A Shared Memory.

"I see a towel in a mirror and myself running through a house of windows"  My mother says.

I can't decipher these words, they are random and said in a soft whisper.  I encourage mom to speak louder and asked her to repeat what she said.  She can't.  I ask mom if she had a dream, or was she experiencing pieces of memories.

A lot of times, mom can't complete a memory, just as she can't complete a sentence.  Mom often has trouble searching for words and order.  Few times can she coherently express herself, other times it's almost mumble.

When a dementia patient is sleeping more than usual, it's because their brain function is working hard and their brains are trying hard to comprehend things, trying to make sense of things, trying to complete sentences and place thoughts/memories together. Their brains get exhausted, constantly "trying" yet never completing even a mere sentence. Mom is tired - she needs sleep.

Mom has something on her mind that she wants to share with me, and I'm standing there as if I'm playing a game of context clues. In her choppy sentences, and mis-tensed words, I find myself understanding mom.  Today mom shared a memory with me, it wasn't a happy memory, but a memory none-the-less, and although it's common for Dementia patients to remember people, places, and or events pre-diagnosis, it's not often that mom shares them with me, so I have to dig a little.  I want to know if mom was ever hurt by someone and so I question her and pry.  Mom is open with me, and doesn't want to sit - so we stand in her bedroom, face face conversing an old memory, when told started in the cotton fields...

I need to know mom's past to know if what she is experiencing now foreshadows past experiences. I want to help mom if in case she has ever gone through emotional trauma, but picking her brain is like picking a scab.

The light is on, but...

A lot of people ask me what Dementia is, and I usually quote pieces of text-book definitions, but I also try to explain what it's like from my perspective.  I find myself describing what mom is going through using this comparison: Imagine turning on a light switch, and the bulb is constantly flickering.  It's on, dull, bright at times...muted.  Well, that's the best way I can describe what mom's brain is experiencing.  It's not a beautiful thing, it's not illuminating...it's cloudy and blurred. If I have patience I can strain my eyes and focus and see the tenderness in her...the brightness, but mostly she's humdrum.

I try not to make her disease affect my liveliness because I want to be a strong, caring nucleus for my family, but because she's my mother her pain and confusion is often put on me because I am no longer my mother's daughter...mom now looks to me as a mother-figure or parent; she seeks my permission and approval for some things. I can't leave mom alone, I need a sitter and I don't have a sitter.  I can't always, and to be honest don't always want to take mom along with me to run errands, or to go shopping, or to pick something up, because a small outing becomes a cluster-fuck for mom, and I'm not over exaggerating.  During an outing mom can forget where she is, can forget who I am and wonder where we're going and wonder where "I'm taking her" then a fun time, or just a simple time becomes a mind fuck for me. Not to mention mom has trouble walking, and getting in/out of vehicles.  Mom has arthritis in her feet and also has "Runners Feet" so walking has to be limited.  If I take mom somewhere with me, it is pre-planned.  There is no just getting up and going, it's a process.

That's enough for tonight, I have a lot on my mind and instead of continuing to write, I'm going to do some yoga.

Night All.

EV

How's my mom? Just Google Dementia...

There's a "meme" floating around facebook that says something like "Cancer patients only have one wish and that's to kick cancer's butt"  <--- I can't stress how much I hate that meme.  It's insinuating that anything I wish for is inferior to what a cancer patient might wish.  First off, a wish is a fictitious thing that only exist in fairy tales, Second, my mother who's suffering through Dementia can't even comprehend what a wish is and wouldn't know how to begin to make a wish to "kick Dementia's butt, however any wish for my mother would have to be a wish made by me", Third, there is no "kicking Dementia's butt" because there is absolutely no cure.

I have had family die from Cancer, I understand the pain it also brings, but my point is this: No one talks about the pain that Dementia and Alzheimer's brings; it's a silent disease, it's a scary disease that people don't understand.  Your mind along with your body and all its functions are rapidly deteriorating to ultimately reach death. A person with Dementia is not going "crazy" because there is not enough brain function to cast them as "crazy".  A person with dementia struggles to complete a sentence and  never quite does, a person with dementia one day trusts you and the next, sees you as the enemy.
A person with Dementia needs to be told when to shower, change clothes, brush their teeth, eat their meals, and or needs all of these things done for them.  Ultimately a person with Dementia may (and often do) forgets how to use a fork, forgets how to chew, forgets how to properly use the bathroom.  I hate talking about these things because it hurts and scares me.  I don't think this if fitting conversation.  Nothing about a Dementia patient is fitting conversation because it's depressing seeing and knowing that a family member, my own mom is going through these things! Yet when someone asks "how's your mom" wtf am I supposed to say?
 Do you really truly care to know how my mom is...then shut up and  Google Dementia because I don't think you really want to hear this at a grocery store, while you're eating birthday cake at a party, or via text. You don't want to know because it's too awkward for you and in my opinion is one of the shittiest, rudest questions to ask me, or any caregiver because you are forcing me to talk about a very sensitive matter in a public situation surrounded by people I may or may not even know. You ask how my mom is, I just give you my go-to answer: She's ok, every day is a different day".  Don't get me wrong, I don't mind explaining to people what Dementia is, but you have to realize, although my life revolves around my mother's well-being, doesn't mean that it's always a good topic of conversation for me to just jump into at any point just because you asked me.

Of course I'm not referring to everyone when I say this, I do have a couple of very close friends who I share things with  and well, my brothers and sister too, but I want the fair-weathered friend to stfu if they see me in public. I'm not trying to be rude here, but you have to see the awkwardness in this situation and you have to realize that if I'm actually out of my house in public, it's a break for me being away from my duties as a caregiver and maybe I don't want to discuss this with you.

What's mine is yours...

Here's mom on a good day! Peace!

Moving mom in was an easy decision; I mentioned it to my husband and we talked it over, within hours my mother was moved into our home and a part of my family.  Mom left my dad about 20 years ago and got remarried, her husband left her and so she was living alone at the time; mom had just lost her job and was being sued through a local business she ventured into so needless to say, her life was turned upside down which lead to the deep depression and anxiety.  I had never seen mom depressed or anyone with anxiety levels that high; we all talked about how she just needed time to heal and come out of depression, but deep down inside (as I previously mentioned in another blog post) I knew my mother had dementia.

Mom felt unwelcome in my home for about a 6 months, it was so f&*#ing frustrating to me because we did all we could to make her comfortable, we had just turned our extra room into an entertainment room, but rearranged things to make it mom's room now that she had moved in. Mom would continually ask my permission to do things...Can I put more clothes in my closet, can I use the bathroom, is it ok if I get water?  Yes yes and yes!!! Finally, my husband and I sat down with her and told her that she was a part of our family now.  Our house is your home; what's mine is yours.

My husband  and son have been life-savers through this entire process;  they are a big help and very respectful towards mom and her condition. When new people come over to visit, including my son's friends we have to inform them on mom's condition.  "Sometimes mom will just approach you and say something out of the blue", "Sometimes mom might look at you as if you're the enemy because she doesn't know who you are or why you are here", "Mom has a disease, she's sick and her mind is affected"  We say all those things and more.  They are all true, but there are times where I don't want to get into full detail because people aren't familiar with this disease and as much as it scares them, it hurts me just as much.

 What I don't tell them is "Mom is thinking you are here to take her away, Mom is looking at you like that because she thinks you want to kill her, Mom can't answer back because her mind is deteriorating and right now her brain is trying to put a million pieces to a puzzle together, and is searching for words that make sense...sometimes they don't, so it will come out as babble".   Those things are also true.

We always want mom to feel comfortable as if this is her own home and thankfully it's gotten to that, but she has her days!

Like I told mom...what's mine is yours, but not until recently have I also realized that what's hers is also mine.  I've inherited her struggles and her lack of being able to start, and or finish daily tasks.  I've inherited her anxiety in some situations, and the grief.  As a healthy person sound in mind and body, I've looked for ways to separate those things from my life to view them as responsibilities instead of anxieties.  It's a work in progress and again...stressing how much support I have from my husband and son makes me an all together happy person trying to do good in this world by participating in life's inevitable cycle by embracing the challenges that lie ahead.

There is no hurrying...

One day I remember getting mom dressed and making her breakfast.  I told mom to hurry up and eat so we can go to Target.  One thing you need to know about living with a Dementia patient is that there is no hurrying up.  Everything is a process.  Dressing mom, feeding mom, getting her to brush her teeth, turning on the water for her shower, cutting her food, fixing her hair.  Everything you'd do for a baby, be prepared to do for a Dementia patient.  Different stages require different care, but just know that there is no such thing as "hurry up".  The more I rush mom, the more confused she gets, even to the point of forgetting where she's at. I know that if I plan on going somewhere and taking mom with me, I better give myself 2 hours to prepare her. I want her to feel as safe and comfortable as possible when we leave the house, so preparing her and talking to her about what we will be doing is something I've learned to do before heading out otherwise, it will be an even more difficult task answering her questions of confusion, wonderment and sometimes fear.

Like I did when my son was a child, I do for mom.  I pack mom a bag with a snack, a drink, and bring her medication just in case.  I always make sure mom has tissue or a napkin, she likes to hold on  to something like a child sometimes holds a blanket or stuffed animal.  She needs security.

Patience is a big thing for caregivers, I can't express this enough; I'm faced with daily dilemmas and circumstances where breathing exercises and understanding are much needed; caring for mom has blessed me with patience...it's the most difficult task to master. I applaud those who utilize patience in their jobs and lives day to day.  It's not god-given...it's a choice when made needs to be practiced and may never meet perfection.

Mom has Vascular Dementia?

When I first found out mom had Dementia I didn't cry.  I wasn't worried, I wasn't in dismay...I just kept going to work and taking care of my family.  I treated mom as if she was a room mate living in my house.  I made up chores to keep her busy, she helped me prepare dinner and she was my shopping buddy.  It wasn't until I opened my eyes that  I realized that mom was a danger to herself.  Some days I'd come home for my lunch hour the stove would be on, or the kitchen faucet would be running with mom asleep in her room.

I didn't know what to think, mom was still young!  Months before she moved in with me she was biking miles and running races; she was physically active, fit, lived on her own, cooked her own meals, had friends and managed her own finances.

Little did I realize that mom's responsibilities would eventually turn into my responsibilities.  Little by little her ability to pay bills, or do anything at all just dwindled.  Mom could no longer cook a meal, she couldn't do a load of laundry or write a letter and mail it out if she needed. Mom carried a blankness in her eyes and a causticness in her soul; I was worried for her.

As her oldest daughter I felt the need to find her help.  With no help available, I had make a decision to leave my job and act as her caregiver so knowing there was no other option, I resigned from a job that I both needed and wanted.  I said goodbye to a salary, to years of hard work and independence.

After realizing I was leaving my job to care for my mother full-time, reality set in along with the tears, but never on anyone's shoulder; it was a lonely cry, a bitter coldness; I felt alone. I cried behind closed doors, at my desk, in my car; I constantly cried when I was alone, it was my only comfort;  I cried when someone asked me why I was leaving my job, or what was wrong with my mother.  I tried not to cry, but at this point it was uncontrollable, especially knowing that there is no cure for dementia.

It's been 7 months since I've left my job, and there has been a lot of changes from day 1 to now.  Doctors had mom on several medications and dealing with the side effects was a scary thing!  Delusions are not fun, I describe them as day terrors.  I thought these imaginary happenings and people mom was dealing with and experiencing were all a part of the mental deterioration of her disease, but after researching the meds, it turned out to be side effects and since then has been under control for the most part. Thank god!

I said good bye to a lot of things, and day to day am realizing just how much I've said goodbye to. In the big picture it's all been worth it although I still cry on some days, but sadly not realizing why I'm crying.  Am I crying because my mother is completely dependent on me, am I crying because mom has limited time and I'm dreading the last stages of her disease, and I crying out of fear, and loneliness?  I don't know, but there are some moments when crying is my only gateway to a clear mind so I just let myself. Shedding a few tears is worth the quality of life she has been given by my family.  Where would I be without them?

Smile Momma!  I love you!

Is anybody out there...

from L to R: Mom, Me, Sis and my brother's daughter (my niece)

Hello anyone out there.  If you're reading this, you'd probably like to know a little bit about me.  My name is Evana and I'm from deep South Texas. I'm in my 30's and I have a wonderful family.  I live about 30 miles from the Mexican border, so my city is what you'd call a melting pot of customs, cuisine, people and cultures.  Although near the border of Mexico, my region's claim for fame is citrus and our Rio Grande River, but the coolest thing about where I'm from is our invention of the Botana! A botana is a platter of fried corn tortilla chips piled high with re-fried beans, cheese, fajitas, guacamole and other delicious items (sort of like nachos).   I live in one of the most obese areas in the United States, and this is probably why!  Most of the food down here is deep fried loaded with sodium, although known for citrus, it's slowly dying off and attention has been placed on fast food chains, corporate restaurants and little attention on healthy food, parks and sidewalks.

Aside from this blog, I also manage a facebook page  titled "Life with Mom" My Life with Mom Facebook page  that I started just a few months ago.  I thought it was a good idea to journal some of my experiences as a caregiver and help create awareness for the disease and that is the main point of my blog; caring for my mother with Dementia.  About 3 years ago, my mother went through severe depression and I moved her in with me in fear that she was not eating and taking care of herself.  During that time, I was working a full time job as an Arts Coordinator for the City. After a year of living with me, doctor's diagnosed her with Vascular Dementia and I decided to resign to stay home and help  mom. Most people when they hear "Dementia" they think that it's a disease in which the patient "forgets".  Although that is true, it's only a very small piece of the disease in its entirety.  It's one of the saddest, darkest things I've ever experienced.

First, in my own words I will tell you what Vascular Dementia is: a series of mini-strokes detected from the brain, causing an anurism which leads to a blood clot that ultimately resulted in lack of oxygen causing damage to the brain. 

You can read more about VD here: Click Here to read more on Vascular Dementia. My mother's mother had Dementia, so when I moved my mother in with me, I had a feeling that she was suffering from early stages of the disease, sure enough I was right.  My mother was 64 when she was first diagnosed; she's now 66 and slowly deteriorating both physically and mentally.  My mother although the same person on the inside, is a different person. She still knows me and my family by name, but has problems remembering her other children that she doesn't see as often.  Mom went from running marathons to having trouble getting out of bed on her own.  There are good and bad days, so it's hard to sum up the past few years in a paragraph, especially since I'd rather deal with her condition day to day and not think of it as long term.

In this blog, I'd like to touch on how it is dealing with the disease from my point of view,plus also examine exercise, diet, and other things.  Vascular Dementia is a silent disease that people don't talk about; it's hard having a close family member suffering and living with the disease as it changes. Taking them out becomes a difficult task so planning daily activities to do at home is a must!   Most caregivers think they are alone, and on some levels, they truly are unless they speak out; I don't want to be alone.

.