Realizations

This weekend has been a really long weekend as far as realizations.  Here is a list, though short, of what happened.

Friday morning.. back popped again and was the exact same pain as I felt before.  Meeting with the amazing chaplain, Bruce,  and our social worker, Pete.  They said in their meetings, that our nurse, Rosie, has said she was deteriorating pretty quick.  Wait, what??   Friday afternoon.. went to go buy a recliner for my husband.  Friday evening.. something shifted in my back, sciatic nerve was apparently pinched and I couldn’t feel my left leg.  That night, ER visit.  Couldn’t get any relief.  After a few hours later and 2 potent pain relief shots, I finally was able to walk again somewhat pain free.

Saturday.  Pretty much over did it and caused myself more pain because I don’t know how to quit even when things are up against me.

Sunday..  The realization, thanks to my husband, school isn’t going to happen for me.  Not because he doesn’t support me, he does.  But the fact that some days I can’t stand for long periods of times, or sit for long periods of time or both because of pain. That some days I can’t hold on to anything because the degenerative discs are reeking havoc on my nerves and causing tingling in my arms and hands.  That was the beginning of the realizations I have had in the last 48 hours.

Today.. mom.  My realization with her hit me with a ton of bricks.  To go back to my meeting Friday.  In the past several weeks, every nurse that has come in has said her vitals were good.  So, in my head, I figured she was ok. But then today, when I went in to shower and check on her she was in the bathroom.  She was in the bathroom and I didn’t think much of it.  Then she needed to get dressed.  I figured it out.  Between her lack of mobility, and incontinence she has had for a while, but never was this bad.  It was before mainly because she was on a water pill for a while and sometimes she just couldn’t make it in time.  But now, with the cancer, it is affecting her hip so bad that she is having hell waking.  I got her walker out for her, she still won’t use it.  I realized maybe I refused to see what was really going on.  She is losing her self dignity and I can see it.  I saw her this evening and I could see she was close to tears putting on yet another pair of undies and pants.

My heart breaks seeing her like this.  This is not how she wants to be.  I see she is tired.  The hospice team for mom has mentioned that she will need 24 hour care.  How will we do it, who will do it have been the questions.  I know I probably should have talked to dad, but talking to him about mom is hard.  Not just for me, but for him too.  And I have talked before about nursing homes and he pretty much shut me down before I could really say anything.  So, Friday I talked to Pete and Bruce about it.  Mom has told me years ago she didn’t want the care to fall on me and she knows I am physically not capable of taking care of her.  And also she doesn’t want my son to be put in the same position as I was when my mom was taking care of her mom.  I see that mom is needing 24 hour care quick.  Like really a lot sooner than I had thought.  But, yet I also know that mom will probably go quickly if at a nursing home.  In a way, I don’t want her to suffer anymore.  I know it is probably not the best thing to say, but, she is suffering. And I know that she deserves better than this.  I wish I was able to take her pain away.  I wish I knew what else to do.  Love her, be there for her, and pray for her.  It’s all I can do.

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I Didn’t Ask For This

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This above picture stated something a few years ago that was very positive.  Now, I look at it and say, I didn’t ask for this.  This life that I have now.  A mom who is dying of not one, but two horrible diseases.  A dad who I have no idea on health, but know that he will probably go soon after mom.

I didn’t ask to be given a life of so much uncertainty.  I asked to be stable, to have mom around as a normal, healthy grandma to our son. For my son to have a grandma in his adult years, something I never had.  I didn’t ask for so many morning to wake up with worry.  I didn’t ask for us to be broke all the time.  I didn’t ask for any of this and yet here we are.

What did my mom do to have dementia and cancer?  She was the most caring, giving, Godly woman I know and I ask what did she do to deserve this. I know that I have my faults.  I’m far from perfect, as we all are.  But, there is one thing that gets me.  Why ? I can’t think of anything we all did to get to here.  I just hope and pray that there are better days to come.

I ask that whatever we are going through now will bring greatness to our lives.  People tell me, “oh, you will be blessed for what you are doing”.  You know what I say to that… it better be a huge one.  Seriously, I have put my life on hold once for my father-in-law, for my self to deal with chronic pain, and now its pretty much on hold to help take care of my mom. I even was “nurse Nanci” to my ex-roommate to help him with wound care.  I did that for years.  I have focused on others for so long, I have seem to have forgotten about my own family and myself.  Especially myself.  Whatever is going on now, I didn’t ask for.  All I can do is pray that this current situation leads into something I do want… stability and a degree.

When to Give Advise

In a world of technology comes advise from everywhere and everyone.  WebMD, Google, and countless people on Twitter and Facebook.  Sometimes it comes from someone saying a simple statement.  A generalized statement about a situation that you know how to handle, a general vent, nothing major.  But then BAM!  You get someone who thinks they know best and starts giving advise.  Don’t do this, do that instead.  You need to take them/yourself to the doctor. You need to take this, not that.  You need to place them in a nursing home.  You need to take care of yourself.  You know what I want to say.. SHUT UP!!!

Ok, now that is out of the way.  This is what I mean.  As caregivers, we have backing of the doctors, nurses, hospice, social workers, and sometimes chaplains. Sometimes, there are days that there is so much that happens.  Caregivers get sick.  The person we care for gets sick, and when you combine it with their diagnosis, it does sometimes make things harder. Then you add in family members who like to add their two cents in when they have no clue on what is going on in the everyday goings on.  People give advise that they NEED to do this or that.  You know, its not always that easy.

In many cases, its not that bad.  People automatically assume the worst.  Take my mom for instance. My dad works (yes still, 45 years now at the same place).  I have chronic pain.  Mom got to a point that we didn’t know if she was going to be ok when left alone.  Yes, we could have placed her.  But that would not have been the right thing.  She still has a lot of life in her.  Yes, she has issues getting around some, but that is to be expected.  She has cancer in her hip and yes the pain makes it hard to walk, but it is no reason to place her.  We have a system that works for her.  Do days get rough ?  Absolutely. But that is why we vent.  We as caregivers need to vent.  If we hold it all in, we all will blow up and it won’t be pretty and things will generally be said that will be hurtful to someone.

There are times when people ask, what can we do to help.  First and foremost.. don’t give advise if you are not in the everyday, or at least frequency of helping with the person that needs caregiving, just don’t.  It’s not that we don’t appreciate it, its that its generally not needed.  Not pertinent to the situation.

If you want to help, this is what you can do.  Give your time.  All caregivers, especially when they are the soul one, it gets tiring.  They get tired, they need a break, they have chores that can’t be done, they need self care.  They need a mental break.  They need to be able to recharge, even if its for an hour.  You would not believe how sometimes a shower can make all the difference.  It’s like being a new parent all over again.  You can also give your time in another way… helping them with chores and/or errands.  Sometimes at the end of the day, dishes just don’t get done.  Sometimes making meals are hard enough in itself. Offer to help do laundry, bring over some freezer meals, washing their dishes.  Just something.   Another thing you can do is donate money and or gift cards.  Many caregivers have had to leave their jobs to care for their loved one and there are times we struggle.  I mean seriously struggle.  There are times they don’t know how the bills are going to get paid, get or get food in the house.  Giving money for bills is an amazing gift.  Bills get paid and food or house supplies are got.  Gift cards are also a great gift.  It can allow for food and house supplies got, clothes to be got, gas in the vehicle to get where they need to go.  In my instance, my husband can’t work because he is fighting his own illness and is disabled and I am working as a substitute teacher.  We all know that isn’t much, but its something.  That is why I want to go back to school.  But the most amazing thing that can given, an ear to listen.  Sometimes we need to just talk and cry.  No talking, no advise, just listening.  The same goes for when we post something on Facebook, on Twitter, or just say it to someone.

Sometimes we do need advise.  Don’t get me wrong on this.  Sometimes we do get to a point that we say, what would you do.  But just remember, if its just a rant, don’t give advise, because most of the time, we know what we need to do, we just have to get it off our chest.

Pink October

This post is something I have had on my mind ever since my mom was diagnosed with breast cancer.  But, I never thought I would be writing it.  I’m sitting here, drinking my coffee, listening to Christian music, alone in my house.  Actually a rare moment for me.  But anyways, I wanted to talk about the importance of pink October.

First and foremost, there is only one other case on my mom’s side of the family that I know of.  That would be my grandmother who had a melanoma removed from her wrist.  But, other than that, no cancer, especially breast cancer.  I never thought I would say that my mom has breast cancer.  But, I am having to say it and it sucks.  Really sucks.  I still cry some when I tell people my mom has it.  What hurts the most, I know my mom would have been able to catch it before it got where it is now.

My mom has always been the one to just live life as it comes.  No extra tests, no extra interventions.  When I was a kid, probably around 12 or so, my mom was diagnosed with type 2 diabetes.  The doctor told her she could probably just control it with diet and minimal meds. I remember this because she was in such denial.  I remember she ate whatever, did whatever and didn’t take care of herself.  Well, it got to a point that the doctor told her she needed to go on meds because her blood sugar was really high.  It took years to get to that point, but it did.  She always high blood pressure, which runs in the women in the family.  I have been blessed to not have this issue yet.  But, I am more active, I eat better than I once did, and so far, its perfect.  The last time I had it checked, it was 122/73 or so.  They were happy with it.  Mom has also been on meds for high cholesterol and this is where I believe her breast cancer risk went through the roof.  They put my mom on Lipitor.  It is a statin.  It has been linked to breast cancer with long term use.  My mom had been on it for as long as I can remember.  I know probably 20 or so years.  On top of her lack of diet to get the cholesterol down and genetics, she was on it because it would not go down.  Then you add her addiction to diet coke.  It was really bad.  It at first wasn’t so bad, then it gradually got to a point that would be all she would drink, especially at home.  If we went out, she would get tea and add Equal or Sweet N Low to it.  Aspartame also has been linked to cancer.  Do you see where I am going with this??  Diet has played a huge part of her cancer diagnosis.  Sometimes it is really hard to not blame her for it. I mean seriously, she didn’t care.  But, she enjoyed it and I guess I have to rejoice in the fact that she was happy and did have that carefree spirit that I so long to have sometimes.

At age 50, there is a recommendation for mammograms.  I believe she had one, but after that, she said no more.  I know in the last oh say 20 years, she has refused a mammogram.  She didn’t see the point of if.  I kept my mouth shut because I believe she should have for me.  I mean, why would you not screen for something that will potentially kill you and see if I am going to be at risk for it.  Then the day that I was helping my mom with something, I saw the spot on her breast.  I will never forget that image.  It was horrible.  I got the deepest, darkest feeling I have ever felt.  I knew deep down inside.  Red dimpling on her left breast close to the armpit.  Dad had seen it and thank goodness he went with me to her doctors appointment. April 17, 2017 will be the day that changed everything.  The doctor saw it, she knew but wanted her to go through the testing.  April 18, we celebrated her 71st birthday.  April 19 started all the testing.  Mammogram, MRI, biopsy.  If mom would have had regular mammograms, she would not have needed all of this.  There is no telling how long she had had it, but it had been a while since it was in multiple areas of her body.  The day we got the results forever changed all of us.  I was in shock, but yet, I already knew.

October is breast cancer awareness month.  Pink is the color for breast cancer.  Breast cancer is not just a woman’s cancer.  Men get it to, but yet, they do not get the attention that is needed.

  • About 1 in 8 U.S. women (about 12%) will develop invasive breast cancer over the course of her lifetime.
  • About 2,470 new cases of invasive breast cancer are expected to be diagnosed in men in 2017. A man’s lifetime risk of breast cancer is about 1 in 1,000.
  • More can be read here at this link :  http://www.breastcancer.org/symptoms/understand_bc/statistics

I put this here because there are so many risk factors that make you have breast cancer.  Medicine, diet, age, genetics, race, along with other factors can lead to it.  With my mom being the only one to have breast cancer, my risk doubles.  If I had two first degree relatives (mother, sister, daughter) risks is 5 times more.  With risk factors, recommended age to start getting mammograms is age 40.

Prevention and early detection starts at home.  Not smoking, healthy diet, and self exams.    I realize there is a lot reports that state that mammograms are not always right.  The way I look at it is that there are some things not always 100%, but to have extra testing just in case, especially when your risk factors are higher, it is worth it.

I have several friends who have had breast cancer.  They are here today because of regular exams and following their doctor’s advise.  Men and women need to check themselves.  It can happen to anyone.  It can come out of no where.  My mom decided to not go with any treatment and I understand.  With her dementia, she knows what will come.  Yes, she is scared.  We are all scared.  I know with my mom’s medical history, I am up a huge wall.  Diabetes, high blood pressure, high cholesterol, dementia and cancer.  My dad’s side has cancer in every generation that I have been able to track.  My great grandfather..colon or prostate cancer (can’t remember which one), grandfather..stomach cancer, great uncle..kidney cancer, aunt..bladder cancer that spread to her gallbladder.  I am up a huge wall on both sides, so it is up to me to make sure my risks are down by taking care of myself.

Women, please check yourselves in the shower and laying in bed.  It only takes a minute.  If you are not sure how, please watch this.  It is a visual of how to check.

How to self check your breast

This is to hopefully make you all realize breast cancer is real.  It is deadly.  And it effects not only the person that has it, but those that are around.

Pouring From Empty

There is a good ole saying that runs true, especially in the caregiving world. You can’t pour from an empty cup.   I have tried many times and sometimes, well most of the time it doesn’t work.

I hit that realization a few days ago.  I was in bed, and all I did was turn over and it happened.  Something in my back decided to pop and now, my empty cup is now bone dry.  I was doing well.  I wasn’t having extreme pain, I wasn’t having any anxiety or depression issues, mom has been doing well, dad and I are ok.  I thought my cup was full, or at least half way full.  Enough where I could do what I needed to without issue.  Now, I realize I have probably been running on fumes.  And those fumes ran out.

My husband is now my main concern.  We finally have a doctor who is going to help him get him healthy.  I am now needing to focus on him.  Getting him healthy and me in the process.  I am blessed to say, he is fixable.  Me… well, maybe but that is another story.  But physical part of the said cup isn’t even close to half of what the caregiver needs.  We need the mental and emotional parts of the cup filled to the top.  We deal with so much that pulls us in different directions.  For instance, my husband and my mom both need me to keep up with all the doctor appointments, medicine, and relaying any thing pertaining to medical organized and all things organized.  Thank goodness for hospice to help with mom’s meds because she calls them in for me and I just pick them up or tell dad they need to be picked up.  Then you also add in the anxiety.  The thought of me having to do all things.  Cooking, cleaning, making the money, and somehow make school (which I hope to start in Jan.) fall all into place. Add in a dash of teenager attitude, waiting for test results, and lack of funds, you now have a glimpse of what is in my head.  Now, take said cup and break it.  You have all these issues all over and you realize you need a break.  You need to take care of you.

Filling the cup involves several things.  First, you have to gather pieces of the cups and glue it back together. This is what I would call the physical stuff.  You can’t function appropriately if you are in physical pain.  Long term physical pain will lead into emotional issues.  I know.. depression and anxiety hit me the hardest when I am in the most pain. Then once the cup is back together and strong, you can fill the cup up with things to help you mentally and emotionally.  Start with faith.  It doesn’t matter what faith you are, you need to have strong conviction of your faith.  Personally, I am a Christian, but, I do not go to church. I believe in God and all things he is and does.  Faith has a lot to do with your emotional well being.  That is why I talk to the hospice chaplain because I can get his view on things and maybe see things in a more Godly way.  Then, what is left is to deal with any leftover anxiety and depression.  This is where you may need to start going to a psychologist or someone that you can talk to help you get through the problems.  But, the very last thing that I have found helps with physical and emotional parts of the cup… food.  Your food choices make a huge difference on how you feel both mentally and physically.  What you put into your body will play a major roll in these two things.  I have found that gluten makes my pain worse.  It makes my joints swell, and in turn, I can barely move.  Sodas make me have huge mood swings.  I become a raging monster, the yelling mom, and no one can do anything right.  I have noticed this and as much as I love Dr. Pepper, I cannot drink it.  Sprite is ok, but sodas in general make me hurt.  Also, the more junk you put in your body, the less you will have the ability to do things.  The weigh gets pack on, the aches and pains get worse, and then most of the time, you realize it’s to late.  Heart attack, stroke, and whatever else you can think of.  There have been studies that show that caregivers, especially the ones that do not have any help will often have a stress induced medical episode and generally become pretty sick themselves.  All it is, is their body making them stop so they can recover.

I pray that I am able to fix me so that I can pour from a cup that doesn’t run empty.  I can’t afford to run on empty like I have been.  No more fumes, no more half full.  I will be running on full from now on.

Thinking About the Future

Sometimes, when things are calm, you realize certain things.  Like, for me, its my little family’s future.  When things are calm, it allows me to be able to talk to my mom like she was never sick.  Though she changed the subject, she still is my ear to listen.  I have been thinking about how I am going to take care of my family.  Husband can’t work, son is still a couple of months from being able to work.  I have been subbing at the local school, but that isn’t enough.

I have decided to go back to school.  I want to do this not only to prove to myself I can, but to provide a future for us. I want to be able to say I finished something.  I don’t want to have to worry about anything.  School for me will be hard.  Working part time, going to school, taking care of my family.  What you ask am I going to major in?  Well, I leaning towards an English major.  No, I don’t want to become a teacher, at least not now, if ever.  But, I want to be able to become a teacher’s aide.  I want to work with kids, but I don’t want to worry about tests and what lesson plans are going to be, and so on.  I feel like this is where I should be.  It will open doors that are now closed to me.  It will also be the third generation to do an English major.  My great aunt was a English Lit major and my dad was an English major and was an English teacher for a short while.

Having this calm (well as calm as it will get) has really allowed me focus on my needs for once.  I have the support of my husband, son, and mom.  I haven’t talked to dad yet, well that is another story.  I will tell him, but not right now.  The chaplain that we have come from hospice came today.   I talked to him and he is probably the only other one I will talk to about this decision.  I have prayed about this, and its just funny that he called me yesterday and now he and I have an appointment to talk. Its funny how things like that work.

I go back to my last post about the calm before the storm.  It has been really calm for a while and it is almost scary making this decision.  I am afraid I am going to stir up a major storm.  And if I do, will I be able to get through it?  I know with my family beside me, I will, but it scares me.  It almost paralyzes me how scared I am.  But, I have to do it.  There is no other way to get ahead.  But, for now, I am going to enjoy this calm.  Our future depends on it.

The Calm Before the Storm

In the terms of weather, we all know that before a front hits, there is total stillness.  In a hurricane, the worst part is after the eye has passed.   As in anything that has happened in my life, there has always been a calmness before tragedy and chaos.  This was true when mom was diagnosed with dementia.  We went on an impromptu trip, came back all happy… next day I get that call that I will never forget.  Then fast forward to this last May.  There wasn’t total calmness, but it was enough to say it was my calm before mom was given the diagnosis.

Now, today, mom has been doing really well for a couple of weeks and it has really surprised the nurses.  Mom is almost  5 months into her diagnosis, though she has had it for who knows how much longer.  But, in the terms of any terminal patients, and in my case two times cancer caregiver, the calm was wellness, happiness, an eery sense of calm.  Things going well.  Then in the blink of an eye, they spiral into death.  Yes, I am loving seeing my mom (for the most part) for who she always has been to me.  I see a glimpse of the old her.  When we go out, I always check on her before we leave to make sure she is ok.  If we are going out to the lake, she always says to me , have fun.  Now, you know, when you have a family member who is dying, you want to spend every minute with them, but mom is different.  She has told me to live my life, not to worry about her, and though I try to have a normal life, I still worry about her.  I fear that one morning I will wake up and not see the light on in the living room and I will see her lifeless in bed.  I fear that when we come home, I will see ambulance lights in the driveway. I fear that while we are out, having fun, I will get a call from dad to come home now.

I can’t enjoy my life like mom wants me to, though I do try my hardest.  I have calm.  I am waiting for that storm to hit.  The only thing about this storm, I don’t see it on the radar, I don’t know when its coming.  Only God does.  And I pray that when that storms does hit, that he won’t let me sink.  I cannot imagine life without my mom.  She has always been my best friend, my shoulder to cry on, the one I can talk to anytime.  She is still, and always be my best friend.  I still cry on her shoulder some, but she will never see the ugly cries I have alone.  I still talk to her, but I don’t get the same advise I need.  I do get encouragement, some.  But there are things that I miss. I have though always been like her on one thing.  When she knew rain was coming, despite how bad it was going to be, she couldn’t sleep.  Well, I got that from her, but this storm I am waiting on… its an unknown day, unknown time and yes, there are many nights, I can’t sleep easy.  Like tonight, I am not able to turn off my head because all of this has been on my mind.