, plopping down and mumbling again about how "he lost my blow dryer"!

For five minutes I waved the blow dryer in front of mom, telling her I brought my blow dryer and coaxing her back over to dry her hair. She stared back at me with no comprehension in her eyes. Then, suddenly, she jumped up, looked at the blow dryer for a second before grabbing it from my hand and attempted to dry her hair. After a couple quick minutes, she turned the blow dryer off so I quickly grabbed it, turned it back on and continued drying her hair for as long as she would let me.

At one point, mom's lips curled down and her eyes became watery as she mumbled something I couldn't understand. It looked as though she was going to cry. She's done this quite a few time recently and I'm not sure what to make of it but it appears that she is sad or upset about something.

"What's wrong mom? What's the matter?" I asked. I couldn't understand what she was saying but it hurt my heart to see her visibly upset over something, especially not knowing what I could do to help her.

In the end, we got her hair mostly dry, but to be honest I'm not really sure if she noticed the difference! I'm not sure if it will click over time or if she will forever mourn the loss of her blow dryer.

Who's That?

As mom's disease progresses, her routines and rituals continue to change. One week, we have things figured out. The next week, everything is disrupted. One thing that we have learned with this disease is how to be resourceful. Sometimes you've got to roll with the punches and take it one day at a time.

For so long, mom was so strict on her daily routine: wake at 8 am, take medicine at 8:30, go to the bathroom at 8:35, eat breakfast at 9:00, sit on the bed and wait until shower time at 10 am....you get the point. Nowadays, there's not a whole lot of rhyme or reason to her day. She still wakes in the morning (long before 8 am now) and will drink her "slim fast" and take her medicine. After that, we can't be quite sure what she will do at what time. We can no longer leave her medicines out all day for her to take at the designated times because she'll take them all at once. She doesn't shower unless dad or I force her in. Some nights, she is up at midnight, fixing her sandwich for lunch. Other times (like today) she eats her lunch at 8:00 in the morning and skipped her afternoon meal. Sometimes she'll take an hour nap, other times she'll nap for two minutes and then be up again. We never know what each new day will bring!

One of the things that has been especially helpful for us is mom's love for her computer games. On her old schedule, she spent a few hours a day in front of her computer. Nowadays, she will sit down for a few minutes and then be up doing something else before returning to the computer for another minute. She isn't spending a lot of time in front of the computer, but she is still playing a game or two of spider solitaire each day (I haven't noticed if she still plays the tile game she was playing).

So what does mom do all day? you might ask.

Well, let me tell you.

All day long, she paces back and forth from her bedroom to the living room. She walks down the hall, opens the front door and checks to see if the screen door is unlocked. When she sees that it's locked, she pounds on the door. If there is a passerby on the street, she will call out,

"Hello hello?"

She bounces between the front door and then over to the couch where she hangs over to peer out the window. She notes whether or not "his" (dad's) truck is there. If anyone is outside, she will then knock on the window to get their attention. After doing this back and forth a few times, she then checks the garage door to see if she can get it open. Of course she can't, so then she usually goes back to her bed where she may rest (with the sheet over her head) for a few minutes, followed by a brief trip to the computer and then back out to the living room once again. And this is how she passes her time. EVERY. SINGLE. DAY. I'm thinking that her short term memory has greatly declined now as well.

On the bright side, she is no longer shutting herself in her room all day; everyone gets to enjoy her presence a bit more! ;)

This picture was one that I took a couple weeks ago when my dad was working in the front yard. Dad was never alone while working! Mom was there, knocking on the window and calling to dad. She wanted him to put out her night time medicine and at one point she even went to the kitchen and grabbed her glass which she knocked against the window! Boy, she is persistent!

In other strange news...we took mom to the lab as part of a physical she has scheduled. She hasn't had her blood checked in a couple of years; we figured we were overdue. We checked on her lab results today, and as far as I can see, all of her numbers are in the normal range (except her LDL was a little high). I thought for sure that her peanut-butter-and-jelly sandwich-diet might reflect deficiencies or other health issues (blood sugar, cholesterol, etc) but apparently she is faring well. It's so strange to me that she can be doing so well physically when her mental capacity is severely altered. It leaves me to wonder, how long will she have to live with this disease?

The Unfavorite Child

I am not my mom's favorite person these days.

Not to say that I ever was. But I think it's safe to say that she liked me pretty well in the past :)

One of the things that we knew would become an issue with this disease is hygiene. This was one of mom's strong points in the earlier stages. In fact, even when mom failed her tests at UCLA, the nurse found the positive for us by saying,

"At least she still takes good care of herself and doesn't need help in the area of hygiene."

At the time, I couldn't even imagine mom needing assistance with her grooming because of her rigid routine (which included showering and toileting-at very specific times) and her obsession with her appearance. Sadly, mom has been losing these abilities little by little over the past several months. I've written a few posts about her diminishing hair and make up skills and the irregular showering. Unfortunately, over the matter of a few months, it has gotten to the point where mom will go all week without showering, until she is forced to get in. Her resistance usually accompanies complaints that she doesn't have enough make-up or a blow dryer (despite the fact that she has both). She doesn't want to mess it all up since she feels she doesn't have what she needs to make herself presentable after the shower.

My dad never complains and rarely asks for help with anything other than supervising mom. He leaves the tougher jobs, like grooming, for himself. After a hard day at a labor intensive job, I know the last thing he wants to deal with is having to forcefully get my mom into the shower. Not to mention that by showering her at night often disorients her into thinking it's morning time (which means dad gets little sleep at night!) He is out the door early in the morning, oftentimes before mom is even awake, so showering her in the morning is tough as well. I decided to make it part of my job and (hopefully) take some of the weight off of dad's back.

Over the past couple of weeks, we've implemented a new showering routine for mom. Every other day, mom gets her shower, whether she likes it or not (I would say not). Of course it isn't as easy as simply telling her to get in the shower. It was tricky at first, but I've pretty much got it down now. Sad to say, but we actually have to remove her clothing from her (she won't do it herself), much like with a little child, to cue her that it's shower time. Some days she will plop her body down on the bed and I have to pull her pants off while lifting her body (that's a good work out!) Other times I can get her into the bathroom first and remove her clothes there. Once I manage to get her clothing off, she usually protests and sits herself firmly down on the toilet, waiting for me to go away. I pretend to leave and crack the door shut; she stands back up, poking her head out the bathroom door to see if I'm gone, and that is when I take my opportunity to guide her into the shower, disallowing her to sit down again (sometimes that results in a naked bear hug as I move her into the shower!) The other day, no sooner did I start taking off mom's shirt than she lamented,

"I don't want you here, I wish you weren't here!"

Later that day, while visiting her sister, she mumbled complaints to Ellen about how I shouldn't "see her naked or plain Jane." I know I am not her favorite person these days but that's okay. It doesn't hurt my feelings. I know that the "real" mom, lost deep inside her somewhere, appreciates all that we do as a family to care for her and keep her as comfortable as possible in her own home.

I'm not writing this post for sympathy or for praise. As much as I hate what this disease has done, I am happy to help my mom. I do not resent that [help] in the least. Neither am I doing anything that millions of other unpaid, family caregivers do day in and day out. Unfortunately, this is a part of life (I would've been happier to deal with it much later in life!) and there are many other families who suffer far worse with their loved ones. Lucky for us, mom doesn't have many of the aggression and behavior issues that many people with dementia suffer from. I don't know if it will come later on, but I'll be happy if we skip that part! The only thing I do regret is making mom feel uncomfortable. While I know that it's become necessary to assist with her bathing, I know she doesn't like me seeing her in the nude. I feel bad about it and try to look away when I can but there's really no way around it. So it goes with dementia.

Karaoke Night

Last Friday night, we had our first "big" event for The DEANA Foundation. It was a "Karaoke For a Cause" night and we hosted it at an adult daycare facility in Riverside. I'm feeling so good about the results of this fundraiser that I wanted to share about it with you all!!

To start with, my favorite part of the whole night was being able to recognize and honor my mom. Even though she wasn't there physically, I was able to share with our guests about the woman who has inspired this foundation. It felt great to share some things about my mom and the woman she once was; the person she really is. It's important to me that my mom is remembered-not just for her strange and quirky behaviors from dementia.

We were privileged to have some special guests in attendance: two City Councilmen (one who is retired and one who currently serves Riverside county) as well as Riverside's Chief of Police. They were very happy and supportive of the mission we are trying to accomplish. City Councilman Chris MacArthur even got up and gave some remarks, thanking us for our work. It felt amazing to have their support!

We had a good turn out and all of our guests had a great time. The food was good; our DJ was awesome and kept the party alive. I was surprised at how many people actually got up and did karaoke! There were some really great entertainers in our crowd. We started the karaoke portion off with an opening performance. Our VP (Melissa) my friend (Mickelle) and myself dressed up and sang a song. My good friend, Ember, helped us to rewrite the lyrics to The Spice Girl's "Wannabe" to go along with our purpose for the night. It was silly and a lot of fun. (You can see the video on our facebook page).

So now for the important (and exciting) update. While our numbers haven't been confirmed yet, I can tell you that we raised well over $1,000 that night, which I would say is awesome for our first big event like this! In addition to that money raised, Care Connexxus awarded our foundation a grant that we can award to a family to give them a week of free adult daycare at their facility. Combined with the other money we have raised throughout the year, we are ready to start awarding our caregiving grants this fall!! I am feeling really excited about this! We still have lots of room to grow, but considering we've really only been off the ground and running for about 7 months now, I think this is a very big accomplishment. We anticipate our attendance to double next year and our supporters are already asking about our next event (stay tuned!)

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.

Do Good!

When I was a kid, my mom found a card with my name on it and the meaning written beneath it. It read:

"Cassandra
Helper of Mankind"

She always told me that the meaning of my name fit me perfectly; that I was the kind of person to help others. I don't know how well I've really lived up to my name, but I can say that I do try to help others and spread some goodness wherever I go. Maybe I've subconsciously had it rooted in me because of my mom's opinion of me.

Some people may think I'm a little bit crazy for starting The DEANA Foundation. Some frequently asked questions include:

"Don't you have enough on your plate?"
"Shouldn't you be putting more of your energy into your mom rather than a foundation?"
"How does this benefit your parents (mom specifically)?"

These are probably all fair questions and they are all questions I have asked myself. Sometimes I wonder why I take on these ambitious project9s. Why can't I just be "normal" like the other moms around me and spend my time volunteering at the kid's school, or join the PTA? (By the way, this was always my plan as a mom). I am always second guessing myself and I've spent many hours pondering these questions. These are some of my conclusions.

1. "Don't you have enough on your plate?"

*Yep, I have a lot on my plate. I always do; that's a part of life. Just when you think things are going to calm down, something else comes up. I'm the kind of person that likes to stay busy. I don't spend much time in front of the TV; I like to be productive with my time. I will always have a lot on my plate.
*It isn't something I can really put into words, but I feel inclined to do something in the face of the disease. Early on, before I started writing this blog, I felt the need to be proactive in the dementia community. Being involved keeps my mind busy and gives me a focus. It's easy to sit back and let the sadness and despair consume me; I feel so helpless with my mom and in some way this makes me feel like I'm doing something.

2. "Shouldn't you be putting more of your energy into your mom rather than a foundation?"

*I feel like being involved in this cause and in this foundation actually helps me to put my energy and focus into my mom, rather than away from it. I am reminded how much my dad needs support and I try my best to be there for him and my mom. There aren't many times of the day that my mom isn't at least in the back of my mind. I think it also helps to bring our caregivers and our community together and more aware.
*One day, my mom will no longer be here. That is a sad reality that we've had to face; we lose her little by little, more and more each day. When she is gone, there will come an emptiness. Even though there's an emptiness now, I still devote a lot of time and energy to taking care of her. I need something to keep me going when she is gone. I don't want her to be forgotten. I feel like this foundation is a good way to honor her and keep her memory alive. I hope it's inspiring and encouraging for my dad to see how many people support and love my mom.

3. "How does this benefit your parents (mom specifically)?"

*There are no guarantees that this will benefit my dad and mom. I didn't start this foundation with selfish intent. Nevertheless, my dad is free to apply for a grant just as any other family is able to. He will go through the process and our board members will vote on who receives what amount of money. Our goal is to help as many families as possible; certainly he isn't exempt.
*My family is not the only family suffering. Who knows if one day I or one of my children could be affected? Aren't we all here to help each other??

I struggle daily with self-doubt. I harbor the fear of failure. I want this foundation to succeed. I want my mom's name and legacy to be remembered. I want to help other people who are suffering from this heartbreak. I want to live up to what my mom always thought of me, to be a "helper of mankind."

With all of that said, I do want to invite all of my readers to check out our foundation website. It is actually getting a professional make over right now, so if you check back next week it will look different (and way better!!). Our foundation needs help to give help. If you feel inclined to join the cause and help others on this journey, there are many ways to help, whether near or far.

For my local readers, we have a foundation charity event coming up on August 21st. It is going to be an evening of fun with dinner, karaoke, some magic, and raffle prizes. I'm posting the flier here and you can also visit our facebook page and website. Tickets must be bought in advance in order to plan for food (deadline is August 17th). You can buy them on our website's "shop" page or through me personally.

Thank you to all who continue to support our family and The DEANA Foundation!

To visit The DEANA Foundation, please click here.

An Unpleasant Day

I've been fighting myself all day about writing this post. It's hard to share some things that are so personal and private and I don't want to shame my dad in any way (although he has nothing to be ashamed about). Maybe I shouldn't write anything, but then I wouldn't be sharing the whole journey: the not-so-good, the bad and the ugly. Today was an ugly. It was the kind of day any caregiver would dread and I was fuming for the better part of the day.

It started when I stopped by my dad's to drop something off for my Aunt, who watches my mom on Friday mornings. My dad was supposed to be gone, but his truck was parked almost midway down the driveway with his front end hanging a couple feet into the street, which I thought was odd. I walked up to the porch and noticed a white car parked across the street that I didn't recognize. As the kids and I reached the doorstep, I pulled my house keys out and went to unlock the deadbolt only to discover that the screen door (which is always kept locked to prevent mom from running out) was not only unlocked, but cracked open. Strange, I thought. In a quick instant I wondered if something was going on and when I opened the door I walked in to find two women, standing in the living room and talking to my dad, who was sitting on the couch. One of the women was holding a clipboard and after only a few seconds of listening to the conversation, I knew they were talking about my mom.

I looked over to my Aunt Claudia, who was also sitting on the couch, and gave her a questioning look, wondering what this was all about. She mouthed the words "social workers" to me. Weird, I thought, crinkling my nose. I left the room, while they continued talking, to check on my mom in her bedroom. Nothing seemed out of the ordinary in there. When I returned to the living room, the social workers were finishing up their visit and said good-bye to my dad. As soon as they left, I turned to my dad.

"What was that all about?" I asked him.

"Well, it seems somebody called Adult Protective Services on me," he said, matter-of-factly.

My jaw dropped and I couldn't even find words to respond. It made no sense. Who would do such a thing? Why would someone call and cause trouble for my dad? And most of all, what could they possibly have reported??

When I finally found my voice to ask my dad these questions, he replied that the social workers were not allowed to tell who made the call or why. All they could tell him was that *someone* called because they were "concerned" about his wife.

The social workers checked in on my mom and talked to my dad, who had nothing to hide. He answered each question honestly and opened up about some of the struggles we've faced. They talked to him about the option of putting my mom in a facility; my dad told them it was out of the question. In the end, I think they were satisfied with all of my dad's answers and could see that he is doing his best to take care of his wife; they didn't say anything about a follow up but I don't really know what the procedure for that sort of thing is (if they would tell him or not) but I fear this has opened a door to social workers now breathing down our necks and watching our every move.

Let me just tell you how I felt when he shared this information with me. You know what they say about Mother Bear Claws? It was something similar to that. How dare somebody call Adult Protective Services on my dad!! My dad loves my mom more than we even know. I can see it in his everyday actions for her; working hard to find a way to keep her at home where she is comfortable, keeping her happy with her pb&j sandwiches and "slim fast" and Bath & Body Works; buying her endless supplies of make-up and following after her on her walks; disabling hot wires of her blow dryer just so that he doesn't have to take the blow dryer away from her completely (she loves that blow dryer!); switching out her non fat milk to almond milk in an effort to get her something more nutritious and easier on her stomach (talk about a pain in the neck!)...these are just a few of the great lengths that my dad goes to for my mom to see that she is safe and happy. If my dad didn't love and care about my mom so dang much, he would've put her in a home a long time ago. None of us are perfect and this is a hard, untraveled road that we find ourselves going down. Mistakes may be made, but make no mistake about her well-being; mom is getting the best care possible at this time. At the end of the day, people may disagree with the way we deal with things, but it is nobody's business!!

I've spent most of the day stewing over this issue. I can't figure out who would do such a thing. I would hate to think it could be any of our caregivers or family members. Most of the immediate neighbors know my parents. If there was any concern, why would somebody think they need to address it with Adult Protective Services? I've tried to think that maybe it really was out of concern for my mom but let's face it, calling APS is a chicken move! If there's any concern, they could have talked to my dad. Instead, this person has added even more stress into my dad's life because now, whether he realizes it or not, APS is going to be checking in on him, watching for any and every little mistake; this is what worries me the most. Until someone has had to care for their loved one with dementia, they don't understand it-not social workers, not therapists, not doctors. The last thing a caregiver needs is someone breathing down their neck and feeling that they aren't doing a good enough job.

So, for the person who called APS and to everyone else reading this post, let me say it loud and clear: MY DAD IS DOING A GREAT JOB CARING FOR MY MOM!! I admire him greatly and have learned many lessons of love from him. There's nowhere else that my mom could be where she would be better taken care of or loved more than with my dad. So...if anyone has a problem, either brave up and bring your concerns to my dad, or go away!

Raelynn's Special Day

Yesterday was a bittersweet day. Sweet because it was my niece, Raelynn's baptism day. Bitter because our family wasn't whole.

Baptisms are special events in our families and our religious culture. As a family, we are always there for each other for these important life events. Of my parent's 12 grandchildren, 6 have been baptized; Raelynn was grandchild #7. She is also the first grandchild baptism that my mom has not attended. The last two were baptized two years ago and even though mom was struggling with her dementia, she still went to church most Sundays and understood the special ordinances that were taking place. She was excited and happy for these occasions and for those of you who have been reading my posts from the beginning, you may remember that mom was even a bit obsessed with God and church for a while. It was one of her favorite things to talk about...over and over and over!

I can't tell you the last time mom has mentioned anything about church. It's been well over a year since she's attended church. She had no understanding of Raelynn's special day whatsoever. Her absence was noticed and felt by all of us. When we took our picture together in the hall, as we have with each baptism, I felt sad realizing that this was the first (but not the last) baptism that mom has missed. Several of us noted that grandma wasn't there. She's missed so much over the past couple years-particularly the past year. Yet we've only just begun. My mom won't be there for my other two boy's baptisms, or for any of her grandkid's high school graduations or weddings or baby showers. Her presence will always, always be missed.

While Dad Was Out

Last week, my dad flew out to his home state of Connecticut, with his 4 sisters, to attend their cousin's wedding and have a little family reunion. He was gone for 8 days and 7 nights. It was a very much needed break for him and I'm really glad he got to go. I know he worries leaving mom behind, but he knows that he can count on us to help him out.

I've watched mom plenty of times in the past when dad has gone out of town. We have the usual routine of caregivers during the day and between my sister, her husband, my husband and myself, we rotate turns spending the night. I'm finding it a bit more difficult as her disease progresses. She is to the point now where she needs some help getting into the shower, so that was one of our jobs while dad was out-making sure she showers. It's not an easy thing to have to disrobe your parent and force them into a shower. The first time I had to do that, I really felt like I was violating her in some way. The first time is the hardest. After that, you learn what is necessary to do and you just learn to it. It's probably more difficult emotionally than anything else.

It's hard to put into words all the emotions that I felt during this week of caring for mom, but I was glad that I was able to come over and help my mom (and dad). While it's been difficult to have to take on a parent role with my mom, there were some tender moments as well. One night, mom was laying in her bed and I went to lay down beside her, just to keep her company (and maybe for my own comfort as well). She was mumbling that her face hurt. She hasn't been washing it well and I discovered that she is using her body wash as a facial moisturizer; needless to say her skin is dry and peeling. I knew she would fight me, but I decided to try and wipe her face with a cleansing cloth. At first, she protested and pulled her sheet over her head and began laughing hysterically, which made me start laughing as well. Eventually, she let me finish wiping her face as the dead skin wiped off in the cloth. I brought over her face moisturizer and began rubbing it into circles on her face. She initially started swatting my hand away, but she finally calmed down. She laid her head back and closed her eyes as I rubbed the moisturizer into her thirsty skin. For a quick minute, I thought she might have even enjoyed the nurturing.

There were definitely ups and downs of the week. I felt a huge weight of responsibility on my shoulders while my dad was gone. Even though I had help from other people, ultimately I felt the most responsibility for her. I was in charge of coordinating the caregiving schedule so I had to worry if people would show up or not and fill in when people cancelled at the last minute (which I usually do every week anyway, but not 24/7). It's no different than being a parent; your children are on the forefront of your mind constantly, and that's how it was with my mom. But with the responsibility of caring for someone also comes a growing love for that person. My heart swells with love for my mom. It is so hard to balance my family and kids and all of my other life responsibilities and I'm not perfect. By Thursday night, I admit I did have a little bit of a meltdown and was feeling discouraged. But I think that comes with the territory of caregiving. Caregiving is hard and it takes a lot out of you, and there are times that you have those meltdowns, but it doesn't change your love for the person. It made me realize and appreciate more of the weight that my dad carries around with him every day. I am really glad that he was able to have such a fun week with his family; it is well deserved.

I feel impressed to say one more thing; someone made a comment to me that I want to address. It was insinuated that I write about things to put it out there and show off to everyone what I do for my mom. That insinuation really hurt my feelings. It's often difficult to write the things that I do and I hesitate sometimes to do it. And I've always had the personality that worries what people will think (though I'm learning, with age and experience, to get over that). I write for a few different reasons: to educate about the disease, to help others in their journey and because writing is therapeutic for me. People leave me very kind comments which I appreciate, but it sometimes makes me uncomfortable because I really don't feel like there's anything extra special about what I'm doing. I think it is what anyone would do. I do not write to seek praise or to get a pat on the back, simply to share our journey with others.

Pill Popper

I remember my mom telling me a story about my twin brother. We were small kids; probably about 3 or 4 years old. Somehow, Joe had climbed up onto the counter and gotten into the Dimetapp cough syrup. I don't remember how much she said that he drank, but I remember her recounting her panic and calling the doctor right away. Luckily, my brother was fine and suffered no side effects from getting into the medicine.

Today, I took my kids to the beach. I was due back at my mom's this evening because I am watching her overnight for my dad. Of course we hit some traffic on the way home and I was running a bit behind. I called my brother-in-law, Melvin, to see if he could come sit with her until I got the kids home and fed; he willingly came over. I didn't even think to tell him to put out mom's nighttime medicine because I knew I'd be there long before it was medicine time. Plus, I thought that my dad was waiting a little longer to put her nighttime medicine out because she was getting a little mixed up and taking them sooner than she was supposed to.

Well...this was almost a dangerous mistake I made. As you probably know from some of my other posts, mom is obsessed with her medicine. She paces around all day asking for it and by 6:00 this evening, when her pill container didn't show up on the counter, she was getting a bit of anxiety. Melvin saw her go into the kitchen; he was sitting on the couch watching TV. He saw her walk around the corner by the fridge and suddenly heard her laughing. When he went to check on her, he found empty bottles of Pamprin and Allegra beside her and a cup in her hand, ready to get water from the fridge. He saw her mouth full of pills and, thankfully, was able to retrieve them out of her mouth...all 31!!

Of course I felt a little panicked when Melvin called to tell me this. Thank goodness she laughed her mischevious little laugh, and thank goodness Melvin got up to check on her! I feel horrible that this happened under my watch (while dad is gone). Needless to say, I packed up everything that even resembled medicine capsules and put them in a safe place for dad to sort through when he gets back.

Summer Days

Summer is here and I've been absent from my blog again. I've been trying to keep a steady balance of keeping the kids busy, helping with my mom (and filling in for caregivers who are gone, including my dad!), working for The DEANA Foundation, keeping up on household responsibilities (a never ending and all consuming task), running to and from swim practice and meets, and working on my new "calling" for church. Oh, and did I mention that my niece-daughter is getting married next month? Yes, I've been planning a wedding as well. My plate is definitely full but those of you who know me, know that I wouldn't have it any other way. At least I never have time to be bored! ;)

A couple of years ago, when I started my Mondays with mom, I wasn't very excited about bringing my kids along with me during their summer break. I was worried that they would be bored or complain about having to give up parts of their vacation to come and sit with grandma. Oh how my perspective has changed! It's true that we've had to turn down some play groups in order to keep our commitment to being with mom on Monday. And I'm sure there are other places they'd rather be. Don't get me wrong-if it were a perfect world, my mom wouldn't be suffering with this horrid disease and, consequently, we wouldn't be spending every Monday caring for her. Rather, we would be planning fun summer outings with her! But over the past couple of years, I have learned to appreciate and value the time that we spend here with her. There are definitely days when they get bored and drive me nuts. But even they are learning to appreciate that Mondays are the day we take care of grandma.

My daughter, Aubrey, is a very compassionate soul. Many people know her feisty, spirited side but don't always get to know this loving, sweet side of her, which I adore. Oftentimes I overhear her talking to her brothers about how much grandma loved them, how she used to be so excited to be a grandma (sentiments that I've shared with her). I hear her and her brothers wishing away the dementia. Sometimes, she will be the leader in picking a chore to help grandpa around his house (not sure if he ever notices).

Lately, I've been observing Aubrey's interactions with my mom and it warms my heart. Every time we come over, she now tells grandma "hi" and gives her hugs. My mom never hugs her back or responds (unless it is to brush her away) but Aubrey understands that it is the disease causing her to behave that way. I encourage her to keep on hugging grandma and telling her she loves her anyway. My boys are not quite as affectionate as my girl, but now and then they will follow big sister's example and give grandma hugs and "I love you's."

This morning, I went into my mom's rom and lay beside her on her bed. I often do this; she usually hides from me underneath her sheet and begins rambling about how dad doesn't support her with money and credit cards, followed by promptings for me to leave her room because,

"You can't see me napping."

I let her ramble. I just like to be next to her. I know everyone says she's not my mom anymore; that the person she once was is gone. And I'm not in denial about it. Yet, sometimes it gives me comfort to just lie beside her and hug her. Sometimes she will push me away, other times she will laugh at me, and many times she will simply ignore my affections altogether. Today, while I was laying beside her, my sweet daughter came into the room and mimicked what I was doing. She laid down next to grandma and gave her a big hug, saying,

"I love you grandma."

For the next little while, we sat beside my mom, giving her hugs and listening to her ramble; Aubrey repeating her "I love you's."

There are many times when I feel like I am messing up on this whole parenting thing. But moments like these, when I see the love my children have developed for their grandma, despite their lack of knowing the "real" grandma, warms my heart and gives me encouragement. I'd give anything to have my mom back; since that isn't going to happen, I continue to look for the opportunities to teach my kids of love, service and compassion. I can't think of a better way to spend our Mondays!

From Daughter to Mom

One of the hardest things about dealing with this disease is coming to terms with the role reversal which it brings. As my mom's abilities become less and less, we have to step in to do more and more for her. With every forced clothing change or face and hand wash after lunch or assistance in the bathroom, I feel like I am ripping her dignity away from her; especially when she tells me,

"I'm your mom, you should support me."

Deep down I know that I am doing the right thing and taking care of her the best that I can. Still, I feel as if I am disrespecting- and in some instances violating-my mom. I can only imagine how my dad must feel.

Today was probably the toughest in this aspect that I've faced in a while. It wasn't just one thing that I had to play mom for today. It was several. It started when I first arrived to her house. Dad had warned me that mom's make-up has gotten dramatically worse over the past few days. I didn't think that was possible but sure enough, mom had globs of make up on her face when I walked in her room. I can assume that she poured a bottle of foundation in her hands and then smeared it all on her face, without rubbing any of it in. It was wet and runny and gloppy. I got some toilet paper and wiped her face in sections, with her swatting my hand away in between each section. I had to wait until she was distracted with brushing her hair to quickly rub some more of the residue off her face.

Mom's been so antsy lately to get out of the house. Unfortunately, she doesn't get out often because she is difficult for a lot of her caregivers to manage. I don't mind taking her out; I usually feel like I can handle it (although it's getting harder and harder when I have my 4 year old sidekick in tow). I knew mom wanted to go to her sister's, so I told her that I would take her. She really wanted to get exercise and I kept repeating to her that she could walk up to the top of the street and then get in my car. The instant that front door was unlocked, mom plowed through the door and sprinted up the street. I quickly got my son and myself in the car and followed after her (thankfully she used the sidewalk this time). By the time she got to the top of the street, her sprint had turned into a shuffle and she was panting quite hard. I urged her to get in the car and she did.

When she was ready to leave her sister's house, she was insistent again on walking. My Aunt lives on a busy street and I am not comfortable with mom walking to the end of the street alone as she tends to walk in the middle of the street now. My Uncle helped me block the door so that I could get a good hold on her arm before she darted out the door. I practically had to drag my mom to the door (she was trying to drag me to the street) and my Uncle and I finally got her in the front seat, buckling her seat and closing the door. But mom is mischevious. As soon as I began walking around the car to get to my side of the car, she unbuckled her seat and darted out the door. My Uncle caught her and I decided it would be safer to put her in the back seat with the child lock on. I tried to get her seatbelt on, but she kept taking it off. Unfortunately, we drove the mile home without her seatbelt fastened, but the child locks prevented her from getting out (she reminded me, also, to lock the windows!!) I forgot to mention that in the process of getting her into the car, she spilled her opened can of root beer (which she keeps in her purse) ALL over my car. Ugh.

Once we were at home and mom went back to her room, I tried to get her to change her pants. She had root beer and jelly all over pants but of course didn't understand the need to change clothes. I knew she'd make a big mess everywhere she went, and especially on her bed, with her pants in that condition so I tried to take control of the situation and change her pants. That meant pulling down her pants and physically fighting her to get them off. This is where I feel as if I'm violating my mom. Sometimes I just don't know if I'm doing the right thing when I have to be forceful with her, especially when it violates her privacy. As I was trying to change her, I made a strange discovery. Mom had on no underwear beneath her pants. I'm not sure how she missed that step in getting dressed, but poor mom forgot to put them on (I have no idea if this is a first or not). Furthermore, I discovered that both her undershirt and her bra were on backwards. I have to admit I chuckled a little bit at that one; sometimes I don't know whether to laugh or cry so to keep my sanity I try to find the humor. After being pushed and kicked at, I lost the battle with changing mom's clothes. She's a lot bigger than me nowadays and while I am pretty good at restraining her from running into the street, I am no match against her at clothes changing time. Thankfully, my dad came home around noon in between appointments and was able to change her. It really amazes me how he is able to just get in and get the job done.

I'm not sharing any of this to embarrass my dear mom; it's not really her I'm writing about. It is the disease. Still, I debated if I should post about this or not (particularly the underwear issue); there are a lot of things that I opt not to write about because it feels too personal. I do feel a little bit of guilt for exposing some other personal situations. But I want people to understand the real challenges of this disease. Dementia isn't only losing memories; it's losing all abilities. It's so much worse than portrayed in movies like "The Notebook". It's an ugly, horrible disease that rips away all dignity.

I have readers who have written to me and shared that my blog has helped them to know what to expect from their loved one who is stage(s) behind my mom; I write this for them as well. It's not easy to see what lies ahead, but knowledge is power and preparations (mentally and physically) help a lot in the management of disease.

And I suppose I also needed to share some of my thoughts for my own therapy. I try to be optimistic and find humor when I can. Overall I'd like to think I'm pretty good at keeping positive and being strong. But today left me feeling really down for some reason and I felt like I needed to write to get some of these feelings off my chest. There are days when I feel like I'm not ready to lose my mom (physically) quite yet, and other days where I wish that she could leave this earth before the rest of her dignity is completely gone. I hate what this disease has done to her. Dementia is a beast.