Wednesday, October 29, 2014

Changing Mom

Right around the time my baby turned 3, pajama time became a nightmare. He became very obstinate about changing from his clothes into his pj's. There were some nights where I had to hold him down, straddling my legs around his while sitting him down on my lap, as I attempted to undress and redress with pajamas. By the time we had made the switch I was breathless and my heart was racing from the intense work out. You get the picture.

Now, picture this scenario with a grown adult. One of the struggles we have with my mom is that she doesn't change her clothes very often. Everyday, she puts on the same clothes as the day before. On occasion (maybe once a week),she will trade one outfit for another and throw her worn clothes into the laundry pile. You will notice in the pictures I post that most outfits look the same.

A few weeks ago, while I was over at mom's, she smelled very...fragrant. Foundation stained the neck of her blouse and when I leaned in closer to mom, I could smell that her clothes desperately needed to be wash. The tricky part was getting her to change. She doesn't comprehend anything I try to say to her, so I knew explaining that wasn't worth the effort. And there was no way I could change her by myself. Besides that, it feels like a violation to have to undress my grown up mom against her will. Still, something needed to be done.

Lucky for me, dad ended up coming home late that morning. We discussed the showering/clothes changing situation and I noted that mom's clothes really stunk. I'm sure it's not easy for my dad to have to take charge of mom, but he does really well at it. While I'm still nervous sometimes to go in and do things against her will, he just goes in and does it whether she likes it or not. I think she kind of looks at him like her father figure in some ways; she listens to him a little better. However...she was not understanding the concept of changing her clothes.

"Deana, we need to wash your clothes, they stink," dad said, a countless number of times. When mom was unresponsive to dad's prodding, dad sat beside her and started to take her shirt off.

"No, stop it, don't do that," mom said with a little smirk on her face. She glanced at me from the corner of her eyes with a mischevious maybe she thought dad was trying to get frisky with her. Ha ha.

"No no, you can't do that, she can't see me," she remarked.

Despite mom's protests, dad successfully got mom's shirt off and then started to work on her jeans. Mom became even more stubborn.

"No, no!" she said, struggling but also still smirking.

"Deana, stand up," dad said, trying to get mom to stand to make it easier to slip off her pants. Of course, mom wouldn't budge. I figured I was going to have to step in and help dad.

"Here mom, stand up," I said. Together we pulled her off of the bed and held her in a standing position.

"No no, you shouldn't be doing that, no," mom continued.

"We need to change your clothes, mom," I said.

I held her up while dad scooted her jeans down past her hips. Mom quickly dropped herself down on the bed and I began to take off her shoes.

"No no, why are you doing that, stop it. Stop it!" Mom said, breaking out into a giggle while she swat at my hand. She laid down on the bed, eyeing us both suspiciously and giggling with protest. My dad and I started chuckling; as adamant as mom was that we leave her alone, her giggling and smirking made our chore a little more bearable.

We were able to successfully pull off mom's clothing and dad immediately took a load of her laundry into the washer, handing her a clean pair of clothes to put on. Needless to say, it is much easier to catch those dirty clothes at night when she takes them off then it is to struggle with her to change once she's already dressed! She still isn't happy when her clothes disappear into the washer (she lays them out right next to her bed so she can see them in the morning), but we do what we gotta do!

My son is 3 1/2 now and lucky for me, his phase didn't last too long. I'm happy to report that he's pretty easygoing these days about changing into his jammies. Unfortunately for my mom, the struggle has just begun.

Wednesday, October 22, 2014

UCLA Study: Reversing Alzheimer's

Here I am, your crazy health lady, here to share another important message with you!! A friend sent this link to me this morning and I have to admit, it made my morning. Partly because of this big "breakthrough" for treating/preventing Alzheimer's and related dementias, and partly because it proves I'm not crazy afterall...not totally, anyway ;)

Apparently, UCLA has been doing some studies and found that you can actually reverse memory issues (including Alzheimer's and related dementias) through-get this-diet and lifestyle!! There is still a lot of research and trials to be done, but they have documented success through studies with real people. This doesn't come as a huge surprise to me because I've read several other accounts of this. But I think for some people it helps to read it from an accredited university or medical research program rather than "some" doctor who had success and wrote a book.

I can't, in good conscience, NOT share this information with my readers. Make of it what you want. Personally, if I were experiencing memory loss or brain fog (which I have been through!!) or know someone who is dealing with this, I would definitely take it seriously and pass it on. You never know unless you try!


Friday, October 17, 2014

Let's Clear The Air

As expected, I received a little bit of backlash from my post yesterday. Though I expected it from this person, I feel a little disheartened by the criticism; but I have to remind myself that I began writing this blog for two reasons: 1. To share and express the journey we're on and write down the things that I feel which are difficult to verbalize and 2. To try to help other people on their journey as well. Some things are harder to open up and write about than others, but I feel like I am cheating my readers if I don't share it all. Who knows what post might affect whom.

Let me clear up some misunderstandings about my last post.

1. I am NOT declaring that homeopaths are or will be curing my mom. Do I think those things can help? Yes, and that is because of my own, personal experience with it. Do I think they are going to bring her back from dementia? No.

2. I am NOT declaring that it is solely the homeopaths that have improved mom's speech, or anything else for that matter. It has certainly occurred to me that taking her off of the meds she was on has helped to improve her speech. I simply stated the facts: we weaned her off her meds, supplemented with homeopaths, and saw very slight improvements in certain areas. Most other areas remain the same and have shown no improvement; I was only sharing what several of us have seen and trying to have some shred of optimism in this crappy hand we've been dealt.

3. This blog is about my mom but it is also about our journey, including mine. I feel that everything I share on here correlates to my mom and her dementia. There are certain events that have influenced the way I think and feel or evoked some sort of emotion that I share in a given post. There are things that I am learning along the way and I feel like that's okay to share. If you don't agree with my way of thinking, that's okay. I'm not declaring that I am a doctor or that I have all the answers. I am sharing our journey and each person can decide for themselves their takeaway from reading my blog.

4. I've been accused of turning my blog about dementia into a blog about my crazy health theories; aren't the two (health and dementia) related? I share my health experiences simply to send the message that lifestyle CAN play a factor in overall health, even dementia. I made some lifestyle changes and I've seen an improvement in my health, including focus/memory issues I was having!! I am not making any declarations of what has definitively brought about mom's changes; I'm just sharing my personal affirmation of how these things have helped me and my own personal belief of how it can help my mom, or rather, someone who is not as advanced in the disease as my mom. I can't tell you how many studies I've read that have found connections with lifestyle and dementia. If you don't believe it to be true, that's fine. And if my blog is intended to help other people, then why would I not want to share some of the knowledge I've acquired and try to prevent this disease from affecting more people? I don't claim to have the answers; I just want to share what I've learned so that maybe, just maybe, someone else can prevent it from happening. Does anybody really have the right answer?? If they did, we'd have a cure!

I apologize if any of my readers have felt misled or interpreted my post to mean that mom is on the mend; that is not the case. We all know what the outcome of this dreaded disease is.

With all of that to say, I hope you all will continue reading. Unless, of course, you are losing sleep at night over the things I post. In that case, I won't be offended to part ways ;)

Thursday, October 16, 2014

The Tiniest Victory

I used to think homeopathy was for a bunch of hippies. In my mind, medicine was the answer to ailments. If natural remedies worked, then why did our ancestors die of so many sicknesses? (On the other hand, I don't think our ancestors had many of the chronic illnesses we now see in our society). Since my mom's diagnosis, I've had a few friends approach me with the idea of using a naturopath doctor to help mom with some of her troubles. While I appreciated the gesture and concern, I admit that I kind of rolled my eyes. No way could a naturopath doctor help my mom in any way when the big wigs over at UCLA couldn't even figure it out!

I've mentioned briefly on a previous post that I was diagnosed last year with an autoimmune disease, called Hashimotos. It wasn't until I faced my own health issues that I began to understand that there are, in fact, natural ways to help your body to heal. This wasn't a conclusion I came upon quickly or easily; it was a long process...a process where in desperation I finally began to take my health matters into my own hands instead of fully depending on doctors to make me better. Through a lot of hard work which has included changing my diet and other lifestyle factors, I have been feeling so much improvement in my overall well being; I feel as though I've gained my life back.

Now, I'm not knocking medicine-let me make that clear. There is most certainly a time and place for medication. I am on medication for my thyroid and I know that my body needs that right now, but I do believe that medication is over used in today's society and medication alone is not the answer; it is only one piece of the puzzle. After nearly a year of no success with medication, that is when I researched and tried other methods to heal myself. One of the action steps I took, after many frustrating and unsuccessful visits to the doctor, was that I consulted a naturopath to help me. There's way too much information to relay on here, but the short part of the story is that the naturopath, along with lifestyle and diet changes have really improved my health. So much that my thyroid levels have finally stabilized and my enlarged thyroid has actually shrunk in the past 6 months!!

With all of the research and things I've learned over the past 6+ months, I really feel like there is so much more to mom's dementia. It's not just a genetic defect but I (personally) believe there are a number of factors that have contributed to it. I'm not an expert, I'm not a doctor. Maybe I'm way off base. But based on everything I've learned, I do think a "perfect storm" is what brought on mom's dementia. Certainly a genetic factor is present. Perhaps her heart condition and surgery played a role in it as well (which I most definitely believe). I do, however, think that certain diet and lifestyle changes could have helped her had we known more in the beginning. They say hindsight is 20/20. I know some people think I'm kooky for my theories; but then again, I've been doing the research. does my autoimmune issues relate to mom's dementia? I'm getting there. :)

My dad has been wanting to get my mom off her meds for a long time. They didn't seem to be doing her any good and if anything, they were harming her liver and causing even more side effects that have to be treated with yet another pill. I brought the idea of a naturopath to the table and dad was on board to try anything. I admit that deep down I was kind of hoping for some sort of magic cure, even though I knew better than to believe in that. Still, at the very least, we both felt that doing this might be able to eliminate the hard core meds that mom was taking.

Over the past two months, dad (working with both mom's doctor as well as the naturopath) has been decreasing mom's dosages of medicine and replacing them with homeopathic remedies. Mom is now officially off all of her pain meds, sleep meds, etc and guess what? Mom is NOT complaining of aches and pains. Mom has been sleeping better and has more energy (which may or may not be a good thing, ha ha). Most notably, though, is that mom's speech has improved. While I was with her on a Monday a few weeks ago, I was thinking that she seemed to be speaking a little more clearly. Not sure if it was just my imagination, I didn't say anything about it. Later that evening my sister remarked,

"Is it just me, or is mom's speech improving? It seems like I've been able to understand her a little better today."

This past weekend, my brother's family came out for a visit from Arizona. Before they left, my sister-in-law said,

"I've noticed that your mom's speech is a little better...I was able to understand a lot more of what she's saying. And Joe actually had somewhat of a conversation with her yesterday."

With so many setbacks and defeats with this disease, I feel like we've had just a tiny victory. It's too bad we didn't know to try some of these things before her dementia escalated to the point where it's at. But...I think that through it all, we are all learning and paving the way for ourselves to live a healthier life. Some things are out of our control, it's true. We don't know what the future will bring for any of us and who knows when (or if) a cure will ever be found. What we can do is educate ourselves now, be aware of symptoms and try to prevent from the get go with the proper lifestyle interventions. I know this post could undergo some scrutiny, but this is our journey, and this is my take away.

Tuesday, October 14, 2014

Walk To End Alzheimer's 2014

This past weekend was the annual Walk To End Alzheimer's in our area. It is our 3rd year participating as Team Dee. I was really looking forward to this year, as it was the first year that all 3 of us kids participated together in the walk. All the grandkids were present (except for the ones away at school) and for me, walking together in this cause helped me to feel the love and unity for my mom. Maybe it seems brother isn't quite so sentimental. But I feel like it was a great show of support to join in this together. I'm so glad that everyone could make it together.

We also had one of mom's siblings there this year which was awesome. Our group is growing each year!

This is the first year that Maurina (my oldest daughter) wasn't able to attend. We missed her being there but I mailed her a shirt and she wore it proudly on the day of the walk! She was with us in spirit :)

My dad, Aunt and I were returning champions and we wore our medals with pride.

My friend, Mickelle, joined our team last year and returned again this year. She graduated high school with my sister; they were freshmen when I was a senior. All of 3 of us sang in our high school's madrigals choir. Anyway, the 3 of us were given the opportunity to sing The National Anthem at the opening ceremonies of the walk. It was an honor to be able to sing and fun to get up and perform again. I can't figure out how to post it here on my blog...maybe I'll post it on my facebook page for those who really want to see it ;) Here are some pictures though.

Of course our team won the award for the Most Spirited Team at the walk. Was there any question? Ha ha.

And here are a few more fun pictures.

I just want to say thank you to everyone who has supported us this year. Thank you to all of Team Dee for making it so much fun. My Aunt Peggy, Aunt Sharon and Uncle David, who have joined me all 3 years as well as my sister-in-law Amber and her family. This year my Aunt Claudia and her husband came as well as my mother-in-law. And of course Mickelle and her mom, Rosemarie, and my siblings. And thank you to everyone who donated to this cause that is so near and dear to our hearts. What a great show of support we have each year!

Thursday, October 9, 2014

Happy Birthday To Me

This past Tuesday was my birthday. I suspected that my mom wouldn't remember the date. Unfortunately, my suspicions were right on.

Apparently, mom walked dad up to the Dollar Tree over the weekend to buy some birthday cards for people she thought she had missed (she stocked up on cards at the beginning of the year). I was one of those people, although she seems to have no clue when my birthday even is! While I was over there on Monday, she asked me to show her what day it was on the calendar. I pointed to October 6th and said (in my preschool teacher voice),

"Today is Monday, October 6th. Tomorrow is Tuesday, October 7th. Do you know what special day tomorrow is?"

Despite several promptings, mom couldn't tell me what was so special about the following day. I knew better than to be hurt; I was fully expecting it. On Tuesday, dad tried to tell her it was my and my twin's birthday with no response from mom. The concept, like most others, is gone. My birthday came and went and while it was a wonderful day and I was spoiled by friends, family and my wonderful hubby, my mom had forgotten about the first child she welcomed into the world. Such is life with dementia.

Not to leave you totally depressed, here's a picture to show you that I really did have a nice day. Of course I will always miss my mom, and it's my first birthday without her. I'm really thankful for all the people who took the time to make it special for me. It was a great distraction ;)

I was reminisicing and trying to remember my birthday last year. I remember suspecting it could be the last that I'd have mom aware it was my day. I found this post about my last birthday with mom. What a difference a year makes!

Friday, October 3, 2014

New Caregivers...Take Two!

The past couple of weeks have been somewhat of a whirlwind. Quite frankly, I'm a bit tired and ready for the weekend!! We started out last week with mom's sudden spurt of energy, and she hasn't calmed down much since. Because of our worries about mom getting out of the house, we've had to make sure someone is there with her all the time, which has presented some difficulty for us because up until now we felt like mom was okay by herself in the afternoons (her feet were usually only happy in the morning). We only had caregivers lined up for the mornings and even then, my Aunt and Uncle were on vacation which left their time slot uncovered. We decided to take the opportunity, while they were out of town, to try out a new caregiver during his time slot (more about that in a minute). After last Monday, it became apparent that we were going to need a lot more help than we had lined up. Fortunately, between friends from church, family, my sister and myself we've been able to keep an eye on mom the entire day. It's been a lot of work, but we made it through and we finally have a game plan from here on out!

I told you that we tried out a new caregiver while my Uncle was out. I had put in several calls over the past month for potential caregivers and finally found someone who was available when we needed her. Unfortunately, that arrangement didn't work out after all. When I initially called this caregiver, I thought she understood that I was looking for a permanent caregiver. She agreed to come and was fine with the days/hours, but after day two it came out (in a round-about sort of way) that she really wasn't looking for anything permanent (though she is willing to come when we're in a pinch and need an extra hand). So....after I made up an entirely new caregiving schedule, I crumpled up my sheet and went back to the drawing board. We met with a couple of potentials, worked out all the kinks and several headaches later I FINALLY have a weekly schedule that covers mom throughout the entire day while dad is away at work. We are still using some family and friends as volunteers (bless you all!!) but have hired 2 caregivers to come in part time to start taking on some of the load. It's a breath of fresh air to know that we have people lined up now for those days when family/friends might have other plans and we need a sub. As mom's disease progresses, as our volunteers become burned out, and as budget allows, we can start to replace more of the volunteer time with the caregiver time.

It's been an adventure! I am so thankful for all the friends and family who have helped us in all of this and who have been patient while I work out all the kinks in the schedule.