Friday, October 2, 2015

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.

Friday, September 18, 2015

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 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?

Tuesday, September 1, 2015

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.

Monday, August 24, 2015

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!)

Monday, August 17, 2015

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.

Wednesday, July 29, 2015

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:

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.

Friday, July 24, 2015

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!