Some facts

Alzheimer's is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.

Did you know:  Alzheimer's disease is the sixth leading cause of death in the United States.

Did you know:  More than 5 million Americans are living with the disease.

Did you know: 1 in 3 seniors dies with Alzheimer's or another dementia.

Did you know: In 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion.

Did you know: Nearly 15% of caregivers for people with Alzheimer's or another dementia are long-distance caregivers.

Please watch:

Alzheimer's Facts

For more information please visit:

Alz.org

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Life With Mom on Facebook

Life with Mom

Mom playing Bingo or "Chalupa" with our provider

Here we are. A day in the life.  Here I stand...a view from the side, not involved today...not playing games, but rather observing and just taking the day for me.  I have finally let go.  When our provider is over, I have learned to leave the house, to take a nap...to do things for me, or just go out for coffee and run errands.  I need to practice to stop being such a worried "mom" to MY mom.

But sometimes I don't think I can...

That Place

Thank you for following and staying up to date with my blog, photos, fb page and my posts. A lot of the times when I'm writing my posts, I'm coming from a place a lot of you have probably been, but I honestly believe that I'm more familiar with "that place"  because that place has now molded itself into a piece of who I am today, because in the past 4 years mom has lived with us, "that place" has become something I've coped with and have accepted as a part of me that won't ever leave me. I try going through the days being who I am, but also trying to see mom from the reflection of her illness. I am me, struggling to see what my mother has been robbed of.

I live in that place of rainbows in gloom

Color in specks of gray

I live in that memory far far away

Where she sits, where she lays...in a field of cotton 

Where thoughts are alive and not forgotten.

EV.

What am I to you...

What am I to You?

Each time mom has a scheduled doctor's appointment I get nervous. Doctor visits are not an in and out procedure, sometimes we can be at a clinic for hours...this is hard. If I go out with mom, I make sure to pack her a sweater, water, her meds (just in case), some snacks and some tissue.  For my enjoyment, my phone is good enough, that and maybe some coffee.

When we're at clinics, I look around and all I see are other people...I never see myself. I do not know what I look like, I'm not familiar with who I am and what I'm doing...I don't see myself as a caregiver for my mother...I don't know what I must look like to people, I don't know how I'm perceived.  I know I'm me, but to others, that's simply not enough. Because I look a certain way, I am perceived that same way.

No one believes me when I tell them I have an 18 yo son in college and have been married for 20 yrs and when they ask what I "do" another disbelief...wow...so you don't work? You take care of your mom...how old is she, what's wrong with her?  Wow, you're so young. The questions don't stop and you know, it is rather annoying and you know what...I AM young, I never thought I'd be caring for my mom at this point in my life.

 Anyway,  I find most people annoying rather than sincere. I know the average person doesn't care, they are just being friendly and considerate. That's fine, just shut up though and let me continue to Instagram and Tweet instead of standing in front of you bored to death playing 20 questions on my life that you suddenly have huge interest in. Who am I to you anyway? Just leave me alone.

You see...when my mom became sick and I quit my job to care for her, I remained the same person, just maybe sadder at times, stronger at others...confused, but also more acute and my realist view became more harsh. I became aware of my surroundings and listened to my intuition when it came to people because I had absolutely no time to waste on anything trivial anymore. I quit my job job to care for mom, I moved her in with me and my family...she requires 24/7 looking after and care, so she comes first in our lives.  Wow. My time became precious, it became gold...it IS gold and wasting it would be foolish.  I shut some people out because our relationships were just based on bullshit and some people shut me out because in their feeble minds they did not know how to face me...in their self-absorbed lives I was a stranger. People either felt "sorry" for me, or treated me as if I had the plague.  Good.  I'm glad I was able to see people for who they truly were (are). I no longer have a reason to stomach people's bullshit since I do not answer to anyone and don't represent anyone except myself...no job or job title is conjoining us. I'm me...REALLY me and you are "worldly you".

Funny, but I think I have found myself....I might come across as bitter, but in actuality I'm coming from a very real place and those places can sometimes scare people, I get that, but I also get this: life IS about helping people, it's about helping others and finding out who you are when you're putting others needs before your own needs. You see, my needs are nothing compared to that of  someone who is starving or disabled. My needs are nothing compared to han innocent child's needs who might be in danger. Needs are not being able to "fulfill careers, explore hobbies", etc...Needs are not having the ability to eat, shower, sleep (on your own), and I see that my mothers needs are more important than mine at the moment so the thing to do is to put my "worldly" self on hold and search for my spiritual self and live life according to that.

I thank my true friends and value those I might not be friends with, but have reached out to me on sincere levels of understanding. Please know that I know, this is not the end of life as we know it. I know me taking care of mom isn't a life sentence...but it is a life lesson that some of y'all will NEVER experience, so in that retrospect I'm wiser than you ever will be (well, in some ways) because I have had to find strength in the oddest places, find peace in chaos, find understanding in frivolous things and have had to adjust (with my husband and son) to a budget that most people would argue and bicker over, but instead we've become closer.

It is what it is. At least I truly know the meaning of the word sacrifice...what parents do for their children is not real sacrifice, it's a testament of life, you chose to have children...there should be no option for you as a parent when you have a child...you had them, YOU care for them, you're not a hero, you're a parent. What children do for their parents is truly sacrifice because we have no moral, or societal judgments cast upon us. We live in a society where It's completely normal and acceptable to put our parents in homes or ignore their needs when their lives begin to deteriorate, but society still has standards on parents...you have children, society expects you to raise and care for them yourself. So the true sacrifice in life, or in our society is someone placing their lives and time on hold to care for someone in which society has no regards. So strange. Do I think I'm special? Definitely not...do some regard me in that way...absolutely, but that's them seeing from the outside in and I appreciate that sentiment although don't whole-heartedly agree. I must look like some sort of savior caring for my sick mom, giving up my career and saying goodbye to that annual 40-grand income. It was hard, but the same way society views the responsibility of a parent to a child, I view it vice versa so to me, this is the norm and the norm is a rough and rocky unlit, dark and dreary road surrounded but the more you travel, you see that you're surrounded blue skies, sunshine and inner happiness...it might look scary at first, but it later  transpires into goodness, faith, peace, life, hardship and memories.  I am built of good and bad and that's how I see me - just a girl who cares a whole lot about her family and by a little soul searching seeing life through the eyes of those who are in need...that is how I see me.  How you see me...well, that really doesn't matter, but I know that I took the road less traveled and because of that, I have seen a righteous life of self-acceptance.

All for now. Thx for reading.

Stages...changes. It is what it is.

Keeping a smile

Today I started my morning with bathing mom. She had an accident.

Mom's been having trouble with urinary incontinence these past few weeks.  She has experienced a few accidents, not often, but here and there.  Each time I got up to help her change and clean up, a couple of times it was the middle of the night, other times during a nap.

Each time it has happened, I'm extremely calm and soft spoken with mom and act as if it's not a big deal and something normal so she wouldn't feel embarrassed (she apologizes each time it happens) so I let her know it isn't her fault.

Weird, because it IS normal for someone in her medical state.  Incontinence is something that happens in the latter stages of dementia, however I've scheduled a Doctor's appointment to rule out some factors such as UTI's (Urinary Tract Infections) etc...I happen to think that mom's problem is not being able to reach the bathroom on time because her muscles have weakened and it takes a while for her to get up from her bed, so I decided that we are going to take her mattresses off of the box spring to see if it will make it easier for her to get in and out of bed (I'm sure it will). Hopefully she will have fewer accidents...I really think this is the issue, but we will see.

I've been holding back and haven't really wanted to mention it to people/friends/family the few times they happen to ask about mom, but it's pretty important I share this information with people so they know the reality behind the disease from a caregiver's POV.

Going through this stage with mom is again teaching me about patience and understanding, it's a long road ahead.  I thank God every day for what we have, and ask him for patience, strength and the means to continue supporting our family in the worldly sense.  It isn't easy, but with the love and support of my husband and son, nothing seems impossible.

EV

I thank you...

Thanks to the teachers, bosses and parents who are proud of kindness, respect and dignity.  Thanks to the leaders who encourage happiness and spiritual fulfillment.

Thanks to the people who cherish and understand human adversity, and who are there for you during the bad times as well as good.

Thanks to those who accept and love emotional messes, and to those who empower us to to be honest with ourselves, truthful to the world and not feel guilt or self-loathe when we come across obstacles that would otherwise embarrass us.  Thank you to those humanitarians who care about life above all else and who live by example and who treasure and recognize sacrifice, hard work and growth.

Thank you to the spouses who show love and support to their wives and husbands when things get overbearing in so many ways.  Thank you to the parents, grandparents, spouses and people who have lost anchors in their lives yet still wear a smile; you show true faith; I want that faith...it's contagious.

Thank you for just being you and letting me be me. I might not always be pleasant or "pc" and you might not always agree with me, but still...you let me be without being too judgmental and I thank you for that because I can't help who I am.

Thank you to those who have been honest, who have spoken their mind and disagreed with me and who have put me in my place when needed; we all need to be humbled otherwise what is growth and learning?

Thank you for continued blessings and life lessons.  Thank you for my family and I can't thank you enough for gifting me this amazing role as a parent to my only son; raising him, teaching him, loving and encouraging him has been the most amazing journey for us as a family.  I am grateful and in debt to the world; I'm doing what I can to show how thankful I am, but sometimes it's hard because it's means more when it comes naturally and from the heart, so I hope I am living a life that shows I take little for granted.

Having mom live with us for the past 3 years has taught us a lot and has brought us closer together as a family - we have had our ups and downs and challenging moments, but we have to show that caring for her is our way of saying thank you and is definitely learning experience.

When you deal with a person who's experiencing dementia, you can see where they're struggling with knowledge. You can see what they forget completely, what they forget but they know what they once knew. You can tell how they're trying to remember.
Walter Mosley 

What a difference a Year Makes, Social Media and Me

A Social Media "Selfie"

Hello,

I hope that everyone out there enjoyed the holidays and New Year celebration.  Today is the first day of 2014 and I have a lot to reflect on. A year ago I left my full time job/salary to stay with my mom and care for her (full time) as her dementia was causing her to become more dependent on others.  It was a difficult decision to make for one because we were going to have to learn how to get by with one salary instead of two.  I was making as much money as my husband, so our budget since then has been cut in half and we have gone through our financial ups/downs and still continue to do so.  That being said, none of that has broken us, in fact it has brought us closer together as a husband and wife and as a family in entirety.

Every day I wake up with a roof over my head is a blessing to me and is something I don't take for granted. I can get into specifics about how drastic our lives have changed, but doing so won't ever paint a clear enough picture for those of you who've never left a job to care for a sick parent (or loved one) so I'll spare the details and allow you to utilize your own imagination.

Those of you who keep up with my  blog and face book page are familiar with our hardships.  Our hardships centralize around mom being sick and because there's a domino effect of quitting a full time job and caring for a parent...there are ups and downs, but in my opinion more ups then downs, but probably because of the attitude that I wish to have during all of this.  All of these "hardships" have become lessons and those learned lessons have conditioned my personality and way of thinking in this last year; I have changed along with the adjustments we have made as a family.  My husband, my son...myself, we have all made big sacrifices for her care. My brothers and sisters, mom's sisters - they are all there for us emotionally and more importantly there for mom when she needs them.

I know that family is the most important life force; I know that above all else in this world, my son and husband matter most; I know that not even mom's illness or needs should ever come before those of my own child and the universe has to respect that.  That being said, my son is now an adult, he was 15 years old when my mother first moved in with us and even that had an effect on him, but probably in a way you wouldn't imagine.  He's grown even more compassionate and responsible than I ever thought and has been a big help; my husband and I are aware of this and the most we can give him is our full respect, trust, love and time.                                                                                                                                                      

All of these "hardships" have become a reality that we live day to day and the updates and photos I chose to share on social media are all real.  I'm not trying to appear dismayed, confused or even trying to look happy and blessed.  I am all those things and more because I'm human...I can't "try" because "trying" isn't "doing" and I am doing...not trying.  I am what I am, and I don't fake things or cover them up with stupid fkn rainbows and fake laughter.  If I smile, I'm happy - you can't tell me to smile when I'm having a bad day because there won't be one, I physically can't smile if I am being told to smile, I am happy when I am and if I am smiling in photos, I am happy.  Easy.

I rarely focus on the negative...I'm just not built that way, so a very bad situation to the average person can seem life a breath of air for me because I truly feel that my family and I will be taken care of.  I can't help it; I suppose I have faith and don't realize it.  I do, I have faith...an abundance of faith and I believe that it's the faith that makes me strong and it's my perspective on life that gives me the ability to remain strong with faith. If things aren't going "right"I sort of laugh because there is not one direction a life or a family's life should have to go towards in order to be the "quintessential happy family"or "normal" family. There are no rules of "good, bad, happy, sad, right, wrong, positive, negative" there are many perspectives to those things.  I don't care about society's rules or your rules...I don't care what you think a happy or normal family should or shouldn't be; I don't care what you think I should dress like, speak like, act like because I am happy being who I am and having what I have and making the most of our situation no matter how you see us.

I am broken, I am fixed; I am complex, I am simple.  I am misunderstood, I am empathized with.  I can chose to feel sorry for myself, but instead I feel happy and proud of myself because when I take a look at my family and what we have...what we have built together and worked for I feel gratified; I feel blessed, as if I'm the richest person in the world and nothing can break that.

So to anyone out there who thinks I am painting a one-sided picture of my reality on social media...you must not understand what it's like to be strong or just genuinely happy.                                                                

EV