Your Bed Looked Inviting... From a Dementia Point of View

My husband had been ill for weeks, going to the E.R., spending two weeks hospitalized, another trip to Urgent Care, followed by another hospital admission.  He had suffered septicemia from a staphylococcus bovis infection, which is strongly associated with colon cancer, and a gall stone obstruction causing jaundice.  He was now home, having dodged death and remarkedly avoided cancer.

This morning, as I went about cleaning and decluttering, he called for me.  I entered our bedroom to find him on my bed.  We have a split king, which in essence is two twin beds pushed together.  His electric wheelchair was parked at the foot of my bed.  Apparently he managed to climb onto the bed, which from the foot wasn't an easy task.  Now he was hollering for help.

I tried to calm him, as he flopped and flailed around.  He was frantically trying to get off my bed, but didn't seem to know where he wanted to go.  I told him he needed to get back onto his bed.  My cautions to be careful, or he'd fall between the beds, seemed to fall on deaf ears.  He nearly slid into the ever widening gap created by his efforts to move.  Grabbing his pants and arms and pulling him at an angle, he finally rested atop his own bed.  He continued to flail about, ineffectively pulling at a jacket he had put on and his pants.  He insisted he needed them off "now."

Helping him remove his red jacket wasn't difficult, but I wanted him to keep on his pants.  He continued to try to pull them down.  Unfortunately, he pulled on his catheter, as he indiscriminantly shoved him thumbs into his waistband (and missed), as he attempted to remove his pants.  I told him, "Stop that!  If you pull on your catheter, it will hurt you and you'll bleed.  You need to leave your pants on to protect the catheter bag."

"No!"  He frantically made another attempt to remove everything from his waist down.  He likes to be naked as a jaybird.

"Sweetie, you have to leave your pants on.  Your pants protect your cath bag.  It's the last bag I have.  If you poke a hole in it, we'll have a real problem.  Do you remember when you poked a hole in the last one?"

"I didn't!"  he exclaimed, protesting that it wasn't him who put a hole in the bag.  But, the memory of what the previous incident must have been coming back to him.  He had somehow poked a small hole in his cath bag and the contents leaked onto his bed.  The waterproof cover prevented complete ruination of  his bed, but some urine had overrun the mattress edges, still leaving me with a difficult cleanup.  Cleaning the mattress left wet spots, which needed time to dry.  He was unable to use his bed, until everything was dry and remade with fresh linens.  He had been forced to spend the night reclined in his electric chair.

"Honey, you need to leave on your pants to protect your bag."

"I hate this cath.  I want it out!"

"No, dear.  You have to keep it."

"I want it out!" he yelled.

"I'm sorry sweetie, you're stuck with it for another month.   Then the doctor can evaluate you and see if it can be removed. Don't pull on it or you'll hurt yourself and be stuck with it even longer."  I continued to repeat the reasons why he needed the catheter and why he should leave on his pants to protect the bag.

I moved his electric wheelchair to the side of his bed and helped him transfer off the bed.  As he sat in his chair, his agitation lessened.  He tends to be much calmer when he sits in his wheelchair.

"What on earth were  you doing?"  I asked him with a big smile.

"I was getting on the bed."  He seemed confused and disoriented.

Calmly and still smiling, I said, "But, you were on my bed.  Why were you on my bed?"

"It looked inviting."

With this, I had to laugh.  "Honey, our beds are the same."

"No, your's looked better."

"That's only because you kicked your covers into a pile."

"No, your blankets are nicer."

"No, dear, our blankets are the same.  I bought them both at Costco.  They are the same size, with the same item number.  The only difference is the color and pattern."

"No, your's is better,"  he said resolutely.  He developed the idea that my blanket was better than his some time ago.  Nothing would change his mind.

"So, was my bed better?"  I asked, curious to discover his thoughts.

"No.  It was worse."

All I could do was smile and laugh.  The incident had passed and I could leave him to his own devices for a while.


#Dementia  #Dementia humor  #Humor

I Almost Had It...

My son, age 40, began needing more bathroom help after he broke his hand doing parkour in the bathroom and failed the landing.  (For those who don't know him, he was simply trying to use the facilities.)  Now at night, he normally needs assistance every two hours.  Last night was no exception.

It started with him trying to reposition himself in bed.  After a few minutes of lifting, pulling, and pushing his various body parts into a new configuation, he realized it was time for a potty break.  I pulled his legs over the edge of the mattress, lifted him into a sitting position, and transferred him into his wheelchair.  I pushed him into the bathroom, positioned the wheelchair, locked the wheels, and lifted him into a standing position, as I have done countless times.  This is when it all went wrong.

Usually after I lift him, I nudge his shoulder with mine until he is upright and then use my foot to move his left foot into place.  This time neither happened.  As soon as I lifted him up, he grabbed the side bar and began twisting towards the wall.  My grip around his waist tightened, as I struggled to hold him.  I heard a light thud, as his head hit the wall.  His twisting and resistance increased.  Turning my head, I saw that he had a death grip with both hands on the grab-bar.  This was completely throwing him off kilter.

"What are you doing?"
"I've almost got it."
"Uh... no.  I'm going to sit you back down (into his wheelchair.)"
"No!  I've almost got it!"

<----  (What he thought was happening.)

(What was actually happening.)  ---->


"Uh... no," I said laughing, knowing that proprioception is no longer his strong suit, "we'll try it again."  With that I forcefully guided him back into a sitting position.
We reinitiated the procedure, this time successfully.

"Is your head okay?" I asked.
"Yes."
"What were you doing?"
"I was trying to move my foot," he answered.  Sometimes when he stands, he'll end up on his tiptoes, as his feet cramp.  This combined with trying to move a leg that wouldn't move started the fail.  Still protesting, he said, "I almost had it."
"Uh, no," I said again, laughing.  "That wasn't working. You konked your head and were twisted and so far off-kilter I couldn't get you upright."
"Yeah, but I almost had it."

#parkour #proprioception  #wheelchair

Is this the Mafia?

My husband Terry quietly rolled his wheelchair up to me in the living room one evening as my son Andy and I were watching tv. Whispering, he asked me a question.
"What?"
He repeated what he had asked.  Only the word "mafia" was clear.
"What?"
A little louder, he asked yet again.  "Is this the mafia?"
Andy and I looked at each other.  This was new and interesting.  Puzzled, I answered, "Is what the mafia?"
"This.  Is this the mafia?"

Andy and I smiled and chuckled, because we were still clueless.  I asked Terry, "What are you talking about dear?"
Quite serious and concerned looking, Terry repeated, "The mafia.  Is this the mafia?"
Clearly Terry had just woken up from a nap and was confused.
"No, this isn't the mafia."
With something else on his mind, Terry mumbled something else.  After several tries, the word "seat" became clear.  Finally, another question, just as nonsensical formed.  "Is the seat vacant?"
I asked, "What seat?"
"The seat... the seat!"
"Dear, I have no idea what you are talking about."
My son and I gave each other puzzled looks.  Neither of us could figure out what was perculating through Terry's mind.
Terry mumbled again... "orange."
"What?"
Once again, he could only muster a single word... "orange."
"What about orange?"
With this question, he couldn't formulate his thought.  Holding his hands cupped in front of him, he began  bouncing them slightly, as though this was a clue.
"I'm just not getting it dear.  I think you woke up and are still half-asleep."
Terry looked around, quite confused.  As near as my son and I could determine, the "mafia" part of Terry's delusion came from a show about JFK.  The "seat vacant" came from a news report of Governor Perry being indicted on bogus charges.  And, "orange" came from a new medicine bottle, which had an orange top.  It's funny what the mind will construct.

Spontaneous Wheelchair Attack

 7/29/2014

One evening I needed to drive a visitor, Kyle, home to a nearby city.  After telling my husband to behave and not leap back and forth from wheelchair to bed, I left.  Ten minutes later, an urgent text message from my son informed me my husband had taken a fall.

Dashing into the house, I found Terry sitting on the bed, seemingly okay.  He's breathing.  No blood.  No broken bones.

"Are  you okay?"  I asked Terry.
Looking down and mumbling, he said something I couldn't understand, which was par for the course.
"Are you okay?" I asked again, this time louder.
"Yes," he said, a little agitated.
"What happened?"
"I fell off the bed."
"Did you hurt anything?"
"I hit my head," he said, somewhat angrily.  He sat fiddling with the control on the wheelchair. "I can't get it to do anything!"
"What are you trying to get it to do?"
"It won't move!" he said, clearly frustrated.
"Honey, it's in the recline mode.  It has to be in the drive mode to move."
I touched the button that changed the chair to drive mode and saw the setting was in P3 mode, a fast speed.
"Why did you have it so fast?" I asked him.
"I didn't.  The chair did it on it's own."
"No, dear, the chair did not do it on it's own.  You have to select P3 for it to be in the P3 mode."
"It did too.  It did it on it's own and I hit my head," he said, adamant and somewhat pouty.
"Where'd you hit your head?"
"There!" he shouted with frustration, as he waved vaguely at the floor at the foot of the bed.
"What on earth were you doing there?" I asked.  How he could have landed that far from where the wheelchair was positioned and where he sleeps in the bed was a mystery.  But, my real concern was for his head.
"Where'd you hit it?"
"There!" he shouted again, flinging his arm wildly in the same general direction as before.
"No dear, where'd you hit your head?  Did you get hurt?"
Still angry, he pointed to two positions on his head.
"Let me look," I demanded.  With a more gentle voice, I said, "I need to see if you are injured."  With that he instantly became like a little kid, calmed from the anger and all consumed with the details of his injuries.  I inspected them and  found no marks, bumps, or cuts.  So far, so good.
"Okay, it looks alright.  Stay here.  I'll be right back."
I went to Andy and asked him what happened.
"He was on the floor," Andy said.  "I don't know what happened."
I went back to Terry and began an interrogation.
"Tell me again what happened," I said.
"The wheelchair went beserk, going in circles," he said, instantly angry and frustrated.
"What?  How did that happen?"
"The chair started by itself."
I smiled and chuckled.  "Honey, the chair can't start by itself."
"Yes it can.  It does it all the time."
"No, it can't.  Let me show you.  When you get out of the chair, you turn it off.  Right?"  I said as I flipped the small on/off switch.  "Do you see, the chair can't move," I said, moving the main control.
"No, the chair moved," he insisted.
"Then you must not have turned it off."
"I always turn it off."
"No you don't.  I have come in lots of times, found it on, and turned it off myself."
Terry looked down and a little glum.  He had been shown the chair couldn't move when turned off.  He appeared to be struggling to meld that fact with his belief that the chair moved on its own.  The two ideas couldn't mutually be true.

Seeing that I wasn't getting answers that made sense, I said, "Alright, tell me again, what happened."
"The chair went crazy, started going in circles and wouldn't stop."
"How did that happen?"
"I was trying to... " at this point Terry seemed a little confused or distracted and couldn't really explain.
"I know what happened," I said.  "You tend to flail... "
He interrupted, "I do not!"
I laughed.  "You know you do.  You flail about in bed and kick the covers.  They got caught on the control.  You pulled the covers and that tugged the control."
Terry argued the point about how the chair went by itself a few more times, reluctant to accept the evidence.  Finally he said, "Alright, the covers got caught on the control and made the chair go in circles."

I sat there for a few seconds, letting the idea sink into his head.  "How did you fall on the floor?"

Terry flung his arm to the side, indicating he fell off the side of the bed.  "I hit my head!"

Trying to figure out exactly how he fell, I continued, "Yes, I know, but, did you roll off the side of the bed?  Try to stand up?  Were you transferring?" 

"I didn't fall.  I jumped out of bed," he said.

"What!?  You jumped out of bed?"  I said smiling and began chuckling.

"Yes," he said proudly, "I jumped out of bed."

"Why on earth would you jump out of bed?"

"Because the wheelchair was going crazy in circles, banging into everything."
"So it made sense to you to jump out of bed into the path of an out of control wheelchair, when you could have stayed in bed and been safe?"
"No place was safe from that wheelchair!"  he said, confident that statement proved the evilness of the wheelchair, due to the shocked look on my face.
I dropped my head, silently shaking "no."  Terry's illogic, although concerning, was too funny.  The way the beds were situated, he must have fallen between the two halves.

There was no point in continuing the debate.  Although Terry was still angry at the wheelchair, he was happy.

The following morning, I decided to ask Terry again what happened.  I began by reinspecting his head and checking his body in the light of day to insure no damage went unnoticed.   I needed to get to the bottom of what really happened.  The conversation rehashed the previous evening's talk, with a little more information.  He confirmed he had jumped or fallen between the two halves of the split-king bed.
"How did you end up at the end of the bed?"
"I crawled there."
"Why did you crawl there?"
"To get out of the way."
"You don't think you would have been safer to stay in bed?"
"No!" he exclaimed, and remembering how effective his statement had been the night before, added,"No place was safe from that chair!"
"Isn't that rather like Jaws and jumping into the water rather than staying on a boat?"
Terry paused and thought about that for a second, which I took as a good sign that he was a little more rational that morning.  He started to argue the point, but instead began laughing.  He could see the folly in his actions.  Ultimately the incident showed that leaving him for short trips had become a greater risk.

The Descent... Slipping into Dementia

Recently Terry, my husband, had been exhibiting dementia type symptoms.  Sometimes he doesn't know how to work things.  Afterwards, he has no memory of his behavior.

Last night proved to be one of the most frustrating evenings I've had with Terry in a long time.  His behavior was that of a severely overly tired little child, but in a grown man's body.  It began when he called my name early one evening.

"Jane."
Going into his room, I asked, "What do you need?"
"I don't know."
"Are you trying to do something?"
"I don't know."
"What do you want to do?"
"I can't get anything to do anything!"
He was sitting in his electric wheelchair, unable to get the controls to work.  Repeatedly he pressed the horn button and the display screen, as though either of them might make the chair move.  Patiently I explained to him for the umteenth time that there was a small lever to turn the chair on and off,  two buttons, one to move the chair and one to recline the chair, and a wheel for more speed control.  He looked confused.
"What were you trying to do?" I asked.
"I want to get into the bed." Terry often took naps during the day.  Even more often he fell asleep in his wheelchair.
"Let's leave the chair off then and I'll help you transfer."
"But the chair won't do anything."
"That's okay, because you're going to get into bed."
"I don't want to go to bed."
"Okay.  You said you wanted to get into bed.  Do you want to stay in your chair?"
"No."
"Do you want to get into bed?"
"Alright then, I'll help you get into bed. Is that what you want?"
"Yes."
As I started put my arms around him to lift him, I asked him again, "You do want to go to bed, right?"
"Yes."
"Okay, I'll help you transfer, but you have to follow my instructions.  Alright?"  Following instructions wasn't Terry's strong suit.  He liked to do things his own way, which in his current situation, didn't work well.
"Okay."
He had been fiddling with the controller the entire time and managed to turn the chair on.
"First turn the chair off.  It's not safe to transfer with the chair on."  I said, as I reached over and flicked the lever to the off position.  I put an arm around him.  "Next, scoot forward in the seat."
He pushed up on the chair arms to lift himself slightly as I helped him slide forward.
"Now, rock three times.  On the third time you're going to stand.  I don't want you to throw yourself towards the bed.  I want you to stand."  He rocked and I helped lift him to his feet.  Immediately he tried to lunge towards the bed.
"No!  Don't do that!" I scolded, as I resolutely held him in position.  "I want you to step to the side.  Hold onto me.  I have you."  I tapped his right leg.  "Move this leg towards the bed."
He took a small step.
"I'm going to help you turn and sit on the bed.  Don't throw yourself on the bed.  Sit on the side."
He turned, sat, and immediately tried to throw himself backwards.
"No!  Don't do that!  You'll hurt your back."  Again I scolded him.  "Do you need to move back farther?"
"Yes."
I placed my knees against his and with my arms around him, pulled him up slightly as I pushed him farther onto the bed.  Immediately he again tried to throw himself backwards.
"No!  Don't do that!  You'll hurt your back," I repeated.  "Don't you remember the doctor and therapist told you how to get into bed?  I want you to lie down sideways and roll over onto your back, if you want to be on your back."
I guided him down sideways and held him in position as he tried to twist onto his back.  "Pull your legs up onto the bed before you turn over."
As soon as his legs were up, he rolled onto his back.  Instead of lying there, he began rolling side to side so forcefully he nearly rolled off the other side of the bed.
"Stop that!  You're going to fall off the bed!" I raised my voice, partially out of fear that he would escape my grip and partially because he is quite deaf.  I wanted to make sure he heard me in his stupor.  He stopped the rolling and began kicking his legs.
"What's wrong?"  I asked him.  I had to repeat the question several times, before he would talk.  
"My pants!" he exclaimed.  Kicking his legs caused the pant legs to ride up, nearly to his knees.  I held him in place with my left hand and straightened his pants with my right.
"Okay, they're straight.  Now, are you alright?"
"I don't know!"
"Let me get you comfortable!  Lie still for a minute and let me adjust things."  I quickly raised the bed into more of a sitting position, placed two pillows behind his head and upper back,  adjusted his clothes, and put a blanket over his feet.  "Are you comfortable?"
"Yes," he said.  A sigh of relief nearly escaped me, but it was interrupted by his immediate fidgeting.  An endless cycle of positional demands began in earnest.
Repeatedly he wanted to lie down in bed, sit up in bed, or get into the chair.  I struggled with him to stay in the bed.  He would ask for covers and immediatley kick the covers off .  Each time he changed positions I would ask him what he needed to be comfortable, and adjusted the pillows, covers, and elevation of the bed accordingly.  As soon as I finished, he would want to change position again.
"What do you want to do?  What do you need to be comfortable?" I asked him repeatedly.
"I don't know," he whimpered.
I took his face in my hands and lifted his chin.  "Look at me.  Look at me." Getting him to look me in the eye when I talked to him was always a struggle.  "What do you want me to do?  What do you need?"
"I don't know!"
He began thrashing wildly in the bed, trying to take his clothes off.  I had hoped he could lie down for a nap with his clothes, so I wouldn't have to redress him later.  But, he wanted his clothes off.  And, he had a thing about wearing pajamas.  He claimed he couldn't wear pajamas, no matter how many times I explained the advantages.  They mitigated him from being too warm, as when his legs were together or an arm laid against his body, or too cold, after kicking covers off, and leastly, pajamas protected the linens from body sweat.  In trying to pull off his clothes, he was pulling off his "pull-ups."
I scolded him like a little kid, while physically preventing him from rolling out of bed on the far side or flinging himself, like a flying monkey, into his chair.  "Stay in bed!  You're going to hurt yourself!"

After twenty minutes of phyically struggling with him, I could see I was getting nowhere.  His behavior was like that of a severely exhausted small child.  Many years earlier I witnessed a little girl having a melt down in a Disneyland bathroom.  Her mother, from a foreign country, was trying to calm and console her daughter to no avail. During a diaper change, the little girl began thrashing about, arching her back and twisting, kicking her legs, hitting her little fists down against the changing bed, and crying at the top of her lungs.  She laid there naked, wiggling, kicking, and screaming, as the mother was unable to secure the diaper tags.  The mother looked at me in desperation and said, "I don't know what to do!"
I said, "Don't worry.  It's okay.  She's just exhausted."
The mother seemed somewhat relieved that a stranger understood.
I asked, "May I pick her up?"
"Yes, but she doesn't have a diaper on," the mother said.
"That's okay," I said, as I scooped the unclad little girl up in my arms.  I held her close against me, with one arm under her little bum and the other across her back.  Making calming "shushing" sounds, I began bouncing her gently up and down with a soft sideways swing.  She screamed and struggled for a couple of minutes, but then quieted and fell asleep.
I so wished I could do this with Terry.  I had given him a newly filled prescription to prevent restless legs, but apparently the effects hadn't kicked in yet.  I explained to him that it might take half-an-hour or an hour, but he expected instant relief.  I told him it didn't work that way.
I could feel myself getting frustrated.  "What do you want?  Do you want to stay in bed or do you want to be in the chair?"  I asked sternly.
"In the chair," he said.
"Okay, but this is the last time!  If I put you in the chair, you have to stay there.  Do you understand?"
"Yes."
"So, you're sure you want back in the chair?"
"Yes, I want back in the chair!"
"Okay, but no flinging yourself at the chair."  Once again we went through the transfer procedure to place him into the wheelchair.  Once again he tried to lunge at the chair, instead of stepping.  He barely caught the edge of the seat.  Only my grip on him prevented a fall.  A quick push repositioned him safely in the wheelchair.
Immediately he tried to "do" something with the chair, but couldn't work the controller.  After situating the chair for him and adjusting the recline, I left him with one last scolding.  "Stay there!  Don't try to get into bed on your own.  If you need something, call me."
With this last transfer, he calmed down.  I returned to the living room, where my son waited, and collapsed on the sofa.  "Did you hear?" I asked him.
"Yes," he answered, with a look of OMG.
We both shook our heads and expressed concern over Terry's decline.  Although this incident is quite typical of  exchanges with my husband, usually they don't last as long.  Although I have an abundance of patience, this episode was trying.  How many more times will this happen?  Probably too often.  As I get older, will I be able to endure the physical demands of care giving?  Again, probably.  A friend, in an effort to console me about my body and weight (short and stout), said, "It's a good thing you're built the way you are or you wouldn't be able to do the things you need to with your guys."
Dealing with the mental aspects of dementia, that's tougher.  Holding hope that his dementia is tied to one of his medications gives me some solice.  I wish for a magic wand to wave and make him better.  Barring that, maybe it could bonk him on the head with the wand, but the law won't allow...

Mysteries of the Blue Dye and Clogged Sink

In spite of getting up many times at night for Andy, I felt good by 8 a.m. I thought, “I’m going to get a lot done today.” I didn’t anticipate any roadblocks.

I barely got started into picking up and cleaning when Terry said, “Where’d this come from?”

I looked over to see Terry holding one of the soft yellow cloths used for wiping his glasses. One entire corner of the cloth was

covered in what looked like blue ink. Worse, it immediately was evident that the blue dye transferred easily. It was on Terry’s hand, which he was beginning to flail. He has a habit of moving where he touches everything within reach.

“Stop!” I said, speaking loudly so he could hear.
He continued to flail.

“Stop moving!” I said louder.

He kept looking at the cloth and repeated voiced wonderment, “Where did this come from?”

“Stop it! Stop moving! Don’t move! Just sit there and don’t move a muscle.” I yelled. “Let me get over there.”

I had to negotiate two dogs, two large pillows used as dog beds, the bed covers Terry had kicked onto the floor during the night, and his clothes, which he also had thrown on the floor.

I took the cloth from him, picking it up gingerly to inspect the odd wet stain. I took it into the bathroom to assess whether it was salvageable. It wasn’t or at least a part of it wasn’t.

“Let me have it,” he said. I want to clean my glasses.

“No! You can’t have it. It has blue dye that transfers to everything it touches.”

“But I need it to clean my glasses.”

“You can’t have it.”

“Why?”

“Because the blue dye gets all over everything.”

“How do you know?”

“Look at your hand and the counter-top.”  Both had blotches of blue dye.

“Where did it come from?” he asked.

I scanned the top of the dresser counter. A packet of blue anti-gas pills with several of the cells popped empty laid there. It was clear what had happened. Terry had popped out one of the pills, but got it in the cloth. He then spilled his water, which wetted the cloth, dissolved the pill, and released the blue dye.

I took the yellow cloth into the kitchen, trimmed off the wet stain portion, and returned the remaining piece to Terry.
He was happy and began cleaning his glasses. As I turned and began to leave the room, he said, “The sink is clogged.”

“What? Which sink?”

“The bathroom sink.”

“Our bathroom sink?”

“Yes.”

That didn’t seem possible. The sink was new with the remodel. Nothing goes down that sink, except for soap and water. How could it be clogged?

“What did you put down it?” I asked.

“Nothing.”

“Don’t tell me that. I know you did something. What did you do?”

“Nothing!” he said, protesting. Then, in a voice that reminded me of a little kid trying to come up with an explanation for some errant deed, hoping I would buy it, he said, “Maybe it’s a hair clog.”

“Why would it be a hair clog? I don’t have any hair after the chemo treatments and your’s is short.”

In the bathroom, I figured out how to remove the plug. The plug fixture was unusual, not the typical up-and-down stopper found in most sinks. This stopper required the user to push down to close and another tap to pop it up open. Removing the stopper was easy, once I remembered how, by unscrewing the plug. I could see something stuck in the drain on the drain guard. I put my finger into the drain and swept the perimeter. Instantly I felt pain. I had sliced the tip of my finger. I couldn’t see what I had cut myself on.

I went to the kitchen and retrieved a small tool I use to clear drains. Pulling out the clog, it proved to be toilet paper. 

Toilet paper! What was toilet paper doing in the sink? Terry! This was typical of Terry.  Gads, he already had thrown two roadblocks in my way and the day was just starting.

Affordable Healthcare From a Caregiver's Perspective

The new health care bill is suppose to help people like my family.  How dare I, a caregiver for family members with a rare disease, be unhappy with the new healthcare system?

Let me explain.

I have been struggling with insurance companies over claims for my guys.  I get letters of denial  indicating the reason for the denial is "it" isn't an proven treatment for their condition.  Their condition is rare.  There is no proven treatment.  The only thing that can be done is to treat the symptoms as they arise.  The health care bill does nothing to stop denial of service.

My son, a former software engineer for Qualcomm, he lost his insurance in November.  He applied for new insurance with Healthnet.  In January, 2014, he developed aspiration pneumonia.  Who knew swallowing took skill!  I treated him at home the best I could, knowing that a hospitalization would devastate him financially.  Things were looking desperate as his oxygen levels began to drop.  Gray is a great new skin color... if you are a zombie!

I found an oxygen machine on Craigslist.  With that and left over antibiotics, he survived.  His new insurance kicked into effect on Feb 1st.  To our surprise, his general doctor and his neurologist, which appeared on Healthnet.com's website, are not allowed under the plan.  Nor is he eligible for Medicare until May of 2014.

I called Healthnet.  Wait an hour and seven minutes.  They can't help me.  Transfer me.  Wait again over an hour.  They can't help me. They say I need to speak to the department I first waited and talked with.  Wait again over an hour.  We have to apply for another insurance policy.  It will be another month until it takes effect.  Then we can cancel the current policy which doesn't help us.

This morning my husband had an appointment with his local neurologist.  We had been seeing one of the top doctors in the country, for my family's disease, at UCLA Medical Center. We could no longer make the long trip.  Today's visit, just down the street, brought disturbing news.

Our doctor told us that under the new health care system,  doctors will be leaving practice in droves.  When doctors work is not adequately compensated, why stay?  Why remain working for less than they can make elsewhere?  That combined with new regulations on the doctor/patient relationship adds the last straw.  No longer can doctors and patients email each other information.  The exodus didn't materialize.  Most doctors remained in their careers, but their satisfaction suffered, as did time with their patients.

So, who are these doctors who are preparing to abandon their practices?  Certainly they must not be the cream of the crop, dedicated, patient driven general practicioners and specialists!  Or, are they?  In fact, it is the good doctors, the specialists, who are fleeing practice.  Soon we will have a system of only bad doctors.

Who treats rare diseases?  Specialists.  Are we in trouble, in danger of losing our doctors?  Yes, especially these doctors who treat rare diseases, which according to the government is who the health care bill was suppose to help.   President Obama's rhetoric changed from "Every American is entitled to good health care" to "Every American is entitled to basic health care."  That means specialized care is out the door.

 Kiss your patootie goodbye if you get an unusual disease or aggressive cancer.


 If you care about people and healthcare, urge your Congressman to pass another bill to eliminate the current "health care" bill.  Replace it with a bill that simply says people are not required to have health insurance; the IRS may never have any power over healthcare; insurance companies can't drop a person for being ill and can't refuse to cover someone with a pre-existing condition.  Period.

Gifts for a Severely Disabled Person

Buying gifts for the disabled, especially the severely disabled, can be challenging.  Like "normal" people, wants vary depending on the individual.  The list of needs grows endlessly, often many of the same thing.

Free gifts:

A visit, even for five or ten minutes can lighten a homebound person's day.  Come armed with good jokes and funny antidotes.

Inexpensive (but appreciated) gifts:

One gift can simply be to send them greeting cards by mail.  There is something very special about receiving a card by snail mail.  It makes the recipient feel recognized.

  Candy is yummy, but be certain what the person really likes and can handle.  Don't be afraid to ask.  Swallowing can be a huge issue.  As in "Big Bang Theory," Milk Duds are for all ocassions, as are Ding Dongs.

  Soft kleenex tissues with aloe in a box with colors and designs the person likes.  Add a bow and it becomes a gift.

  Spray on sunscreen

  A good back-scratcher.  I found that plastic spaghetti spoons work wonderfully!

  Non-slip adhesive ducks for the tub or shower floor

  Burt's Beeswax lipbalm

  Body lotion or powder

  A good cologne or perfume

  Music or movie CDs

  Movie or event tickets

  Flowers... even men like flowers, don't let them kid you.  They don't have to be expensive.  From your garden can be just as wonderful.

One or a mountain of pillows... a variety of sizes, firm to soft, some with the cooling gel or pad, a supportive "C" shape neck pillow to a large sitting-up bed cushion

  Pillow protectors of any or every size

  Pillow cases, soft, in any of a variety of sizes

Medium Cost:

  An assortment of good greeting cards.  Keep in mind that when they send someone a card, they want it to look new and thoughtful.  Humorous cards are usually appreciated.  A couple of nice sympathy cards in the mix, although often overlooked, come in handy.

  Throw blankets in colors the person likes

  Small blankets that can be used to cover the person's lap and legs.  People in wheelchairs can be prone to either sunburn or cold, especially on their knees.  They are very useful to cover spots from dining or other accidental spills.

  Aprons with pockets.  Even severely disabled people love their cell phones, have wallets and other small items they need or like to carry.  The aprons protect their clothes when they eat, so serve a double purpose.  If you do embroidery, something meaningful to the person makes a special touch.

  Character slippers... several dozen different types are available.  My husband has tiger, zombie, hobbit, and several different bear feet.  These are wonderful for disabled people who can still go out.  The slippers are great to make people smile and break the ice to talk to the disabled person.

  An "on the door" hanger with about six large compartments to hold slippers.  These compartmentalized hangers also prevent the door from being smashed into the wall when the door opens from being hit by a wheelchair.

More expensive:

 Pedicures and manicures... I treated my husband to a pedicure, his first.  My friend and I insisted that his toenails be painted.  He protested.  We ignored his protests.  We selected two colors, one a brilliant blue and the second, a glitter topcoat.  When he was finished, everyone in the salon stood up or came over to look at his feet.  I suggested to the salon manager that he take a picture, because this could open a new market.  Real men, this one being a former fighter pilot, lumberjack, rancher and dairyman, get their nails painted.  Later, at home, he happily showed visitors his toes.  

  A really good electric razor or new blades for an existing razor.

  A good set of wireless headphones for watching television.  Be ready to set them up or make sure there is someone else who can.

  A deep tissue massage, especially one that will come to the home.

  Fans, table or standing that are adjustable and multispeed

  A personal buzzer that has a button on a necklace for the patient and a vibrating and/or noise unit for the caregiver

For disabled with their own home  (make sure you check with the person first!):

  Maid service

  Window washing service... Windows are the eyes of the home.  Beautifully clean, streak free windows makes the home feel fresher, more comfie.

  A handi-man to fix all the dings and bangs to walls and doors from wild wheelchair rides.

Aluminum or brushed steel door kicks to prevent wheelchair marks on doors.  I recommend getting ones at least 10 inches high.  These install with screws.  Be prepared to do the installation or help arrange for a handiman.

For those gift-givers who have money to burn:

  A comfortable adjustable bed

  Memory foam bed topper

  A padded headboard

  A large flat screen television, since vision can often be an issue, size matters.

  A wheelchair van, with top of the line amenities and an automatic slide out ramp, capable of kneeling.  Backup navigation, a step and captain's chair for the driver, lots of cup holders, individual adjustable air vents. (Alright, maybe that's more for the caregiver than the person!)  A wheelchair modified Toyota Sienna with the side access seat would be great.

  A Disney park vacation for the disabled person and a dozen of their friends!  Disney caters to the disabled and makes access to everything easy.

Or, a Universal Studios vacation in Florida for Harry Potter fans.

A full-time night-time care-giver or nurse... oddly enough, a disabled person may require more attention at night than during the day.

And, if money is no object, full-time care-givers for around the clock everyday.  What a wish!

Bedroom Setup for Disability

My son made it through another night. Whoo Hoo! He is completely surrounded by pillows, so he can sleep sitting up. If I threw a blanket over the top, he'd have a fort. Perhaps that's what he's going for. He clings to his queen size bed, refusing to give into a twin-sized adjustable model, while trying to avoid that "hospital" look. As his disability progresses, avoiding the "hospital" look becomes more challenging.

The setup is pretty sweet and we're getting it down. On the floor next to the bed, an oxygen generator sits on one side, the "Vest" and it's machine on the other. The "Vest", an airway clearance device, beats him, so I don't have to. Looking like a life vest, it thumps his chest and back to help him breathe. His color is purple, of course! (The vest, not him... usually.)

Three fans, one overhead, one on his sidetable, and a floor stand model at the foot. His sidetable top holds a digital clock with a large readout, a small lamp (the kind with a flexible arm), lotion, a back scratcher, his phone, glasses, a stuffed toy received as a gift. The sidetable drawer contains the small essentials: oximeter, lip balm, nail clippers and nail files, and personal treasures. The sidetable shelf beneath keeps pajamas, a stethoscope, moist wipes, and a few boxes of personal items, neatly stacked and accessible. Tucked beside the bed is a "people moving pad." I don't know the official name, but that's what I call this most wonderfully simple back saver. The "people moving pad" is quilted with two handles on each of two opposite edges. One side is soft and absorbant. The other is slick and slippery. I flop it over the edge of the bed, transfer my son, and then can pull him into the center of the bed with little effort. Beside the pillows on the bed, sits a box of kleenex, the television remote, and somewhere under a blanket used to cover his feet, his little dog.

Fortunately, both sides of the bed allow wheelchair access, although it's tight. Last night I was thinking that if the room was another 5 feet wide and 5 feet deep, it would be glorious! Every house needs a large master bedroom that can be converted for care giving.

Changes yet to come include installing a floor-to-ceiling grab bar and a new countertop that will serve as a desktop. Above the desktop, his flatscreen television serves as both a regular television and a computer monitor. We just keep working on the improvements.

Oxygen and a Tank of Nonsense

1/23/2014
This morning began as nearly typical. The previous night, like those for the past week, was spent tending to my son who has aspiration pneumonia. I guess all the sweating, over-heating, and shortness of breath, wasn't just a young man with a libido.

We are trying to keep him out of the hospital or E.R., so he won't lose his savings and house to a single bout of illness. He lost his health insurance in November. He applied and was accepted for new insurance, but it doesn't kick in until Febuary 1st, 2014. As soon as nurse friends shared my suspicions (five days ago), that he had developed pneumonia, I began treating him with Cipro. Luckily, we had some. After two doses, his fever began to reduce and the sweating decreased. He was having difficulty breathing, so I jumped on Craigslist to look for medical oxygen tanks. Knowing nothing about them, I sifted through the ads until I found one that sounded promising. The fellow had used the system for his mother, until she passed. I called, he brought the system over, since he was running errands in the neighborhood. We made a deal.

When he came with the oxygen system, he plugged it in and it worked. He warned me that it hadn't been running since he lost his mom. He also said it was overdue for service, but they had purchased an extended warranty with the unit. Originally, the unit cost $1700 or thereabouts from a company in Fountain Valley (where ever that is). Just as he was about to leave, the unit began flashing and beeping an alarm. He offered me a refund, but I said no, I'd keep it.

The next day I called the company in Fountain Valley. I told the woman the situation, asked what the light meant, and questioned if was there anyway to fix the problem. She said, "First, let's see if it was his to sell." She explained, it might be a rental or bought, but not paid off. It had never even crossed my mind that it might not be his! Luckily, it was his. He had bought it outright.

Next, she said these units require a prescription. Did I have one? No, of course not. That never occurred to me either, that a glorified air pump might need a prescription. Has this country gone crazy?!

She said that in all the time she had been working, she had never encountered this type of instance. Nobody had bought a unit, without a prescription, that someone else sold.

Is what I did illegal? I don't think so. He legally had a right to sell it. I desperately needed it to save my son. That which is necessary, is legal, is it not?

#DementiaHusband #OxygenTank

Surprises of Care Giving

1/17/2014 My husband retired from the USAF as a career fighter pilot. With 737 and Lear jet ratings in hand, he was suppose to be off to the airlines. But, fate laughed and intervened. A rare genetic disease took hold just as he retired. He lost his balance and gained double vision. He grounded himself, saying it wouldn't be safe to fly, seeing how he was losing his sense of up and down.

My son, a software engineer for Qualcomm, was able to put in nearly fifteen years of programming, before being forced to take medical retirement. He shares the same genetic disease as his dad, but has a more aggressive form. The early expression of the disease is called "anticipation."

Three years ago my husband and I moved in with my son, so I could take care of them both, since my son could not live alone. This is where the fun really begins. Having two guys, in wheelchairs, with double vision, coordination problems, numbness in the fingers, toes, and feet, and strength issues led to some interesting discoveries.

The Bathoom after Terry's Visit

The first discovery being it is difficult to maintain a house with a built-in wrecking ball! My husband drives his chair like a jet. With vision and coordination problems, he inevitably ups the speed setting to fast, faster, or fastest, by merely hitting the control as his hand flails around. He can't tell where the door opening are and repeatedly takes out the door frames. Bathrooms are another issue. Often the
commode must be re-set on its base. Four times close encounters with a low flying UFO left cracks in the porcelain requiring replacement of the entire toilet. This discovery evolved over time and was expected as side-effects.

The next discovery was that we qualified for nothing. People often ask me who I have to help. I answer, "I have three people... me, myself, and I." Not only does Medicare not provide for long-term care, but we were told my husband did not qualify for VA benefits. Let me repeat this. My husband had been a U.S.A.F. fighter pilot for 20 years, but he does not qualify for Veterans Administration benefits. We couldn't believe our ears, but then, he's half-deaf and I'm getting there, so our ears aren't reliable. How can this be?

In 2004, Congress passed a bill waging a war on wealth, placing an income limit on veterans. For us, living in Southern California, wealth is considered anything over $56,760. If a veteran saved and invested his earnings, he gets penalized. Congress is rather like the soup-Nazi, "No hearing aids or glasses for you!"

Then, my son lost his insurance. Cobra ran out and Medicare hadn't kicked in. Medicare pays for nothing in regards to long term care. Social Security will provide six months of a limited number of hours of homecare for terminal patients. Do you really think I'm going to tell my son he's terminal, at any point? My son has long-term care insurance, but it only covers two years. We have to decide what the expiration date is on the bottom of his foot and anticipate it two years in advance.

I decided to begin blogging about our family last night. In order to tend to my guys, I am swapping my days and nights. It's 6 a.m. and I've been up all night. Sleep will come in a few more hours. Last night my son decided pneumonia was a fun way to keep me up... again. Several years ago he lost part of a lung to aspiration pneumonia. For several hours last night, it was touch and go as to whether I needed to call 911. A rescue inhaler saved the day, as did the "Vest." The "Vest" looks like a water safety vest. It is designed for people with cystic fibrosis. It rhythmically thumps his chest to help him cough. Even so, he coughed little. His oxygen plummeted to 84%. We have a deal that when it hits 88%, it's E.R. time. He managed to hold mostly between 91-93% for several hours, before the number slowly crept upwards.
#DementiaHusband #VA #Medicare