A break

Blog breaks. I need them. But I also need this blog. This is like an escape for me, I don't know...it's a place where I can be honest.  I need breaks, period.

Sometimes I live in pain. Sometimes I live through pain.
I'm trying to care for myself and my mother, trying to keep myself glued together and still have time for my husband and son.  Changes need to be done soon. I need to get well, and I'm tired. Please don't say think positive, or hang In there, or keep up the good work.  I've done all those things, it's time for me to step away.  I'm slowly detaching myself. Soon, I will give myself 5-day breaks once a month (hopefully) through moms hospice care, they have a respit program in which they will keep mom for 5 days while I take a break. I'll start there, but then I need to start living in the world of reality then begin looking into Nursing Homes.  I can't do this alone anymore, I get no rest, and no help from family so is slowly killing myself (My doctor's words...not mine). I'm trapped in my own home, this is the main problem I think...feeling I can't just leave my own home when I'd like to, or even have to. My family deserves more from me.  I deserve more from me.

I love you so much mom.

Wounded

It's not easy opening up and sharing my experiences with you, but I appreciate your readership through and through. Each day I think about me, my family, my mom and wonder different things. I think of the past, and what has gotten me here, I think of the what ifs, I think of lots of things, always including mom's health, firstly and lately have been trying to detach myself from her.

After moms initial fall, I became so attached to her because I was so worried about her taking another fall, low and behold she did because of a careless mistake from my provider at the time, ugh...it irks the f**k out of me! My mom is bed ridden because of that fall! More complications have occurred because of that fall! She has changed because of that fall! I have changed! I'm trying to rid of this anger I have festering inside me...it's tough, but I have my moments of peacefulness that I try desperately holding on to...I try and try...I  want peace.

Mom is not well, so please stop asking me how mom is...she is not well, I'm trying to be well, strong, happy, and be myself. I don't know...I'm trying to be myself, and I find that at this moment in my life, being myself is the most difficult task ever.

If you break it down I care for my mother around the clock, I change her last diaper at 10 pm, cover her with the 2nd comforter and give her water at 11pm, so after 11pm is time I get to truly take for myself (God willing). I have a provider for just 4 hrs a day, a lot of times I'm home, so I still do things for mom, help change her, visit with the cna's and nurses for updates, calling her insurance, trying to find more help, dealing with her changes, just a lot of stuff. I have mom 20 hrs a day 7 days a week.

The toughest part of the day for me is when I have to change mom and change mom's wound dressing. She has a pressure ulcer that is tunneling on her back side, I dare you to google image it. I have to see this daily, I look at it, and dress it daily...it's horrible, I have dreams of it...I can't get it out of my mind. I want a break from it. I don't want to see mom's wound, please...I dont! I hate seeing it, it hurts me, freightens me and makes me nervous. This is one thing I deal with daily.  Please, I wish I didn't  have to see this.

Other things...feeding mom, I make her juven twice a day, a fresh juice, and either a smoothie, or  prune juice. Aside from this, I feed her twice...I'm always busy with mom, please don't ask how my mom is....she is not good. How am I? I have no idea...I truly don't, I'm alive nursing mom, trying to detach myself, trying to spend time with my family that I so deserve, and they deserve.

The ending stages of this disease is a horrible, scary, sad thing. I don't know, hard to talk about the good it brings. I see my mom day after day, hour after hour deteriorating....I'm by her side, feeding her, changing her, nursing her, and much more...im witnessing it to the minute...I've had years of this. It's never easy. I'm wounded.

another beginning?

Mom and I almost 2 yrs. ago

Sorry I haven't updated my blog in a while, but life happens, and sometimes it pulls me in so deep I have no time to think, let alone think about writing, and well, sometimes writing it all down makes it so official, so real and I start to crumble...

A lot has happened over the course of these past few months. My mother has been experiencing a cognitive decline, but not just that, she has declined in almost every way you can possibly think.

We stopped seeing her doctor because there is no more care that she can receive, her Dementia is at a very fragile state.

In November, my mother took a fall and fractured her left hip. It was a nightmare. She couldn't walk. My mother was in pain, my frail, innocent mother was in a tremendous amount of pain, and this fall caused a domino effect on her health, and well being.  Everything is different, the way she eats, sits, moves, it's all different, but over the course of 4-5 weeks, mom was starting to walk. Starting to heal. A new beginning? I hoped.

My brother was visiting and he ended up staying with me after mom fell, he was a big help as mom couldn't move around on her own...he was a big help in so many ways. I was so grateful, but alas he had to go, and I secretly pray he comes back! The help was wonderful to have, I was on a break because he took over, he made meals, fed mom, fed her, it was awesome.  (Please come back! You were a blessing!) And my life felt sorta normal for a month.

Ok, so a week after my brother left, the worst thing happened...my provider left my mother unattended on the sofa while she was in a different room. My mother apparently got up from the sofa on her own, and took yet another fall, this fall was much worse, it is so painful as she was still healing from her first fall. This fall could have been prevented, she should have never been left alone! I don't know what my provider was thinking, I was furious. Mom was, and still is in a huge amount of pain. Mom fractured her arm. Mom spent 8 days in a hospice following her fall, so we are both exhausted. Mom is home now, it's been a few days, and it's not good because she's in pain, and can't move, she's bed ridden, and now she is having issues with her hip, it's so painful. Mom has to be bathed, changed, and fed in bed...she's bed ridden, and has a pretty bad bed sore on her back side. I feel so bad for mom. No one should be in this amount of pain, I hate seeing mom like this, it's heartbreaking and I've cried everyday. Since mom has been sent back home I've cried in my bedroom, the shower, and in my car, I don't know how to handle this, I pull myself together just to go through it again the next day, it's the worst thing...she's so helpless, and I feel so helpless, yet I know I am strong because I get up every morning to face it, and do it again, and I make sure to shower, and to eat, and to cook dinner for my family...I'm ripped apart, but put together, I'm a million broken pieces glued into one. I'm strong, held together by glue that is my family, and her rare smile that keeps me bound.

There is so much to write about, so much to say, but I can't translate my deep set pain into words. I feel as if I'm hovering myself, looking down, watching us (me and mom, or mom, and I) go through this, it's exhausting, and everything gets me mad, and confused because I'm watching my mother wither, I'm taking an hour to feed her for each meal because mom no longer opens her mouth at will to eat the same way in which she use to, she has been set back. Changing her diaper is a nightmare, but I'm awake and hearing her gasp in pain. My back is breaking, I'm crumbling, but still standing...it's all real. I'm tired she's tired, she's in pain. Please God take my moms pain away!

I know from reading, and from talking to doctors that It's rare that a woman at my age is caring for her mother (at 68 now) who is slowly declining, but really not slowly at all...rapidly. It's all so fast, I live my life on a ff button, it's not a slow process, it's quick, too quick to digest, too quick to set in, one problem occurs and another issue is developing, my mother is in pain.

Mom has lived with me for 4-years. It's all a blur of shared experiences and moments. I'm a changed person.  I don't look at lives, and examine them, I don't judge them, and am not moved by them...I can't help it, I'm shelled up and only feel what mom feels, only care about taking away her pain. Your facebook post matters nothing to me, what you are eating, I can care less about, your Xmas gifts...who cares? Your supposed artistry, your supposed fear, anxiety, helplessness..its a joke to me, it's all fake, a facade...it's not real, none of it, and I'm not sure why. What is real? I only see pain as real...fear and dying as real, living and happiness come with a price.  The only thing that is real to me are the people I love, and facing death, facing pain everyday of my life, dealing with it, and seeing light from a different spectrum, as if I've gone through this before and know what to expect. It's vivid, but blurred. I'm awake, but only see what makes me feel. I am moved, but only by love and pain. I feel pain, but only if it's deep. I'm sorry,  but don't know why. I am in agony as I sit by my mother's bedside with a huge smile on my face.

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.