Fall risk (part 2)

Following that night I spent with Dad after my first unsuccessful shower weekend another week went by. That Friday I came to dad's house and he, again, was very weak...too weak to shower. Again, I spent the night. Mike stayed with me. Early that morning Mike went home to feed our dogs. I stayed and made breakfast for myself, Allison and Dad. I made eggs, cinnamon toast and sliced strawberries. Dad enjoyed the homemade breakfast while I observed. He was having trouble locating his mouth with his fork. It crossed my mind that he was still just tired but I messaged Paula letting her know what I was seeing. We agreed to keep a close eye on him for the next couple days. After breakfast, Allison and I hugged Dad and promised to come back that night. 

We returned, as usual, at six o'clock, Saturday. Dad was standing when Mike and I entered and it was apparent that he had lost control of his bladder. We would have to insist on a shower no matter how difficult it would be. Dad fought us as best he could, arguing, promising to shower later, getting angry and demanding that we leave. We finally caught him off guard and got him to sit down in the rolling walker. Tipping it backward we rolled him into the bedroom. He continued to protest, even going so far as grabbing the door frame. It was at that point I decided, "This is getting unsafe. After tonight I will need to say something to Paula. We have to get help with hygiene." Dad finally gave in and showered. It took a while but he definitely felt better when he was clean. We followed up with dinner and a movie as usual. It would be the last "normal" evening for a while...possibly ever. I had a gut feeling that we were about to be hit with another big wave of change. The next day would prove me right. 

Our family always celebrates birthdays on Sunday. Since my niece, Tom's daughter, turned sixteen in October, it was time for a party. Text messages flew back and forth through out the day. "What does Casey need/want?"  "Is Ann making the cake?" "I can't make it to the store, can you pick up _____?"

I had made it home at three o'clock after choosing gifts to bring and getting fruit to make a fruit salad. We began putting together our packages when I noticed I had missed a series of texts from Paula and responses from Bradley. 
Paula: Dad fell in the bathroom. I have been trying to help him and am drenched with sweat. Need help.
Bradley: I am an hour away. I'm sorry. Wish I could help. Call Dad?
Paula: He's at work. I guess I will call 911. 
Bradley: On my way back. Did you call?
Paula: Called. On way to emergency room. 

We knew which hospital so I responded: Just saw this. Meet you there. 

I quickly told Mike what was happening and we jumped in my car and raced to the ER.

As we walked through the sliding doors, Paula exited the automatic doors of the patient rooms. She walked straight to us. 

"Dad isn't able to talk other then the occasional whisper and he isn't making much sense. I haven't been able to reach Hillary yet", she informed us. 

"Okay, should I come back with you?" I asked. Bradley entered the ER just as I said this. 

"You can. They will only let two of us in at a time."

I gave Mike a quick hug and kiss and followed Paula, glad that Mike had Bradley to wait with him.

Dad was in the room immediately after the automatic doors. They had really just arrived. We helped keep him calm as his IV was administered. He was also given an automatic blood pressure cuff. During that first hour he said a total of three words. When Dad's blood pressure cuff squeezed his arm uncomfortably he belted out a breathy "JESUS CHRIST!"  A little while later when a tech came to take him for a CT scan I told him I would go with him and he managed an "Okay". That was pretty much all I heard from him that first night. 

I stood in the doorway as he was positioned for his CT scan by two talkative techs. He was very agitated and kept moving and making noises trying to voice his confusion. I continuously called out, "It's okay, Dad. Stay still. They aren't going to hurt you."  Then they closed the doors and I listened. I could hear the techs chatting and laughing as they did their job. Could they not see how confused and frightened Dad must be? I sat in the hallway, helpless as I waited for them to finish their scan. A woman in a wheelchair was in the hall with me. She was next for a scan. The waiting was awkward. Should I talk to her? Ask her how she was? Mind my own damn business? She broke the silence. 

"Your Dad doesn't like hospitals much, does he?" she asked with a knowing smile. 

"No, ma'am...no he doesn't. Ironically, he's a doctor", I replied. 

"They're the worse patients", she smiled. 

"They certainly are", I nodded, smiling back.

The doors opened and the techs wheeled Dad out and back to his room. He held my hand tightly as we made our way back. He was frightened and disoriented.That first night was a series of tests, scans, blood draws, poking, prodding and, above all, no clear answers. 

Over the next several days it appeared Dad had a break with reality. The few intelligible words that he spoke indicated that he thought he lived with his parents in Ohio. Other interesting things he said were that he had three sons, five daughters, five cats and five dogs. Dad usually knew Paula and Hillary and for some reason also knew Mike by name. He was still comfortable with me but not sure who I was. After an ultrasound it was determined that he had had a TIA (Transient Ischemic Attack) or mini-stroke. Whatever had brought it on, it appeared to have accelerated his dementia. The second night he was there he ripped out his IV three times and continuously pulled off his leads. Because of the swelling in his legs, relocating the IV to a nonstandard entry was not an option. Hillary texted me and Paula, so frustrated and out of ideas to control him. We had no helpful suggestions. 

From time to time Dad would become aggressive with the staff, demanding to leave, lashing out verbally and physically at the nurses trying to help him with toileting, changing, sitting or standing. We did our best to calm him but even we, his family, were not entirely safe. Each of us had to deal with his combative temperament. Once he managed to hit Paula in the face. He wrestled with me and Hillary. I remember after three days marveling as two tiny nurses came in to help with toileting and thinking, "Really? You couldn't find ANYONE bigger than me?" (Recall, I'm 4'11". Yes, they were that small!)  The few times that he would remain calm we would try to explain to him that he had had a stroke. This explanation never stuck for more than a few minutes and eventually he would demand to know what was going on and try to get up to leave. Ultimately, we had no choice but to allow the nurses to sedate him for the safety of everyone including Dad.

Hillary covered many of the day shifts while Paula and I covered afternoons and evenings. The stroke ward was understaffed and it was important that we tag team it until either Dad remained cooperative or the staff was able to cope with his bouts of frustration.  Doctors took me and my sisters aside individually and counseled each of us that it was no longer safe for Dad to live alone. Clearly arrangements would have to be made. By day five, the neurologist decided Dad should be released to a rehab facility for seven to ten days. I took the afternoon off to relieve Hillary and she went home, half delirious with exhaustion, to sleep it off. I stayed and awaited transfer orders. Around three o'clock we were told a transport to the rehab facility had been arranged and Dad could get dressed. Bradley stopped by with shoes for Dad and helped me dress him for transport. Still unable to stand for more than a few seconds Dad wanted to leave immediately once he was dressed. Bradley and I helped him to sit in a recliner in his room for the remainder of the time as we awaited his ride. It was clear he still was not in reality. He was sure that on the other side of the bathroom was a living room and wanted to go lay down on the couch. Dad also was convinced his house was only two blocks away rather than across town, and that he could easily walk there on his own. 

Finally the nurse came in to tell us the transport was there and asked if he was ready. We would have preferred she had worded that differently. Of course he was ready. 
"Okay, let's go!"  Dad said, trying to stand. 
"No, Dad, they're going to come up and get you", I said trying to keep him in his chair. 
"Why? I'm just going home", he said.
"No, Grampa", Bradley explained, "They are taking you to get physical therapy."
"But I can walk just fine", Dad insisted angrily.
"Dad, you can barely stand", I said firmly, still trying to restrain him as he attempted to push us out of the way. 
"Grampa, everyone leaves on wheels", Bradley said, "Even you."
Dad calmed down. 
I knew the transport people were a few minutes late so I went out into the hall to see if they were on their way, There they were. Instead of a couple orderlies with a wheel chair, two huge guys were rolling an ambulance gurney down the hall. I went back into the room and quickly whispered to Bradley what was coming. 
"This is going to be bad", he said with a look of fear. 
"I think we should get out in the hall and let the transport team do their job", I suggested. Bradley agreed and we cleared out, waited and listened.
From inside the room we heard a few profanities from Dad followed by a loud, "Why do I have to go on there?" 
"Sorry, sir. That's just what the orders say", one of the orderlies replied. A few seconds later they wheeled him out. Dad didn't see us in the hall. I grabbed his things and Bradley helped me to my car. 
"Wow", he said in the elevator, "I'm surprised that went so calmly and quickly!"
"Really?" I smiled, "I'm more surprised the nurses weren't cheering and calling out 'Bon Voyage'!"
We both giggled. A rare moment of humor before the next storm.

To be continued....

Time for a summit meeting (part 1)

Having a family full of stubborn people, myself included, makes it particularly difficult to draw the line where family care transitions to professional care. My personal belief is that when the patient exhibits behavior or concerns that threaten the patient's health or survival, it is time to discuss easing into, at the very least, a daycare or assisted living solution. Such indications appeared to be surfacing recently. Dad's ability to communicate effectively is becoming more compromised as weeks pass. He is sitting in his chair far too long and, as a result, losing muscle tone and causing a noticeable amount of edema (swelling/fluid retention due to lack of circulation) in his ankles and feet. These are all bad signs but the worst indication happened two month ago.

Hillary had sent out several texts regarding one of the gates to Dad's backyard being left open. She speculated that either the gardener had been leaving it open or possibly an intruder was getting into the backyard. Either possibility was unacceptable and the gate needed a lock immediately.  Tom offered to acquire one and handle installation.

Being very stressed about Allison's school work, Kelly's graduation schedule and other pressing matters, I have been trying to bring Mike along with me when caring for Dad to help alleviate some of the stress. My Thursday and Friday visits came and went as usual. Saturday came and Mike accompanied me with the intention of clearing some of the dead trees and shrubs from around the house. As we pulled into the driveway we saw Dad walking around in front of the carport with Buddy running loose in the yard.  This was very unusual.  We walked back in and sat him down for dinner, keeping this change of behavior in the back of our minds. On the positive side, he did seem to know who we were, for the most part, but why was he out in the driveway? Had one of his other caregivers just left?

After dinner, I sat down and watched a movie with him for a bit. When it was time to leave, we said goodbye as usual.

"Don't forget to go inside and put your feet up after we leave", I called behind me, but as we got in my car we realized he wasn't standing up on the porch as usual. He had followed us down the brick stairs to the carport and into the driveway. I waved again and told him to go inside but we were not convinced he would follow instructions.

Beside my Dad's property is a little neighborhood. After exiting the driveway we pulled into the neighborhood and parked the car. Mike got out and walked over to the edge of Dad's property and called me on his cell phone. I could hear the wind blowing through the phone as he watched and reported back to me.
"He's still outside....now he's walking toward the front of the house.....looks like he's trying to open the front door..."
"He won't be able to", I said, "It's locked".
The wind continued to whistle through the phone line.
"....okay, he looks like he's bending over to get something. Is there a key under the mat?"
"I'm not even sure there is a mat. No, there wouldn't be a key there. Come on back, we have to go back and help him".
Mike came back and got in the car and we drove back down the driveway. I got out and walked over.
Taking Dad's arm I said, "Did you forget? It's okay, Dad, you just forgot..."
"No", Dad said, trying to cover for himself, "I was just checking to see if there was a card to get in the side door".
Puzzling, his use of the word card instead of key.
"The side door is unlocked, Dad. That's the way you came out."
He looked at me in disbelief.
"It's okay, Dad. We understand", I said.
"Understand what", he replied, almost offended that we didn't buy his explanation.
"You just forgot, it's okay."
"I didn't forget", he mumbled indignantly.
He climbed the stairs shakily and crossed the back porch. We waived and honked as usual and drove around the corner into the neighborhood street. Again, Mike walked back to see if Dad had gone inside.
"Okay", he reported, wind still blowing through the connection, "He's not outside and the light is off. You can't turn out the lights from the outside, right? He must be inside."
Satisfied Dad was safely in the house we went home...but the incident continued to haunt me. I decided to write an email blast to all the caregivers relating what had happened and asking who was the last person there and what time they had left. I was really hoping that when we had arrived and he was in the driveway perhaps we had just missed someone and he had not been out there long. Responses were immediate.

Paula:  "Well , damn! Maybe exercising him by walking around the driveway isn't such a good idea after all."

Hillary:  "I'm no longer walking him out front around the circle, in fact, backyard only from this point forward! Thanks for the warning, very concerning, indeed.."

Bradley:  "We left Grampa's house around 2:30 this afternoon.  I put the kiddo in the truck, then turned around and Grampa was standing right behind me.  I thought it was odd but I was glad to see that he made it all the way out there no problem (he used to be right there when I would leave). Buddy was not outside when we left so he must have gone back inside and then come back out with Buddy at some point.  That is concerning.  Thanks for the heads-up." 

Then it struck me and I responded to all, "Maybe there is no intruder and the gardener isn't leaving the gate open. Maybe Dad is the one leaving it open". 

There was no response. I expect that the possibility might have been pretty scary and no one knew quite what to say. This would take some thought.

Mike and I again discussed something that we had talked about before: calling a family meeting to discuss dad's condition, it's effect on our daily lives and the need to bring in outside help. 

I composed an email:

Hi guys,

I am requesting a "state of our Dad" meeting to make sure we are all in the know about what is going on, his prognosis and the care plan going forward. It is important that we all be in the loop and have a say in decisions that effect our daily lives.
Let's come up with a time and place to discuss.

Thanks. Love you all,
Erin 

I bounced it off of Tom first to see what he thought. I knew Tom also believed, like me, that it was time to explore home care options. Tom agreed with the message and I sent it to both sisters, my nephew and his wife. At first the message was not well received by one caregiver who thought the ulterior motive was to discuss putting Dad in a home (no names here, everyone is entitled to a certain amount of natural reaction to proposed changes). After much discussion and reassurance that this was not on the agenda at all, a place and time was set for a family "summit meeting". There would be two weeks to prepare. We all had topics we wanted covered so that time was spent doing our homework. 

To be continued... 

Mike vs The Freezer

We have all been taking turns caring for Dad in his own home for a few years now and part of the job is to take care of the home as well. We have had so many household issues to deal with...too many to count. Most of the time, with the exception of laundry and dishes, the larger issues don't get any attention until they become minor catastrophes. So far we have had to deal with crashing computers, a broken water pipe in Dad's workshop, two faulty toilets, broken hot water heater, broken air conditioner (this is a very big deal in Texas), a broken water pipe in the back yard that caused a flood and leaky faucets. Hillary and Paula can always be counted on to make time for maintenance appointments and other emergencies that crop up. Occasionally someone will step in before something breaks to fix a problem before it becomes a major issue. For me, that someone is Mike.

Mike is very proactive when it comes to keeping Dad's house in reasonably good condition. He regularly checks for issues and when something is getting out of hand he will step in and take care of the problem. For example, two years ago we had one of the driest Texas summers in years. Many trees did not survive the harsh conditions. The next year when Spring came around Mike and I would often count the dead trees on route to wherever we were traveling. It was a little spooky seeing how many dead trees lined the roads. Dad's property was no exception. Many of the trees and bushes didn't make it and just stood there rotting on the inside. Mike took it upon himself to trim away much of the dead branches and shrubbery threatening the integrity of the house. One such tree (I have referred to it as "Treezilla" because of its sheer size and it's threat to the electrical line running to the house just under its branches) proved to be an all day task. Mike spent the better part of the day just removing its branches. After that he gradually cut it down until it was just a hollow stump. It had rotted straight through the middle. We have never ground down the stump. Mike is so proud of it that he wants to remove some of the bark and carve "The Lorax" into it.

Most recently when we were visiting Dad, Mike noticed how crammed with food the freezer in the kitchen was becoming and decided to relocate some of it's contents to the second freezer in the pantry. To his dismay he found that that was not possible. The pantry freezer was so iced over there was no room for additional items. I stood beside him as we observed, awe struck, the growing iceberg that had engulfed it's contents.

 

"My favorite part", I said, breaking the silence, "Is the bag of ice frozen into the ice.....'cause you never know when you might need some, ya know,  ice to go with your...um...ice".
"Yeah...", he responded, still staring. I could hear the gears in his head turning and knew he was coming up with a plan of action. Clearly a simple defrost was out of the question as that would cause a flood and create a problem with the wood floor that would be considerably harder to fix.

The next time we came over he brought his cordless drill and a few tools to start chipping away at the freezer. He knew this would be more than a single night task. He began by drilling holes in the ice to loosen large areas.  I stood by with mixing bowls, filling them with the chips and chunks, occasionally taking them into the kitchen and dumping them in the sink. By the time we needed to call it quits Mike's drill had died and he had begun using a screw driver and a hammer to carve sections of the ice. This approach turned out to be more effective then the power drill. Mike's hands were red and sore and both sides of the sink were full of ice. As hard as he had worked and as much progress as he had made, he wasn't even halfway through.

The next time Mike came with me to tackle the task again, Hillary was still there, once again addressing the daunting issue with Dad's favorite bathroom. I tried to keep Dad distracted while Mike and Hillary worked, checking occasionally to see if Mike needed me to empty any buckets of ice. Hillary could hear him chipping away at the ice in the feezer and said, "It sounds like you are sculpting a statue in there".
"It really does!" I agreed.
"I am", Mike called out. "I'm sculpting a freezer...might take me a while..."
It took three visits for him to finish. During that time we unloaded several expired food items. The oldest thing we encountered was a pack of ham from 2008. It was so far gone that it was unrecognizable as ham. Before we read the label we thought it was a package of tortillas. It's safe to say this was a job long overdue. Knowing the time and effort Mike had put into his freezer sculpture, I sent before and after pictures to my siblings. They were all very impressed and grateful.

"Wow! Great job Mike!" Tom said.
"I noticed all the room last time I was there", Paula responded, "I didn't know who had done it. Thanks, Mike!"
"Yea!! What a monstrous task! What should we fill it with? How about ice cream and popsicles?" Hillary asked brightly. She had already thanked Mike several times while he was working.
"Frozen pies!" I suggested.
Later Paula and Hillary texted Mike directly, "We really appreciate what you did with the freezer. Thank you so much!"
"You all do so much, I felt I should contribute", he responded, not wanting to toot his own horn.
"You do a lot, too!" Paula pointed out, "You cut down that tree and stacked all that wood!"
"It was my pleasure", he replied.
"Thank you so much for going the extra mile", Hillary said.
Mike appreciated their acknowledgment. "Family", he answered.
"<3", each of my sisters responded.

To be continued...