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The Chronicles of Pern: First Fall

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Friday, February 28, 2014

Her Surgery is Indefinitely Postponed!

The last few weeks have been a series of ups and downs for my mother.  Mom has been in and out of the ER because she has been having issues with her tracheotomy.  Anytime I see the name of her rehab center on my caller ID I cringe.  This week alone she has been in the ER twice.  The second one happened at night and she made me stay home and I decided not tell Dad.  I worried all night.  There was nothing he could do except make me take him to the ER to be with her.  I did tell my brother and if things were to get worse I would get Dad there ASAP.

At the same time I don't want to get so used to Mom going to the ER for tracheotomy issues.  I don't want to assume she will be okay and have something bad happen because I am taking my time getting there.  Mom was the one who told me to stay home so I feel that I was respecting her wishes.  I let her know I wouldn't tell dad and she understood.  But I felt guilty.

There have been some fun things that have happened.  Next to where Mom stays is a take out place called Twisted Pickle.  I drive by it every day and finally I had enough and walked over to try their food.  I did try to look up their menu before I went but it was "under construction".  I decided that I would walk over there and see find out exactly what a "Twisted Pickle" was.

Well, Mom wanted some wings.  Of course she has no cash, there is no need for patients to have cash so she asked Dad for money.  He has a tendency to be purposely funny difficult.  Hmmm, now I know where I get that from.  So he tries to hide his money from her.  She was having none of that and even though they were both in wheelchairs and neither one could walk she "attacked" him and got the money for her wings.  He decided that he would get a mixed sub, he will deny all of this however and insist that he was robbed.

I have tried to find the joy in simple things.  So on one ER visit I found such joy.  The ER has the smallest parking lot I have ever seen at a hospital.  Even worse than parking at college.  It might be large enough for 20 cars.  Everytime I go there I have to get Dad out of the car, into the wheelchair, inside and into the room where mom is.  This happens while my flashers are flashing so no one will hit the car in the tiny lot while I am doing this, because of course there is no parking and valet parking is on the other side of the hospital.

This time after I got dad inside the clouds opened up and as angels sang a bean of light shined on a car backing up and leaving from the seconded closest parking spot from the ER entrance.  I managed to quickly maneuver their minivan into the coveted spot and just about danced into the hospital.  I didn't have to go into the parking garage (I hate it in there I always actually duck my head when I drive in because the ceiling is so low!), I wouldn't have to pay a fee for parking.  Joy in such a simple thing!

Now the absolute best thing that happened this week is my aunt emailed me two photos of my grandfather that were taken before he met my grandma.  These had to be from the 1930's.  He was in the U.S. Army and stationed in Hawaii.  The photos show just how much of a fun guy he was.  I miss him so much, but as the years go by I forget more and more about him.  I only knew him for 15 or 16 years.  The day I found these in my email was the day of the above ER visit and seeing my Grandpa doing the Hula made my day, I hope they make yours too!

Today though we received some disappointing news.  The surgery that Mom needs to get the tracheotomy out has been postponed indefinitely.  The LASER that they need to use, the one her doctor has been patiently waiting for because it travels between hospitals is not working.  They don;t know how long the repairs will take.  Her surgery was supposed to be in the morning and now we have no idea.  All the problems were tolerable because the possible end date was in sight.  Now we have no idea.  I was the one who broke the news to her.  She took it okay but I could tell that she was upset.  I did soften the blow with her treasured thurenger though so that helped.  

While cleaning this week I found a wonderful photo of my parents together.  I am leaving you with this image.  This is how I always think of my parents, happy together and well.  

Wednesday, February 19, 2014

Things i never thought I would have to worry about...

  • Kinks in a catheter tube.  Just like a regular hose if it kinks the fluid can't get through. 
  • What to do if your child hides in the back of the minivan while you are bringing the wheelchair back into the hospital.  I really thought he had run off for a moment.
  • Helping your father put on clean underpants (after you had to fight with him to change the pair that he would have worn to death if I let him).
  • Helpful children who help out by loading and running the dishwasher, but forget to put all the silverware back into the dishwasher.

  • A rehabilitation center, housing people who use wheelchairs to have only four handicapped parking spots in the parking lot and two wheelchair ramps nowhere near the main entrance.
  • My underpants falling off while shopping, luckily my pants stayed on.  I guess I lost some weight! Sorry no pic of that!
  • A cat that garbage picks various items out of the garbage can.  I swear she is part ninja.  She is not as innocent as she looks.

  • Getting a phone call from your Mother and because of the tracheotomy she can't always talk so you can't hear her at all.  So you have her communicate by tapping on the phone.
  • To have your 11 year old have anxiety at school and home so bad it effects his breathing and gives him chest pains.  
  • To have to pick a stop sign up that was blown over by the wind and was blocking traffic.

Be woken up by my father, change his Foley bag and then be told he is going back to sleep, so I have to switch the bags again, then just when I think it is safe to sleep have to convince him that his pants are okay and that they are not running away from him.  I think we both are going back to bed now.

Thursday, February 13, 2014

I Cut the Red Wire

We all have had that annoying beep, the one you can't find, the one that taunts you until you are sure you will go mad!  We have ripped the smoke detectors off the walls and removed the batteries over and over again.  Sometimes however the beep isn't so easy to trace, especially when there are two going on at the same time and you don't know that they are mocking you.

Today the torment began around noon.  I came home for lunch to check on Dad, that is another story filled with blood and gore so I won't go into it now.  After I replaced his foley bag and gave him lunch I heard the beep.  Dad did not and since I didn't have time to hunt it down and it wasn't bothering him I went back to work.

After work I came back home and there was the beep, but Dad was my priority and the blood and gore was worse so to the ER we went.  I forgot about the beeping and just made sure Dad was okay.  The ER made sure he was okay and sent us home with instructions to follow up with the Coumadin Clinic (You know how I feel about them!  That is my new swear word, Oh, Coumadin Clinic!) and the Urology Department.  So back home we went.

As I walked in the door I was welcomed by that beep!  The security system seemed the logical suspect.  It controlled all the detectors.   Yes, there was the yellow triangle taunting me knowing that I had no idea how to make it stop beeping.

A bit of a backstory .  My parents have a security system, that possibly once had instructions to it but now neither of them remembers how to use it and have no idea where instructions are.  The phone number on the door is to another state and when called is answered by a personal answering machine.  My brother and I have called that number various times and of course no one has called us back.  He was ready to rip out the power supply if he had to.

Up until today the system was nice and quiet and caused us no grief, except we didn't know how to use it.  But today there were all the beeps.  Loud high pitched rattle your bones and burrow into your ears beeps.  So I called that number once again and left a cut off message.  As soon as I hung up - BEEP!  SO I called back and a miracle happened, the phone was answered.  It was a human and she was surprised that I didn't have a local number.  Thankfully she gave me that number and the contact person's name.

I called and he called me back and told me how to silence the alarm.  That would have been the end of it too except two alarms were going off, I just didn't know it yet.  I hung up the phone and started to eat my dinner, it may have been after 9:00 but it still was my dinner.  I took a bit of my Reuben and BEEP!  So I called him back.  He had me try different codes.  He finally gave me a master code which should have done the trick, of course neither of us knew about the second alarm yet.

Finally P and I staked out the alarm key pads and figured out the beeping was coming from the dining room.  When I called my new best friend at the alarm company back this was the solution to the puzzle.  The problem wasn't just the security system but he thought it was a carbon monoxide detector.

If you look carefully at the photo you will notice a green light, that means there is no carbon monoxide detected.  Good!  I have had carbon monoxide poisoning and it was a carbon monoxide detector that woke me up and saved my life.  But this detector was not beeping to let us know there was carbon monoxide detected.  It was beeping to let us know that it was dying and would soon no longer be able to detect carbon monoxide.

Now the fun begins.  My new best friend tells me to remove the cover.  He said if I had to smash it with a hammer that is okay.  Luckily it just popped right off.  Though I am sure smashing it with a hammer would have been satisfying.  The detector is wired into the houses electrical system, no batteries.  I just looked at it and wondered how I was going to turn it off.

It turns out that turning it off was not an option.  I had to remove it from the electric supply.  Because there was no battery to remove I had the pleasure of cutting the red wire.  First I tried to pull it out and it wouldn't budge, so finally I got a pair of scissors and snip!  The wire was cut and the beeping finally stopped.

So after a long day of teaching, going to the Emergency Room and hunting down beeping and security personal I finally finished my dinner and took my anxiety meds.  After a day like today I definitely needed them.  Hopefully tomorrow will be a nice calm day.  It could happen, right?

Tuesday, February 11, 2014

I Have to Empty a What?

Three in the morning my brother wakes me up.  They are home from the emergency room.  Dad's bladder after the surgery needed a break and Dad now has a Foley Catheter in to give his bladder some time off to heal.  Not that there is any great time to learn how to use a Foley Catheter bag, but three in the morning after waking up out of a sound sleep is definitely not the best time.  But I did and lost track of how many times I had to tell Dad that he couldn't remove the catheter.  It had to be uncomfortable, but the pressure was relieved and he was feeling better.  He went right to sleep, I tossed and turned for a while and finally went to sleep.  I am so glad that I had the presence of mind to call off of work the next day.  That is one advantage of being a substitute teacher I can choose not to work if I need to.

I picked up my anxiety meds today, so they were no use to me last night.  I luckily had a guided meditation app on my iPad so I used it a couple times and finally I was able to control my anxiety enough to go to sleep.

I was sure Dad would sleep in this morning.  He went to bed at 3 am, no such luck.  7:00 am he was up bright eyed and bushy tailed.  I however was stumbling around because well I did not sleep well.  Add to that the fact that I don't do mornings well and I took a deep breath and started the day.  I got him downstairs and gave him his meds.  He had his breakfast (The same exact breakfast that ha has every morning, how?), a bottle of water, coffee, and drained the bag into the reservoir.  Now I just had to figure out how to empty the reservoir.

The fun part of the day was convincing Dad that the bag and catheter were necessary.  He was convinced it was an open wound on his leg.  Now there was a plus side to this.  I didn't have to guide him in and out of the bathroom over and over again at night.  Plus I knew when I had to run errands he would sit in his chair and not have to get up.  That means less times I have to help him when he gets lost in the house.

The bag was getting more full.  It was fast approaching.  I was going to have to empty the bag.  I got a bucket and took a deep breath.  I studied the locking mechanism and figured it out.  The bucket was in place and I did it, I opened the latch and the waterfall was unleashed.  The bag was empty and Another one of my fears were conquered.  Now I know I can handle it.  He as to do his part, but I think we can do it.  Still February 21 is ten days away.  How many more times will I have to empty it?

Monday, February 10, 2014

The Longest Monday

I am not a fan of Mondays.  Not for the reason you may think.  I love going to work, okay I may not love mornings but they happen every day of the week.  Mondays are the day I get the kids back after they spent Sunday with their dad.  Getting them back into my routine with them is a battle.  They try to do what they want and fight me when I play the mom card.  Luckily it usually only takes Monday to get them back into the swing of things.

Today was a double whammy.  Dad had his bladder surgery.  I was up at 6:15 am (see above to see what I think of mornings) and had Dad at the hospital at 7:01.  I got him inside and had a great parking spot.  Finally after 8 am they finally started getting Dad prepped for surgery.  Then I had to go to the waiting room.  The chairs were so uncomfortable especially with my hip that I went home for a short bit.

I spent the morning trying to find my parents security company.  I am convinced they don't exist.  I finally found their address and back to the hospital.  Since his surgery was supposed to be at 8 am and I knew he wasn't in at 9 am, I thought maybe by 1 pm his surgery would at least be started.  I walked in and found out that he still was waiting.

Then I spent the afternoon dealing with my ex, figuring out income taxes, trying to find a comfortable way to sit in those chairs and arguing with a Coke machine.  Still no Dad.  This was worse than any other Monday that I have felt with in a long time and the kids aren't even home yet.  Oh I was hungry.  I hadn't eaten much but I was told if I wash't in the waiting room the doctor  wouldn't tell me how the surgery went.  So I waited and waited and waited.  Finally when it was almost 5 pm someone came in and told me that Dad was back upstairs and getting ready to go home.  WHAT?  Where was the doctor, why didn't anyone come get me?

So I managed to get the doctor to come back and they removed 5 polyps from his bladder.  Dad was disoriented like her usually is when he goes to sleep and wakes up in the middle of the night.  Luckily my brother was there to help get him out of the hospital.  We got McDonalds on the way home and dad almost inhaled french fries on the way home.

Oh the evening was barely started and the kids came home.  Dad was grumpy and I was sleepy (I guess we were two of the seven dwarfs) and hungry.  I was about to eat when Dad threw up.  A wonderful side effect of the anesthesia.  So began my evening.  Dad is in the bathroom, B is running back and forth, upstairs and downstairs.  I was getting dizzy.  The only blessing was that P was quiet and out of the way.

Wait, P was being quiet, he even helped me take out the garbage.  Not only that but he gave me an unsolicited hug.  I'm not going to rock that boat.

Then Dad decided that he wanted to go to the Emergency Room.  I am pretty sure he is just feeling the side effects of the anesthetic, but who knows.  He can be so stubborn and he thinks that I am going to let him take a cab to the ER.  Does he not know how stubborn his daughter is?  I am his daughter after all.  I had custody of his wallet and hid the phones, there would be no cabs on my shift.

My brother came and took him to the ER, during all this B, has refused to go to bed.  She keeps telling me that she "just needs one more thing"  I am so tired and cranky and it is Monday and I just want to go to sleep.  Don't worry she is okay, but she is confined to one room and had better be going to sleep.

Now it is 11:13 and I am waiting to hear how Dad is.  I am sure it is going to be a long night but Monday is almost over.  I just hope that with the arrival of Tuesday some routine comes back.  The kids settle down (okay just B), Dad is feeling better, I am more awake and maybe even get a good nights sleep.  I am looking forward to this Monday being over.

Sunday, February 9, 2014

So Many Worries

Tomorrow I need to get my father to the VA hospital at 7 am for bladder surgery.  He has bladder cancer.  He has had it for a long time and it seems more of an annoying cancer than deadly.  Of course that can change.  Every year or so he needs surgery to remove growths from his bladder.  No chemo, no radiation, nothing like that, just surgery every so often.

Of course usually Mom is the one who deals with this.  I only know what I have been told and I found out accidentally.  So I am sure there are things about his cancer that I don't know.  Dad is not a fountain of knowledge on the subject.  Then again he might be but just can't tell me what he knows because he can't get his brain to allow his voice to say the words he wants to say.  Mom can barely talk because of the tracheotomy so it is hard to get information out of her right now.  I wasn't prepared to deal with cancer, then again I wasn't prepared to deal with my mother almost dying five times.

Dad has been out of sorts these last few days.  I know the surgery is on his mind.   He has been getting ready for it for a week now.  Usually he doesn't know what day it is and thinks he needed to go to the hospital for the surgery over and over again.  He has been having more trouble sleeping than usual.  Today he came downstairs after bed to see if I knew his ID number for the VA.  He couldn't remember if he had the number right.

I am worried that I will over sleep.  I don't wake up well, I don't do mornings well.  If I could sleep all day I would.  Maybe I should stay up all night.  Probably not, I am sure driving on the snow covered roads while falling asleep isn't the best idea.  Of course that is just the beginning of my worries.

This is a surgery, he will be put under anesthesia and there is always a chance that he won't wake up.  I made sure to take him to visit Mom today, just in case.  Ugh, I hate even thinking that.  But one thing I have learned in the last few months is in the blink of an eye life can change.  The wind can knock a person over and cause a cascade of one health crisis after another.  A surgery can not go as planned.

Of course the house is quiet tonight it is my ex's night with the kids.  So my mind can easily dwell on all the bad that can happen.  I wish the kids were her to distract me a little.  I almost brought B back home because D was yelling at both kids and she claimed to not know why.  I tried to talk to him to find out what was going on, but he refused to speak to me.  Sometimes he can be just as bad as a pouting child.  So I don't know what was going on.  She wanted to come home and if I didn't have to take Dad to the hospital so early I would have gotten her.

So many worries and I try to focus on the good, the fun and the happy.  I had a visit from a friend today.  We grew up on the same block.  She helped me do some deep cleaning because my hip has been preventing me from doing a lot.  It just doesn't prevent me from worrying!

Some Fun in the House

This last week my father has been more fun than usual.  He thinks he is funny anyway.   I wish I was carrying my camera with me because he definitely has been doing silly things.  I guess this is the cute side of having a parent that you need to care for like a child.  It is my reward for being woken up every 1 1/2 hours by him some nights.

Of course it is during these late night disturbances that he can be his silliest.  I do all I can to ensure his privacy.  There are things I don't need to see, and if I have seen them that does not mean I want to see them again.  So I have gotten very good at looking up and making sure doors or curtains are closed.  My parents don't have a door on their bathroom upstairs.  Instead they have a set of curtains on a curtain rod so he can get in and out of the bathroom from his bedroom and not bump into the door.  Did I mention the curtains are a bit on the sheer side?

I have gotten pretty good at directing Dad out of his room, into the bathroom, and back to his bed.  While he is in there I stay nearby because I know he has to get back to bed (because I want to go back to bed).  Last night he called me while he was in the bathroom.  First question I asked was "Are you zipped up?"  "Yes."  So I opened the curtain.  There is my 78 year old father with his thumb on his nose and wiggling his fingers in the air.  He was giggling and I swear he was dancing while doing it.  Silly!

Of course some of the silly things are because he can't see or because of the strokes he had last year.  He isn't trying to be silly but he sure appreciates the humor after the fact.  One day he called me all upset because he couldn't figure out how to put his pants on.  First thing I noticed was that he already was wearing pants.  Why was he trying to put another pair of pants on.  I tried to explain this to him but he was bound and determined to put those pants on.  Sometimes it is just easier to let him try and then steer him in the right direction after he realizes that it won't work.

I showed him where the waist was and where the legs were.  Then he took the pants and started to put his arms in the leg holes and put them on over his head.  Yes, my father was trying to wear his pants as a shirt.  Now I understood his problem and could get him a shirt.  Then Dad understood what he was doing and laughed so hard that it was several minutes before he calmed down enough to put the shirt on.

Today he was having trouble with his words.  Sometimes he gets frustrated and gives up.  Sometimes I can figure it out and steer him in the right direction.  This time I was perplexed.  Eventually he managed to get what he wanted to say across but this is how it went.

Dad: "You need to go to the store."
Me: "What store?"
Dad: "The store where they sell men to women."
Me:  "The what?  They sell What?"
Dad: "You buy the men."

Now I want to know where this store is?  Of course I need to know their return and exchange policy.  Finally through some questions while I tried not to laugh I found out that he wanted a bag to carry his meds around.  Once I knew what he wanted he understood what he had said earlier and I am not sure who was laughing more, me or him.

We do have some fun in the house.  Some of it is planned but a lot of it is spontaneous and just pure silliness.  We have to be silly so we don't focus on the bad.  Embrace the sillies!

Thursday, February 6, 2014

When It Rains It Pours!

For the last few weeks at school, when they have had school that is, P has been getting regular asthma attacks at school.  Only at school and only at a specific time.  The regularity of it worried me, the timing worried me and the fact that it didn't happen out of school peaked my interest.  He wasn't faking, he was definitely wheezing, the school nurse confirmed it.

My ex was the one the school kept calling.  He would call the doctor and call me.  I felt a bit out of the loop.  I usually take the lead with medical issues.  Usually because I can explain things better and pass along a message clearly.  But with me at my parents house I was not around to take care of my children's medical issues.  I was taking care of my parent's medical issues.

Still the "asthma" attacks nagged at me.  This week started out with another asthma attack.  As usual the meds didn't work and the symptoms eventually went away after a couple of hours.  Usually after school was over.  That night P came up to me and asked me if he had to go to school the next day.  If he goes to immediate care and is kept out late sometimes I would keep him home.  Especially if he didn't get much sleep.  However in this case he was home before school let out and staying home wasn't an option.

He begged me to let him stay home.  He pleaded with me and told me how scared he was about having another attack.  I don't blame him there is not much scarier than not being able to breathe.  My mom just went through that with an obstructed trachea.  She ended up needed a tracheotomy.  He was in tears and there was real fear in his voice.  He clung to me with a death grip.  He wasn't being silly and this was not fake.  He was afraid to go back to school.

The next day I called his pediatrician and made an appointment for him.  This was more than asthma. I was sure he was having anxiety issues.  I had no idea how bad it was though.  Luckily I was on the right track.  Luckily I made that phone call and luckily I told my ex that I was taking P to the doctors and I was taking an afternoon of work off to do it.  He didn't think it was urgent and didn't want to pay the copay.  I would pay the full amount for the visit if I had to.

The appointment was for the next day.  That day I also found out that P had failed English last quarter  of school.  He wasn't handing in his assignments.  He was misplacing textbooks and assignments in school.  His teachers were concerned and now I was too.  I was almost in tears.  The last few months added to this was about all I could take.  Still I was at work and I had to pick up the kids from art.  Back to the real world where I had to act like everything was okay and teach some math and reading.

That night I was mad!  My dad went to bed and P asked to watch TV.  Seriously I find out he is lying to me about homework, and failing English.  NO!  No, TV for you!  He is in tears and screaming at me, telling me how much he hates me (to which I always reply that I love him) and that I am the worst Mom EVER!!!

Even after I went upstairs I could hear him crying and I remembered what it was like when I was a child and I thought my parents were the worst and how alone I felt when that happened.  Of course I went back downstairs and called him over to the couch.  He sat next to me and I hugged him, just a tight hug and told him that I loved him.  That was exactly what he needed.

Before I knew it he was telling me that he couldn't handle school.  He had three locker combinations to remember, he couldn't remember which binder was for each class, where all his classes where, who his teachers were, what his homework was, what he needed to hand in to whom, where he needed to go after school, what house he would go to, when would he see Dad, when would he see me, what items were at each house...  He is in sixth grade.  He was overwhelmed and I think almost ready to pop.

To hear your 11 year old say that he can't handle school over and over again and to know from to quiver in his voice and the uncontrollable sobbing that this was real was almost more than I could handle.  I listened to him and told him I would do anything I could to help him out.  I held him and let him cry in my arms for two hours.  I made sure I was there for him and I was so glad that I made that doctors appointment for the next day.  Even the next morning when he went off to school and I saw the fear in my eyes I knew that I was on the right track to finding a way to help him.

Right off the bat at the doctors office I told P's Pediatrician that I thought it was anxiety and he immediately aground with me.  He picked up on the fact that my ex was not someone who understood anxiety or how it can effect the body.  He had no idea.  Yes, my ex was fired by our psychologist.  I had already called my psychologist, who had helped P before his diagnosis of Asperger's Syndrome.  I also had emailed (it bounced back), called (I was transferred to another extension) and walked into my son's school psychologist office to let him know my suspicions and to see if the school could help P out.

Everything I had done was exactly what his pediatrician wanted me to do.  He was hoping P could be seen soon by the psychologist, luckily I was going there that night.  It had been a few years since I had last gone, but my world has abruptly changes these last few months so I gave him a call.  HELP!!

He also agreed with me and because he can't get P in for at least 4 weeks he refereed us to another practice.  P needs help now.  Of course when I told D about all of this he heard it with reservations.  He wants nothing to do with the mental health services.  I hope that P doesn't pick up on that.

That night P offered to do the dishes, not something he usually does.  He was so loving and snuggly and happy.  He knew I had spent the day starting the process to get him help.  I listened and let him talk.  I didn't over react and reassured him.  Still I couldn't help but think, "When it rains it pours!"  How much more can I take?   Luckily I called my psychologist and I think I am going to need him!

Wednesday, February 5, 2014

One Proud Mommy

Ugh!  I was about to go to bed and noticed the empty milk carton on the counter top.  I purposely left it there so I would remember to buy milk today.  It probably would have worked if I had stepped foot in the kitchen for any length of time.  But the day was full of doctor visits and chaos, not much time for cooking.

I had to get milk, luckily the snowfall had stopped.  That is why we didn't manage to visit Mom today.  It took me almost 45 minutes to cover a distance that usually takes 15 minutes.  So I scrounged up some money (pay day seems to get further and further away) and told the kids I would be right back.  It is nice having another adult in the house so I can run these errands at night without having to bundle up the whole lot of us.

I bought the milk and back home I went.  I was only gone long enough for one song to play from my iPhone.  When I came home P came up to me and told me that he did dishes.  I never thought I would hear those words come out of his mouth.  I did what any mother would do in that situation, I went to look.

He tried to block me, telling me that he was about to but I came home to soon.  Better yet he really did them.   He also did an okay job.  He emptied the dishwasher, put the dishes away in the right places.  So, indeed I am one happy and proud mommy tonight.

My ex has always fought me on having the kids do chores.  He would actually be upset when I encouraged to do the dishes when I was still living with him.  He would only force them to clean when a mess they make becomes inconvenient to him.  He expected me to do all the cleaning and made sure I knew it.

Even now that I am back in my parents house he gets upset that I have the kids do chores and help out around the house.  They complained to him that I have them get Grandpa food and drink.  D actually called me and told me that he didn't like the kids being a butler to their Grandfather.  I should be the only one doing that.  Then of course he told me that I am not capable of helping my Dad and I would kill him because I had no business giving him his meds, including his insulin.  He told me that only a trained medical professional should be giving him all his meds.

Now that we have separated, I don't even respond to these accusations most of the time.  I tried that when I lived with him but he would sometimes get so mad that he would lie on top of me, pinning me down and screaming in my ear because he wanted me to answer him and he wanted an answer to satisfy him.

Since we separated he has called me a few times to complain that the kids would make a mess at his house.  Where was he while this happened?  He was sleeping upstairs.  Then he would ask them to clean it up, which they really don't know how to do because they never have to do chores.  Of course they didn't clean up the mess.  Why?  Because he went back upstairs to sleep.  He has a job so he needs to sleep.  He makes more money than I do so his sleep is more important than mine.

Here they have chores, here they are expected to help keep the floors clean so Grandpa won't trip.  Here they are expected to put food away when they take it out to make a sandwich or a snack.  If I ask them to do something more often than not they do it.  Why?  Because I supervise them, I show them what to do, I make sure they understand what to do and can do it, I help them when they need help.

Sometimes they offer to do chores on their own.  Like tonight and when that happens I am one proud mommy!

Tuesday, February 4, 2014

It Isn't All Bad!

Yesterday Dad and I were talking and all of a sudden he sighed and looked at me.  He said, "You must have had a great Dad!  You are such a wonderful daughter!"  I laughed and told him that he was my dad and of course he was a great dad (Well, we had our issues during the teen years and we are both too stubborn for our own good.  Plus we push each other's buttons often, but that is besides the point!)

He said, "No, I'm not the Dad who raised you, not mentally anyway."  I almost cried.  He knows that he can't do much.  He knows he can't always verbalize what he wants to say.  He knows so much of his world has changed, but it is the world in his brain, not the world around him.

I am so glad we have this time together and that we still have things we can talk about.  I love hearing the stories from long ago that he can remember.  He told me a story last week about my Mom having to be held back so she wouldn't beat up another woman who was trying to make a play for Dad.  He described the people in detail and I could see it in my head as he told the story.  Mom was having none of her moves and was going to get her.  We visited Mom after lunch and I told her about the story and she made a fist and punching motion.  She still was having none of that.

The Great Coumadin Adventure

Dad has to change his meds because he is having surgery.  One of his meds is Coumadin, which keeps his blood from clotting so he doesn't get more strokes like last year.  But he also has "mild" bladder cancer so periodically they need to remove growths from his bladder.  When he has surgery they need his blood to clot, but still want to avoid strokes so the Coumadin Clinic at our local VA Hospital changed his meds for the week before and the week after his surgery.

They mailed them to us, pre-filled syringes, big nasty looking spring loaded syringes that I have no idea how to use. Syringes on steroids!  His dementia is getting worse so there is a real possibility that I might have to give him these injections.

Last week we are at the hospital and as we went from appointment to appointment they all told me the Coumadin Clinic could help me learn how to give Dad the injections just in case. So when we were done with all appointments I went there (to the infamous Coumadin Clinic) with Dad and he told me no one is ever there. I didn't believe him.

But I walked into the clinic and it was a ghost town, lights behind the windows were off. The people waiting said no one was there. So I went to find someone. No one was there anywhere.  When I found someone in a room with an open door, she was upset because she was with a patient and I interrupted them. (If the door was closed I never would have knocked) and she assured me that someone was in the clinic.  I said, no, I looked and tumble weeds were blowing through the corridors.  Nope, she was sure they were and walked me back to the ghost town.  Surprise! No one was there and she then directed me to pharmacy. They could help me, she was sure of it.

The woman at the pharmacy window said of course a pharmacist could help me. She walked me up to a pharmacist and explained everything. Then I was assured I would be shown how to use the evil looking syringe when she was done with something.  I stood there, in front of the pharmacist where I was told to wait while she finished up on the computer.

She finished and made a phone call to the Coumadin Clinic, then somewhere else. She hung up and looked at me and said there was no one in the Coumadin Clinic. If I could have shot her with LASER beams from my eyes she would be dead now. I said I knew that and I was told (in front of you and I know you heard it too because there was a conversation that included you) that she would help me. She said no I would have to wait a half hour for everyone to come back from lunch.

I had the good sense to push (Dad was in a wheelchair so it is okay that I pushed him) out of the hospital and got to the car before I screamed and lost it.  I managed to get him to put his coat on and had him wait inside while I got the car.  I had the best parking spot.  I could have easily pushed his wheelchair to the car but I needed to vent.  I unlocked the door, slammed it and screamed at the top of my lungs before I even put the key near the ignition.  That helped!

Next I found a Celtic Thunder song I liked and turned up the radio real loud and I sang along to the song also very LOUDLY!  I think I did three or four laps around the parking lot before I picked up Dad.  I was seriously mad and needed to calm down.  It almost worked.   If the bus hadn't cut me off on the way to lunch and visiting Mom I would have been almost perfect.

The best part of this story is the next morning the Coumadin Clinic called me on my cell phone.  They apologized for not being there and assured me that they almost always have people staffing the clinic. I guess it is just a coincidence that when we go there it is a ghost town.  I set up an appointment to be trained on the following Monday and luckily when I went in there were people there.

I now know how to use the syringe, plus many friends offered to help me if I needed help.  I am nervous, I need to get these meds right.  I need to get him to surgery and back to the Coumadin Clinic after surgery (they had better be there!) and then home.  This is the first time he will have this surgery without Mom there to wake up to.

Saturday, February 1, 2014

1:26 AM

Today It is the early morning, almost exactly one week since I sprained my hip helping my father stand up after he got lost in the front room of our house and fell.  The familiar cry reaches my ears, L, L, L, my dad is calling me and it finally happened.  He is standing in his room with his pants and underpants around his ankles.  He has, to put it politely, soiled himself.  

My saving grace is that he is standing next to the walk-in bath tub my parents had installed in their bedroom.  Their house is tricked out in mobility accessories.  There is the ramp to get in the house, the chair lift to get them up stairs, a half bath downstairs, walk-in bathtub, more walkers than people living in the house, assorted canes here and there, two wheelchairs, a scooter (maybe two) and for good measure a crane installed in their Bluetooth, rear view, miles to empty gauge van.

My problem is anytime he sleeps for an extended period of time his dementia goes into overdrive.  He knows to call me, which is good.  I don't even want to think about what will happen when he forgets I am here to help him.  As expected he is unaware of his suroundings.  It takes almost five minutes to get him to walk the four or five small steps into the tub.  Then I have to get hi to sit on the seat, take off his clothes and wash himself.  The hardest part is getting him to turn around so he can sit down.

To make matters worse he is having a bad hearing night.  Though I think he hears more than we realize.  I tell him to take his socks off and he thinks I want hi to take the seat off.  Finally I get him into the tub and his clothes off.  I manage to do this while averting my eyes.  I am sure a point will come when I can no longer be polite, but we are not there yet.  

Of course I took my pain pills before bed and I am a bit groggy so I forget to plug the drain.  Oooops.  So I have to basically start fresh again and fill the tub up.  It takes forever to fill up, more than 30 minutes.  

He does not want to take a bath and tells me to just shoot him.  It must be awful, that period of time between independence and knowing what is happening around you to depend acne and not knowing that you are so dependent on someone else for things we take for granted like being able to get to the bathroom on time, knowing how to get from room to room or just taking a bath.

It worries me that he talks about dying so much.  He is starting to give up.  

We spent the day in the ER with mom. Her platelets were low and she needed a blood transfusion.  Yesterday she was sitting up and talking.  Looking amazing and peppy.

Today she was so pale and tired, barely able to hold dad's hand.  I just hope she also isn't giving up.  She has always been so full of life.  She has always been the one we all went to for strength.  She was our stability.  She is his world and he is hers.

Now it is almost two in the morning.  All I want to,do is sleep.  My meds have made me sleepy but I am afraid to leave the room.  It is like having a baby again.  I can't leave him unattended in the tub.  I am afraid I will find him still in the tub in the morning, I'm afraid of him opening the tub and water going everywhere, I am afraid that he will fall asleep and just slump under the water and drown.

He still is fighting me on washing himself, but he needs to clean himself up or I will have to do it.  I will do it, but I don't want to.  The tub still needs more water in it.  I am so sleepy but I will somehow stay awake and make sure he is clean.  

I need a break, I feel guilty for even thinking that or uttering the words out loud.  I am going out tonight to see Ryan Kelly and Neil Byrne from Celtic Thunder.  I have had the tickets for months.  I have been looking forward to it and it has been happy place.  Now that it is almost hear I am afraid to go.  My brother, S, will be here to take care of Dad.  Still I feel guilty.

He tells me that he is going to drown.  I tell him that hewon't, but does he believe me?  I wish he would wash himself off.  I wish he wouldn't need to wash himself off at 2:11 AM.  I wish Mom was well again and home.  I wish when I call my ex to tell him that my mom is back in the hospital and he needs to pick up the kids that he would not yell at me because he needs to sleep.  I wish when my ex calls to see if the kids can come back to my house that he won't hang up,on me and call me names because I am still in the E r with my mom.

I wish that 1:26 AM was just a minute that Dad and I slept through like any other.