On Mom's weekend episode...

In my previous blog I described an episode mom went through this past weekend.  I know what brought it on...it was something simple, yet something I understand.

On Saturday afternoon, my sister was planning a birthday party for my niece and her friends; she was turning 13 so no more themed birthday parties with cousins and family - she's grown out of that.  My sister called me last minute and invited my mom and I over to see my niece on this big day and it made me extremely happy!  I wanted to see her smiling, laughing and having a good time with her friends, but didn't plan on staying long, just wanted to drop off her birthday card and give her a hug.  After I got off the phone with my sister, I turned to mom and said come on mom, let's go!

She was confused - go where she asked.  To Cari's house (my sister).  It's your grand daughter's birthday, and we need to say happy birthday and take her a gift.  Mom was confused and I rushed her...I pulled her hair into a ponytail, put a cardigan on her, put her shoes on, some body spray and we were out the door.  She asked about 15 questions from my house to the car, and from our car to my sister's and my sis lives in my neighborhood.  She didn't want to get off the car when we arrived and when we entered, there was music, and disco lights plus about 15 teenagers jumping around giggling.  Mom felt confused and I had her sit, gave her some water, and some pizza.  She ended up eating some chocolates while she was there.  We didn't stay long, but this brought on an episode.  I knew in the back darkness of my mind that mom might have trouble adjusting to us getting up and going just like that, but I felt it would be worth it to see my niece celebrating her birthday and thought mom would have fun, and realize that this was a good thing.  Unfortunately, I was wrong...this triggered something in her brain.

Mom does not know she is having "episodes" because her reality is her reality.  When we got home, she had a slew of questions for me. Asking why I took her, and where we were - she asked why did I leave and a lot of other concerns.  It was evening by that time and she wouldn't let up.  I tried calming her, but nothing worked - I started making dinner and I gave her her meds. Mom started pacing with wild energy, but wouldn't sit or lay down, so I let her do what she had to do.  She was gathering things, piling things in her room, moving things around the house and looking through her old folders.  Needless to say, she didn't go to bed until after midnight on Saturday and woke up during the middle of the night twice, and unfortunately was up at 7am on Sunday and was in the same strange mood, this time thinking she was at work. (As mentioned prior, I wrote about her episode in my previous blog topic). I was mentally and physically exhauted

There is no magic thing I can do to assist mom when she's having an "episode"  because it's her reality. Imagine getting up early in the morning, taking a shower, putting on makeup, grabbing your things to go out the door and your husband, daughter, etc...is telling you that you can't leave, but you believe that you have a 9-5 Mon-Fri job. It's your reality and they aren't letting you leave. You wonder why aren't they letting you go, so you come up with reasons as to why you think they aren't letting you leave: you ask what day it is maybe, you think something is wrong and start being suspicious asking yourself why they aren't letting you leave so the you become more paranoid about the situation and instead of calming down, it gets worse.   This is how a dementia patient feels when they are having an episode. Just make sure they are safe and not hurting themselves...go along with it as much as you can without being drastic about it. I will sit with mom and massage her shoulders, and do breathing exercises with some of her favorite music.  Sometimes an episode will last a few minutes, sometimes an hour and sometimes an entire day or longer.  

Monday morning mom woke up fine - her provider came over, showered her, fed her, did her laundry, mopped the floors, played games with her, and did stretches with her.  I got to relax and for that I feel grateful.  Sometimes our days vary and sometimes we have to take the good with the bad and use all our days as opportunities to tell the people we love that we appreciate them.  Sometimes we just need to stop and breathe.  I don't like taking life for granted and don't regret making the choice going to see my niece on her birthday.  We can't miss important life engagements because mom might or might not experience an episode, thing is we need to learn from our mistakes and try to figure out what works and what doesn't.  Because Dementia can be so unpredictable, it's difficult knowing,  take precaution, but above all else don't sacrifice living life...ever.

Bad days are what they are

Mom at work

We all have good days and bad days.  Your bad days might consist of running late for work, having a flat tire or forgetting to pay the water bill.  I've been there, been through worst too, as I'm sure a lot of you have as well.

A dementia patient has good and bad days, but their bad days differ from yours and mine.  As a caregiver, I experience all of my mother's bad days with her.  She is not aware she is having a bad day, but I am (as is my son and husband). Today is a bad day with mom and it actually started yesterday evening, but it has carried on to today.

Mom woke up peacefully as usual, but I never quite know if it's going to be a good or bad day based on her getting up to start the day.

I feel anxiety, I am not myself when mom is having a bad day because she clings to me, and I can't just leave her alone. I feel tired with a heavy heart when mom's days are bad because it means that my days are bad.  I did breathing exercises with mom to calm her, I massaged her shoulders, arms and legs with body lotion, but she's having a bad day so it doesn't help.  To her, it's just her reality and is neither good or bad.  I sit with her and ask her a series of questions, she answers them all, but not correctly.  Mom's voice isn't very clear, it's always muffled and she speaks so softly, it actually irritates me because I have trouble hearing her and need her to constantly repeat what she's saying, or get my ear directly up to her face in order to hear and understand what she's saying.  It's incoherent, but I still listen.  It makes no logical sense, but I still react to her.  I breathe a lot - I stop and close my eyes a lot.  I pray a lot.

Today she thinks she's in her old office working, she even found an old box full of various supplies like staplers and highlighters and pulled it out.  She has tried several times to "run errands" for the office, she also was looking for her purse to pay for lunch.  Mom's having a bad day and it's non-stop.  She told my husband she was at "Dewey Young's Office" today (her most recent job she held for over 20 years) she told me she was at sp{ Witzit, Ralston and Stiff, her first office job many many years ago  - I was about 8 years old.  She's sitting right beside me this moment asking me questions and I stop to answer them all.

Right now mom is carrying her purse around along with a book and her glasses and fidgeting with them. She's also hearing things.  It's a bad day, but she will go in and out of it.

The other day I received a private message from someone I know who regularly reads my blog, and whom I'm friends with on facebook.  I was a little protrude by the message, this person explained how they felt envious of my life and even used the word envious.  I don't understand how anyone can be envious of anyone's life and how can someone be envious of a person caring for their sick mother 24 hours a day, envious of me...my mother has dementia and I'm her caregiver.  This makes me sad and concerns me.  What kind of life does this person lead and do they know a single thing about what I go through?  I make the most of the troubled times because my troubled days are someones good days and I feel blessings every day, even on the bad days because I see life as a blessing and this gives me happiness.  In my blog I report the good and bad, the happy and sad, the reality of what we're going through whatever it may be.

This is my reality and the good will always outweigh the bad, and the prayers will always overcome any obstacles that come our way.  I'm a realist and the reality is that my mom needs caring for; it's that simple.  Don't be envious of anyone - that's a very negative trait.  Find your own happiness, your own strength and do something for yourself.

This is a part of life, caring for others and I will never ever be envious of anyone who does not act as their parent's, grandparent's, spouse' or child's caregiver - I will instead pray that they never have to.  Although rewarding, it's also quite a struggle living with a loved one who is being robbed of themselves.

Blessings.

A poem

Untitled by: Evana Vleck

Image by artist Salvador Dali

A time where everyday is an old memory forgotten,
A time where the young girl talks about picking cotton...
The days were hot she says, fingers bleed.

A night nourished by the twinkling stars with her sister,
Laughing, pointing their tiny digits to the sky, she can't resist her...as the cool breeze tangles their curly hair into a whirl-wind of infinite memories, time stops.

Yesterday was a time that didn't last.  Today was a day that passed by too fast. tick tick tick, and her hands tremble.

tick
tick...
tick

and her head turns to dust, wiped away to live another decade in salty sea-breeze and her father's musk.

There's a difference between Dementia and Alzheimer's:

Please help spread awareness!

September is Alzheimer's and Dementia Awareness Month so I decided to share something I learned this past weekend about these 2 types of "memory loss" diseases. (I placed that in quotations because it's much more than that).   I do a lot of reading in my spare time because I want to be prepared and knowledgeable on the types of things my mother is going through on a day to day, sometimes even hour to hour, minute to minute, second to second basis.  I'm serious; one second my mother will know where she is, the very next she might have forgotten.  This disease is that powerful.  As you read this, please put yourself in the place of someone who suffers with this chronic disease.  I read anything from pamphlets given to me by friends and doctors, books that are recommended to me, websites that I come across, personal blogs, etc.  There is a world of information out there readily available for anyone wishing to learn more about Dementia and Alzheimer's and with that said, I personally welcome any and all information from those willing to share with me.  

As long as my mother has been living with me (for about 3 years now), I've heard these two things grouped together: Dementia and Alzheimer's.  Well, when I ask people about the differences between the 2, they don't ever have a clear explanation, I'm talking about doctor's as well.  One doctor told me that Dementia was not a specific disease. It's an umbrella term that explains a wide range of symptoms.  

I've never quite understood what that meant until recently when I was doing some online research on the subject of "The differences between Alzheimer's and Dementia).  The first thing I noticed is when on my phone, I'd try to type out "Alzheimers" but it would constantly correct it to "Alzheimer's" with an apostrophe.  I just learned that this is because Alzheimer's belongs to a specific group that is Dementia.  Alzheimer's is a TYPE of Dementia.  My mother suffers from VASCULAR Dementia, so there are different types of Dementia (which I did know) however did not know that Alzheimer's fell under that same "umbrella".  What is Dementia To see what Dementia is CLICK HERE . 

What is the difference between Alzheimer's and Dementia To better understand the difference between Alzheimer's and Dementia CLICK HERE .

There is no better way to recognize Alzheimer's and Dementia Month by learning more about the disease and spreading awareness, I hope this was helpful to you as it was for me.  Thank you for your readership and support - please comment, and or continue to share my blog with others, in doing so you are helping spread awareness!

Sharing your story

I have been fortunate enough to have people reach out to me and share their personal stories of their parents/grandparents struggles with Dementia and Alzheimer's (which is a type of dementia...my mother has Vascular Dementia, I will cover the explanation in tomorrow's blog). A lot of these people are people I've never met, but some are people I know and their stories are so sad because some of these people have acted as caregivers and expressed the loneliness and hardships of caring for a loved one over a period of time, one person even expressed that while caring for her grandmother, she was being judged and ridiculed by her own family!  

I'd hate to think that anyone could even begin to think they could fight this battle alone...it takes an army of support, and as much people are out there willing to support you, there are some out there who actually wish the worst for you...I don't get that sick mentality, but stay strong. Don't let anyone's opinion shake you. Keep going. No one knows your struggles; it's ok to openly talk about them because somewhere out there, someone is listening. We might be born into this world alone, and leave it alone, but we don't have to live it alone. This goes for all struggles.

People have different ways of coping with pain, as a caregiver to my mother I've learned to cope with pain by becoming knowledgeable on the disease which she suffers from,  Vascular Dementia CLICK HERE to know more about the disease.  

Reaching out has also helped me know and realize that I was and am not alone on this journey.  Statistics show that there are approximately 5.4 billion people living in the US with Alzheimer's Disease and that 87% of those people live at home or with family members and almost 15 million American's are unpaid caregivers, I fall under that category, I am a statistic, but I am not alone!

When I receive a message or an email from someone sharing their stories with me, I can't help but to cry because I know it took a lot of courage for them to reach out and share their story with me.  The important this is knowing we are not alone, and talking about our struggles is a tool for survival.  Thank you to those of you who regularly read and share my blog, also thanks to the new visitors and especially those who have shared your stories with me, because just like you...I just want to understand this disease and get through another day with a smile on my face.