Sometimes It's All About Timing

Dad was supposed to have gone for “fasting” lab work yesterday. He made it to the kitchen and a bowl of cereal before I could stop him so we had to wait until this morning to go. As soon as I knew he was up, I ran to the kitchen. He had parked his walker outside the kitchen so I wouldn’t hear him. Already, he had bread in the toaster and cereal in the bowl. I explained that he couldn’t eat yet because we had to go to the hospital to get lab work done. He instantly turned around and announced he would go get ready.

You have to understand, when he has a doctor’s appointment, I have to start getting him ready about 3 hours ahead of time. We are almost always late because he isn’t ready on time. Going to the doctor is a chore. But going to the hospital is a joy. He has been going there regularly since the day they opened the doors. He knows people there. Doctors, nurses, technicians, security guards, volunteers, administrators, maintenance men, you name it, they all know him by name and stop to talk to him. He is appreciative and touched that they take a moment out of their hectic schedules to speak to him. Most of the time he can’t think of anyone’s name but the faces spark a memory and he recognizes them. On a really good day, with someone he has seen repeatedly over the years, he occasionally remembers something specific about them.

As we were driving to the hospital, Dad asked (for the 8th or 9th time) why we were going. So, for the 8th or 9th time I explained that his Cardiologist had ordered these labs back in Jan. That we have to do this every 3 months for this doctor, it’s a way of keeping tabs on his heart. He thanked me 8 or 9 times for bringing him to the hospital and for taking care of him.
On entering the hospital emergency room (it’s where you register), we were greeted by a security guard that knows us well. Dad just had to stop and speak to him for a bit. Meanwhile, Ms. Jeanetta, an old and dear friend of his and Mom’s from church, spies us and runs over to give me a hug. She is amazingly proficient at giving a hug and asking half a dozen questions about how everyone is doing all at the same time in a tone that keeps Dad from hearing her. Her genuine concern for Dad is one of the reasons I have always liked her so much. By then, Dad has left the security guard and joined us so we have to visit for several minutes until someone comes in needing assistance. The instant we start to move away, the woman working in the admissions dept calls out to us, “Mr. Felker come on in here and I’ll get everything set up.” She chitchats with us and we are done and in the waiting area in a matter of less than 5 minutes.

There is a baby in the waiting room. He was barely past the learning to walk stage and Dad kept himself busy watching him and trying to talk to him. He kept telling everyone how cute the “little guy” was. Everyone in the waiting room was watching them. After a fairly short wait, Dad was called to the back. He leaned over to pat the baby on the head, announcing loudly, “You sure are cute!”
A guy (who’d been in a car wreck and was battered, bruised & there for extensive x-rays) that had been watching them all this time piped up from across the room, “So are you, Sir!” As the door closed behind Dad, I looked over at the guy. Tears welled up in his eyes and his voice was choked, “The old guy kind of reminds me of my dad. I really miss him. He had Alzheimer’s, too.” And in that moment as our eyes met and held, as the tears welled up in my own eyes, I felt his pain and I felt my own. “That’s my Dad,” I said softly.
And for a brief instant of time, I was connected to another human being on a level that can’t be understood unless you’ve actually walked a mile in the shoes of someone who dearly loves someone with Alzheimer’s. And I have to admit it felt good. He nodded his head and slowly stood up. With a smile of naked recognition and understanding, he limped away and somehow my day got a bit brighter.

I'm On a Soapbox (Let Me Vent)

There is no logic to Dementia or Alzheimer's. There is no consistency and so far there is no solution. There is no cure. There is little hope. At best, there are a myriad of drugs that can slow its progression but most of them are extremely expensive and many are slow to get approval by the FDA. Worse yet, most of them aren’t capable of making a drastic difference, they simply slow things down a little. Alzheimer’s is insidious beyond belief.
Recent changes to Medicare Prescription Plans have made a great many of these types of medications ineligible for coverage. Others are so ridiculously priced to begin with that the portion you are left paying out-of-pocket (for a 30 day supply) costs more than what an average family spends on groceries for a week. Dad has a monthly injection I give him that is $1485 PER SHOT! With his old insurance, his co-pay was $50 a month. With the new Medicare Plan his co-pay is currently $791.

Introducing Medicare Part D otherwise referred to as Donut Hole Insurance. There are 4 stages to this nightmare insurance policy brought to you by the US Government (via a letter Dad received a few days ago)…
Stage 1- Yearly Deductible is around $300 (we had that met by the 2nd week of Jan.) Stage 2- Initial Coverage the plan covers part of the cost and you cover the rest (in our case they cover about 35%) until you reach app. $3,000 year-to-date “total drug costs” (we’re over ½ way there). Stage 3 Coverage Gap (which I estimate we will enter within the next 4 weeks)- You will receive a discount on brand name drugs and you pay ONLY 93% of the costs on generic drugs. You stay in this stage until the amount of year-to-date “out-of-pocket costs” reaches app $5,000. At this rate it shouldn’t take us very long to move to Stage 4- Catastrophic Coverage. During this payment stage, the plan pays most of the cost for your covered drugs. You generally stay in this stage for the rest of the plan year.
***Please note the ambiguous wording given by them. Phone calls are even more frustrating because everyone insists this is the best solution for someone who takes as many different medications as Dad does. Currently, he takes 29 different medications orally and 2 different types of injections at home.

How exactly does the government expect to prolong the lives of the elderly when they allow the pharmaceutical companies to pillage, rape and plunder the American people? How do they expect the elderly to pay their rent or mortgages, buy groceries, while paying outrageous costs for medical care and prescription medications? How can they hold their heads up knowing that there is no such thing as a decent government run nursing home in this country (and if there is, I stand corrected and am amazed)? How can they close their eyes to the injustices, neglect and abuse that the American elderly are subjected to without punishing the offenders to the highest letter the law will allow? I often wonder what these people do with the elderly in their own lives (parents, grandparents, etc.)

If I were an elected official, I would bend over backward for this dwindling segment of the population. I would bust my ass to keep them alive as long as possible. You see, unlike subsequent generations, the elderly still have faith in the government. They always pay their taxes, they don’t ever cheat the government, the elderly go out of their way to follow the very letter of the law. They have unwavering devotion to our country and yet most government offices seem to relegate them to the back burner in every case. You get better health care assistance if you are a crack addict with 5 kids living in the projects and selling sex for hire than you do if you are elderly.

It infuriates me to see the way so many Americans treat the elderly, when they aren’t ignoring them entirely. Our nursing homes are more often than not substandard and the funding is so sparse (no matter who it’s run by) that there is a shortage of both Registered Nurses and LPNs (the ones there are, are overworked and usually underpaid), a shortage of doctors who give a damn, a shortage of Caregivers that have more than the minimum qualifications. I can’t think of a single country in the WORLD that treats the elderly so poorly!

I am angry and I am going to keep making it my business to demand answers from the medical people we encounter regularly, our insurance companies, Medicare, Social Security, the Federal Government in general.
I am going to continue to fight a government that allows crimes against the elderly go unpunished. A system that will allow someone to neglect or abuse an elderly person and then let them open a business that provides elderly care is a system that needs to change. I am only one small voice but I will S-C-R-E-A-M to be heard!

Back With Things to Say

April 2, 2011

I am the first to admit it's been a while. I apologize to my readers and I apologize to myself. So much has happened since last August. I realized today that I haven't been able to write because I have been too bogged down in the day-to-day chaos of just living here. I am going to give a quick overview and tell you that Dad has been hospitalized 3 times since Aug. Once for Crohn's Disease, once for dehydration and once for his heart. Last Oct. his oldest living daughter (and one of my dearest friends EVER) died very unexpectedly and our lives again were shattered. Ironically, Dad's Alzheimer's provided him protection from the realities of it all.

Living with someone who suffers from Dementia/Alzheimer's is similar to living in a war ravaged third world country. Unpredictability and instability become the norm. At any given moment, (with no rhyme or reason) anyone can be seen as the enemy and suddenly clarity ceases to exist. It happens in the blink of an eye. Being the caregiver of someone who is completely irrational at times and requires 24/7 care is without a doubt the most frustrating, exasperating and exhausting role I have ever taken on. But the times when it is satisfying, fulfilling and rewarding makes it all worth it. Unfortunately, there is absolutely no way to find such a thing as balance when dealing with Dementia.

In essence, I am dealing with an 89 year old child most days. Frequently, he is aware that he is misbehaving but is unable to control the behavior. And if he misbehaves, his illness enables him to forget it the moment anything happens. I am firmly convinced that most of the negative behavior he exhibits is born of his overwhelming sense of frustration. The limitations that have been imposed on him by his many physical ailments, his age, and his mental instability are taking a friendly, out-going, active, humorous, hard working, life loving man and making him a shell of his former self. (Though, I have to admit, he still has an awesome sense of humor at times!) He is so seldom animated anymore that I have to be grudgingly grateful for even the bad behaviors.

Here, I'll give you an example. When we left our last doctor's appointment the other day, Dad insisted on collapsing his walker and putting it in the back seat of the car unaided. I stood by helplessly watching his struggle. After several minutes, I stepped forward to help. Out of nowhere, I received a forearm across my chest that sent me reeling backward. Dad turned to me shaking with rage and yelled, "I can f-ing do it myself!" His frustration mounted as he continued to fight with walker and I stood terrified he was going to give himself a heart attack with the strain. A couple of minutes later, he finally got it shoved in (in a position that put a wheel directly into the back of my head).
For so many reasons, I wanted to rest my head on the steering wheel and cry. My frustration at it all enabled me to see his frustration so much more clearly than I already do. Those are the moments when I can hear my heart crack a bit more in the surrounding silence. As I started the car, I glanced over at him. On his face I could clearly see his pride, his sense of accomplishment in having successfully accomplished a task he had set for himself. And I could feel the crack slowly beginning to heal.

The Package Inspector

This is a story I have debated telling since the day it began. I have finally decided to tell it simply because it’s too funny (and sad) not to share it. Please note, Dad does not remember anything about the 27 days of our hospital/rehab/hospital ordeal in June and July. I am thankful he can’t remember these particular events. I hope you will agree, it’s hysterical (and sad) and, that it’s for the best that he doesn’t remember…



On the second day Dad was in rehab, he was sitting in his wheelchair while I straightened up his room. An elderly woman wheeled in and headed straight for him. She rolled to a stop next to him.
“May I help you?” he asked with obvious surprise.
“No,” she replied.
I said hello to her and she turned an icy stare my way. “Go away,” she demanded. She then reached a shaky hand over and placed it on Dad’s knee. He looked at me, shrugged his shoulders and mouthed, “CRAZY”.
I stood there with my mouth gaping as I watched her smile and put her hand back on his leg (on his thigh this time). He politely told her hello. She began humming under her breath as she slowly started to rub his leg. When she didn’t respond, he asked again if he could help her. Once again, there was no response.
Not at all sure what I should do, I casually made my way over to the bed. As I straightened the linens, I pressed the nurse call button. I turned around to see her hand groping his crotch. Thanks to the Depends he was wearing, I don’t think he felt a thing. He was looking from her to me and appeared completely oblivious to where her hand was. I was frantically searching my mind for a way to handle the situation when the nurse walked in. She took the whole scene in with a quick glance.
“Now, Ms. G, let’s leave these nice folks alone to visit.” The nurse gently but firmly disengaged Ms. G’s hand and started to wheel her out.
I thanked the nurse as they were passing me. The old lady turned her head to look at me and leaned in my direction. Her voice was a loud, scratchy hiss, “BITCH! He’s mine and you can’t have him!”
My mouth dropped open as I looked from her enraged face to the smiling face of the nurse. “Welcome to the neighborhood. Ms. G used to have a “friend” in this room. She has trouble remembering he’s gone. She knows she’s not supposed to be in here so just call us if she comes back. Sorry.”
She leaned down and said to the old lady, “Come on, Ms. G, I’ll take you back to your room.”
As they made it to the door, Ms. G started to whine, “It’s my job. I’m the package inspector. Let me finish my job. Why won’t you leave us alone and let me do my job…”
Dad looked at me and shrugged his shoulders. “Poor thing,” he said, “she’s crazy.” He shook his head sadly as he stared at the empty doorway. And as he does with anything distasteful to him, he promptly forgot any of it ever happened.

Our second encounter of another kind with Ms. G came a couple of days later. Dad was stretched out on his bed behind me while I was gathering his daily laundry to be washed overnight and returned the following morning I heard him say, “Well… hello.”
I turned from the closet to see Ms. G wheeled up next to the bed with her hand up the cuff of Dad’s pants leg.
“May I help you?” Dad asked very politely while looking like a deer caught in headlights.
“I’m going to help you,” she said as she slid her hand further up his leg.
He cleared his throat and asked, “What’s your name?”
She began to hum by way of a reply and continued her upward trek, now somewhere in the region of his knee.
With no hesitation this time, I jumped for the nurse call button and summonsed help. “Ms. G, don’t you think you should go back to your own room now?”
She turned to stare blankly at me before she demanded through clenched teeth, “Get out! Can’t you see we want to be alone?”
She had made it to Dad’s thigh by now and realized she could go no higher than his lower thigh with his pants on. Not to be deterred, she simply dropped her other hand onto his lap and began groping him. I was beyond relieved when the nurse walked in. She immediately began trying to untangle Ms. G’s hand from Dad’s pants leg with one hand while she attempted to remove the still groping hand with the other.
As soon as she had a hand free, Ms. G reached a hand out to Dad. Much to my surprise, he asked the nurse to wait a minute and he took it in his own, patting it softly. “Thank you for stopping by,” he told her politely.
She grasped his hand and pulled it to her cheek. “Was it as good for you,” she asked, “as it was for me?”
As the nurse ushered her out of the room, Dad looked up at me with tear-filled eyes. “Poor thing,” he said, “She’s crazy you know. Poor, crazy, lonely thing.”
I am happy to say that Ms. G was successfully kept out of his room after that (or at least to my knowledge she was). But, from then on, when we would encounter her in the halls, Dad would sadly shake his head and say, “Poor thing. Poor crazy, lonely thing”.
And to this day I am convinced he wasn’t at all aware that she tried to feel him up. I’m not sure which I am more thankful for in this case… the Alzheimer’s or the Depends!

A Sense of Humor Matters

August 14, 2010

Dad has been in Physical Therapy, Occupational Therapy and Speech Therapy for a month now. Signs of physical improvement are so great he was released from OT this week and PT has been reduced to twice a week. But as his physical capabilities have increased, his mental capabilities have slowly been decreasing.
At a doctor’s appointment on Friday, Dad was asked to fill out a questionnaire. He asked me how old his parents were when they died and what their medical history was (2 questions I don’t know the answers to). When I told him I wasn’t sure, he proceeded to make up answers. He couldn’t remember how many children he has, their ages or if they are living or deceased. Finally, he became to frustrated to finish it and asked me if I would do it for him. My heart breaks to watch him struggle with the tiniest of things, things that most of us take for granted every day in our own lives.
On a note of levity, I cracked up when I came to the section regarding his educational background. He had listed that he had completed 2 years of college, then checked the box that said, “reads and writes poorly”. I explained they were trying to determine literacy. He insisted (with a twinkle in his eyes), that he can’t even read his own writing.
For almost every negative we encounter together, he manages to find humor somehow, and for that I am eternally grateful.
When the doctor came into the examining room, he announced that the lab work looked good. I was overjoyed to hear that his kidney function had gone from 32% three months ago to 50% currently. The doctor and I both burst out laughing at his cheerful response, “That’s great! Now I can start pissing on myself more often!”

Tonight ended on rather a sour note. Dad lives for watching football games on TV. It doesn’t matter who is playing, or what league it is, and he usually has it muted so you can’t hear a thing. It doesn’t matter to him it’s about WATCHING the game. He asked me all day what day it was. And I told him repeatedly it was Sat. He started looking for a game on TV about 7:00. After an hour of me trying to check the listings on the TV Guide channel, with him taking the remote away periodically to channel surf (his version, which means randomly pushing buttons or not pointing it at the TV when he IS pushing them), he finally gave up. Not because he believed there wasn’t a game on, but rather because he was angry he couldn’t locate the one he was sure WAS on.
He insisted there had to be one on because the newspaper had listed all of today’s game times. I tried to point out it didn’t say anything about it being on TV. In a fit of pique, he threw down the newspaper and the remote and announced he was going to bed because “the damn TV is broken anyway!”

We’ll see what tomorrow brings…

My Review of Pressure Sensitive Patient Alarm System

Originally submitted at AllegroMedical.com

Pressure Sensitive Patient Alarm The Patient Alarm utilizes a pressure sensitive pad and connected battery powered alarm that alerts caregiver with audio sound when patient gets out of a chair or bed. Pressure Sensitive Patient Alarm Features: New and improved. Pressure sensitive pad connects to ...

Pressure Sensitive Patient Alarm System

Best Option For Non Medical Personnel

By Just Shari from Santa Rosa Beach, FL on 8/7/2010

 

4out of 5

Pros: Lightweight, Safe, Easy Storage

Cons: Rather Pricey

Best Uses: Elderly, Dementia Patients

Describe Yourself: Caregiver

Primary use: Personal

It is easily secured to bed and is not bulky at all. Only major drawback is there seems to be a slight delay before the alarm goes off. It is the best product I could find available to me since I am not a medical professional.

(legalese)

This One is About Me

Much of my “free” time lately has been spent in reflection, contemplation, meditation and prayer. It unfortunately, sucked away my ability to write. Since school let out for the summer, I have been unable to take my solitary morning walks. As summer has progressed, I have come to realize the importance of finding a way to begin them again when school starts. I know I need the peacefulness and vigorous exercise to center myself. It is a personal way of rejuvenation. I am hoping it will relieve some of the lethargy that has threatened to consume me this long, hot summer.

When last I wrote, Dad had just come home from the hospital. He still has no memory of the 27 days he was in either a rehab facility or the hospital. For the 1st time since I moved here, I have had real, medically trained professionals coming in to help me with him. For the 1st time since moving here I have had any help at all.
Dad is doing amazingly well. He moves around the house frequently without his walker (the wheelchair is, at least temporarily, a thing of the past). He has gotten up on a few mornings and made his own breakfast. He has unloaded the dishwasher on many occasions (virtually nothing ends up where it belongs, so cooking has become something of an adventure). He sets the table for dinner (ALWAYS incorrectly but he tries SOOOOO hard). He is eager to help and he and I both know it’s because he KNOWS he is slipping more and more into the world of Alzheimer’s.
Unlike after Mom died he no longer lays in bed all day or sleeps all the time. He rarely even takes a nap currently. He may sit in his chair most of the time but he gets up and fixes himself a drink more often than he asks me to get him one. He reads the newspaper everyday. He reads magazines and even watches the TV unmuted more each day. Now that he knows the reason he quit reading books (he can’t remember what he has read once he puts the book down because there is too much for his brain to process and hold on to). Magazines and newspaper articles are short so easier to grasp and retain. They are less daunting in a lot of ways.

Once again, we are making great strides on the physical side of things. Meanwhile, his Alzheimer’s days are steadily getting worse. He has become argumentative. So much so, I have begun to arrange a moment alone with his nurse and therapists to communicate any concerns I may have. I often laugh to myself when I think of Mom’s ingenious plan to start flying a warning flag like they do at the beach. A way of warning everyone what kind of day they can expect. We are most often on at least a yellow flag day (the last 2 days have been red flags for sure).

I went home for an overnight trip last week and was startled to see that my grandmother is deteriorating at a fairly quick pace. I left over 2 hours later than I had intended because I organized her medications and made med lists and gave them specific instructions on things she should be doing. I was still so distraught on Monday when our home health nurse came I told her about it. She immediately got on the phone to a supervisor in her company who in the space of 24 hours had the ball rolling to get them in to help my mother take care of my grandmother. We are arranging everything by phone while my mother is on vacation. By the time she returns, we should be ready to have all the different departments in to make their evaluations. My grandmother is finally getting the help I have wanted for her for over a year and Medicare WILL PAY FOR IT!!! I just wish I could convince her to move in here so I could look after her myself!

Life has begun to get increasingly harder and I find the need for introspection quite necessary. I also find that I roll into bed every night praying for the strength to get through the following day. The demands of my family have grown bigger and more complicated. I find myself quite weary at the end of every day rather than just occasional ones.

I know there will come a time where I will find peace for myself. I know that time is not yet. My peace will come from within and it will be the most solitary thing I ever do. But for now, my life is on hold as I hold hands, change diapers, kiss & bandage enough injuries to keep a walk-in clinic in business, cook, clean, chauffeur, listen to people's sad tales of their problems(and try to offer good advice), attempt to be a good friend to my friends, a good daughter, grand daughter, sister, mother and most importantly, try to be a good mate to a husband who is paralyzed with fear at dealing with his own father’s illnesses and recently, at times, life in general.
But for now, the pain I feel that emanates from this family (Dad, his children, his grandchildren, and even his great-grandchildren) drains the very life out of me at times. So if I should temporarily go into hiding on here… please feel free to message me. Trust me, a good, swift kick in the pants just might be what I need!