“I am still your mom”

My husband heard these words from his mom as she lay in a hospital bed after having spent hours in the emergency room because of heart failure.

It was a frustrating surprise to us she was back in the hospital since she now sported two new heart valves and a pacemaker.  After those surgeries a few weeks ago, everyone thought she was now “Grandma K., Bionic Woman.”  Good as new.  No, better than new!

Not exactly.

Something was awry – her blood pressure was too low and her pulse rate was too high.  As in, her heart is acting like she just ran a marathon. 

She may have been rebuilt into the Bionic Woman but I assure you Grandma K. is not running any marathons.

Since my hubby is his mom’s primary caregiver, he sat in the hospital with her, getting updates from the doctors and nurses and sending regular updates via text to her extended family (several siblings, two other sons and three grandchildren).

Grandma K. is no stranger to hospitals (and my husband has become quite the texter).  She herself was a caregiver to her sister and her mom and has been in an out of hospitals for her heart problems, stroke, knee replacement surgeries as well as a variety of other reasons.   

To say she is sick of being sick would be an understatement.  She doesn’t like hospitals but you’d never know it.  She amazes the nurses and doctors with her positive spirit and toughness.  She has patiently waited for nurse after nurse to find a vein in her arms to start an I/V only to have them give up and have to start it in her neck (it’s about as pleasant as you might imagine). 

Grandma K. has earned her toughness.  She raised three rambunctious boys (and that’s being generous to the boys), was a military wife who moved three boys from Army base to Army base – North Carolina to Virginia to Germany to Italy to Panama then to California  – usually by herself since her husband was stationed in Vietnam. 

This tough woman set out on her own once the boys were mostly raised and she realized she could no longer stay in a destructive marriage.  She had no college education and no job training so went back to school, found a job and excelled as an employee. 

This woman good-naturedly lets us joke that she is the epitome of the song “Weebles Wobble but They Don’t Fall Down.”  (I think she lets us anyway; we’ll know after she reads this).  She’s kind of built like a Weeble and with her bad knees – well, you get the picture. 

She’s one tough lady and she’s sick of people taking care of her.  Grandma K. is the caregiver who sat with her sister through her diabetes and the horrific complications which ensued.  Grandma K. is the caregiver who lived with her life-of-the-party mom and who found her in their home after suffering a massive heart attack.  Grandma K. is the one who worries about my husband doing too much and aggravating his back pain. 

Grandma K. is the tough one, the caregiver.  It’s difficult for her to be the one receiving care. 

So when she sweetly asks the nurse for an extra pillow and blanket to give to my husband so he won’t be cold while he sleeps in the hospital overnight, she expects him to take them. 

She may be lying in the hospital bed while the doctors try to figure out the latest mystery of her heart problems but she is not going to stop being a caregiver. 

She’s too tough to just be the patient. 

After some protests along the line of “don’t worry about me, you’re the one in the hospital” you better believe my husband took the pillow and blanket. 

After all, she is still the mom. 

Goodbye Wayward Son, Hello Airman!

Airman Son & Sisters

Remember Wayward Son?  No effort from him.  Lots of frustration from me (and his dad).  His high school years were a struggle for all of us. Even the animals got sick of all the yelling in the house.

Well, he is now a graduate of Air Force Basic Training!

I actually didn’t believe it when people told me we would see a remarkable difference after Basic Training.  My thoughts ranged from, “I wonder if you can actually die from video game withdrawal” to “what can they do in eight weeks that we couldn’t do in several years” to “please, take him.  Help!”

Our family flew to San Antonio, Texas for the graduation event.  I made the flight reservations early and told Wayward Son that he better graduate because I didn’t want to waste a flight and was going to San Antonio to visit Sea World whether he graduated or not.  (I know – I’m such a mean mommy!).

Happily for us, we saw him graduate and, (bonus!), I still got to visit Sea World. 

During one of the graduation ceremonies yet before we were actually able to see our Airman Son, one of the speakers apparently read my mind because he said, “Parents, when you see your child you will wonder how we were able to transform them in eight short weeks when you couldn’t do it in several years.”

They were not kidding.

This boy who, just a couple of months ago, had no inkling of what it was like to think of anyone but himself and argued with us about anything and everything just for sport, held doors open for us, spoke to us with respect, told us he loved us and carried himself like a man. 

He even seemed a little taller.

He had a group of peers who showed him respect (he’s showing leadership skills!) and he talked about one or two people in the flight who were “recycled” because they weren’t team players and would just sit around while everyone else did chores and worked. (Hmm, sounds vaguely familiar).

He excitedly told us about his new job (a mechanic on the B-52) and how proud of himself he was that he had to undergo a more extensive background check in order to be accepted into the program (and I was quietly grateful his wayward ways hadn’t led to anything more major than costly traffic tickets). 

Even though I am not this boy’s “real” mom, concerns about the choices he was making before enlisting clouded my vision of his future.  I am the step-mom, the one who has no problem stepping aside to let his mom and dad hug him and love on him first upon seeing him at his graduation but I do feel like his mom and have helped raise him, have worried about him and did my best to teach him to be polite and loving and compassionate. 

Many times, it felt as if these lessons were going into a black hole.

The mom in me has to fully admit that I wasn’t thrilled with the idea of sending this boy into the military, particularly during a time of conflict.  I know I was supposed to be proud and pleased that he was going to serve our country but as a self-described pacifist, I had difficulty mustering up a supportive “HOORAH!” 

The mom in me wanted him to choose another path which didn’t involve putting himself in harm’s way but somehow kick started him to a productive and happy future.

Now that I’ve seen him though, and who he has become, I am (for once) happy he didn’t listen to me. 

I am proud of my Airman Son and proud to call myself an Air Force Mom. My eyes well up when he recites the Airman’s Creed with passion and honor and shouts the last line of the Airman’s Creed, in unison with his fellow Airman: I WILL NOT FAIL!

No, you won’t Airman Son.  I believe that now. 

You will not fail.

Priorities: Patient or Paperwork?

When I took Robert to a walk-in clinic on Monday, I knew it wouldn’t sit well with his Care Facility (otherwise known as “New Home”).  It had to be done, though.  Robert had a cough for several weeks which I asked to have checked out several times but the doctor Robert had seen at the Care Facility thought he was fine.  When he was at our house, he was running a fever and clearly not himself.

He was most certainly not fine.

A doctor’s visit was in order so I took him in and Robert was immediately put on antibiotics.  It was a strong prescription so had 10 days of medicine packed into five days.  Since he was staying with us for a few days, we gave him days one and two; New Home only needed to give him days three through five. 

New Home never likes when I get prescriptions for Robert without going through them (hey, I feel as if I tried. I told New Home Robert was sick and their doctor said he was “fine.”).  You missed your chance, New Home.

My mistake was in forgetting to get the discharge paperwork from the clinic that saw Robert.  I got the script, just not the discharge paperwork.

Boy do I regret that mistake.

After the appointment, I picked up the prescription.  I paid for the prescription.  I even emailed several members of the staff at New Home (which included House Manager, supervisor of House Manager and Nurse Ratchet) and explained why Robert needed the medications, where they were located in his bag and when he needed them. 

Of course, the directions were also listed on the label on the box of medication.

For those on pins and needles: I was even very nice about it (and refrained from addressing Nurse Ratchet by my pet name for her).

I know – I was surprised at how nice I was too.

The email I got back was from Nurse Ratchet was dripping with sweetness (hey, she stole my trick).  Bottom line: they can’t give him the meds without the discharge orders from the clinic.

Fine.  I call the clinic to get the discharge orders faxed to me but they can’t do that because I didn’t sign a form saying they had permission to fax me anything (the one form they didn’t have me fill out, apparently).  I would have to pick up the copies in person.  The clinic was nearer my home than my work and they closed at 5:00 p.m. so there was no way I would be able to do this without missing a chunk of work.  I’ve already missed work this week so chose to pick it up in the morning.  I understood their reason for not faxing the paperwork (confidentiality) but hoped this wouldn’t prevent Robert from getting his medication.

I personally would choose medication over the slight possibility of an infringement of confidentiality but the clinic does not.

I turned my attention back to New Home.  Can you please give Robert his medication tonight and I will fax the paperwork to you tomorrow?  No, they can’t (of course not).

I suggested I come over and administer the medication myself which I didn’t want to do because it would be an extra hour and half I didn’t plan on for the evening but I would if that was the only option.  Apparently, I actually couldn’t even do that because the medication was now in their possession.

Wow.  The screaming in my head couldn’t get any louder.

If Robert doesn’t get the antibiotic tonight, there is a risk his infection will return.  He’s on the mend and I’d really rather have him feeling well than back to coughing and feverish.

Call me crazy but it really doesn’t seem like too much to ask.

New Home’s solution was to copy the medication label (with all necessary “legal” information already on it!), fax it to the New Home doctor, have him write another prescription for the medication (the same medication now in their possession), have his office fax the script to New Home and then, if they get it in time, New Home will administer the medication tonight. 

Are you kidding me?  I’m surprised they didn’t have to actually pick up a new pack of pills.

If I had sent Robert back to New Home with a baggie full of unlabeled little red pills, I could understand the hesitancy to give him a pill.  I assure you, that didn’t happen!

I sent him with a brand new prescription, properly labeled, properly prescribed and he may not get it because they don’t have the “sufficient” paperwork. 

And in this case sufficient equals overkill.

I understand the facility has rules to follow and forms to complete in order to stay within the State’s regulations but when the paperwork becomes more important than the patient, there is a problem. 

The clinic, the care facility and the state (because of their rules and regulations), have lost sight of the priority: the patient.  

How has that happened?

It shouldn’t be this difficult to administer an antibiotic. 

Thankfully, at the end of the day, the New Home doctor faxed the prescription making Robert’s antibiotics “legit” and Robert was given his dose for the day. 

Maybe tomorrow everyone can work on their priorities. What form can I complete for that?

This is a Test . . .

Robert was anxious to come over to our house this past weekend and I was happy (and ready) to bring him over.  He is staying for a couple of extra days because he has a neurology appointment today and it just seemed easier to keep him than transport him back and forth and rush to get him back in time to take his meds.   

He’s been here since Saturday and is staying through tomorrow morning.  We planned to still take him to Day Program which means dropping him off and picking him up by mid-afternoon.  It’s a bit of a juggling act (because of work and because Hubby has his own caregiving to do, helping out his mom) but I mentally prepared myself for it and have been looking forward to seeing how a longer stay goes. 

Will I be exhausted by Wednesday?  (probably)

Will Robert be sick of us after four days? (doubtful)

Will we make it to his doctor appointment on time (which involves leaving work from downtown to his Day Program 40 minutes away, back toward downtown to his doctor appointment which should take about 30 minutes, finding parking and allowing for bathroom breaks)?  (hmm, I give it a 50/50 chance)

Will I run out of Rocky Road Ice Cream after four days?  (absolutely)

I felt up to the challenge and was excited about feeling refreshed after a break.  I am also focusing on recognizing stress and dealing with it so it doesn’t come out in impatience.  

It’s a good thing I’m working on that stress thing since, so far, my strength has been tested!

Saturday:  As soon as Robert and I were in the car (with the doors and windows shut) and driving to my house, I realized he needed to change his protective brief.  Once we arrived at the house, I realized a clothing change was in order too. 

No problem.  Robert was happy I had stopped to get him a chocolate shake (otherwise known as a Double Chocolate Chip Frappuccino) and I had my brand new, patient, attitude.   We made quick work of the clean-up and change and Robert was watching the Jeopardy shows we recorded for him.

Two hours later . . . another clean up and full change.  I had to laugh at this obvious test of my patience.  One clean-up and change a day is not uncommon but two?  Not a usual occurrence so I was sure the Universe was testing me.  Bring it on!  I can do this.

Bedtime . . . Robert is visibly shaking under two comforters and telling me through chattering teeth he is freezing.  (note to self: stop taunting the Universe).  I run to the pharmacy for a forehead thermometer because I don’t trust him to keep an oral thermometer under his tongue for two minutes.  After  several minutes of consulting with Hubby and the directions, we figure out how to work the darn thing and take Robert’s temp.  No fever.  Odd, considering he feels warm and his chest is reddish and hot (I chalk it up to the three comforters he is now cocooned in).  I give Robert a fever reducer with his normal bedtime medications, just in case. 

Sunday:  It’s 4:30 a.m. and Hubby is telling me Robert is calling me.  Oh crap.  I meant to wake up earlier and check his temp.  I extricate myself from the fort created around me on the bed which is my two cats and large lab and check on Robert.  He says he’s too warm and needs one of the comforters off.  I remove it in my half-awake state and feel his forehead.  I think it felt okay but I was still so sleepy, I just went back to bed without it really registering. 

By 6:00 when I actually wake up for the day and am not quite so fuzzy headed, his temperature is over 100 degrees (which isn't terrible but for Robert it takes a huge toll).  I give him his morning meds and two more Acetaminophen. 

Robert’s temperature was back to normal by mid-morning but the damage of the fever had been done.  He was moving at half speed (which is pretty darn slow considering he’s slow to begin with).  I got him cleaned up from the night before and remade his bed so he could spend the day resting.  He slept all day, only waking for meals and meds. 

By evening: His fever was back up (I know this because I’m making the most of the new fancy thermometer).  More comforters, more Acetaminophen, more sleep.

Monday:   If Robert was moving at half speed on Sunday, he’s half of that Monday.  He was up most of the night coughing so I keep him home from Day Program, rearrange my schedule and run to the office to pick up some work while hubby is still home in the morning and find an urgent care center for Robert.    By early evening, Robert had antibiotics and no fever.  Still extremely tired and needing three comforters but I think we’re making progress.

Today, he’s back up to half-speed and seems to be feeling better.  He feels well enough to go to Day Program and he has his neurology appointment late this afternoon.  I’m up for what is in store for us today . . .

(Note to Universe: to be clear, that is NOT a taunt!)

Prepare, Prepare, Prepare

Preparing for a trip away always involves adding tasks to the to-do list.  Finding care for the animals, finishing work projects to make up for the time away and packing are just a few tasks on my seemingly endless list.  (Picking just the right size suitcase seems to be my biggest challenge, mainly because I like to have options with both shoes and clothing so take waaaay more than I ever would be able to wear.  Which leads to a bigger suitcase and much ribbing by Hubby.)  Hey, I need options!

Caregivers have a whole other to-do list to be sure their caree is well cared for while the caregiver is away and I was very stressed out about getting everything prepared so Robert wouldn’t even really notice I was gone and wouldn’t be upset about missing a weekend with us.

I have to admit my stress had been showing and I resorted to being impatient with Robert the weekend before we left.  Figuring out how to manage stress better – that’s on the to-do list.

Since Robert lives at New Home, I have to be sure he has enough toothpaste, 7-Up, bedtime protective briefs and other essential personal care items (not to mention a back-up supply of pens!) before I go out of town (invariably, that’s when he runs out of everything!).  I also have to be sure to clearly communicate with the staff so they know that I will still be available by phone but will be several states away and unable to bring him to my house for the weekend or make an emergency run for daytime protective briefs because they ran out (it’s happened).

New Home has been without a House Manager for a while (maybe Robert wasn’t the only one who had run out of daytime briefs) which always makes me a little nervous.  Things slip through the cracks when they are understaffed and I am on heightened alert.  Thankfully, a senior staff member who has earned my trust since Robert moved in over a year ago, was promoted to House Manager.  Hallelujah! Robert would be in good hands during this five day trip.

The only piece of this particular puzzle I couldn’t solve was getting Robert to church on Easter Sunday.  However, while we were spending Easter on planes and in a couple of airports, Robert was able to watch church on television and seemed in good spirits when I called him during a layover. 

Check “guilt” off my to-do list.

The only problem he experienced was he dropped his ring down the sink.  The new House Manager had already alerted me to the situation and arranged for the maintenance crew to attempt to retrieve it the next day.  I explained all this to Robert which satisfied his concerns.  Phew. 

We arrived back home from our trip to see former Wayward Son graduate from Air Force Basic Training (more on that later) and settled into our usual routine.  Robert’s ring was rescued, the new House Manager continues to do a fantastic job of communicating with me and Robert was excited about visiting over the weekend. 

He was so excited in fact that on Thursday, he called me to ask, “what are we doing tomorrow, Trish?”  I hated to break the news to him that I was working on Friday and would pick him up on Saturday, not Friday. 

No matter, he was elated he was coming over and I was looking forward to seeing him. 

The trip away unexpectedly prepared me for more caregiving.

“Clear head and get back in the game of caregiving.”

Cross it off the list!

Solving the Puzzle of Caregiving

I love this puzzle!

To some, caregiving is a juggling act.  There are doctor’s appointments, a quest to find the right diagnosis, paperwork (then more paperwork), calling agencies for assistance, keeping supplies and medications adequately stocked and dealing with the declines in our loved one (and that could be all in one day!).

Add in all the “regular” life stuff a caregiver is doing (raising a family, working, taking care of personal health) – wow, that’s a lot of balls in the air.

For others, caregiving is more of a balancing act.  Walking the high wire with no net – yikes!   

I don’t know how to juggle (something always ends up splattered on the floor – what? You don’t learn with eggs?). 

I am a klutz and afraid of heights so balancing is out of the question. (I’d be the one splattered on the floor!).

For me, I have to describe caregiving as more like a puzzle.  I love puzzles whether they are the crossword kind or the Sudoku kind or the open a box with lots of teeny, tiny pieces kind and am pretty good at solving them.  (My friends love to make fun of me for my love of putting together puzzles).  My mom loved crosswords and puzzles, too, but was much better at solving them than me. 

That’s okay – I’m up to the puzzle challenge even though the puzzle never stays the same.  It changes.  A lot and often (and it’s never one of those easy 100 piece puzzles). 

This caregiving puzzle has a gazillion pieces.

Yesterday, I was trying to accomplish so much that I felt like the puzzle was never going to be solved.  I was determined to have Robert stay with us this weekend since next weekend we will be away at the Boot Camp graduation of The Son Formerly Known as Wayward (in a few short days I can start calling him Air Force Son!). 

I thought it would be too much to ask of Robert to miss two weekends in a row with us.  If there ever was a time to do it, though, it would have been this weekend. 

Our puzzle pieces include my mother-in-law undergoing a double heart valve replacement surgery in a military hospital an hour away from our house.  Thankfully, she is recovering like the tough broad she is.  I wanted to visit but didn’t think I could pick up Robert for the weekend, drive him down to the Air Base, take him into the visitor center to get “clearance,” load him back into the car, drive to the hospital and have him walk the long corridors to see her.  Instead, I chose to delay my pick up of him until later in the day.  (Lots of puzzle pieces!)

Add in a few more pieces – several errands to run before getting to visit mother-in-law (involving getting supplies for both her and my husband who has spent the last several days at the hospital with his mom).  My call to Robert changing the pick-up time from 11:00 to 3:00 was met with some disappointment but changed to understanding once I explained the situation.

Add in a torrential downpour and a terrible miscalculation of my abilities to get to and from and the pick-up time moved to 4:30.

By the time I arrived to pick up Robert, he was in the middle of changing because of an accident.  He then had to use the bathroom which required assistance with clean up.

This puzzle is complicated and messy!

An hour later, we left for the 45 minute drive back home and I still had a trip to the store that needed to be accomplished.

Another day to throw the start of my “I’m going to be a gourmet cook” plans out the window (any excuse not to cook!).  Robert was happy.  He ended up with a cheeseburger, fries and a shake.

Robert finished eating, I fed the animals and let them all out and off we went to the store. 

By the time we returned with supplies needed for the animals during our upcoming trip, put everything away, giving Robert a bowl of ice cream (in a moment of weakness/bribery I promised him ice cream if he helped me at the store even though he had already had a shake), Robert was able to watch Jeopardy and I was able to check the mail and read a note from my doctor that my cholesterol was still high and I should “try harder” to diet and exercise. 

Ugh!  I know, I know. 

Add a piece to the puzzle.

The puzzle is getting larger and the pieces are getting smaller: arranging care for the animals while we are away (thank goodness for awesome friends!), arranging visits for mother-in-law while we are away (her family is more than willing to do so which should give my husband some piece of mind with his own caregiving puzzle) and a reminder to myself to let Robert’s Day Program director and New Home know we will be out of town soon.

After a restful night’s sleep surrounded by animals and Robert laughing and joking this morning, happy to just be here for any amount of time, I realized that no matter how big the puzzle gets or how many pieces are in it, the picture my puzzle creates is of a beautiful, loving and happy family.

I’ll solve that puzzle any day.