What's The Worst They Can Say?

OK you guys!  I think I am getting the hang of this "living my best life" thing.  I have spent many of my 51 years on Earth living in fear.  Our parents taught us to have a "healthy fear" of suspected dangers. Look both ways before you cross the street.  Don't touch the stove because it's hot. Hold onto the handrail going down the steps when you are wearing your socks and DON'T RUN!  So, basically before I had developed my language skills, I had developed fears in my life.  Then, limitations were placed on me and I allowed them to anchor and take a firm hold.  Limiting thoughts such as," I can't run faster than the boys.", "Nobody wants to hear what I have to say.", "I'm not good at math." and "I need a boyfriend." became part of my vocabulary and part of who I was sure I was.

For me, it took a long time and a loving God for me to begin to embrace who I really am and what the truth about me really is.  All of the statements above that were perceived  by me to be true are false.  Yes, I don't NEED a boyfriend but I would LIKE to have one at some point. :-)  There is a good life for me and I am beginning to live it.  I create my reality with my thoughts, words and actions.  Just because something may have been true yesterday, does not make it true today (unless it is the word of God).  I am committed to learning and growing and I have been, actively for the last 12 years.  And as I apply the things that I have learned, it is becoming more evident that I am more willing to take what I would have considered as risks.  I am more willing to ask bold questions that challenge rather than questions that produce safe, easy answers.  I ask for access and knowledge that leads to access into places that are new for me.  What's the worst anyone can say?  NO.  I think I have heard NO enough to be able to handle it one more time without crumbling into a blubbering pile of worthlessness. 

So when you see me, I may look different and you might think it's my hair or my glasses.  But it's what's under that hair and what's behind those glasses that has changed. Romans 12 verse 2 of the Holy Bible will give you a little more insight.  Fear is not driving my actions or my decision-making.  Love is the motivation behind my actions.  Love for myself and love for those I come in contact with.  And frankly, love for myself may take me out of some social circles.  So, don't hate if we don't see each other as much as we used to.  It's all good.  I may just have to love you from a distance.  But I still have love for you.

All of the small actions I take are beginning to take shape into a bigger and better life.  There is a true transformation at hand.  And the evidence is on the way.  In three years, I am going to look back to 2018 and say, "WOW!  Look at how far I have come!".

Won't He do it!?

I just have to take a moment and explain what I have experienced spiritually over the past week.  I have been a bit stressed (as you can imagine) with the race against time that it seems that my Mom is involved in.  The catch 22 between aggressively working to clear the fluid from her lungs to help her breathe on her own and the toll that it could take on heart if they were too aggressive and getting her safely off the ventilator before permanent damage occurs..  So I have had a specific order in mind of how things wold need to go.  Cardiology had an idea too of what they needed to see before they would consider her for the heart procedure that she needed.  The doc told us weeks ago that unless he saw more activity and awareness from her and clearing up of her infection, she would not be a candidate for the procedure.  He continued, talking right over her,  to explain all of the complications with the procedure that could lead to another stroke if there were calcifications, death if the aortic valve was ripped in the process, possible need for blood transfusion, and so on and so on.  This same doc only came back 2 more times with doom and gloom and the expectation that Mommy was supposed to snap to when he was around.  He spoke very loudly when he addressed her (like that would get her to respond to him). And on his last visit, he just asked us "how is she today?" Right over her again like she wasn't even there.  So I asked her, "how are you today, Mommy?"  And she answered me and he heard the answer.  Needless to say, we did not like him much.  So from that point on, another member of his team had been assigned to monitor my Mom.  That was about 2 weeks ago.  The other members of the team were nicer, less self-centered and more patient-centered.

 So, I had been praying for Mommy's lungs to be clear of fluid.  And for her to be restored.  And for it to be quick.  And for me to be patient so that God could be God and handle Mommy's case but for God to hurry up.  And for God to kick the devil in his butt and get him out of here.  And then, I felt like I should do what I am here for and turn everything thing else over to God.  Just concentrate on what I am here for.  To be the voice of the voiceless person in the hospital bed that I love dearly.  To make sure that her wishes are known and acted upon.  And to encourage people and to come from a place of joy and love in all of my interactions in this place.  That is all.

Yesterday I got a phone call from inside the hospital while I was in the cardiac waiting room (also in the hospital).   It was the doc who had been so negative about Mommy being able to have a heart procedure.  He explained to me that she was scheduled for the procedure the very next day.  Today!  He then went over, one more time, all of the things that could go wrong. But said if we understood, he was ready to do it.  And I thought to myself:
 1.  This is really sudden.
2.  This is the guy that said she didn't qualify and was really unpleasant about it.
3.  Wow!  There's no way that we could have orchestrated this twist.
4.  Look what happens when you do what you can and God does what only He can!

The procedure went well today and the doc came out encouraged.  No blockages.  He increased the opening through which blood passes about 40% and says that it should last about six months.  Long enough for her to continue to recover and be a candidate for the more permanent procedure.  And he said with a smile, "I am encouraged."  All I can think is that God will use who he wants to use for your good.  He will change the hearts and minds of who He wants to change to make things happen for those who are faithful.  Won't He do it!?  I am so grateful that He will and He does!!

Things I see and feel today

It is a very interesting time right now.  Mommy is in CCU. Cardiac Care unit.  Critical Care unit is how it feels.  Life and death decisions are being made here everyday.  In some ways, I don't think we need to be here.  She still has a lot of capacity. She spends time alert and engaged.  She is not on any pain medication.  She responds to let you know how she feels.  But in other ways, she really needs to be here because of the difficulties she is having with respiration and her heart.  She tires quickly and often.  They are still pulling fluid out of her that has accumulated in her lungs making them weak.  Her heart is not working to its optimal potential.   It really is a waiting game and a race against time.  It feels like active limbo. And in rooms all around her, other families are saying goodbye and some families are moving to step down rooms in other areas of the hospital.  Critical is real life all around us.

I am just hoping that I am not missing my lessons from all of this.  And I am praying that rest = healing for my Mom.  I do not feel like I am doing nothing.  I know why I am here.  Every day or every two days, there is a new staff working on this floor with her.  So, I am here to be her voice while she does not have one.  Each new person has an opinion of my Mom from notes left on her chart and from conversations from the shift before.  But they don't really get to know who she is until I have a conversation with them. Then things shift ever so slightly for the better.  I sit during the day and I call at night.  I know she would do the same thing for me.

And I am a believer in the power of prayer and the miracles of God.  So, unlike the professionals that I talk to each day, I really believe that she can come through this and be restored.  I know that she believes as well.  Sometimes it's hard to stand firm. But I am doing it.  I do get frustrated with some who don't share my point of view.  But I have always been a "glass half full" kind of girl.  I think I always will be.  Because nothing and no one can take my joy.  I am always going to see the bright side. Always!  And I also know that we get to start fresh each and every day.  So, here's to the hope that tomorrow brings!  

I See You

My Mom is currently in the hospital.  She has pneumonia, congestive heart failure, aortic stenosis (narrowing of the aortic valve),  and lots of fluid in her lungs in addition to the pneumonia.  She is in the ICU and has been there for 3 days so far.  It is a long road to get rid of this nastiness.  And it seems I am way more patient than the patient.  She didn't even think she needed to go to the ER much less be admitted into the hospital or go to ICU.  So, needless to say, she is ready to go home every minute of every day.  Currently, she needs support to get deep breaths.  So, she is using a mask similar to a CPAP but the machine is bigger. It's called a Bi PAP.  The best thing for her is rest.  She needs to stay calm to heal.  But she is anxious when she is awake.  This is a very tough time for her and for me watching this unfold.  I know she can kick this even though there are a lot of things that are not in her favor at the moment.  As the infection goes away, I know she will get stronger.  It's hard to see her so uncomfortable.  It's hard giving updates to family and friends daily.  It's hard making a schedule that works.  It's hard knowing what the priority should be.  It's hard knowing where I should focus my attention.  It's hard to focus period.  My hours awake are really starting to outweigh my sleeping hours (not that they were ever really balanced.)  Sleep and prayer are the two most important factors for me and for Mommy.  As I am writing this at nearly 1AM, I am going to sleep now and start fresh tomorrow with prayer for the best direction.  More later...

Exactly What It Takes

It's getting very close to the time that I leave for vacation.  I want to be able to take a mental and physical vacation away from home with no caregiving responsibilities. There are a lot of things that I am going to do in order to be able to spend a care-free time on vacation and be completely present and in the moment.

I made arrangements 6 months ago with family members to come and stay with my Mom while I go away.  And this week, I confirmed that we are still on track with the plans.  Since I will be gone for 12 days, I needed two relatives to come for part-time each.  I will leave tips and hints, directions on where the chocolate stash is kept and a regular daily schedule document for them to refer to.  I will also leave the addresses for Mom's therapy location and our church so that they can take her while I am away.

I am going to load 2 med cases to cover two weeks of time.  In addition to family members, I have also done as much as I can (barring no emergencies) to make sure that all of the regular CNA's are in place to work on the days when I am gone. 

I am doing a menu plan for the whole 12 days and cooking and freezing dinners for 5 - 7 nights.

I am leaving a stash of cash for emergency pizza or Chinese food. 

I have stocked up on all supplies for personal care and made sure that all medications are in the supply needed. 

And I have to pay the bills for the month before I go.  If I don't everything for the month will have a late fee attached to it.  And we can't have that!!

More than all of this, it has been most important to keep my Mom abreast of the happenings and to remind her of when I will be gone and who is coming to stay with her.  And the second most important thing is convincing myself that everything will be fine.  I have done enough.  I have nothing to worry about.  The people at the house have got the helm.  I will be off duty with no worries.

It seems like a lot to be able to walk out of the house and have no worries.  But I really want that feeling of having no worries and I will go to great lengths in order to make that feeling happen because I need it and because I deserve it.  And it has been more than 10 years since I have had this opportunity.  There is no such thing as just taking off on a whim anymore.  Those days are long gone for a good, long while.  This trip is the closest I have come since 2005.  And this one sure wasn't just a whim.  It has taken, motivation, belief, planning, strategy and lots of help from many different people. And it is about to become reality.  I am so so ready!!!

So, I have a lot left to do.  But I am highly motivated to get stuff done and take the break that I deserve.  I will take lots of pictures to share with everyone. Ciao for now!

Starting to See Results

I think I am starting to feel a connection to working out regularly and being aware of what I should eat.  Notice, I didn’t say that I feel the connection to eating the right foods in the right portion sizes.  Because I am not all together there yet.  But I do understand that if I get it together, I could experience some greater success.  I am beginning to see the physical results of working out regularly.  It turns out that regularly for me has turned out to be 3 – 4 days a week for weights and cardio.  Daily, I am more cognizant that I feel better when I maintain the schedule that includes a workout with a trainer at the start of the week and a workout every other day on my own.  And now I am finding that I have to wear a belt with my pants again.  I am not seeing a lot of pounds dropping when I stand on the scale.  But I am noticing monthly that I have a lower BMI (less body fat).  And I have fewer jiggly spots.  I think I like seeing the physical changes and it makes it more motivating for me to keep going.

Real Change Takes Real Effort

I am coming to the end of the time that I have been working with the nutritionist.  I have all the tools I need to be successful in eating in a healthy, complete, nutritious, portion-controlled way.  So, it really is all up to me to do it.  I have not been as diligent as I can be with it.  But now that I am about to be released to continue on this journey alone, I need to put my practice into action instead of it just being theory.  I have also added exercise into the mix.  And I have had the same kind of feelings.  I think I want success to just happen.  I was not really willing to put in the kind of effort that would be considered EFFORT.  I think, for both of these components, I was just kind of going through the motions.  But I recognize that I need to step up my game and stop hiding with all the other people in the world who are ordinary and just walking through it.  I need to face the facts that: I am determined.  I can succeed in amazing ways.  I am not ashamed to be successful.  And I am not ashamed to be outstanding!!  For a week I have been wrestling with breaking out of the mold and really shining or just mixing in and being average and less than my fully realized self.  It's really not about being perfect.  It's about giving it all that I have for me - by me and not selling myself short or dumbing down for others to be comfortable.  I am making small gains now.  But big things are just around the corner.  I am coming to claim what's mine!! 

Adding to the mix

So I am at the 9 week mark of working with a dietician and I am beginning to grasp a new mindset.  I am starting to think in terms of food groups and portion sizes.  I still have to measure things in order to be absolutely sure that I am having the right amount.  The areas where I do the poorest at this are with creamer in coffee, full fat dressing on salads and popcorn.  The areas where I do the best with measuring is with ounces of lean protein and with how much of each grain I should be eating.  And I must say that I am incredibly awesome with measuring my veggies (that is when I eat them).  Sometimes my weekends do not include veggies.  I will get better at that.  I just know I will.

I am embarking on week 2 of going to the gym!!  I marched in there last week and plopped down some money for a membership and for 4 personal training sessions.  I think starting with the trainer was the BEST thing I have done for myself since increasing how much water I drink each day.  I realized that I could probably have lost another year by thinking that I was ready to go back to the gym and I would just know what to do when I got in there.  I think what stopped me from committing to exercise was just that; I did not know where to start when I got in the gym.  I am good at reading a map and at following directions.  So, when I got a written out plan of what to do each day that I go in the gym, I was relieved and empowered to move forward.  Next thing was to get my body on board.  So, in order to make sure that I have no conflicts with working out, I am going to the gym at a crazy early hour of the day like 6:30am.  I have to eat 30 minutes before I work out (which is 6am).  And I have to wake up and take medication that requires no eating for 30 minutes after taking it (so that's 5:30am).  Needless to say, my body clock was not very happy with this turn of events.  And I spent all of last week a little drowsy and cranky by the end of the day.  I started going to sleep a little earlier and consistently getting up early.  The only day that I didn't was on Sunday.  I slept in 2 hours later than I had for the rest of the week.

I did really well with my assessment and my first workout.  And by "well" I mean I didn't pass out or need the bucket like on The Biggest Loser".  I went home each day and got back in the bed for another hour after the workouts!  My muscles were really sore towards the end of the day.  I was not sure if I was going to be able to complete two more back-to-back days with that level of soreness and stiffness.  I massaged my muscles and took a hecka hot shower, took some Aleve and went to bed.  The next morning I was still sore and apprehensive about whether I was going to be able to support my own body weight doing things like planks, push-up's and lunges.  But I was able to.  And I found that my muscles, while engaged, were less sore.  They went back to aching when they were at rest.  And by my 3 days off for the week, the soreness went away.

I just started my second week and I feel that I did a lot better today working with the trainer than I did last week.  I was not defeated by any activity.  I was able to do them all and I had a challenge with each set I completed.  I think I am going to enjoy this new addition.  I am going to work with the trainer once a week for 12 weeks (10 more to go) and see where I land.  Hopefully, I will have a new habit established by then.

This week, I am going to be more diligent about measuring.  I am hoping to see some good results on the scale by week 3.  I know it takes a little while to balance out.  Muscles are expanding before they contract and they weigh more than fat.  Also being better hydrated makes it look like you are gaining but that's false.  So, I will stay the course, trust the process and put the work in.  HERE WE GO!!!!

This is a real tough thing to get good at!

I am on my second week of working with the dietitian.  I did lose half of a pound during my first week, trying to get my footing.  This week, I am concentrating more on using my food log, planning my meals and getting all of my portions in.  I only had one back slide this week.  (I had to have a fitting farewell to cheese. Not proud of it but it happened.)

I have had a very hard time trying to get a good food schedule going with my work schedule.  I have had some unusual days where I worked longer than expected stints.  I went longer than I should have without eating due to needing to be in place for work things.  I also got caught up with running errands on my day off and went too long without eating because I didn't want to stop and get fast food and I didn't pack any snacks.  Ugh!  I do now understand that food gives you the energy and ability to concentrate that you have to fake if you don't eat in a timely fashion.  I could actually feel when I needed to eat.  I had a noticeable drop in energy and it became hard to concentrate.  When I did get to eat (maybe 30 -45 minutes after I needed to), I immediately felt better.  It was kind of freaky.  Lesson learned!! 

This is the first week where I actually ate right every day not just weekdays.  So, I noticed in order to have enough fresh food, I need two trips to the grocery store a week.  But I am surely spending less money on shopping trips buying more real food and less things in boxes and entrees in the freezer section.

So, I am still learning and I am getting smarter with every day that goes by.  I hope I can get more comfortable with meals and snacks plus when to eat them.  And I think I need to be able to pull myself away from activities in order to eat.  I really think that part of this has to do with realizing my worth and standing up for myself.  I mean, a human need is a human need.  The world will be just fine if I take 15 minutes to eat - or even 30 minutes!  Everybody knows it.  I just have to know it too. And be solid in it before it's too late for me to get a meal in.

Making ME a Priority

So, in January, I made a promise to myself to do better and be better when it come to taking care of myself. Well, the Universe is all in favor of this because in no time and without searching, I found a registered dietitian to help me get back on track. I scheduled and kept my last three doctor's appointments and I feel good that I put myself back on my own radar. But I don't want this to be obligatory. I don't want to give up on me because it's too hard to keep up with or I am too tired to do all of the prep work that comes with doing the right things or worse of all, I don't want to stop caring because it seems no one else cares. I am enough. Nobody else needs to put energy or emphasis on me or my well being except me. I am enough of a reason. I have to make me and my well being MY priority. If I can be meticulous about my Mom's schedule, then I can be just as meticulous with my own.

I used to think that I had to keep myself in shape in order to be able to help my Mom with her physical needs. Sure, it is true that I need strength and balance to help her. But I need to be in good shape so that I can live to the ripe old 81 that my Mom has made it to. And be just as inappropriate as she is because at 81, you can say what you mean and not worry how others are going to take it! So, I have to give care to myself as well as to others. It just takes a little planning (which I am good at) and a daily diligence and attention. I am with me everyday. So, I really should make the most of it.

So, I am re-learning how to eat the right foods in the right amounts. BTW, any food can be the right food. Don't get it twisted! This should be a forever change. Not a diet or quick fix. I just got off track by taking my attention away from me and what is important for me. I have spent the last 6 years basically in the same size clothing. So, I didn't get too off track. But those clothes have fit a number of different ways based on how my weight has fluctuated over the years. Now, I want them fit comfortably again.

I am concentrating on one thing at a time and hoping that in 3 months I will have all of the pieces in place and be back on the right road. So, this week, I am just trying to get used to how many servings from each food group I should eat each day. And trying my best to eat them all each day.  So far, I have only had one completely successful day. Over the weekend, I overindulged in wine and did not eat enough green veggies. Monday, I ate all of my veggies but I missed a serving of grain. Eventually, before the week is out, I will get it a better grip on it. Who knows, it may take 2 weeks or more before I really feel it is a part of me.  Seriously, it is not about being perfect but it is all about doing my best each day, learning more each day and applying it for a better tomorrow. And so, this is my attitude heading into the days to come. I feel that I am being true to myself and not being too critical of myself as I get my footing. I am hoping to find myself and be forgiving of myself as continue on this journey.

Slow Down and Listen

We arrived early for Mom's first visit to CORE for the new year.  My Mom told me that she didn't want to participate at CORE on this day. After we had already driven 30 minutes to get there through midday traffic on a highway that is under construction.   She just wanted to stay home and watch a movie. Harry Potter and the Sorcerer’s Stone to be specific. She said she wanted me to watch it with her.  I was a little deflated when she brought up that she just didn’t feel like doing anything that day. But I honored her wishes and we went back home. I figured she was just a little comfortable since the holidays. That was her pass. After we got to the house, I had to go back to work for the rest of the afternoon.  When I got home at the end of my workday, I asked if she had watched the movie and she told me no.  She was waiting for me to watch with her. 

The month of January is very busy for me at work. I have had 2 or more events a week during this month. This means that I get home well after dinner time and only manage to have dinner with Mommy about 2 or 3 nights a week. I wake up and leave for work and she is asleep and many times I come home and she is asleep. So we have not spent a lot of time together this month.  

So for the last 2 weeks, every time we get into the car to go to CORE, she asks if we really have to go. And then I go from frustrated because I am going to a lot of effort to get her there twice a week to a pep talk to get her ready to go and be ready to give it her all when we get there.  

On this last Friday, we didn't even make it out of the front door of the house and she said, “Do we have to go to CORE today?”  I got very frustrated and asked her, “Are we going to do this every time we get ready to go to CORE? This needs to stop!”   

When we got in the car, she told me that she didn't mean that she did not want to go. She meant that since I was off from work, there were many things we could do together and places we could go that would be fun instead of going to CORE. 

Then I thought OH!!!  What she is saying is that she wants to spend some quality time with me. And that she has missed me since I have been away so much this month. I thought about what it must be like to only leave the house for medical reasons. How boring!  There are a million other places to go on the planet. She was right.

When she had all of her abilities, she used to decide that we were going to the movies and that we would see whatever was starting when we got there. And on this particular day she wanted to go to the movies after CORE and she told me we will see whatever is starting when we get there. We ended up seeing a good film. Not really one we had heard of before.  But we were pleasantly surprised by it.

On Saturday, we went to the movies on purpose and saw Hidden Figures. It was a great movie and we had a really good time together. Mommy was in the government at the time that the story took place. So of course after the film, I asked her a lot of questions about what her experience was during the 50's and 60's working in the US Government. 

After the movies, we went home and I had to go into work for about 3 hours. When I got home I went in and sat with Mommy for a little while. She said that she had a great day with me and that it was really fun. I am happy that I listened to more than her words and I heard her heart and was able to stop and take some time to spend with her.

I forgot that my work schedule affects more people than just me. The CNA's who have to spend more hours with my Mom. My Mom who goes days without seeing me. My friends who lose touch during my busier times at work.   I have to keep this in mind in the future and try to be more mindful of those around me.  Call home in the middle of the day just to say Hi and check on how things are going.  And make an effort to add some fun into those longer stretches after I have been unavailable.

The Struggle is Real

I find myself at a point that I never imagined myself in.  Not good or bad.  Just unexpected and my reality:

1.       50 years old and unmarried

2.       Living with and caring for my Mother for almost 10 years

3.       2 cats

4.       20 pounds over the weight where I am most comfortable

5.       Very mad at specific men that makes me not trust any man to get close to me

6.       Unhappy and disappointed in myself

7.       Not coping well with the loss that if feel and trying to ignore it everyday

There was a time when, even though I tried to fight it off and not let it in, the voices of others and how they defined me spoke to me louder than my own voice.  As I ended a bad marriage of 3 years, it took me almost 2 years until I was built back up again.  Only to allow myself to be defined 5 more significant times by people who had their best interests at heart, not mine.  The last time this happened was just in the past year.

So, as I took down the 2016 calendar where my goal was to lose 10 pounds over the course of the year, I looked at January – my starting weight.  Then, I looked at December – my ending weight and I had changed by 9 pounds.  But not by losing them.  I gained 9 pounds over the course of the year.  That made 3 years in a row where I had gained.  And then I realized that I have fallen out of love with myself.  I tell myself affirmations daily and I don’t hate on my body anymore in words or thoughts.  But I don’t think I believe or trust my self-talk to myself.  Somewhere in me, I lost respect for myself as I worked harder and did more for others than I would do on my own behalf.  I let myself down and I broke my own heart.

I have been trying to find a way to apologize to me and to commit to myself and forgive myself for my own contributions and actions in my past. And I think I really need to go back to square one.  Spend time with myself and my thoughts.  Allowing myself time to heal and to once again appreciate me and all the wonderful things I bring to the world.  I am valuable.  I am important.  I am smart.  I do have worth.  And none of this is determined by others.  And if no one else in the world sees this in me that does not mean that I should be silenced and take these gifts away from the world.  I need to bring my full self with me everywhere I go.  And I need to confidently speak up for myself everywhere I go.  My heart and my consideration and compassion for others will keep me from becoming an egotistical jerk.  So, I’m not out to get a big head but I don’t want to downplay myself for anyone else’s comfort.

It’s time to put me back on my priority list.  And I need to honor myself inside and out.  Consistency will be the key.  I can’t just be good to myself once a week.  I need to be good to me everyday.  I do this through the foods I eat, the water I drink, the walks I take, the books I read, the music I listen to and the things and people I say NO to in order to get to my ultimate goals – not being derailed by others.  And I will tell myself that I am truly sorry and I will believe it this time because I am my authentic and true self.  I will save myself a lot of hassle in the future when I open my mouth to say how I feel instead of opening my mouth to eat my feelings and bury them.  Taking a walk to clear my head may prevent me from not being able to fall asleep because of so much on my mind.  Writing all of this stuff down actually helps me to breathe better, deeper and stress dissipates.  Listening to music instantly changes my mood when outdated tracks start playing in my head.  I have been spending more time each day with God and this has been going on for most of 2016.  I have been reading the Bible and praying each morning (sometimes praying with the wrong focus for the wrong things – but I have also received Divine correction).  I have been listening more and recognizing and acknowledging the Holy Spirit as it works in my life.  And this is leading me toward scriptures that feed me just what I need when I need it.  So I am working on appreciating me – mind, body, soul. And being grateful for all that I have, all that I am and all that I bring to the world.

It's a good tired

I don't want to let this moment pass without honoring it.  Today is Wednesday and I just got back from a great 4 day vacation on Monday.  I went to Punta Cana, Dominican Republic.  I had a very relaxing time.  I got sun, sleep, massage, drinks and laughs with some wonderful family members that I don't see often enough.  And I returned home to amped up mayhem.  It seems it's time to pump out the septic tank.  But no one here at home thought that I should be alerted or forewarned while enjoying my  4 days away.  I guess that was nice of them to not bother me with the news.  So I came home on high alert.  Tuesday I called about having the work done and was told that it could be done on Wedensday. But until they get here, no running of the dishwasher or clothes washer because that can cause problems that no one wants to clean up.  So for the last two nights I have been taking clothes to a local laundromat to wash them.  Then I bring them home to dry them and put them away.  I had that honor tonight because the company slid me to tomorrow's schedule instead on coming today for the pump out.  This extra task has made for some late nights.

I'm tired.  But it's a good tired.  It think the vacation put me in a mood that makes this ok.  God knows what He's doing even when we don't.  I was also very concerned about paying bills on time with depleted funds.  And in the last 24 hours, I have found 2 accounts that I didn't even know I had!  Once again God knows what He's doing even when we don't.

My Mom has been resting during prime time. She watches TV, gets drowsy and cranks the volume up on the TV because she says she can't hear it.  The reality is that she is asleep!  So cranking up the volume will keep her more alert.  Three times I came in the kitchen door and thought the TV in the family room next door was on only to find that the TV in her room was up to a volume of 40!  Two of these 3 times, she had a CNA sitting right next to her letting this happen like everything was normal.  Ugh!!!  I just go in and turn it back down.  Most times there is a mini lecture that goes with this activity.  "Why does the TV have to be so loud?", I say.  And she replies, "because I can't hear it!"  And we play this game each time.  Then, when I sit down in the room with her, she falls asleep peacefully with the colume at a normal level.  I'm tired.  But it's a good tired.

I'm looking forward to being first on the schedule tomorrow so that this cycle can stop and I can rest once more.  But I do note that every one of my concerns is being handled.  And I don't have to worry.  I can take all of this in stride.  I know who is in control and I have been equipped for what lies ahead in any situation.

I just wanted to share that.

Keep Hope Alive

My Mom had a stroke in 2005 and from that time to the present, she has shared with me that she wants to walk again.  You see, she lost the ability to control her left side in her stroke.  The doctors went as far as to say that she has 'left-side deficit" - she doesn't notice that her left side is there.  over the years, she has made a conscious effort to recognize her left side.  And we do exercises and techniques that make her use her left side in her daily activities.

Her CNA's love her and they have for years.  They see my Mom as a sweet, gentle, funny old lady who needs help with her chocolate addiction.  I know my Mom is all of these things but I also know that she is more.  She is tough.  She is determined.  She is wise, cunning and highly intelligent.  When she worked for the US Government, her bosses boss was the Attorney General of the United States.  You don't just coast by on good looks and a smile at that level of the government.  I knew her when.  So, I can push her and I can motivate her.  And she can do the same for me. Even though most of her attempts to support me seem like sabotages to what I am trying to accomplish (but that's for another blog). 

My Mom gained some skills in rehab after her stroke.  She was able to walk with a hemi walker.  A hemi walker is like a cane but it has 4 legs that fold out on the bottom.  But when she came home from rehab, no one got her out of bed to practice walking with her and she lost the ability.  Her leg atrophied.  Her muscles got tight.  Her left foot won't touch the ground.  Daily stretching can help loosen things up.  But it hasn't brought her back to where she used to be.  And with her CNA's being so in love with her, she gets little to no practice at things that will help make her stronger.  As a group, they think it is easier for her to get dressed laying down.  When she sits up, they whisk her into her wheelchair.  I take a different approach.  I have her sit on the side of the bed to get dressed so that she gets the practice of holding herself up unassisted.  Building up her stamina.  And when we do a transfer from the bed to the chair, we stand, pivot and sit.  If she doesn't help in the process, the process stops and we start over.  Even sitting back in her wheelchair is different.  The girls will lift her from behind, under her arms.  I will stand in front of her and support her back while she pushes herself back in the chair.  We leave one foot rest off of the chair so that she can propel herself through the house.  But the girls will still push her from room to room.  So the cushy life that she leads is taking away her ability to do things for herself.  At this point, she is winded after standing for 10 seconds.  Her brain tells her "You have to sit down!!!".

So, she gets a shot at rehab about once a year.  She sets a goal.  She gets 30 days to try to make progress towards that goal.  And in 30 days if significant gains are not made, her rehab has to end and she can re-apply in 6 months.  It's very disheartening, frustrating and very sad.  It's hard to frame it up for her too so that it doesn't seem like a failure.  This is what it is like when using Medicare benefits for rehabilitation services.

For years, I have been trying to find a physical therapist who would work private.  Or one who would work private and make home visits.  Or a personal trainer who would help at home with strength training.  Because of her cushy life, my Mom really does like getting some good physical activity in.  She enjoys the foot and hand bikes.  She enjoys practicing standing using the kitchen sink.  But she will fight you on a walk around the block.  She will say she wants to go and by the time we are 2 houses away, she's ready to come back.  There's nothing better than a busy day when she can fall asleep by 10pm because she is tired from doing things all day.

So, this past week, we attended a luncheon for stroke survivors and there was a presentation by a company called CORE.  They specialize in helping people get back from paralysis to walking unassisted and other improvements in daily living.  They believe that with lots of practice and cues being sent to the brain from a number of different sources, the body will remember how to function in it's original state.  So, every visit to CORE is work!  Work that leads to a goal.  A goal that is attainable.  And you can work at it as long as it takes. They are private pay at $90 per hour-long session.  Mommy can see the benefits of going.  She has agreed to take a tour.  But she hasn't decided whole-heartedly that she is ready to do it.  Because she can see that it will be work.  But once she sees all of the buff physiologists there, I think she will be on board.  She responds so much better and will try harder if she knows a cute guy is counting on her to succeed. Go figure!

I am so hopeful for her future.  I would love to see her reach her goal.  Most of the time, when there is big change, there is big resistance from some area to try to stop the big blessing from happening.  I am on the lookout.  But this time, she can have her dream.  She will have to work for it.  But it can be hers.  I have had visions already of her standing and taking steps again. This will help all of us who come in contact with her.  It will make some areas of care easier.  It will make her world bigger again with fewer limits.  It may mean that I will have to hide the sugar-free chocolates better in the house too.  And she will be a walking testimony to encourage so many.

I look forward to sharing her journey with you.

Life's little heartaches

The BeeGees asked, "How do you mend a broken heart?".  I think that it gets mended through acceptance, strength, forgiveness and moving forward.  The better question may be, "Why do I have a broken heart?"  Because as family caregivers, we have our hearts broken pretty regularly.  We deal with a great deal of loss; loss of the loved one we once knew (changes in physical and mental states), loss of abilities, loss of our own freedom, loss of friends/relationships.  Many times, in order to get through what we have to do as family caregivers, we will create systems and plans and schedules and routines in an effort to gain control over things that we are really not completely in control of.  We visualize what a good day will look like.  We make plans and follow through with them to make the positive outcomes that we are looking for.  Some of us know that these moments will never come again.  So, we want to do everything we can to make the moments perfect.  That's a lot of effort, energy and heart being expended.  So, sometimes when things don't go as planned, we get our hearts broken, our feelings hurt and we experience more loss - loss of the control that we desperately try to have over the uncontrollable.

I find myself in that situation on occasion.  I have tried to lessen the chances of being hurt by having no control over the uncontrollable circumstances that come along.  Lots of times, I give up the control and let the situation roll out the way it is going to roll out and go from being in control to rolling with the punches.  That's part of the resilience of a family caregiver.  But on a rare occasion, you find that you are really looking forward to something (an occasion, an outing, a new piece of medical equipment that will make your life easier) and you put a lot more positive energy there than you even know.  When that plan changes, falls through, gets delayed - it really knocks the wind out of you.  I think when you are still down, it is so important to have at least one person on the planet (not the person that you care for) that you can tell what just threw you for a loop.  When you get to hear yourself explain the situation out loud, automatically, it won't seem as bad as it was when you were the only one carrying the weight.  Hopefully, the person that you talk to will display some empathy and will understand that you just suffered a blow.  Because being heard and acknowledged also will make the situation seem less tragic.  After being heard and acknowledged, I start to see where I am standing and I ask myself if I really need to be there.  Do I need to be THIS upset over a change in plans?  Do I need to be THIS frazzled because we had to leave a restaurant in the middle of the meal? Or do I need to be THIS sad because a social visit got cancelled or postponed?  Most of the time, there are far bigger things to be upset about and this offense can be understood or overlooked.  Put away the horns and other party favors because the pity party has come to an end.  It's time to re-group.  Chalk it up.  Let it go.  See it for what it was.  Take the hate, anger, disgust out of your heart and mind.  Take a deep breath (or a heavy sigh) and keep moving.  If needed, you can even forgive yourself for the way you handled the situation.  Almost always, it's not the end of the world.  As family caregivers, we know that, ultimately, we can't win them all no matter how hard we want to.  So, we sit with it for a while.  It was not what we planned.  But it's OK.  Life continues.  We definitely live and learn.  And we will make it back to happy little by little.  BTW - writing this down for you to read has made me feel tremendously better.  And I am well on the way to mending this most recent broken heart.

Are things falling to pieces? Or are the pieces falling into place?

I was urged to think about this when a friend of mine posted a saying to the effect of sometimes when it looks like things are falling to pieces, it's really the pieces falling into place.  When I find myself in the position where things are falling to pieces I am usually such a wreck that I can't remember the situation.  It is difficult, distressing, shocking to me that I am not in control and cannot stop the avalanche or tidal wave I see approaching that covers everything in it's wake.  But I do have one instance that was a little frightening but not so scarring that I have blocked it from my memory.  So, I will share in this blog.

I am a bowler.  I have been competing since I was a kid.  My Dad was a youth bowling coach for over 50 years and coached both me and my 2 brothers for our entire lives.  I compete annually in the Women's National Championship tournament as an amateur.  So, in 2015, I was scheduled to bowl in my 20th Nationals tournament on Reno, NV in June. My entry was confirmed and paid for by February of that year.  I had a team with 4 spots on it for bowlers.  Sometimes it is a little challenging to get 3 other people to share in your vision and form a team.  People have a hard time with getting the time off of work or away from home.  They have challenges paying for the flight and hotel.  They have challenges paying for the tournament entry.  So, when you lock in your team, you have already done a fair bit of work.  For this tournament, I was only able to fill my roster with 3 bowlers.  I got a half of a commitment from a 4th person.  But when it came time to pay for things and buy a plane ticket, the truth came out and she was unable to travel with us.  So, it's not so bad to have one opening on the team.  There's a substitution bulletin board at the tournament site for this kind of dilemma.  It wouldn't be the first time that I had been on a team that had to grab a sub at the tournament.  And we were bowling in the event about halfway through the full window of the competition.  The tournament ran for months and ended in July.  We were bowling at the beginning of June.  So, there should be subs available. So, then, we were 3.  So, as we were booking flights, the 3rd bowler looked at the days that we were flying and realized that she was scheduled to bowl a different tournament, in a different city in Nevada over the same dates.  There was no replacing her either.  So, we had gotten one sub before at a tournament.  How hard could it be to get two subs for the team event?  All we can do is try.

The two of us remaining on the team secured our room and our flights.  I was travelling with the best doubles partner and travelling companion in the whole world.  We have travelled together for just about a decade.  So, we have a great time. We share common interests like casinos, cocktails and good food, fine Vegas entertainment and relaxing at the spa.  We have never had a bad trip.  We always find the fun no matter what we are doing.  Flight delays don't steal our joy.  Lost luggage doesn't phase us.  We always have a great time in every situation.  Because of this, we always plan a trip to Reno paired with a trip to Vegas.  Hey!  We made it all the way out there!  We might as well make the most of it!  So, 2 days in Reno and 3 days in Vegas and our trip itinerary was complete.

 

 So, both me and my bowling bestie have responsibilities to our Moms.  They help us out and we take care of them when they need it.  Jodi's Mom helps her with her kids tremendously and Jodi stays on top of what her Mom's medical needs are.   During this particular year, Jodi's Mom had been having a variety of problems with her knees, her heart, her gall bladder and general feelings on lethargy. Oh, and blood clots!  She had been in and out of the hospital during the year.  But she was at a good point as we were planning to leave for our trip.  But as fate would have it, she went into the hospital 2 weeks before our trip for a one week stay.  We were still hoping that she would have her strength back and be able to hold things down at the house while we were gone.  She reassured Jodi that she was fine and that she should go to the tournament with no worries.  But you know how you get the feeling that someone is putting on a front?  That their words and actions don't exactly match up?  That's the impression that Jodi got.  And the night before the flight, she told me that she was going to have to stay home just to be sure everything was OK with her Mom.  Of course, I was disappointed in my own selfish way.  But I did understand and hoped that everything would work out.  That in the morning,  her Mom would spring out of bed, tell Jodi she felt like a million bucks and that she should hurry and catch her flight!  Nope.  Not so much.  I flew out to Reno for my 20th tournament all alone.  No cheering section.  No back up.  No support.  No team.

This was completely new for me.  Every one of the other 19 years, I had travelled with a team to go to Nationals.  (except that one year where I worked all the way up to the day before the event and had to fly in on the morning that we bowled team).

I got to Reno and checked in at my hotel.  I got something to eat and then went to the National Bowling Stadium to see if I could find a team to bowl with.  There was a team from New Jersey that needed one bowler.  So, I called them and they offered me their open spot.  Whew!  I was going to compete for the 20th consecutive tournament!!  They bowled at the times that I was scheduled to bowl originally too.  So, my squad times were the same. The tournament office removed my team entry for the tournament and moved it to 2016.  So, my spot for the following year was secured.  That was a bonus!  The 2016 tournament was going to be in Las Vegas and would most likely be a sell out because of the change in venue to one of the best cities on the planet.  That night, I played Blackjack (as usual), won money (as usual), and went to bed (not as usual).  Usually on my first night, I would play until the sun came up and take my bankroll back to the room to use for the rest of my trip or I would play until I gave back all of the money the nice dealers had pushed to my side of the table.

The next day was the late afternoon squad of the team event.  I lounged during the day.  Ate a big midday meal at Hash House A-Go-Go and washed it down with a Bloody Mary – the BLT one. Yummy!  I made my way next door to the bowling stadium and met up with my team.  Really nice ladies!  They gave me a shirt to wear- just for the event.  There’s an award if your team dresses the same at Nationals.  My partner Cheryl was a very cool person to meet.  We had great conversations.  We took our team picture before the squad started, entered the brackets and sat down for the pre-game meeting where the tournament officials greet you, tell you where all of the participants on your squad are from and the give out PARTCIPATION AWARDS.  First timers to the tournament get a warm welcome.  But if you have been in 20 or more consecutive tournaments, you get a pin, patch or plaque.  This was my year to get a pin.

I was so happy that I had actually made it to 20 consecutive tournaments.  There were lots of obstacles along the way (finances, accommodations, time off from work, finding a team), but I made it!  And I bowled pretty well on the first day.  When I sub with a team, I would feel like a failure if I did not bowl my average for the 3 games.  The team had spent the day golfing and they were spent.  I did better than average.  On the second day for doubles and singles, I really did well with a 602 as my high series in singles and a 1675 for all-events for the weekend.  I had my highest finish ever in the tournament.  3^rd place in my division in singles and 5^th in all-events.  I truly felt like things were completely falling apart as I made this trip into the unknown in a familiar setting.  The experience caused me to stretch and grow and reach new heights.

For the 2016 tournament,   we are in Las Vegas to compete and to play – all with one plane ride this year.  We leave in the morning and there are only 2 of us.  But we know we will find a few subs and have another one of the best trips that we have ever had! I have a good feeling about this year. I will let you know how we do.



Humbled and Grateful

I am surprised at how good a group of friends I have.  Sometimes it feels very isolating when you spend a lot of time at home as a caregiver.  But it's really great to know that good friends will come into the cave with you and help you tackle the bear inside. Whatever the bear is at the time.  My "bears" are lack of reliable help with my Mom, an occasionally crazy and hectic schedule, the guilt that I feel from being away from home and keeping the household running.  My good friends have offered everything from staying with my Mom for a number of hours to grocery shopping for me to taking the kid to school for me when my schedule is crazy.  They are such a God send and I truly love them - not for what they do as much as just for who they are and what they stand for.  They say that birds of a feather flock together and in this case it's true because I would do anything for them as well.  It warms  my hardened, frozen heart to have such a loving and caring friends.

Pushed to the Limits

My oh my!  Pushing the boundaries is a pastime for my Mom!  This week, she had lots of opportunities as she turned 80 on Tuesday, July 14th.  She had company in from home and she wanted to make the most of their time together.  On the first full day they had together, my Mom got up at 8am and stayed up and moving until 10pm with no nap or trip to relax in bed.  She took the week as the ultimate in eating everything bad and in excess.  Breakfast on her birthday was Corned Beef hash, grits, eggs and a biscuit.  All good for her birthday.  No problem there.  And no lunch because she was full until dinner.  Dinner was a loaded plate at a teppanyaki cook-at-the-table restaurant.  Leftovers were enough for dinner for the next 2 nights.   I have been trying to give her enough insulin for all of the dastardly things she will take part in.  But after she makes up her evil plans, she changes them in the middle of the frenzy.  Case in point - Olive Garden dinner.  Understood there would be breadsticks in the plan of attack.  A cocktail was also in the mix.  Dinner and dessert were chosen.  All good.  We did not order appetizers in order for dinner to arrive in a timely fashion.  Then, we could time the insulin shot to best match up with when the food was coming. First the drinks come.  A few sips and it's time for the insulin.  Many more units than she would typically need because of the hefty meal to come. Breadsticks arrive.  She has one with Alfredo dipping sauce.  Yummy.  Then another. - Danger Zone.  And before she can finish, she's asking for a third one!  I let her know we didn't come to the restaurant for a breadstick dinner.  We came for a complete meal.  #3 was split in half.  Then, the entrée - Chicken Parm and a side of spaghetti arrive.  She eats half of it in order to save room for the raspberry cheesecake that she planned on for her dessert.  Well, at breadstick 2.5, I think the insulin coverage attempt was foiled.  So, she was stuffy with a runny nose by the time she finished with the meal.  When she got her long-acting insulin, we pushed that up too in order to help the situation.  The next morning her waking blood sugar was 210.  FAIL!!!!

So she has a sensible breakfast and before her plate is cleared from the table she says, "There's Oreos in that cabinet over there."  As if!!!  What's the point in making it to your 80th birthday if you are going to kill yourself by the end of the first week as an 80 year old!  I can't wait for her sugar to get back in alignment so that she can think more clearly.  I know everyone deserves to live a little.  But if she did this all of the time, she would have a very short life left.  I love it when people say to me, "she's old - giver her what she wants".  She won't get much older with that mentality.  She is in very good health and I want to keep it that way.  She is not denied anything.  She is denied the kind of excess that she won't be able to recover from.  But she's making it hard on a sista'!

Momentum

The articles of incorporation came in last Monday and I have been setting up a few appointments to go along with my upcoming days off from the job that pays me a weekly check.  So, tomorrow I have 2 meetings.  One to pick the brain of an Executive Director of a non-profit and the other to start on my business plan.  Next, going to meet with some folks who are willing to be front line volunteers.  Then, off to pick the brain of another ED.  I am picking up speed.  I do need to keep it real and acknowledge that big highs can have potentially as big of a low.  I can't let those get me.  I need to keep making progress.  There's no room for "I can't do this."  I just have to stay on my game.  And make room for Mommy wherever and whenever I can.

Moving Forward

Wow!  I am really bad about keeping this blog updated!  Happy 2014!  Lots of movement on the Caregiver front.  Mommy and I are still chugging along.  I went to a class on how to start a non-profit and how to apply for 501 (C)3 tax status from the IRS.  So, let the games begin!!  I am getting my human resources lined up to begin on this journey and then I will worry about the financial resources to make it happen.  It's amazing how I thought I was starting small and just taking care of Orange County - maybe the Tri-County area.  But Brevard County has also shown interest in this project.  So, having the name of Caregiver Resource Center of Florida, Incorporated was not a bad choice!!  Much, much more to come!!