Thursday, October 24, 2013

Moments and Memories

Other Brother sent me a link to our dad’s house which is now for sale by the bank. Seeing just a few pictures of the house brought back flashes of memories of time spent at the house.  We didn’t grow up there – it was a house Dad had bought when we were all grown and he was marrying his third (or was it fourth?) wife for the first time (he married and divorced this same woman twice).

Dad's porch
Dad was Willy Loman, Rich Man/Poor Man and Jack Nicholson rolled into one.  His fortunes were always most certainly followed by losses so great he would call me for cigarette and Diet Pepsi money.

When Dad’s time ran out, his money had already run out months ahead of him. 

His house went back to the bank; his possessions were sold to help offset the cost of his funeral and the rest was either tossed or given away.

The pictures of this modest house which had been in a state of disarray when Dad died showed the bank had invested in new paint, new roof, new carpet and a bit of landscaping.

It didn’t look half bad.

The pictures also showed an empty house but with each click my mind filled in the blanks.

The kitchen was bright and cheery and probably didn’t smell of smoke since the drapes had been removed.  The dead plants in the corner near the sink could only be seen by me. 

His 20 year old refrigerator would have been filled with orange juice, Diet Pepsi, hot dogs, a mostly empty ketchup bottle, A-1 Sauce and leftover cooked noodles. Sometimes cans of beer and half empty bottles of wine. 

His freezer would have been packed with frozen meals, vegetables and meats and a variety of ice cream treats. The outside of the fridge would be covered with pictures of the kids and grandkids and their drawings as well as pictures of the children of a much younger woman who was only around during the times of fortune.

The cupboards held several years of Girl Scout cookies, cereal and crackers – mostly all expired.  The counters and stove were covered with a thin layer of grease, only removed when I visited since he had fired most housekeepers in town and those he hadn’t fired, knew to stay away. 

Birthday cakes had been cut and served on the island as had a Thanksgiving turkey or two.  On one of his birthdays, Dad had sat in a kitchen table chair and was adorned with a crown, a cape made from a blanket and confetti sprinkled on him by two of his young granddaughters. And then ventured out to a restaurant – still in costume – much to the delight of the girls.

The rest of the rooms of this empty, bank-owned house brought back as many memories.

In the family room, more pictures of the grandkids sat on the fireplace hearth and Christmas stockings hung half of the year. We got Robert settled on the couch after Dad’s funeral and he worked on his Word Search while dad’s older brother sat protectively next to him.

The living room was where Dad had sat years before telling me the FBI was spying on him; where he would sit and read or watch his gigantic television crammed into the little room because he thought the cable reception was better. It is also where Richard, Rachel and I found him only half awake and completely confused when his kidneys were failing him, only hours before he died.

This was also the room where his brothers and sister and Other Brother and I hung out, looking through pictures and telling stories after Dad had died.  

The front porch had been fixed and had a fresh coat of paint on it. Dad would call me from the front porch and tell me how he liked to put on his pajamas, lay down a blanket and sit on the porch watching people go by. I pictured him with his Diet Pepsi, cigarettes and wearing only his sweat pants staring at people as they walked by and wondered how long it would be before the police showed up.

This house held a few weddings – one or two of dad’s as well as that of Robert’s.  Robert was a young man in his twenties when he married a woman (who later turned out to be a thief) but on that day, Robert was happy. His smile was broad and he looked sharp in his tux. Other Brother and I were amazed at our little brother getting married since neither of us had thought this was in the cards for him. His marriage didn’t last much longer than the honeymoon but I will never forget the smile on Robert’s face before he went into the backyard to say his vows.

For a house I never dreamed would mean anything to me, it has filled my evening with memories of both good times and bad.  A few pictures of a non-descript house has filled my heart with love for a dad who was both exasperating and fascinating and who loved his family with all of his heart.

These few pictures have made me smile thinking of my daughters who are thoughtful and funny; brothers who I adore with all my heart and aunts and uncles who are thousands of miles away but as close to my heart as you can get.

The bank may get the house and they may recoup their investment since the market is improving but these memories – they don’t get those. 

Those are mine to keep and to remember with just a glance at a picture or two.

Sunday, October 20, 2013

I Never Thought I Would . . .

It’s hard to believe my caregiving for Robert started five years ago. Before I became involved, our dad helped him with his finances.

Mother-in-law, Carol, with Robert

Which means when I took over caring for him I had to fix a lot of financial issues.

Caregiving for Robert has kind of crept up on me.

It started one Thanksgiving with Other Brother and I dealing with a homeless woman Robert and his companion brought home and who gave Robert a black eye. Around this same time, Robert was battling an infection and he was hospitalized a couple of times.

Other Brother visited him since he worked in the same city as Robert was hospitalized and I was in contact with his medical team.  Once he was discharged, I took Robert to a couple of doctor appointments. The infection kept returning and became life-threatening.

Then it was an avalanche of caregiving: a trip to the emergency room; emergency surgery; several weeks of IV antibiotics; discharge to a Skilled Nursing Facility; move to an Assisted Living Facility; a few more hospital visits – and that was all within four months.

Five years later, Richard (hubby) and I are caring for Robert full-time while he lives with us.

It is hard to believe all this has happened in five years.  It is also difficult to believe the things I do now that I never thought I would. 

This can only mean one things: it’s time for a list!

Before caregiving, I never thought I would . . .

  • Be caregiver to Robert;

  • Have a husband who was willing to help care for my disabled brother;

  • Know so much about epilepsy (even though Robert has had it his entire life);

  • Be strong enough to discuss Robert’s care and treatment options with his doctors;

  • Be strong enough to stand up to an emergency room nurse who was giving Robert the wrong medication;

  • Do so much laundry!;

  • See Robert using a walker;

  • See Robert making nurses laugh out loud with his jokes;

  • See Robert live to middle-age;

  • Spend more time with Robert than I do Other Brother (who I am much closer to);

  • Be able to pronounce the slew of medications Robert is on. And be able to recognize them by sight;

  • Mix water and juice with a powder so that it is “nectar thick;”

  • Have so much Rocky Road Ice Cream in my freezer;

  • Teach Robert how to be patient with a puppy;

  • Give Robert a bath;

  • Clean Robert after an accident. Every day. Sometimes several times a day;

  • Watch my husband do the same;

  • Enjoy Family Feud and Jeopardy as much as I do (shh! Don’t tell!);

  • Know enough about Skilled Nursing Facilities and Assisted Living Facilities to help others;

  • Did I mention all the laundry?;

  • Wonder so much before going out if there will be an accessible bathroom;

  • See my non-affectionate brother, Robert, hug my daughter when she visited recently;

  • Wonder: Hey! Where’s my hug?!;

  • Be a published author of a book about caregiving and family;

  • Be an author of several articles on caregiving;

  • Keep such an eagle eye on a cough and congestion – willing the bacteria to stay away;

  • Make so many new friends who are all caring for someone with compassion and love or helping those who do;

  • Give up my family room and downstairs bath to accommodate Robert;

  • Slow down enough to let Robert participate in a conversation and answer questions;

  • Fill so fulfilled from doing something I never had planned to do;

  • Watch a beautiful friendship develop between Robert and my mother-in-law, Carol;

If you are a caregiver, what is something you never thought you would do?

Monday, October 14, 2013

Robert’s Sister Goes to the Movies: World War Z

On a recent weekend evening, Richard and I found ourselves caught up on the recordings on our DVR; the new season of our other favorite shows hadn’t yet started and no one was in the hospital.
Image credit: Amazon

Plus, we needed a distraction since Breaking Bad was down to the last episode or two and it wasn’t yet Sunday night. (Boy, I miss that show!) 

We decided to watch a movie and settled on World War Z. We hadn’t seen it in the theaters and it was available to rent right from our television. Not having to leave the house is an extra bonus for tired caregivers – goodness knows, I have been to CVS way too often lately in my sweats.

I hadn’t heard much about this movie but knew Brad Pitt was trying to save the world. That was just the sort of mindless distraction I needed!

Robert was settled in bed watching as many episodes of Family Feud as possible while simultaneously doing his word search puzzle.

I ran upstairs, grabbed the video monitor and set it on my bed to keep an eye on Robert. I snuggled in and the dogs followed suit: The puppy at my feet and Oz by my side, his head on my lap. Richard was standing doing his back stretches.

Oh crap, I forgot the cat.

Since Taz (The Crazy Puppy) is way more interested in Milky Way than Milky Way is in Taz, I wait until Taz turns into a Sleepy Puppy before giving Milky Way the all clear to come in and snuggle. 

“All clear” as in, I move Oz’s head off my lap, move the video monitor out of my way, get out of bed and go to the bedroom down the hall to get Milky Way. If I’m lucky I can sneak back in bed without Taz waking up and Milks can lay on one side of me, Oz on the other.

Okay. Now I’m ready.  Start the movie!

Oh, wait. I need some water. Hmm.  If I wait, Richard should be going downstairs any minute to get some water or a snack.

Waiting. Pet the cat. Pet Oz.  Rub my feet on Taz.

“I’m going downstairs. Do you want anything?”

Why, yes, honey! Thank you!  Could I have some water, please?

Richard returns upstairs with a bottle of water for each of us.

Time for the movie!

The alarm on my phone sounds. Argh! It is the last medicine time for Robert.

Okay, Milks has to move and I get up and go downstairs. I walk into the kitchen and Robert enthusiastically says, “Good evening, Trish!” (As if he hadn’t seen me for a week.)

Good evening, Robert! Here are your meds. It’s Saturday so you can stay up late watching TV if you want.

“Yes. Tomorrow is Sunday. I want to watch church.”

Yep, church will be recorded so you can still sleep in and watch it any time you want tomorrow. 

“Thank you.”

Okay, I’m going upstairs to watch a movie with Richard.

“Good night and God bless you.”

Good night, Robert. God bless you too.

“Tell Richard good night and God Bless Him too.”

Okay, hon. Good night.

“Tell Richard I love him.”

Um, okay. (What am I? Chopped liver?)

Love you, too, Robert.

“Love you and good night, Trish.”

There we go.

I’m starting to think I live in a house with John Boy.

Up the stairs I go, move the cat, crawl into bed, put the cat back down, scoot Oz over since he’s encroached on my space and yank the covers out from under him.

Now I’m ready.

I don’t know what to expect from “World War Z” other than Brad Pitt saves the world. I wonder what he is saving the world from and assume it is probably aliens.  The world is always in jeopardy because of aliens.

The movie starts with Brad Pitt in family-man mode which, for whatever reason, I find completely unbelievable.  I realize he has about 110 kids with Angelina Jolie but I think his portrayal of “dad” is unrealistic.

While mulling over why I don’t think Brad Pitt plays a realistic dad, I soon realize why the world is in jeopardy.  And it’s not helping the movie be any more realistic.

It’s because of Zombies. 

Ohhh, so that’s what the “Z” means! Gotcha. I get it now.

I’m going to have to let the “realistic” expectations go and just see where this movie takes us.  The problem I foresee is I am not much of a zombie fan or horror fan nor do I like to be scared. I do like suspense movies so decide to give this a chance. 

Plus, I kind of like that zombie in the phone commercials.  This could work out okay.

The movie was a little on the gross side but there was a lot of action and suspense. There were even a few heartwarming moments and one terrific (and terrifying) scene with Brad Pitt trying to outwit Michael Jenn playing a zombie in the World Health Organization lab. Wow. That guy really knows how to make a zombie seem realistic and disturbing. The teeth chattering alone was bone chilling.

I get the creeps just thinking about it.

The movie was surprisingly enjoyable and definitely kept me on the edge of my seat (or that could have been Oz stretching out and scooting me off the bed).

This would be a fun movie for caregivers and carees to watch together to see if the “Zs” take over the world. (And, no, I will not give away the ending!)

I do not recommend anyone watch this movie alone. (Advice that, sadly, comes a few days too late for my poor daughter.)

Surprisingly (probably only to me), the movie is rated PG-13.  I say surprisingly because I am easily scared but realize not everyone is such a scaredy-cat.  

“World War Z” was released in 2013 so it’s too soon for the purchase price to drop but if you like to be scared and watching zombies is your thing, you can purchase it for $16.99 on Amazon. We only paid around $4.99 for the rental which was just perfect for a movie night at home (where I can wear my sweats without worry). The teeth chattering zombie scene alone was worth the price!

“World War Z” gets three out of five scoops of Rocky Road Ice Cream from Robert’s Sister. Which actually sounds pretty good right about now – I need some help getting the images of those zombies out of my head. 

Thursday, October 10, 2013

When Doctors Don’t Agree

It is such a dilemma for me when doctors suggest new medications for Robert.  My first inclination, after careful thought and consideration, is:


See how reasonable I am? 

It is true that Robert has tried a variety of medications throughout his life.  Some have helped and some have caused horrific side effects (from behavior problems and depression when he was a teenager to causing balance problems and falls). 

Before I took over Robert’s care, Robert was willing to try any medication offered by the doctors. He even participated in clinical research which studied medications not yet approved by the FDA. 

By the time I took over his care which was almost five years ago (can you believe it’s been that long?), Robert was on a strict regimen of medications and had been for quite some time. His doctor and I were concerned he was not remembering to take his medications when he was supposed to which was one part of why I felt he could no longer live on his own. 

A few years ago, his new neurologist suggested trying a new medication. Unfortunately, this was met with disastrous effects, including a trip to the hospital because of a bad fall and a scolding by my dad and Other Brother about how I should never change his medication.

Oh good.  I get to take care of Robert, make difficult decisions about his care and then be judged when those decisions don’t turn out as planned.  Okay, I get it.

But, I’m over that difficult incident.  (Obviously.)

Robert was immediately taken off of that new medication and I have rejected every suggestion of a new anti-seizure medication since then.  

However, occasionally, Robert’s doctors will have to add a new pill to his regimen that is not an anti-seizure medication (thyroid medication, for instance). Robert is on Depakote (500 mg/3 times a day) and this can cause his ammonia and valproic acid levels to increase which can make him tired and foggy headed.  The neurologist added Levocarnitine to his litany of medications in order to keep these levels down.

Robert also sees a Memory Specialist who would like him to start taking Lactulose in order to get the ammonia levels down even more. He suggested this a year ago and, once he explained the medication to me, I balked.

Robert was living at New Home at the time and Lactulose basically flushes everything out of the system, including anti-seizure medication.  The timing of giving the Lactulose is critical.  I had zero faith that New Home could adequately manage this new medication.  I felt Robert was at risk of great harm if I started him on it.

I talked to the regular neurologist about my concerns and he agreed.  Do not give Robert Lactulose.

This past June, Robert saw the Memory Specialist again who was not very happy that we hadn’t started him on the Lactulose.  I explained my reasoning and he seemed to understand that I didn’t just go rogue on him. 

However, since Robert was living with us, he thought we would be able to better manage the medication and said he should start taking it. 

I was still not happy about adding this medication.  Selfishly, part of my reluctance was because of what it causes: smelly poop.  After Robert’s April hospital stay, he became occasionally incontinent with his bowels. 

Call me crazy but I was not that excited about trying a new medication that would make more of a mess. 

We checked his ammonia levels over the summer and after his September hospital stay and they were on the upswing. His primary care physician thought he should start the Lactulose (I had shared my reluctance with him as well.)

Oh fine. I agreed to try it – Robert’s incontinence was worse after this latest hospital stay so how much worse could it get? 

I was afraid to find out.

We tried it out on a weekend because I wanted to see how fast it worked and how we could incorporate the new medication without impacting his day at his Day Program. I don’t want him to have embarrassing accidents.

Much to my relief, the medication did not make things worse.  (Not much worse, anyway.)

To my knowledge, the Lactulose has not impacted his Day Program activities or caused Robert any embarrassment. 

Robert had an appointment with his usual neurologist on Tuesday so I told him we had finally started the Lactulose. 

He proceeded to tell me Robert didn’t need it. 

Are you kidding me?

After working myself up to start this new medication and finding the right time to do it (no one was in the hospital, it was on a weekend where we were home and Robert was feeling halfway decent), I am now told it isn’t necessary.

I had to ask: What about the other neurologist?  He told us to start using it.

“It’s not necessary. His ammonia levels are not terrible.” 

I have enough trouble adding new medications without the doctors disagreeing about it!

Get it together people.

This neurologist increased one of Robert’s regular medications (his Zonegran) and started talking about new medications Robert hasn’t been on before. Apparently, if the increase in the Zonegran doesn’t decrease Robert’s seizures (which are close to 30 every month), then he wants to try a new medication.

Increase the Zonegran and stop the Lactulose. 

At this point, I kind of hate to stop the Lactulose because I’m curious if it actually brings down Robert’s ammonia levels and if that would affect any behavior (alertness, for instance). I already got myself worked up to use it, started using it and am managing its effects just fine.

I don’t think I want to stop it just yet.

My compromise is to continue with the Lactulose for a month and get the ammonia levels checked at that time. Then, I will stop the Lactulose but I will at least be able to tell Memory Specialist that we tried it and it worked (or didn’t). 

In the meantime, I will hope the increased Zonegran will decrease Robert’s seizures.  I really don’t want to have to make another decision about new medications. It’s exhausting! 

As much as I hope for fewer seizures and no more medication changes, I know the reality is that there will always be decisions about medications to be made. 

It would just help out a little if the doctors could agree about these things!

Have you had the experience of different doctors treating your caree and giving conflicting advice?  How did you handle that?

Tuesday, October 1, 2013

Goodbye September – It’s Been . . . Memorable

September has been quite a month (although, it is not at all unusual for caregivers to have weeks/months/years like this – and worse - unfortunately).
Enjoying a "normal" day

Let’s recap:

September 1:  Richard, Robert and I decide to go to a movie! The tickets were cheap, the popcorn was pretty tasty and the movie wasn’t bad at all.  What a fun way to start the month!

September 3, 7:00 a.m.:  Richard opens the front door for his routine intrathecal pain pump refill appointment which happens every 45 – 60 days. The puppy escapes and Richard and I chase him back toward the house.

September 3, 7:05 a.m.: The puppy escapes again just before I am able to get him back in the house. (I note that Taz is aptly named.) Finally, we are able to get him back in the house. (For real this time). Richard leaves for his appointment.

September 3, 7:10 a.m.:  Robert and I finish getting ready for work (me); and Day Program (Robert). We wait for Robert’s van to pick him up.

September 3, 7:45 a.m.: Robert leaves for Day Program and I leave for work. The puppy does not escape.

September 3, 2:30 p.m.: I leave work to go to a doctor appointment because I have been feeling dizzy. The doctor thinks it’s vertigo but wants to do an EKG to be sure. 

September 3, 3:15 p.m.:  While waiting for the EKG person, Richard calls me. He is groggy, slurring his words and tells me he’s in the hospital. He cannot give me any other information.

September 3, 3:16 p.m.: I leave the doctor’s office, briefly telling a random person I have to leave (I assume she worked there).  I realize Robert is going to be dropped off after Day Program in about ten minutes and Richard will not be there.  I call the transport company as I am racing home to explain why I might be late.  My phone is about to die so I cannot call the hospital until I get home.

September 3, 3:35 p.m.:  I call the hospital and am told Richard is in the ICU – my heart drops. I talk to a doctor while getting Robert from the van to the house. I find out he was inadvertently overdosed with 40 cc of Fentanyl during the “routine” pump refill.

Oh and no one from the pain clinic, the ER or the ICU called to tell me.

September 3, 4:00 p.m.:  I explain the situation to Robert and tell him we have to go to the hospital. He has to use the bathroom but finishes in record time and we rush off to the hospital.

September 3, 4:30 p.m.: Richard is lying in the hospital bed, completely passed out. Robert quietly sits in a wheelchair working on his puzzle book while I get an update from the nurse. Richard’s mom and one of his brothers come to the hospital; our daughters come to the hospital; our son is calling from North Dakota (acting like a tough guy but obviously scared). Richard’s other brother (who lives a couple of hours away) calls several times then makes the decision to come up.

Yeah, we’re worried.

September 4, morning:  Richard is still in the ICU on an IV of Narcan which is the antidote for this drug overdose. He is able to talk to us but is completely miserable and in pain (his head hurts and his back hurts. Oh right - there’s no medication in his pump since it all went into his abdomen).

September 4, afternoon:  The doctor decides to take Richard completely off the Narcan. Within less than an hour, he is unresponsive and his eyes are rolling in the back of his head. His mom and I (and the nurse) all try to wake him up.  The doctor rushes in and immediately starts the Narcan again. I’ve never seen Richard’s mom so scared.

September 5: Richard is slowly weaned off of the Narcan.  He is in extreme pain and horrible discomfort but there is hope he will get moved to a regular room soon.

September 5, 7:00 p.m.:  The girls and I and Robert leave the hospital to get some dinner. I park in the handicap space but forget to hang my placard and, yep, have a $450 ticket waiting for me when we return to the car.

September 5, 11:00 p.m.: I’ve long since left the hospital to get Robert home and ready for bed. Richard is moved to a regular room. I’m still cursing the dang ticket but am too tired to go online to appeal.

September 6: Richard is able to be discharged! His pain is still awful but the withdrawal symptoms have subsided.

Oh, it’s also Robert’s birthday and our 16th wedding anniversary. Before going to the hospital, I took a birthday cake to Day Program for Robert so he would have a celebration with his friends. Happy birthday, Robert! Happy Anniversary, Richard!

September 7: I appeal the parking ticket and have charge reduced to $27.95 for “administrative” fees.  Otherwise known as “we want you to remember not to be an idiot in the future” fee. 

September 11: Richard has an MRI dye study done on the pump to be sure it is working properly. He also has the pump refilled to alleviate his pain (by the head doctor). This time, the medication goes in the pump like it’s supposed to.

September 12: It’s Richard’s and Other Brother’s birthday! Richard and I go out to dinner with one daughter (Rachel) and Robert.  Before leaving for dinner, Robert has an unusually long seizure with several minutes of confusion. Richard gets sopapilla for dessert and is a happy guy!  (Robert loves it too.) Happy birthday, Richard and Other Brother!

September 13, morning: Robert has had nasal congestion and a cough for about a week.  I take him to a doctor appointment and she starts him on antibiotics. His chest x-ray is clear.

September 13, (throughout the night): Robert has gone downhill all day so by bedtime, I wake every two hours to take his vitals.

September 14, morning:  We call the paramedics to get Robert to the hospital.  His behavior and symptoms are the same as the last two times he was hospitalized for pneumonia and sepsis.

September 14, later that morning: Robert is diagnosed with pneumonia and sepsis, surprising absolutely no one.

September 14, noon: Robert is transported to a regular room where he goes further downhill.  He is transferred to the MICU.

I let a morbid thought in: can he survive a third bout of pneumonia and sepsis within 16 months?

September 16: Robert is doing well so is transferred to a regular room. I ban all future morbid thoughts – Robert is a walking miracle.

September 17, 3:00 p.m.: I stop at the grocery store after working part of a day and before going to the hospital. I slip and fall and land on all fours (knees and hands).  My ego suffers the most damage.

September 18:  Today is daughter Caty’s birthday! Happy birthday, Caty!

September 20, 5:00 p.m.:  Robert is discharged from the hospital!

September 21: It has been 14 years since my mom died. I think about her frequently throughout the day.  (Truth be told: every day.)

September 26:  Richard’s leg is swollen much more than usual and extremely red.  He is complaining about his vein hurting in his upper thigh. His doctor sends him to the ER where everyone thinks he has Deep Vein Thrombosis.  The ultrasound does not confirm this and he is sent home with instructions to follow up with his PCP and a whole lot of Lasix.

September 29: The extended family celebrates all the September birthdays at our house. There is too much food, lots of noise and even more laughter. Things seem . . . back to normal (if you don’t count Robert’s lingering cough and Richard’s legs still looking like tree trunks).

It’s “normal” enough so I will take it.

September 30, 11:00 p.m.:  I wake up to Richard in the bathroom trying to stop one of his legs from gushing blood. He had scratched his leg and it spewed blood like in a bad horror movie. We finally were able to get the leg wrapped with several bandages and elevate his leg. We decide a trip to the emergency room is not needed but will call the doctor first thing in the morning.

October 1: Hello, October! I don’t know what to expect but after our September, know that we will get through whatever is thrown at us.