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...