When a date was decided upon for the family caregiver meeting it was set for two weeks out, giving all of us time to prepare and, in some cases, argue. Tom and I had particular concerns given our work schedules and having spouses and children who depend on us. He and I, having similar interests, leaned on each other for support during those two weeks. Both taking three shifts a week each and knowing that Hillary had four to five shifts Tom and I both felt it was important to propose bringing in a professional caregiver to reduce the number of shifts specifically required of us and of Hillary. We knew presenting this idea could likely cause discord but, given the strain the schedule had imposed on our children and spouses, we knew change was imperative...so we braced ourselves and pressed forward.
The day came. We had agreed to meet on a Sunday afternoon at Paula's house. Mike and I arrived a few minutes early. No one was home. I think we were both nervous. We chatted as we waited.
"This could be really short", I said.
"Yup. I think that's most likely what will happen. Short and loud", Mike replied.
"That's what I'm afraid of".
Bradly and his wife were the first to arrive. They, too, were worried about the situation turning volatile.
Then Tom arrived, alone. He also was concerned there would be a blow out, and refused to expose his wife, Ann, to unnecessary tension. He was resolved to lighten the load that day.
Finally, Hillary and Paula arrived. They came in with drinks for everyone (the brutal Texas summer seemed to have started early). Paula began by giving us a brief review of the medical appointments we had prior to the meeting. Several medical concerns including edema and diminished mobility were covered. Then Tom opened the subject of reducing shifts. (I will not be using caregiver names other then mine and Tom's during this segment. They will be CG1, CG2 and CG3 so as not to disclose who is who.)
"I just want to say, and I know Erin agrees, this schedule can't continue the way it is", he interjected, "we all have people who depend on us and it is not fair for me and Erin to give up forty percent of our evenings when we have kids in school."
"It is way too soon to talk about a home, Dad is not that far gone", CG1 insisted.
Simultaneously Tom and I said firmly, "NO ONE is talking about putting Dad in a home!"
Stunned and surprised, CG1 replied, "Well then what ARE we talking about?"
Tom pushed forward, "We all need our afternoons available for work and Erin and I would both like to cut one shift a week. I think we need to start looking for an in home caregiver. Erin and I have both called some places to price what a day nurse would run. It is looking like $17 to $20 per hour."
CG1 and CG2 both had concerns about bringing in an outsider...actually, we all did but none of us were in a position to quit working and take care of Dad full time.
CG2 suggested, "Why don't we ask Dad's former scrub nurses if either of them would be willing to pick up some extra money? I personally would feel better if the daytime caregiver was someone Dad already knew and trusted". We all agreed after some discussion that would be a good idea. The backup plan would be to start interviewing caregivers within the month and to have someone in place by the end of the month.
It was agreed that a professional caregiver would be hired for four
afternoons a week in order to pare everyone down to a more tolerable and
balanced two shifts a week for everyone except Bradley who would remain
at one shift on Saturday afternoons. We briefly touched upon the sore subject of when it WOULD be time to consider a home. It was agreed that as long as Dad could still recognize where he was, it would be best to keep him in his own house. Beyond that we would have to play it by ear.
Regarding Dad's mobility, having had a stroke two years ago, the doctors found that one of his legs was "a peg", basically just used for balance and scooting along. We discussed his diminishing mobility and his tendency to dig and tear at his legs. It was agreed by all that Dad needed physical therapy to prolong his mobility and, with that, his illusion of independence. We also discussed installing a rail on the back porch and a "daddy cam" so we could log in and check on him during the day.
As the meeting drew to a close Paula stated outright that she knew the sacrifices that everyone was
making and how unfair it was to our families. In no uncertain terms she
made it clear her belief that Dad was no longer capable of getting
better. Our job as his family is to provide him with humane and loving
care as his disease progresses. She then thanked me saying, "Erin, this meeting was a very good idea. We really needed it".
So we proceeded with the plan: Tom and I were assigned to locate an appropriate caregiver if neither of Dad's scrub nurses were able to take the job, Hillary would see if Dad's regular doctor could recommend physical therapy to improve Dad's mobility and Paula would look into the necessary household repairs to make the home safer for Dad and marketable should we at some point need to sell it in order to fund Dad's care.
Hillary did get a recommendation for Dad to receive physical therapy. The twice weekly sessions started within a week.
In the two weeks that followed I asked Paula in a group message if she had contacted Dad's scrub nurses to see if either would be willing to help.
"Yes", she replied, "but they have not responded. I think if it was going to be a 'yes' I would have heard back fairly quickly".
"Okay, so would it be okay if Tom and I start interviewing caregivers?"
"Yeah, that would be great", she replied.
Privately, Tom sent me a message. "Thank you for that".
"No problem", I said, "I don't want this to be forgotten or swept under the rug."
"It needs to happen", Tom said, "Solidarity, sis".
"Got your back, Jack". We had formed a partnership through this common goal.
Over the next few days I called several services to set up interviews. The one thing that I kept hearing was, "We normally just place a caregiver we think is appropriate in home but if you feel you must interview them we can arrange that."
I set up the first interview for after work the following Monday. Because I had to rush home to drive Kelly to the airport for her summer trip to France I could not stay for the entire interview. Tom and I agreed to tag team the interview, with me conducting the first half, overlapping for about fifteen minutes and Tom finishing.
As I entered the office I received a call from Tom assuring me he was on his way. The director was a lovely woman named Lana. She greeted me right away and we sat and got to know each other. It's fair to say I was impressed with Lana right away and felt comfortable that she would be a fairly good judge of the type of caregiver that would be a good fit for Dad. Within a few minutes the candidate arrived. Her name was Opal.
Opal was a very chatty young woman in her early thirties with ten years of experience in hospitals. She had over a year of experience in private home health care and was eager to help.
Tom arrived and quickly introduced himself. I gave him a quick hug and we got down to business. We reviewed some of Opal's experience again. We spent a few minutes covering the required responsibilities: meals, meds, pet feeding, eye drops, engaging conversation. We made sure she was aware that Dad had a tendency to say inappropriate, sometimes even offensive things occasionally but that he truly did not intend to be hurtful. He is really a very sweet person. We also encouraged Opal to show Dad photo albums and ask questions about his life.
"Whatever he tells you he has done, no matter how outrageous, he probably did it. He is a very interesting person", I told her in parting. I said goodbye and left to take Kelly to the airport.
After seeing Kelly off I drove home and received a call from Tom on my car phone.
"So, what did you think?" he asked.
I had already formed an opinion but wanted to hear his side first.
"I thought she seemed nice. Very chatty. I have never interviewed someone before so how did you feel about her?" I probed.
"She was very chatty, that might be really great for Dad. She kinda reminded me of Peggy, Dad's scrub nurse. I think it would be a mistake not to give her a chance", he said.
I agreed and we started messaging our opinions to our sisters and nephew. Opal was in. She would start the next day.
A week passed with Opal being trained by each of us. The following Monday she would start taking shifts on her own. She seemed to slip into the role quite well.
Thank goodness we had her in place because no one could prepare us for the events of the next week. I walked in for my Friday visit and proceeded with shower night as usual. After Dad was safely in the shower, I took all the dirty clothes to the laundry room and...*sploosh*...stepped in a growing puddle. Water was dripping from the ceiling. "Not again!" I thought. We were all really getting tired of household repairs. I immediately alerted Paula who told me to use the long wrench and turn off the water at the street to determine if it was a leaking pipe or the air conditioner. After Dad finished his shower I grabbed the wrench, went out and shut off the water to the house, went back in, turned on the faucets until the water stopped and waited to see if the ceiling water stopped dripping. It didn't. It was the air conditioner.
We called the service that we normally use but were told they would not be able to make it out until Tuesday. It was recommended since there were two air conditioners to turn off the one that was dripping and close off that part of the house until someone could come out and service it. Unfortunately, Tuesday was not going to work for Hillary and neither would Wednesday because she had to take Dad to physical therapy. To accommodate us the repair service agreed to come to the house at 5:30, technically after hours but still workable for them and for us. Since it was Tom's night for a visit I told him I would get there by 5:30 since he wouldn't be off until after 6:00 and he could take over when he got there. The service man arrived as scheduled and began working. Tom then arrived shortly after 6:00 to take over. I briefed him on what we knew so far and picked up my things to leave.
"So...how'd you like having Tuesday night to yourself for a change?" I asked in reference to the fact that he had just had his first non-Dad Tuesday in over a year.
"Oh my God, that was so nice!" he said smiling. "I'm so glad we did this!"
"Yeah, it's going to be such a relief", I said. "You look like you have lost some weight."
"Been boxing a lot", he replied.
We said goodbye and I headed home. I never did hear anything else about it so I assumed that the AC was fixed.
Opal did well for the remainder of the week and I enjoyed my first Thursday off in over a year. That Saturday we would have to juggle Dad night with picking up Kelly from the airport. We opted to visit Dad earlier than usual, leave to pick her up around 6:00, and come back and finish our visit.
Early dinner with Dad was uneventful. He protested as we left but we promised to come back and watch a movie with him. Dad waved goodbye as we headed to the airport.
Mike, Allison and I were chatting about how nice it would be to see Kelly again, musing about what stories she would have about France, sure that most of them would be about all of the wonderful new food she tried. Then the car phone rang. It was Paula sobbing uncontrollably but we could barely understand her because the connection was terrible. All we could understand was "airport", "crash" and "dead". Our hearts stopped as we called her back hoping for a better connection. Please, God, not our Kelly.
"Erin, I'm so sorry to tell you this way", she apologized through tears.
"Wait! We couldn't understand you. Who's dead, Paula?" Mike and I asked frantically, talking over each other.
"Tom! He crashed his plane! Casey saw the whole thing."
To be continued...
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