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Why this blog, why now

I am not here for followers, or fame.  I am writing here to put down my feelings of grief, sadness, hope, and frustrations in my life as a daughter who helps her father take care of my mother who has dementia and cancer.  My life right now is so upside down with fear and emotions that I need to let it go.  Some will have dementia days, some will have cancer days, some will have travel days as my husband and I have our business, and other days may be me just rambling on to figure out my next step in life.

 

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Me Being Raw

I don’t usually do this, be raw.  But, there are a lot of things that have been on my mind and the only way to get it out is to write it.  I guess you can say this is a temporary pity party because I don’t intend to stay in this.  But I am going to warn you, this will probably be a lot longer post than all my other posts.

I am just going to start in the very beginning.  Before mom got sick, before I got married.  I am going to go back to when I was born.  Because this is where my story starts.  I was born Jan. 17, 1981.  I was born with a heart defect that wasn’t realized till I was several months old.  I had a hole between my upper chambers, one between my lower chambers, and the patent ductus didn’t close.  Before they had found the issues, I had multiple bouts of pneumonia, bronchitis, and nearly died a few times.  I was on a respirator for 7 months and in the end it screwed up my lungs.  That long of a time made me have basically rubberized lungs which basically means that my lung capacity is not where most people would have it.  I had open heart surgery around a year old and then my life went from where I would have a normal life, to everything changed because of one selfish doctor. I say this with full hatred.  If you know me, you know I don’t hate anyone.  I may dislike someone, but never hate.  But he is the exception to the rule.  Because of him, my life was forever altered.

When I was in the hospital, I had multiple IV’s and with time, my veins just weren’t cooperating.  So, they had to stick an IV in my right foot.  This doctor ended up taping the tape to tight around my foot and it was not discovered till a week later.  The reason I have a deep hatred for this doctor is because I was his last patient before he went on vacation.  Because he was in a hurry, I ended up having my life single handed changed.  I ended up losing all my toes and part of my heel.   The bones in my foot ended up curving towards the inside of my foot.  The bone loss in my heel made the biggest difference though.  It caused me to have uneven hips (between 1-1.5″ difference between the left and right hip).  This caused my back to naturally shift to the left to make up the difference.

I now have degenerative disc disease and arthritis in my back, arthritis in my hips, issues with knees and ankles.  Now, growing up I really didn’t have issues with anything because I was still young, thin, and able.  The only thing I did have to deal with was finding shoes. I had to get 2 different sizes of shoes. Another thing I now have is plantar faciatis in my left foot because of the extra stress that it endured over the years.

I want to jump back for a moment to the reason beyond the physical issues.  When I was probably 13 or so, my doctor asked me what I wanted to be when I grew up.  I told him I wanted to be a respiratory therapist or something in the medical field.  He told me something I will never forget.  He told me my body was not going to let me.  I didn’t believe him.  I didn’t want to believe him. Then, when I was 17, I lost control of my mom’s car.  I wasn’t hurt bad, but I did have issues with my back and ended up going to a chiropractor and that is when I realized he might be right.  You see, the reason I have a hatred so deep for the doctor that screwed me up, he kept me from following my dreams.  I had always loved the medical field.  Mom was an LVN and I wanted to follow her footsteps.  I grew up looking at medical books she had.

I got married 3 weeks after high school and never went back to college (even though I had a decent scholarship) after graduation.  I didn’t know what I wanted to do.  I still struggled with what I wanted to do when I grew up.  Well, I was grown up and all I knew at that time, I was in love, a newly wed and ready to jump i the next phase of my life.  I had my son at 20 and then ended up moving in with my father-in-law at the age of 23 to take care of him. I didn’t think about going back to school till my son was 6 or so.  I decided that it was time to do something with my life. I figured out that I wanted to get my certification to become a teachers aide.  I got talked into becoming a teacher and I thought, yes, I might as well.  Well, one semester in, I realized I couldn’t do it.  I think it was more in my mind than anything.  I finished out the semester with being on the assistant dean’s list.  That was with taking 4 classes, one being an online only class.

I went on with my life and I decided to try to go back four more times.  Once for a music major because I was still determined to become a teacher.  Pastry chef when my husband was going to culinary school.  I love baking and such and I thought it would be something I could really do. Photography, to actually get trained in it.  But after a lot of research, what you pay in college tuition, you don’t get the return in actual pay and most of it you can learn online. Then, just recently, English major.  Not for teaching, but to explore other options.  Mainly for writing.    But none of these were what I actually wanted.  I wanted to be in the medical field, leaning more towards surgical nurse.  But, because my body won’t hardly let me some days function to do normal house stuff, I can’t physically do what I really wanted.  It has gotten really depressing.

Over the years, trying to keep up with being a wife, a mom, a caregiver has worn on me physically.  The reason I had the surgery on my foot originally was to take away some areas that were left behind.  In simple terms.. when the doctors and nurses cleaned my right foot up when I was a baby, they cleaned up all the dead tissues and left behind was was still viable.  What was left was the first joints where the toes would be. After all was healed, I had bone, skin, and scar tissue.  So when I walked, I was pushing off on skin and bones.  After 36 years, it was getting harder for me to recover from the pain walking for long periods of time.  The surgery took off those joints and padding was added to make it easier for me to walk. A couple of inches was taken off and my tendons and muscles were lengthened in my calf.

Now this is where my “pity party” comes in.  Now that I am walking without a boot, in regular shoes, my feet HURT!!  A lot of it is, I need new shoes (which is in progress).  But even at that, just walking around the house, I have so much more pain.  Its not so much pain in my feet, which is there, its in both my legs.  My balance is different and my whole body is having to relearn how to adjust.  There has been a realization that I have had and I never wanted to have it, especially now.  I am more handicapped than ever before.  My podiatrist gave me a permanent handicapped placard, and told me I should file for disability.  Ok, that is fine.  What isn’t fine is that I am 37 years old and pretty much have decided I need to get a mobility scooter for me.  I am fine most days, but then there are others I can barely get around.  Then that makes me upset that I am holding our family back on having fun.  For instance, the day before yesterday I was subbing and had no issues what so ever.  Yesterday, I could barely get around.  Today has been one of those days that started well and quickly went downhill.  The reason I have so much issue with getting one now, I see what my future is going to hold sooner rather than later.  And it scares the hell out of me.  I always thought I would age gracefully like my mom did.  I am trying, but a scooter doesn’t make me age gracefully.

I look at the people I went to school with and get jealous of them because they are normal.  Now, I know some do have their own issues, but no where near what I do. I look at other moms and wish I could be like them. Get up and go without issues. I want to just for once be like everyone else.  Most people my age don’t need scooters to get around.  I have always stuck out.  My scars, my foot, my religion…. you name it, I stuck out.  Getting a scooter will once again, make me stick out.

I know deep down I need it.  I do not want to hold my family back from going out and having family fun.  Right now, I do good some days just to get a drink.  Tomorrow will probably be one of those days with the weather changing.  I hate that in my mind know I can handle most anything, but my body physically won’t let me.  Its just not fair.  It really isn’t.  Why me?  Why did the doctor have to mess my life up? Why so I have to suffer? They say what doesn’t kill you, makes you stronger, right?  I ought be invincible by now.  My life has been full of trials and tribulations and for once, I just want to be a normal wife and mom.  No pains, no issues, no nothing.

A Harsh Realization

While taking care of mom, and my surgery, I let me go.  I didn’t realize how bad I got till after mom passed and I had some wake up calls.  My face broke out like a teenager, my hair had thinned to about half of its usual thickness, along with other things.  I am fighting to get me back to where I was.  I decided to start at basics.  Vitamins and water.

I became really depressed.  When I get depressed, I don’t eat, or drink.  And when I do, I don’t make the right food choices.  Sodas, chocolate, candy, etc.  But, I had a wake up call when my face broke out.  When I get stressed, I get certain areas that are prone to break out.  I have always been self conscious about my face. Well, not one, not two, but three places came.  So, I started doing some research on things I have been dealing with.  And this is about what I have found between mom telling me, doctors, and good old research.

My hair has always been my identity.  It has always been thick.  I generally cut it in the summer, and then let it go for another year.  But, this time, my thickness wasn’t there.  And it took forever to get where it is now.  I started noticing that my hair was falling out a lot more than usual when I would wash my hair.  I chalked it up to being closer to 40 and body changing.  Then recently I started having issues energy.  I started taking iron again (always been borderline anemic) because I know when I do, my energy goes up and I also don’t eat as much.  I have been taking iron, along with other vitamins which I will get into later, for a few weeks and noticed today that when I washed my hair, for the first time, the amount lost was half of what I have been.  Also when I stumbled on a youtube titled anemia and hair loss, I was intrigued.  Basically what she talked about was when there is so little red blood cells, the last place it will go is the hair follicles.  So, yes, that made perfect sense.  More red blood cells, the less hair falls out.  I am also going to start taking Biotin to help it along.

I also noticed along with the hair loss, my energy was way down.  Now, I am going to go back to a couple of years ago I went to the doctor and told them I was always drained.  Blood test later revealed my vitamin D level was low.  I was told to take a minimum of 1,000 IU.  When I started taking it, I started feeling better.  Then, for some reason, I stopped.  I feel low again, I start again.  Well, I knew I was tired from taking care of mom, being a wife and mom, and sometimes working.  After mom’s passing, I was drained.  I had zero energy.  At the same time I started taking iron, I started the vitamin D.  My energy levels are back to normal.

Nerve pain.  If you have never had overly sensitive nerves, restless legs, or an amputation, you are not missing anything.  I have had overly sensitive nerves and I had a doctor prescribe me Meloxacam.  It didn’t work. Then he tried me on Gabapentin. It helped, then after my surgery, they upped it because the nerves were shooting off major electric charges that would make my leg jerk hard.  There were times it would wake me from a deep sleep.  Then, I had a friend tell me about some side effects she had, so I looked.  I quit the Gabapentin and figured that mom’s remedy for restless leg syndrome would work, it would help with the other nerve issues.  So, magnesium was started.  My mom swore by taking magnesium for her restless legs and it worked for her.  Now, that I have been taking it, I have not had any major issues.  It actually works better than the pain meds did. And also, it helps you relax.  I actually generally have no issues sleeping.  I don’t get sleepy from it, but I get more relaxed and go to sleep earlier.

I also take vitamin C.  Not only because I work at a school, but if you don’t take vitamin C with iron, you are not getting the full benefit of iron.  Vitamin C helps iron absorb.

Potassium is also in my regimen.  Helps with my muscles not cramping as much.  Now, that I am walking more (no more walking boot from the surgery), my muscles are now having to get stronger, and on long days, I am prone to leg cramps.  I don’t get them that often, but I have had them so bad that it brings me to tears just from stretching.

So there you have it.  This is what I take every day.  I take in the morning vitamin C, iron, potassium, magnesium, and vitamin D.  Night time I take another vitamin C and magnesium.

On my list to add are:

Vitamin B6… helps acne and boosts blood circulation

May add Vitamin K… also helps tame acne

Biotin.. also known as vitamin H.  Helps with hair loss, makes it not as brittle, helps nails not become as brittle (I also have that issue).

I am blessed to have the health that I do.  But, caregiving took everything out of me.  I didn’t realize how bad I was until after mom passed.  I forgot about me.  People have asked me what my new years resolution was, its to take care of me.  To reclaim who I was.  I have pretty much gotten my mind back into a good place.  Now, I have to get my physical health.  I need to get my leg strength back.  It is going to take a while, and that is ok.  Not everything comes at once.

My one piece of advise to caregivers out there.  You need to take care of yourself too.  I wrote a blog a while back about pouring from empty.  You can’t do that.  The person you are taking care of needs all of you.  Not part of you.  The only way to give all of you is to take care of yourself.  If you are low on energy, I suggest you try taking vitamin D.  It helps me so much and I feel it when I don’t take it.  Now, I am no doctor, but I am telling you what has worked for me over the last few weeks.  I hope this helps someone.  I don’t want anyone to suffer.

Life After Death

This is not what you think, life after death.  Its taking my life back after death.  Its been a lot harder than I thought.  Its the everyday things that make my life.  Cooking, dishes, laundry, cleaning, and those projects that have been on the back burner.

I am now on my second year subbing at the local school district.  I had to give it up in April last year because that was when mom started going through all of her cancer testing before we found out and then after all the appointments were done, I was in shell shock from the diagnosis, I just couldn’t deal with it all.  Now this year, I had to take time out because I had my surgery.  I was worried that I wasn’t going to be able to go back to subbing because it was so uncertain about mom and dad taking off that I needed to be available.  After losing mom, it took a certain weight off my shoulders.  I could at least start bringing some kind of money in.  Even if it was just for a few household item.  I told the school I would let them know when I was ready.  After mom’s funeral, I decided it was time to bring back a new normal.  I told them on Jan. 12 and on the 14th, I was subbing.  It was much needed.  Now, I am subbing quite a bit because its peak season for everyone getting sick.  I am really glad I went back so soon.  Dad ended up going back to work on the 14th also and its really helped me find a new routine.

Fast forward to today.  Was meeting someone to buy some stuff from me so I expected to just throw on some clothes, go meet, come home and get on with my day.  Well, I got a call to sub and I said yes, not because of the money, but to get me in a new routine.  I had 6 hours of sleep off and on and I was so not ready to, but I knew if I didn’t, I was going to be lazy the rest of the day.  So, I went to work, came home and put up 2 loads of clothes that had been folded in the basket for 2 days. Gathered laundry and started a load so I had something to wear the next day.  Washed dishes that had been sitting in the sink for 2 days. Hubby made dinner, then I washed those dishes.  I will tell you now, I am tired.  My legs are sore, but I am glad I went to work.  I feel normal.  Well, as normal as you can be when fighting tooth and nail to get out of a major depression.  I am getting there.  But doing the normal everyday things are helping.

Doing all this says, life after death does go on.  Its the paying bills, its the cleaning, its the getting out and not having to worry about anything. I will say however, it has been hard.  The days are getting easier.  But, its the little things that you randomly think of that make you break.  But, the next day, you get up, make your bed, get dressed, and go on about your day.  Sometimes the difference of a day is a total 180.  Great one day, crying all day the next, then back to great.  I am blessed to have an amazing husband and son who have stayed by my side through this whole journey.  My caregiver journey has ended, but a new one has begun.  The me learning how to live in a world without mom journey.

If you are reading this and need advise, or just a sounding board, I am here.  That is the point of this blog.  To let people realize that even though caregiving is often a lonely journey, you are not alone.

The First of Many Firsts

Its been 11 days since mom has passed.  I have learned how to start finding new normal in some things.  But there is no new normal with certain things.  Dad’s birthday was on Jan. 12.  Mine is tomorrow.  The first birthdays after mom’s passing.  Both birthdays have been with her involved.  Dad’s last birthday… mom and dad came over and I made dinner.  Dad’s birthday the other day… I made him dinner but it wasn’t the same.  My last birthday, I got a card and money because it was getting hard on mom to get out a lot, but I had my time with mom.  Tomorrow, I just want it to be over already.  I am already falling apart.

Today I was suppose to sub, but due to uncertainty of road conditions, they closed the schools.  Tomorrow though, I sub and I am glad.  It will give me several hours of being distracted.  But tomorrow after that… who knows.  I will probably be a blubbering mess.  The next hard day after my birthday… mom’s birthday.  April 18.  Then Mother’s Day.  Then my son’s; he was mom’s world.  Then Thanksgiving, her favorite holiday and her last good one.  Christmas but not for the reason of the holidays.  It will be the beginning of the end for her.  Then, the 1 year anniversary.  Rinse and repeat.

No one tells you how you are suppose to get through these firsts.  I am at a loss.  I seriously do not know how to do these.  I will do it as best as I can.  I will have my husband with me.  I know mom is always with me, and around.  I have my signs. But it just isn’t the same.  That hole will never be filled.

Life Goes On

It has been 2 days since mom has passed.  It has been a roller coaster ride for sure.  Just when you think you are strong, you crumble.  What is so hard is to keep going.  Not so much because you are sad, but because when out, everyone says “have a nice day”.  Well, let me just say, the day mom passed, I had to go to Walmart to get mom something to be buried in.  Have a nice day… yeah sure.  How am I suppose to have  a nice day when I just lost my mom.

But in the last couple of day… bills have been paid.  Bills have come in.  Trash has to go out.  Cleaning has to be done.  Groceries have to be got.  But its is still hard to go out and be told “have a nice day”.  I know they don’t know what has happened in our lives.  Just as we know nothing what is going in theirs.

When you step out of what you are going through, you see people laughing, people conducting business.  Its is something I never really paid attention to.  Someone is born and someone dies everyday.  Life happens all around us.  When mom passed, people were getting ready for work, kids were going to school, and we were mourning.  I am sure babies were being born, and others were dying.  I never really realized how much goes on everyday.

Yesterday, I called family and friends.  I got the pallbearers set up.  I got out with my husband for a little bit in the evening and got groceries.  Today, things were finalized for funeral arrangements, washed dishes, and tried to clean the house up some.  Tomorrow, more catching up and phone calls.  It’s life going on.  There is no stopping the world for us to mourn.  We have to do it in our own time.  Our own way.

Mom

Yesterday, Jan. 5, 2018 was a day we expected to come, but yet we didn’t know it would be that date.  My mom went peacefully to the Lord’s place He had prepared for her.  She passed away about 5 am in the morning and dad was with her at her side comforting her.  She had a 2 year 3 week battle with dementia and an 8 month battle of breast cancer. Mom was 71 years, 8 months, 18 days old.  But, she was always young at heart.  Her heart was also made of gold.  She gave everyone a chance with her.  If you were good enough to be a friend of mine, or our sons, you were good enough for her.  She adopted everyone.  She was mom to everyone.  She was grandma to my son’s friends.  She was a caregiver at heart.  It started as a caregiver to a couple who had been married for 75 years, got her LVN certification.  Then my mom, my caregiver when I was a baby.  She knew something wasn’t right, and because of her, I am here today.  She was my mom, my best friend and my teacher.  She taught me how to sew, how to cook, and how to be a good person.  She was always there for me when I needed a shoulder to cry on.  And no matter how old I got, if I needed mom, she was there.  I am blessed to have a mom like her.  I pray that I have become half the mom to my son as she was to me.  But she was not just my mom.  She was my husband’s mom.  When he needed a mom, she was there.  She did not hesitate.  She opened the house to him when he needed a place to live.  How many parents would do that when they are dating their 16 yr old daughter?  Not many, I know that.  Mom was one of a kind lady.  Heart of gold, give the shirt off her back, give you her last dollar.  She was one person I could always count on.

She wanted to travel so bad, but was unable to.  So, she traveled through me.  I would show her pictures of our travels, I would call her when we would stop for the night.  I would even brag about certain food we had lol.  The best conversation I had was when I called from this location._DSC0133

Outside the Chinese Theater in Hollywood, CA standing at John Wayne’s foot prints.  I swear I could hear mom just beaming without being on the phone.  I did that for mom. That was one thing I know she wished she could have seen.  One of her favorite I Love Lucy episodes, and mine too was the one with John Wayne in it.

I miss her, I really do.  But, she hasn’t fully been here for a while so I mourned the loss of her from the dementia a while back.  I mourned losing her from the cancer.  And I rejoice in the fact that she is now my guardian angel now, as she was in life.  She is free from pain.  She is free of the not being able to remember.  She is free from the diabetes. She is whole.  She is who God created us to be.

Today was a day full of phone calls.  It was a busy day.  It was hard not to break down.  I had to make calls to tell friends I haven’t talked to in a while.  I had to track down some too.  I have had to ask on behalf of dad about people being pallbearers. Every response has been “it would be an honor”.  And for that has made this whole process easier.  I know I had mom with me here today.  I let the dogs out this morning, and for some reason I looked up.  I saw a female cardinal, and when I looked up, it looked down at me.  I admit, I cried.  But I know it was her saying she was ok.  Its amazing when the ones you depended on the most to help you get through things, when they are gone, where you find the strength.  That cardinal was my strength today.  Tomorrow, I am sure it will be something else.

2017

This year has been an adventure. It has had many amazing highs, to some pretty brutal lows. It has taught me some amazing life lessons, who I can be and it has taught me some pretty harsh realities.  I want to say I am putting all of 2017 behind me because of how overall hard it has been, but I can’t. I can say 2018 will be full of self discovery.

Over the last couple of years, I have taken care of mom.  Taken her to doctor appointments, brought up hard questions to her doctor, and got some pretty hard answers.  But, I have learned also at the same time patience, taking time to enjoy the little things.  But, the last couple of weeks I have learned one thing especially.  I have forgotten who I was two years ago.  I have to find out who I am again.  I still do my photography but not like I use to.  I use to take pictures almost everyday.  I also cross stitch, but I use to do it a lot.  I use to bake and make candy.  But, I don’t.  I miss everything that I remember doing.  I want to start doing things for me, for my family.  I pray that this coming year, I can.

This year has been rough, but it has shaped me into someone that I never thought I could be.   Strong.  I don’t think I have ever been as strong as I am.  Yes, I have cried.  I have cried many tears. But, in those weak moments, I have become stronger.  I have learned that even in the darkest times, there is always a glimmer of a blessing that is being bestowed on us.  Today, New Year’s Eve, was one of those days.  I am blessed beyond belief that I have what I have.

I have a husband who loves me dearly.  I have an amazing son.  I have a dad who loves mom beyond measure.  I have an uncle that I have found that is still loves his family even many years of lost contact.  I have family that who support me even over the endless miles between us.  I have friends who support me and make sure I am ok, even the ones I have never met.  So, as crappy as this year has been, I can say it has been full of realizations, both positive and negative.  And that, I am grateful for.