Normal?

Momma witch - Halloween 2014

What is normal? I don't know...what IS normal; I can't really say, but I miss being it. Or maybe I miss that feeling of thinking I was semi-normal, or maybe miss the feeling of living a semi-normal life, although I don't know what normal really is.  Whatever normal might be to you, or me, all I can say is that I miss it.

I've never in my life have strived to be normal, or to be like anyone else, and I still don't, but I do? I know, I know...I probably don't make sense to you, but to me it makes perfect sense.

Maybe normal to me, is having a sense of freedom - I miss it so much. I miss hanging out with friends, going out, going to art shows, going to concerts, weddings, parties, gatherings, bbq's, and I especially miss the time spent with my husband and son together as a family, doing family things, having outings and celebratory dinners like birthdays! Sad...I miss it all. I admit, I miss social gatherings.

My life for the past 2 years has been pretty vacant, and my social calendar has diminished...my date life...what is that? My normal life, my life to what I saw as normal has slowly diminished.

This weekend (was) (is) Halloween weekend, and no, I didn't do anything fancy, or go to any special party, but I made the most of it. I'm having a great weekend, I feel normal. I laughed, I smiled...I felt a little freedom, I felt like a grown up for a little while, I felt pretty, and I felt loved.

I had friends, and family over, just a small gathering on Halloween night, and I felt genuinely happy because I felt safe and comforted. We carved pumpkins, popped popcorn and just enjoyed each others company....that made me feel normal.

Today, I went to visit a friend and her daughter at a festival, I ate junk food, painted my face and did some shopping...I saw some friends I hadn't seen in years! And it made me feel normal. What is normal? Normal,is a safe, comfortable place that people with insanely "normal" lives take for granted. People live normal lives, they live safe lives....taking no chances.

Right when I got home, I went to my mother's room to take her to the restroom...my mother had peed on herself, and was having trouble passing fecal matter...I had to wipe my mother's privates, I did. Afterwards I made her a snack and gave her a piece of candy I bought from the festival. She was happy. My normal day had come to a stop.

I am not normal. I take risks. I take chances. I took the biggest risk of my life, I quit my job 2 years ago to care for my mother who has had Dementia for the past 4 years. I took a chance on my life, on my family...I took this chance and I am winning this battle, although my mother is declining - I am helping improve her quality of life...I'm doing this on my own with the help of my husband who has made sacrifice after sacrifice, with the help of my son who has done the same thing - made sacrifices.  Sacrificed normality, the feeling of safeness...this is a difficult thing.  I am eternally grateful to them.

Normal is overrated. Normal will always be there...I think I'm better off this way, but it's nice to visit once in a while.

Things get tough

When I change mom, I squat down quite a bit, I also do this when I take her to the restroom- it's hard on my back...I do this 6-8 times a day, but because of yoga, my body has become stronger, but as I'm pulling mom's underwear up, and sitting her down so I can put her socks on, she bends over with her arms wide open to hug me, so I stand up and let her hug me, and I hug her back. I laugh and say...why are you hugging me, and she keeps hugging me, then says "God Bless You" so I say thanks mom, you too - then she stops hugging me and asks "oh, where is God" and I laugh, and say well, I think he's in your heart and she tells me, I guess I believe that. (but in a very slow, quiet shaky voice I have to strain to hear).


So mom has been suffering worse with her incontinence and although I take her to a restroom break every hour. Today, just 30 min after she used the restroom, she peed on herself.  Not only did mom pee on herself, but she took her pants off to pee on the floor in her room.  I actually slipped on the urine as I went into her room to help her - thank god for the swifter wet wipes....I am literally stocked up on them because you never know when an accident can occur!  Lucky for me, our provider does all the cleaning in our home, so I manage to find the energy to clean up after mom's accidents, although it can get very old and very annoying. I have my good days, I have my bad days just like everyone else.
I've been dodging the fact that mom needs to wearing a protective pad, or adult diaper throughout the day, but I think it's so uncomfortable that I'm trying to avoid it as much as I can. Because mom has been peeing more often, I put a pad on her at 5 pm, but still take her to restroom breaks, using this as a backup, and it has worked.

Ok, so aside from that, I've been reading a lot more lately on caregivers and those who care for their  parents.  I've come to know and realize that through statistics, over 80% of caregivers do it alone,  meaning they get no relief from other family members except for maybe the occasional 2 hours a month if they (we) are lucky.  Lucky for me, with my own hard work and research, I qualified for a provider who has been with us a little over a year - I am so grateful to her, she really comes through when I need her, and sometimes swaps hours when I (we have something to do).  I work with her schedule, and she works with mine. Funny how a stranger can turn into someone you value and count on daily.

So it's been 4 years since mom has lived with us here at home, and it's been almost 2 years since I've quit my job to stay home with mom full time to care for her.  A lot, and I mean A LOT has changed in those 4 years. If you could walk in my shoes and see things through my eyes - living with my mom, living with this disease day to day, hour to hour, not trying to count the minutes, but taking it 1 day at a time just to survive the strain it places on the caregiver (me) and my family.  I'm amazed at how resilient we have become, and amazed that it has worked as long as it has - no one  has fallen apart, and this is because of the tremendous support I receive on a daily basis from my husband.  He helps talk me through moments where I want to give up - or moments where I'm crying and not knowing why. I can't imagine doing any of this on my own without him.


Things get tough, things get emotional and life waits for no one. Mom still has life left in her - so she deserves whatever I have left to give when I can.

Tired

There's a never ending price that comes with taking care of a parent with Dementia. I was sick for 4 days with high fever, swelling, headaches and I'm mentally/physically exhausted. I'm angry, and I'm hurt, and I want to give up because I'm doing this alone and I have so much resent that's coming to the surface. I've realized that you can count on NO ONE and that NO ONE will ever be there for you.

I'm tired. Nothing more to say.

A feeding tube?

Got 300 hits on my blog since last night, thanks for that. I try to be upfront and honest, and not take my readers on a bullshit roller-coaster ride and I hope you can appreciate my honesty.

I swear there is never a dull day in my life, although there are days that I wish were filled with nothing because I need days off too. People don't seem to realize that what I do is far beyond a full time job, this is someone's life, health, and well being on the line,that someone being my mom. The scope of all this is very real.

Mom had all the nurses laughing at her doctors appointment today. I took her in for an eye infection, but ended up getting several other tests done so an hour appointment turned into a 3-hour venture and my back is killing me from standing practically the entire time because mom wouldn't sit still, or while the nurses and doctor were giving her exams, etc it was me who'd dress/undress, shoes on/off, hold her still...all that. All those things you do with your 20 pound child including taking them to the RR and checking her diaper, giving her snacks, etc...I get to to with my 100 pound mother and it isn't easy.

So aside from my exhaustion, mom had the nurses laughing. She asked the main nurse if she even had a diploma, and said she didn't know what she was doing...she said some pretty off the wall stuff, but mom was tired and frustrated as well because she had no idea what was going on, at least we had a laugh.

During our visit, the doctor suggested I take a depression test, she said I didn't look like myself, and looked worn down. I told her that I was and she took some time to sit and talk to me about what I go through as mom's primary caregiver. I was a little shocked, had no idea that I was physically portraying on the outside what I've been feeling on the inside, I guess with her expertise it was easy to detect. :(

I also had a conversation with the doctor about mom, her weight, her eating and how far she's declined. The doctor said she will eventually need to be on a feeding tube, maybe sooner than later, and hearing this reality this caused a lot of anger, pain, fear inside of me.

I'm afraid. No one seems to realize how fast she's declining, and how serious it is, and how hard it is for me, for us...just how hard it is. No one gives a fuck and that's not ok anymore.

People are selfish and I'm disgusted by it.

Life goes on

It's been a while since I've had an update. I temporarily closed my main fb account because I needed a break from all of the fake happiness posts, and drama that people enjoy getting into although they say otherwise, lol...so annoying, not to mention all the cry baby crap and complaining...I can't believe people get so bent out of shape over a stupid broken phone, or lost keys...it's laughable, and I feel sorry for people like that, they seem soulless to me.  Anyway, my Life with Mom fb page is still open and I try to update as much as I can without coming across as being depressed, or bitter.

Yes, everything I post is through my perspective and through my personal experience spent with my mom as her primary caregiver, my husband is her secondary caregiver and NO we DON'T get paid for this, are you fucking kidding me?! I can't believe how ignorant some people are, caregivers don't get paid...so ridiculous.
So yes, some of my posts might seem as if I'm depressed because I don't sugar coat situations, I do however hold back on ALOT of what I go through as a wife and mother, and even as a daughter, it's sad, but real...very real, and I try to share as much as I humanly can without putting all of me out there on a platform but you see, I have to learn from this situation, this is a life experience and if I don't learn from it, or educate others in the process, I feel uninspired and as if I'm letting mom down, and when I'm uninspired, I just might break.
I don't know, it's hard to explain. I do the best that I can with what and who I have. My hubby is my best support, he's quite amazing.  His support has been a true testament to our 20 years of marriage. No one knows what we go through as parents, and as a married couple, or as a family; it takes a toll. It hurts deep when you have no one to turn to, or count on for any type of support, so when I mention my husband, I mention him with the utmost respect because it's MY mom, yet he helps and sacrifices so so so so so so much and more and he is the one I turn to, and depend on..

I just need to say that if you've never taken care of a sick elderly parent who can do anything for themselves, and who depend on you for food, water, showers, sitting, standing, eating, changing, grooming, lavatory assistance,  and more including nursing them when sick and taking them to doctor's appointments all 7 days a week and you still have room in your heart to judge that person who does all of those things, I feel very sorry for you.   I don't know how people can be so silly and ignorant, I don't know how highly judgmental people even function in our world, I mean...worry about yourself, judgmental people are weak, insecure people and I want nothing to do with them, (and neither should you); I need all the positivity I can get, because I am surrounded by my mom's sickness and inabilities 24/7 - it dulls me on the inside and hardens me, it doesn't make me soft, or weak, it turns me tougher...but there's a piece of me that won't ever give in to the toughness, a small piece that wears so thin, and that's afraid and that often feels lost and alone, but those are my emotions, no one will ever get me on that level...This is the hardest thing I've ever had to do. No more to say, until next time.  Life goes on, I guess.

Today

Picked green peppers from our back yard and made a veggie omelette for breakfast. Summer is almost coming to an end, looking forward to the fall, but I'll miss Robert as he goes back to teaching, and Moses as he's back to his full time schedule with work and school.

After breakfast, hubby and I went to see a 3D movie at the Bistro, it was good...I laughed a lot, and we shared some nachos. It was fun.

Moses spent the entire morning, and afternoon trying to renew his lost license, this should be a lesson the be extra careful when it comes to these things; he was at the dmv for 4 hours, but had to leave to be at work on time so he will have to go back on Monday.  It's part of growing up I guess.

Made mom a sandwich and some cucumber juice for lunch while Robert spent time with the dogs.  After mom finished her lunch, she took a nap and I laid down to do some reading by the window in my bedroom. It's been hot lately in the 100's, but the day light is perfect for reading. I can't read by artificial light, I've tried and it's too distracting, gives me headaches. Robert will often find me reading in the dark, a dim lamp is ok, but overhead light messes with me.

Mom got up from an hour nap and was hungry again, I gave her some homemade yogurt with honey and we did a little yoga; she complained as usual. Yoga and exercises are getting harder for her, she has pretty bad balance, is snarky, and has trouble moving around in general.

Some good friends gave us some gift certificates to some restaurants so we all had take out from Santa Fe Steakhouse for dinner; they have the best calamari and I opened a bottle of champagne, we finished that and sat down to watch a movie. Mom was not in the best mood so I was dealing with her confusion, she wouldn't stop asking us the same questions and started pacing so we turned off the movie while I took a walk with her, helped her in the restroom then put her in bed to watch tv for an hour, before I put her diaper on her then falls asleep.

I hope mom stays in bed tonight;  I'm pretty tired myself. The rest of our evening will be spent sitting by the pool then a movie in bed if all is well, but you never know.  Goodnight friends.

What I did on Mother's Day

I know it's been a while since I've posted a blog update, but did I ever tell you what I did on Mother's Day?

Well, my mother was very constipated and couldn't use the RR.  She was pushing and pushing and complaining about the pain and I felt horrible because there was nothing I could do to help her, I massaged her intestines while she sat on the toilet, and gave her water and prune juice from a straw.  My mother was on the toilet for over an hour that morning.

She pushed more, and fortunately  "it" started coming out, but still was VERY difficult for her so I went to the kitchen and put on plastic gloves, got a trash bag and some wipes.  I actually pulled feces hard as a rock out of my mother's rectum using my hands covered in gloves.  I did gag a few times, because it didn't come out easily...I had to prod several times and it was a horrible smell since it was "backed up fecal matter", at the end of the endeavor I had to shower and make myself vomit.

Since then, it's happened a few more times.  I got her some suppositories so it makes it a bit easier, but my mother is unable to communicate with me clearly so I have no idea when she is constipated until it happens and she's on the toilet.

Yesterday I went through the same thing with her because by the time I knew she was constipated, she was already on the toilet with feces half way out of her so couldn't place the suppository inside of her.

Mom moves a lot slower than what she used to and is not active. She gets her 2 walks a week and her stretches 3 times a week and drinks water daily as well as eats prunes and fibrous foods...it's not what she's eating, not eating, or doing that causes her to be constipated...it's that her body has slowed down significantly.

People with cognitive impairment have an increased risk of constipation, fecal impaction, and stercoral perforation. Immobility, a decreased awareness of thirst, and difficulty in communicating pain and discomfort can all contribute.

A lot on my mind, yet nothing at all

Hello,
Just stopping in for a quick update.  Just because I'm not writing or updating doesn't mean there's nothing going on.  There is always something going on - we are constant; we don't stop even while asleep.  Our minds are always working, our hearts are always feeling and our souls are always searching, at least it is from my perspective.

Just like our bodies and minds are constant, so is mom. Mom is constant; she might not be predictable, but she's always going, even when it appears that she isn't, mom is going through different cycles and changes and can never quite adapt to a "normal" schedule and if she can't adapt to a schedule, that means I can't either, so needless to say - I'm ever-changing.

Here's the thing with me...I expect the unexpected.  I expect the most outlandish circumstances and behavior patterns when it comes to mom so I'm never all that surprised.  I'm very adaptable - I'm like a chameleon, interchangeable.  It's not chaotic, it's subtle. As much change mom goes through, she's also subtle and she's the least dramatic person I know.  Mom doesn't cause scenes, mom doesn't speak out of place, mom doesn't interrupt, mom doesn't get involved when it doesn't involve her; mom is quiet.  Mom is a simple person, mom has never been into jewels, name brand bags, shoes, cars, etc.  Mom lived a simple life and did what she enjoyed and kept to herself except when she didn't.

Mom's personality is sheltered, quiet.  I was never close to my mom, and I don't feel I've learned much from my mom at this point in my life - maybe I have, but can't see it; I don't know.  I think not knowing mom so well has me making up for lost time by taking care of mom and learning from her, not from her as a person, but from her situation.  Not being close to my mom growing up hasn't stopped me from caring and loving her - it has actually made me curious to the type of person mom was.  I never really knew my mom.  I can say things that mom liked.  Mom used to love Captain and Tenile, Linda Ronstandt, Dolly Pardon, she loved Olivia Newton John, mom loved fairy tales, mom love poems and rhyme, mom loved The Wizard of Oz, mom loved Gone with the Wind and mom loved Jane Fonda - because of Jane Fonda, my mom grew to love aerobics and exercise then later running - she loved it with a passion, she even started running races and getting 1st in her age division time and time again - she built walls of trophies.  Mom ran marathons - mom participated in triathalons.  Mom did all these things, but not with me and not for me.  Mom did these things for herself; they were her escape and I respect that, but unfortunately I can't relate.

In mom's situation right now, I can see some things in mom I never did...I see weakness, fear, I see mom become annoyed, I see her anger, her pain...I see her sadness.   I see all these seemingly "weak" traits, but have to tell myself that this isn't mom - it's her disorder, her dementia.  Sometimes it's hard to distinguish because I never really truly knew mom.  Maybe we never really do know one another - we only know how that person can make up feel, and know what we see.

Here is a good thing: I see a funny side to mom.  I see mom's sense of humor and I can joke with her because I know she enjoys laughing.  Sometimes she can't figure out when I'm joking because of her condition, but the times when she's able to are fun times.  Mom also has an extended vocabulary.  She enjoys using her words which is a little sad to me, because she is constantly searching for words and they sometimes don't make it out of her.

All of this said and done - I have to say that this journey has been an interesting, soul searching

This is the life of a Caregiver

I recently applied for extra provider hours through the Star Plus Waiver services program from Superior.  I was interviewed and asked a list of questions.  I became very emotional during the interview and broke down and cried.  I felt overwhelmed and realized everything that I do for my mom from the list of questions I was asked.

I cook for mom and feed her every day.  I change mom every day (maybe more than once if she has an accident).  I help mom in and out of her bed every day (several times a day).  I take out moms chair and push her in to eat - then help her out of her chair every day (several times a day). I often cut moms food for her.  If mom watches t.v. - I turn the t.v. on for mom. I brush moms hair every day.  I try my best to do things with mom when I'm not feeling tired, overwhelmed or depressed - it's hard.  I stopped doing things for myself like exercise and eating healthy because I'm busy getting mom to exercise and eat healthy and then get too depressed to love myself.  If my son catches me crying - I pretend I have something in my eye or tell him my allergies are bothering me.  I don't want him to see me crying.

Sometimes mom doesn't want to eat - she fights me with it.  Sometimes mom doesn't want to take her meds - she fights me with it.  Sometimes mom doesn't want to shower, change or exercise - she fights me with it.
Without a provider I shower mom, with a provider I STILL SHOWER MOM. I take mom on walks, I take mom for coffee and once a month, I take mom to have lunch or dinner at a restaurant.

I read to mom.  I schedule all of mom's medical appointments, I take mom to all of her medical appointments (monthly - she has 2, sometimes more).  I drop off moms prescription and pick it up at the pharmacy.  I give mom her meds.  I read about mom's illness and I give her natural remedies such as tumeric, coconut oil, flax and chia seeds, fish oil and vitamin D...I go to the health store to buy them and I give them to her.  If mom needs new undergarments or clothes - I go and buy them for her.

If mom has an episode - it's ME who sits with her and calms her down, if mom can't sleep...I can't sleep because she will not stop knocking on my door.  If mom is scared, it's me who calms her.

These were some (not all) of the questions that the interviewee went over with me.

This is the life of a Caregiver

Providing assistance

Interesting that some people that I know have the huge misconception that I get paid for taking care of my mom. No, I have never received a penny from any agency. When I first made the decision to leave my job I thought about being a paid provider for my mom, but at that time was told I couldn't be. Fortunately  it worked out in my favor because I ended up qualifying for paid caregiver relief to give myself a break, so I chose an agency and they helped hire a provider for my mother who comes Mon-Fri 4 hours a day. (Those are our qualifying hours). The provider is actually there to relieve ME of my usual activities with mom during the time she is there, so this gives me time for myself, but not time with my family because my husband is working and my son is working and in school during those hours, so family time or date nights are rare, but that's ok because were doing a good thing being there for mom.

The paid provider cooks for mom, makes sure she eats and takes her meds, changes mom, showers mom (I shower mom when the provider doesn't show up and on weekends). The provider also does stretches with her, and does her laundry and helps with some housework.  That's what a paid provider does...me, well I'm a caregiver and my time with mom is 24/7. This morning mom woke up at 6 am because she wet the bed so I had to clean her sheets, mattresses and clean/change her. The other night, mom woke up at 2am and was hungry so I gave her a snack. Last week there was a night where mom didn't even sleep so I laid on the sofa making sure she didn't get hurt.

Having caregiving assistance is great help,  but no amount of help will ever replace the life I used to have with my husband and son before mom got sick 4 years ago.

I don't know what to think sometimes. I'm blessed and happy to be spending time with my mom, but I'm also tired and fight depression almost on a monthly basis. Unfortunetly I sometimes turn to food, then gain weight...then I start eating healthy and exercise. I often skip meals because I don't like preparing or cooking food for just me, and by the time I get mom's lunch ready, and sit her down to eat, I've lost my appetitie.

Some friends have reached out to me and that has helped me take my mind off of things, I also watch movies, listen to music and read books. I should probably do some more walking. I used to take a lot more walks with mom, but she has arthritis in her feet and walks very slow so it's easier to take short walks 1-2 times a week.

I try to keep as busy as possible and recently took up couponing..I've been saving ALOT of money plus keeping myself busy.

I'm lucky to have what I have, and lucky to be where I am and give thanks everyday.

Reality CHECK list

I recently applied for more caregiving hours and special at home hospice care for mom and I. I see mom spiraling deeper into this illness and want to be prepared with as much physical support as I can get that's offered. Reading about Dementia, studying it and trying to look for help and plans available for patients and caregivers is a lot of work.  The other day I got an at home visit with an govt. health provider where I received an interview to apply for extra at home care/treatment.  I was asked about 50-80 questions all dealing with moms health, doctors and the amount of time mom has lived with us.

The interviewer said it was rare for someone my age to be married with a family, she then said it was even rarer that I was caring for my mom in MY home, she said most caregivers sell their homes and move into their parents homes when they are their caregivers.  She commended me, but tbh mom didn't have a home, she had an apartment...she then said well, in those cases the elderly usually end up in homes so I should still be commended.

All that said, I was asked a list of questions that I am always prepared to answer from the meds mom takes, to her income status, to our living arrangements, to how the illness has progressed, etc., but what I wasn't prepared for was the list of check off items that I do for my mother as her caregiver on a daily, hourly and minute to minute basis.  I felt overwhelmed and began crying because it was at that very moment that I realized just exactly how much I do for my mom and for how long of a time I've been doing it for.

I was exhausted just answering the questions and became very emotional knowing that I truly am my mothers caregiver and that I am the one constant in her life.

I do hope I get the extra help which would include provider services 7 days a week for a total of 32 hours...it would also include help in disposables for mom, and nurse visits, plus some therapy.  Please cross your fingers, send good vibes, prayer, etc. for us.

Goodnight.

Don't call me mom

Mom recently spent 4 days with her sis while my husband and I got to enjoy some R&R and much needed time together. My aunt enjoyed having mom there as much as mom enjoyed her company, but she had alot of difficulties.  Mom wouldn't take her Meds,  argued about taking showers and unfortunately she had an episode. My aunt explained how worn out she felt especially since mom didn't sleep one night... been there many times. I feel bad for my aunt,  but she was do understanding and explained that it hit her emotionally,  spiritually and physically. ..yep. Since mom had been home, she had napped, had dinner,  took Meds, watched tv,  had dessert and washed up before bed.

After I put mom to bed, she got up a few more times...the first time she got u.p I gave her some yogurt and fruit for a snack. We sat in her room a little and she laid down again.  mi.mutes later, she came into my room asking where I was. I'm here I told her....walked her to her room and out her in bed again, this time with prayers.  10:45 p.m. She got up again, she was standing in the living room, I took her by the hand and tucked her into bed. Goodnight mom I said...no, good night mommy she told me.

Don't call me mom

Walls hold us inside of this world we're supposed to know as reality.

It's suffocating and dreary.
I'm alone an teary.

Your hands are tiny bony digits that shake and tremble.

I'm a broken doll, never been assembled.

You call me mom, but I'm no figure to the only mother I've ever known

...a daughter to the great unknown.

Thankful Thursday

Today, like most days can be was a little hard on me.  I actually heard my mother say these words: I want to die.

Mom was going through an episode and felt that she was in danger, she thought people wanted to kill her and she then said, "and I want to die".

This hurt me so much - although knowing mom wasn't in a moment of clarity, I still took it seriously and to heart so I sat and talked with her trying to figure out exactly why she was saying these things.

Throughout our conversation I told mom she had Dementia, and read her the definition of the illness and let her know that she was feeling, hearing, seeing and thinking these horrible things because of her illness.  I then told mom to focus on all of her blessings in life and she became a little more calm.  We started naming all of the things in her life that have made her happy then I told her it would be a good idea to do that everyday and to follow the list of happiness by thanking god.  She did.  She said a prayer and thanked god.  I told her thank him some more...over and over again, every day....I told her to keep thanking him.  I don't know, but afterwards mom was wearing a crooked smile and I asked her if she felt better and she said she did - I know it was true.  Thanking god for what we have and who we are, what we were, who we will be is a huge blessing.  We are blessed and we are thankful.

Seth Rogan Testifies about Mother in law's Alzheimer's

I'm happy to know that there are people making a stir about this horrible illness. What Seth Rogan has to say about the illness is very poignant and heartbreaking:

Seth Rogan Testifies about Mother in law's Alzheimer's

I just wish our government cared more about providing help and awareness for the people this illness effects.  Wow...just wow - this is definitely not a priority to our government leaders although More than 5 million Americans are living with the disease. "Alzheimer's disease is the most common cause of dementia, or loss of intellectual function, among people aged 65 and older." Sad. Please read this, you will be surprised!

Seth Rogan blasts Senators for skipping his Testimony in support of Alzheimer's

The Peter Pan syndrome

Mom watching Peter Pan

Today I woke up early to run some errands and do some shopping so I fixed mom an easy breakfast of cereal, banana, yogurt and strawberries along with her meds.  My husband stayed home with mom while I was gone  and when I came back, he told me that my mom had been asking him about information and asked him if he had the information she needed.  He said no, I have none to share and she said ok, well I'll wait for the boss ( she might have been referring to me figuratively) but she could have actually thought that she was in a work setting waiting to get information from the "boss".  I think it was the latter, because when I got there mom approached me and asked me to share the files with the premiums with her...

Now, I've blogged about this before - mom often thinks she's at work and will look for files and ask questions about policies for certain people.  What do I do in situations like this?  I answer her questions, but I also try my best to reassure her that it has been taken care of and not to worry.  This works at times, others not.

When it doesn't work - when mom is not satisfied with my answers, I have to either ignore her and let her continue to pretend and act as if she is in a different place/time, or I can try to find ways to calm her so she's not moving and pacing around so much.  Dementia patients can (and mom in particular) have tremors and bad balance.  Plus mom also has a slight curve in her spine and arthritis in her feet, so when she's pacing back and forth it wears on her yet she doesn't stop until her "episode" as I call it gives out.

Today, I lead mom to the sofa with a lot of pillows to support her back, gave her some water and some fresh fruit...then I put on Peter Pan.  Growing up mom was big on singing us lullaby's nursery rhymes and she used to love cartoon and fantasy characters like Red Riding Hood, Pippi Longstocking, Raggedy Ann and others.  I know children's cartoons and stories have a calming effect on mom (and on me too).  So we sat down together and have been watching Disney movies all afternoon.

There is something about Peter Pan - he makes you feel young and encourages you to be forever young, an eternal child and it's a good feeling.  Watching Peter Pan and watching mom laugh and enjoy the movie has me thinking about her illness and her own syndrome...it has me reflecting.  I am her mother figure now, I play the part of her parent showing her and leading the way, I play the role of helping her and tucking her in at night, saying prayers with her and making her pancakes as a special breakfast. I'm the one to make doctor's and dentist appointments for mom and taking her to them. I play the role is saying a nursery rhyme to mom to see if she remembers them...I am that figure in her life.  She is regressing, not just because of her age, but because of her illness, it's inhibiting, much like the "Peter Pan Syndrome" can be inhibiting and hold you back, except for mom...no psychologist can ever help heal her mind to later live a "normal" life outside the Peter Pan Syndrome.

We might be watching  fun movies right now, but she is still going through her motions on the inside...I know nothing can stop it, it stops on it's own, but I can do my best to try and take her mind off of it.  When the movies are over, she can go back to thinking she's at work, or maybe...her "episode" will have passed.  You just don't know with these things, they take on their own life-force.

For now, we're ok and for now - growing up is not an option.

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

Please visit my community facebook page:

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