Tuesday, July 27, 2010

Death With Daddy, Part Three - Fighters To Your Corners

My father probably had one of the longest deaths in the history of mankind, especially considering the fact that, according to him, he'd been living on borrowed time for the last 45 years.

I've read the best way to look at your life is to view it as an adventure - it's not the destination that matters, as much as enjoying the journey you take to get there. Since we're all going to reach that same destination (death), it sounds like a good idea to enjoy the journey (your life) and not worry so much about the end of the trip.

I just wish the end of Daddy's journey would have been a little easier...more like a calm, peaceful easing into the next phase, instead of something closely resembling a fight to the death cage match on pay per view.

Over time Daddy's cancer metastasized to the point where he began having the predicted physical and mental difficulties. He suffered from weakness and confusion, making it harder and harder for him to be the self sufficient person he wanted to be.

Even with the assistance of hospice workers, meals on wheels and daily visits by my sister and me, it soon became clear that Daddy needed to be in a place where he could be monitored 24/7, with around the clock medical care available, if needed.

The search began for just such a place. Daddy wanted it close to his current home, but my sister lives 45 minutes from his part of town and Michel worried about getting to him in an emergency.

We finally settled on a place practically in my sister's backyard - Garnet Hills Rehabilitation Center and Senior Nursing Facility in Wylie, Texas. This is where the final stage of this adventure begins.

First of all, a little advice...be very careful when you choose a "nursing home". They go by a variety of names nowadays: Senior Nursing Facility, Adult Day Care, Assisted Living, Independent Living. These facilities are all structured to provide services to people who are in need of different levels of assistance. Some people need constant supervision and help and some need very little. The best of these facilities are honest about what they can and can't provide and they do their best to care for their patients.

And then there are the others...Unfortunately, my family learned the hard way about the others - namely the Rehabilitation Centers. One thing the good AND the bad facilities have in common is, at the end of the day, they are BOTH businesses, businesses who have to show a profit to remain IN business. That's fine - I don't begrudge anyone the right to be successful. But when striving to make a profit compromises the health, safety and welfare of the very individuals the facility has agreed to care for, that's when I have a problem.

Unfortunately this has been the case with our experience with rehabilitation centers. My family's first dealing with a rehab center was when we placed my mother in one after her stroke. Even though we were assured they could handle my mother's Alzheimer's and her need for constant monitoring, it soon became apparent they were not set up for nor equipped to deal with someone in the latter stages of the disease.

When it was time to place my father, my sister and I both met with the woman in charge of admissions at Garnet Hill, as well as the facility's administrator. We very thoroughly laid out my father's needs; what he was capable of doing himself and what he'd need help with. Both managers assured us the nursing staff was well equipped to meet all of my father's requirements.

Read that last sentence again and I think you'll see the problem: the MANAGERS assured us the NURSING STAFF could provide the necessary care for my dad. There is the disconnect..the managers are promising things the nursing staff can't (or won't) provide. The front office is trying to fill empty beds and the back office (nursing staff) is overwhelmed and possibly not qualified or even aware of the promises being made on their behalf.

The problems started early for us. Even though we were assured someone would check on daddy every one to two hours, it soon became apparent that as many as six hours would go by without anyone checking on him, including NOT taking him for meals or seeing that his meals were brought to him.

Experiments with the call button were futile and I soon learned why. Once, while standing at the nurses' station during one of the daily battles, I observed the call button from another room light up. The nurse at the desk looked at the call board, stood up, walked over to the board and deleted the call message, without checking on the patient. So much for their prompt, attentive service. Ooopsie! Hope that wasn't life or death!

Every day brought another obstacle to overcome and pitched battles and pitched fits were soon the order of the day. I remember waking up one morning and saying to Roger, "I wonder how many fights I'll have to get in today."

Incompetence and negligence ran the gamut. These "professionals" lost medicine, mixed up patient charts, didn't follow medicine dosage times, wouldn't answer call buttons or help with moving my father to the bathroom or clean up the mess when we couldn't get him there in time.

In desperation, we began leaving the door to Daddy's room open in the hopes we could flag somebody down when we needed them. The problem with that thinking was no one ever walked down the hall. I have no idea where the party was - but it obviously wasn't anywhere near us.

One truly memorable night, my sister called me almost in tears. She'd been single-handedly trying to get Daddy to the bathroom, and they hadn't made it in time. When she went to the nurses' desk to report the mess and ask for someone to clean it up, she was told housekeeping was closed. They suggested she clean it up herself.

I have to admit, when Michel told me that, I sort of lost my mind and my temper. The Director of Garnet Hills had made the mistake of giving me his cell phone number, and I immediately called him. I don't remember a whole lot of what I said, but it was enough that he showed up at Garnet Hill within minutes, looking disheveled and worried.

You'd think that would be all it would take, wouldn't you? Rooting the Boss Man out of bed in the middle of the night should have been enough to get things whipped into shape, shouldn't it?

Apparently not. Things continued to get worse and it soon became a matter of survival. Trying to secure basic care for my father at a premium price (keep in mind, Club Garnet Hill was costing us around $150.00 a day), with a family member present 90% of the time to provide the majority of that care.

Tell me there's not something wrong with THAT picture.




Tuesday, July 20, 2010

Death With Daddy, Part Two - And So It Begins

No matter how healthy we are, at one time or another, each of us will have to deal with being less than perfectly healthy. The strange part about my father's life-long flirtation with poor health is, when he actually did fall ill, his method of coping was to ignore the problem.

A few years ago, my dad developed a particularly virulent strain of basal cell cancer. Within a few months, the cancer had spread and pretty much decimated his entire nose. Its' appearance was alarming enough that doctors entering the exam room during one of my mothers' examinations would stop in their tracks and begin quizzing my father about the obvious cancer that was slowly consuming his nose.

It took several visits with a dermotalogist and an ENT to convince my dad that the cancer was something to be taken seriously AND taken off. Only after being told the cancer would advance into his brain would he agree to the necessary surgical procedures to save his face and his life.

Daddy was lucky enough to dodge that particular bullet. Doctors removed the cancer in its' entirety and follow up plastic surgery left him with a nose that bears hardly a trace of the entire experience.

Even though he dodged that bullet, he wasn't able to dodge the next one. Ironically, that bullet also took the shape of cancer: bladder cancer and this time surgery wasn't an option.

When my father began passing blood in his urine, his internist referred him to a urologist. Tests and biopsies showed Daddy had a massive tumor in his bladder. Even though this tumor was removed, the doctor felt it was only a matter of time before it would return.

How right he was...within 6 months the tumor was back with a vengence. Not only had it grown in size, but MRI and CT scans showed it had metastasized to his lung, breasts and thyroid.

I remember sitting next to Daddy when the oncologist, Dr. Caruso, scooted her chair close to him to give her diagnosis. She took him by the hand as she told him the bad news. He had terminal bladder cancer and his age ruled out the possiblity of surgery. In her opinion, while chemotherapy and radiation might prolong his life, the quality of that life would be miserable. She told Daddy he'd lived a long, wonderful life full of many blessings, and she encouraged him to live the rest of his life enjoying each and every day as the gift it was.

Let me just stop a minute here to point something out. During this entire journey, we saw several different doctors and specialists and none of them had the nerve to do what this one doctor did. None of them had the courage to look my father in the eye and tell him he had terminal cancer. No one would admit he wasn't a candidate for treatment. That basically, his life was nearing the end and the best advice they could give was to enjoy what was left.

Oh, they'd manage to catch my sister and me alone and tell us the bad news, out of daddy's hearing. But, when it came to informing my dad, their action was always the same - they'd refer us to ANOTHER doctor, for MORE tests.

Only this tiny woman doctor had the guts to deliver the heartbreaking news to my father, and she did it with grace and compassion, and for that I'll always be grateful.

Because, even though those other doctors might have thought they were doing daddy a favor by not being totally honest with him, they weren't. What they were doing was allowing my father to live longer in denial, fear and confusion; thinking there was hope and not understanding why nothing was being done to beat this disease.

I think it speaks to the amount of damage these well meaning doctors actually did, that, when Dr. Caruso finally told him the truth, Daddy couldn't grasp it - couldn't understand why he'd been sent to so many doctors and had so many tests if there wasn't anything that could be done.

I will always remember a phone conversation I had with my dad one morning. Daddy was asking me what would happen next, what was our next step, our plan? I had to tell him all over again that there was no plan, no next step, no treatment, no medicine, no future beyond the limited time the cancer gave him.

Instead of telling my father the truth about his diagnosis and illness, those well-meaning, well-intentioned doctors left it to me to break the bad news. I just don't think that's something any child should have to do, do you?

Stay Tuned - Part Three on the way...




Friday, July 16, 2010

Death With Daddy, Part One

I'm sorry I've been AWOL for so very long, but I have a really good excuse, and it doesn't have anything to do with an unfortunate incarceration, I promise. Although I'm fairly certain an orange jumpsuit is lurking somewhere in my future, it's just a matter of time.

The reason I haven't been posting lately is that I've been kinda busy with other things, things that have to do with my father's recent death. Uh huh, NOW you feel guilty for being cranky about no new posts, don't you? Good, I'm glad I'm not the only one.

Aris Franklin (Frank) Erskine, my father, passed away peacefully on June 25, 2010 in Garnet Hill Rehabilitation and Skilled Nursing Center in Wylie, Texas. He was surrounded by family - my sister Michel, niece Suzanne, me and my husband Roger.

How we all got there and the journey along the way was, as is typical for me and my family, a pretty funny story. I'd like to take you along and tell you all about it. But, be warned - some of you may take exception to the humor in this story and the way I tell it. That's too bad, I believe genuine laughter should be enjoyed no matter the circumstances. So, settle in, y'all...you know I can't be brief.

My dad's death was probably the longest death in the history of the world, seeing as how, according to him, it started approximately 50 years ago, when he was just 40 years old.

It's safe to say that my father actually enjoyed poor health - or at least HIS version of it. Actually, he was probably one of the healthiest individuals you're ever gonna meet. That became apparent in the last few years, when he'd check into the hospital for a minor procedure, and the admitting staff could NOT believe he'd NEVER had an IV, or any type of medical procedure, except for a minor bout with a bleeding ulcer several years ago.

Instead of being proud of the fact that he was so very hale and hearty, Daddy got kinda ticked off at the exclamations of hospital staff over his obvious good health.
The fact that, at age 88 he was fully capable of pushing his Ford F150 out of the garage to jump start the battery, was nothing he wanted spread around. In his mind he was an invalid, by God, and he wanted some attention!

That had pretty much been Daddy's attitude his entire life, and unfortunately, he got his bluff in on my Mother, who was certain he would kick off at just any moment. After a lifetime of that, I'm starting to wonder if she was afraid of it or kinda hoped it would happen. Waiting for that other shoe to drop must have been exhausting.

The rule in our house was that Daddy was to be coddled and treated with utmost care and attention. So much so, that it was my job, at the tender age of 4 years old to travel everywhere with Daddy. That way, when he did suffer the heart attack that he was certain was just around the corner - I'd be there to give his info to the paramedics and doctors.

Looking back on that, my sister and I can see how very weird that was. For one thing, why would you send your daughter along for the ride, if you're convinced you're a heart attack waiting to happen? For another, in a life or death situation, would YOU want a 4 year old to be in charge of your vital information? No? I didn't think so. But, that gives you an idea of just how life worked at our house.

Over the years, Daddy did have brushes with mortality - kinda. Once, he was on a ladder, sawing a tree limb down with a chain saw (yeah, like THAT'S ever a good idea), when the chainsaw kicked back and knocked my dad right out off the ladder. He fell a good 8 feet straight back and landed flat on his back.

Paramedics were called and our entire family trooped to the hospital in a show of support. As a group, we barged past admittance desks and scurried along behind as my Dad went from the intake room to the x-ray room, and finally back to an exam room. You have to wonder what the doctor thought when he had to push his way through the crowd just to enter the room. Another celebrity casualty in Dallas, ala John F. Kennedy? Nope, just my Dad and our family.

In case you're wondering, my Dad's tree trimming adventure didn't put a mark on him. No internal injuries, no broken bones, nothing - not even a scratch. My mom hyperventilated, my sister got hysterical and I almost passed out. But, Daddy? He was just fine.

My Dad's second close encounter of the possibly fatal kind happened several years later. Around 15 years ago, Daddy called in the middle of the night to tell us he was bleeding profusely (he wouldn't tell us WHERE he was bleeding from, but it wasn't too hard to guess when he and mother drove up in the car, with Daddy sitting on about four large bath towels.)

That was always puzzling, even though we were all supposed to be fully aware of my Dad's tenuous grip on life, which could be severed at ANY time, we were never supposed to ask for any details. Those things were NOT to be discussed with daughters. As maddening as that was at times, little did I know the day would come when I would YEARN for the blissful ignorance of those years.

Of course, Daddy lived about 10 minutes from one of the best hospitals in the country, Baylor University Medical Center, but THAT wasn't where he wanted to go. No, he insisted Roger and I drive him and mother to Lakepoint Medical Center in Rowlett, a good 25 minutes away...IF you take the freeway, that is. Daddy wouldn 't let us take the freeway - no sir, we had to take the backroads, through the pitch black night, like we were fleeing from the Revenuers. I guess he felt that it was HIS death and he'd do it the way he wanted to.

Again, it was pretty much a rerun of Tree Limb Fiasco, with our entire family camped out in the Emergency Room waiting area. Note: This time our family wasn't allowed to push our way into the actual patient area, although you KNOW we tried. All family members had to wait in the waiting rooms. I'm sure that rule went into effect nationwide after they witnessed our behavior during the Tree Limb Fiasco.

Diagnosis from Daddy's Midnight Ride? A bleeding ulcer. No surgery necessary - problem solved with diet and medicine.

Oh, and this is when we as a family, became aware of Mother's Alzheimer's Disease. As Daddy's wife, she was allowed back in the exam rooms with him, and apparently she was having difficulty processing things and understanding what was going on. We now know that's typical behavior for an Alzheimer's patient. Any trauma, physical, emotional or situational, will make them spiral downward in behavior and will magnify the effects of the disease.

It was a frightening thing to be told by the nurses that "Your mother is having some confusion issues, and can't be back here without one of you to supervise".

WHAT? What did that mean? We were terrified and confused. All except Daddy...Daddy was mad the nurses were having to deal with mother instead of paying attention to him.

Readers, trust me when I tell you there is much more to this story. I'm stopping now, but I'll be back with Part Two very soon. I promise.