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!!

CCU

My Mom got moved to the critical care unit a few days ago.  The docs and nurses are really nice there.  We are getting straight answers to anything that we ask.  My brother came to town this weekend because we thought that my Mom was going to be having a heart procedure and he wanted to be here for that.  It turns out that she may not be strong enough for the procedure.  She's currently on a ventilator with lots of fluid still in her lungs.  There are lots of prayers going up for her.  I pray for her and I pray for me too.  I pray to be able to know what the right decisions are.  I pray to be able to hear her voice and carry out her wishes.  It's a really tough spot to be in both in the hospital bed and sitting along side of it.

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...

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.

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.

Does a working Family Caregiver ever relax???

I wear a number of hats.  I have an employee hat.  I have a daughter hat.  I have a sister hat.  I have an entrepreneur hat.  And the relational hats of cousin, friend, neighbor and acquaintance.  But I think the most important at the moment is the family caregiver hat.  I always feel like there is a demand on me.  I always feel like there is something to be completed to be checked off of one of my many "to do" lists.  And if I am not doing something, I feel like I am a slacker.  I even schedule time with nothing on my calendar.  That is supposed to be my "down time'.  I actually had to have a friend of mine tell me it was ok to spend the weekend doing nothing. - meaning not reaching a new goal or crossing something off of my list.  I had to get permission to not feel guilty for just being myself for a short period of time.  I should probably self-regulate better than I am doing right now.  I feel like everything is piling up in every area.  So, I feel like I should be working every waking minute but I know that this is not good for me.  I need to take a different approach.  I need to allow myself to have a day off without feeling guilty as if I don't deserve downtime.  And I shouldn't have to have someone outside of myself confirm for me that it's OK to chill for a minute.  I think I need to more clearly define and set aside work time in order to clearly define and set aside off time.  And I need to be true to myself and speak my truth.  I am spending too much time doing things that really are not important to me just because I was asked.  So, instead of being 100% in the moment, I am thinking to myself, "I really should be doing something else right now".  So, I am creating this anxiety.  It's time to turn it off and shut it down.

Sitting here writing this blog is step one.  This is one of the things that I really should have been doing.  I know I am not the only person on the planet who feels like I am overwhelmed because I try to do too much and make others happy.  But I have to consider myself in this scenario and make sure I stay happy too.  And blogging (clearing my mind) makes me happy.  When I start the day doing something just for me (pray, reflect, write down my dream from the night before), I feel a lot better than days that I start with a fire drill of any kind.  It's hard to get back to my place of peace.  When I start on the "what do I have to do" path, it's hard to step off of it and I end up exhausted a the end of the day because I found many things to answer that question.

Yesterday, I sat down and organized bills first thing in the morning.  So, I am straight going into next month.  That takes a whole lot of stress off of me.  If I don't organize, everyday, it seems like I am playing catch up and I don't know where I stand on due dates or dollar amounts.  And then I feel bad for not organizing and I feel bad for not caring enough to organize and I feel bad because I am not being responsible. On and on and on.

So, I am talking myself off of the ledge and going back inside the window - no longer threatening to jump.  It's a way better feeling.  So, friends - I hope you understand if I decline a few of your offers to go out.  I will take a rain check hoping to catch you next time.  I am trying to do a better job of not spreading myself too thin.  Getting myself back on track and balanced. And to answer the question, "Does a family caregiver ever relax?", I believe the answer is YES.  But just like getting to Carnegie Hall, it takes practice, practice, practice.

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.

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.

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'!