A New Caregiver
This Sunday’s goal; go to Emerson House, dad’s old memory care facility, grab the last of his belongings and then tell management there he won’t be coming back to due gross neglect and almost criminal incompetency. But first, a quick stop at Starbucks for some much needed caffeine and writing time.
Maybe a greater explanation would be helpful right about now.
For those of you that don’t know, in August I received a phone call from the Boise Fire Department. It was around 4:20pm on a Friday. Boise Fire had found dad in his driveway: bloody, confused, and barely able to communicate. The ambulance rushed him to St. Al’s were they discovered multiple new strokes since his last one some 10 years earlier.
Dad ended being a resident of St. Al’s from that mid August day through the first week in October. My brother and I received almost no help or communication (which means valuable information regarding his health) from St. Al’s regarding dad’s health and next steps at that point so we were the living definition of “winging it”. Dad had lost most of his short-term memory, even more speech and communication ability, and had become increasingly agitated towards the staff at the hospital along with life, which was unlike him. Through a combination of events and conversations with several people, Tyler (my brother) and I decided to move dad into Emerson House, a local memory care clinic.
Our hope at the time was that if dad had more time and care he could possibly go back home with some form of assistance. Unless dad turned into Superman, we knew there was almost no chance he would ever be able to neither live alone again nor drive his precious cars. That said we thought getting dad home with some form of 24/7 care would be the best for him. After watching grandma decline in several skilled nursing facilities dad did not want to experience the same thing, our healthcare system warehouses the old and makes the family members wish for death so their loved ones can hold onto a shred of dignity and quality of life.
O.k., I’m off my soapbox and back to my caregiving story. For the first 10 days at Emerson, dad had been angry and agitated towards the staff there and had scared some of the little “old ladies”, I say “old ladies” because some were approaching 100 while dad is only 76. Since dad couldn’t communicate well, we had thought that he was giving up and wanting to die. Along with being almost constantly agitated, he was refusing to eat and drink in addition to refusing to take his meds at this point in time. According to Emerson, it was time to bring in hospice and try to make dad as comfortable as possible while he starved himself to death. P.S. I have durable power of attorney and am dad’s health proxy by virtue of being the oldest son. Being invited to meetings where the agenda is to plan for dad’s death is not easy and frankly a creepy experience. Even having my brother there to help doesn’t take away the shear oddity of being in that position.
Based on the recommendation of Emerson’s management, we hired dad a senior sitter, basically a babysitter for old people, while they moved him from the west to east wing of the facility. The senior sitter was there for the express purpose of engaging dad to keep him from hurting others; they are not there for medical opinions or care. In fact, the first bullet point on the contract I had to sign with them states they are not medically trained and can’t offer medical opinions. This point will become important in a few more paragraphs.
On the third day of senior sitters being on the clock, I got a call from the owner Cheryl. Cheryl had amazing news. In the first 48 hours of them watching dad, he had been smiling, laughing, and engaging with the babysitters. Dad took a liking too one sitter in particular almost immediately; she brought dad a cool knitted blanket, which he basically guarded with his life. No one, including Tyler and I, was aloud to come close to that blanket. Dad had began to eat a little again, and for the first time since August wanted to put on his Levi’s instead of sweats. I was speechless and almost in tears as I was driving to see dad at Emerson while talking on my Iphone with Cheryl. This was the first good news we had received regarding dads health since August (a future post will describe how getting information regarding dad was like pulling teeth at St. Al’s).
I was still talking to Cheryl when I pulled into Emerson’s parking lot. To say I was excited to share the news with Tyler was an understatement. As it turned out Tyler was already at Emerson getting the amazing news from Stacy, the sitter currently on duty watching dad from the company. We were both speechless from happiness.
According to Stacy, dad had wanted a nap at 1:30pm. Stacy and dad had been working on a complicated model and marching around the facility during the first part of the day. She was amazed at dad’s turnaround in such a short time too. Dad had lost most of his hearing from being a retired one star general Air Force fighter pilot so talking in a group in the same room as he slept was not a problem. Dad has always been able to sleep anywhere too, he use to swear at the Delta or United pilots when they hit turbulence and woke him up when we went on family vacations.
Around 6:00pm that Friday night, we started to try to wake dad up for dinner. Emerson’s staff had brought a plate of food in but they never even looked or asked dad if he wanted dinner. They just put the food down and left. Dad was not responding to Tyler, Stacy, or I. He was also ice cold, barely breathing, and if you tapped him on the shoulder he fell over. This caused the 3 of us to go into panic mood. After several attempts to get dad’s attention, Tyler and I made the decision to call 911. The staff at Emerson might has well been a chicken with their head cut off, they could barely keep it together long enough to let the fire department and paramedics through the locked door. A quick check by the paramedics showed dad’s blood sugar was somewhere over 600, the machine couldn’t give us an exact number because it was so high.
I’m not entirely sure what the amazing paramedics did, but by the time dad got to the ER he was back in restraints fighting to get out of them. He was back to his new normal, agitated. Tyler and I are not entirely sure if dad knew who we were or how long the realization might have lasted. Dementia was basically riding a wave in dads mind at this point. The ER doctor did get dad to calm down thanks to pharma at which point we discovered dads’ stomach was “tender” according to dad. Turns out “tender” meant a significantly large kidney stone. For clarification, the term significantly came from the ER doc, not me. More than likely, dad’s pain had spiked sometime turning his nap which caused an adrenaline rush of epic proportions. According to the ER doctor, an adrenaline rush can cause the body to spike a blood sugar that high. In addition to the kidney stone, dad’s lactic level was 3.5; if it hit 4; dad would have to be placed in intensive care according to the doctor. A 4 would indicate a serious and possible life threatening infection.
Dad’s story is still ongoing and day-by-day. He is currently at a skilled nursing facility that has seemed to stabilize him for the moment. According to the latest assessment, we don’t expect dad to die today but would not be surprised if he did. He is in renal failure; part of his heart has died, is still battling issues regarding his chronic kidney disease, runs an almost guaranteed chance of a bigger stroke from a clot due to his heart disease, and has a deep tissue injury right at his tailbone which is causing pain. Dad has always been one of the toughest humans I’ve ever met; he still impresses me as the end nears. The poor guy is one tough dude!
To date, Tyler and I have suffered through enough medical meetings to understand dad is on his last leg. We understand that at only 76 years old dad is in a bad spot, he is too young for all of this. Sometimes this story called life throws us curveballs that we are not prepared for, the Boise Fire call is the perfect example. No one would be prepared for a call like that. That said, dad’s final chapter came too close to ending that night because of neglect from Emerson House, not because his story is done yet. Yes, dad had been trouble leading up to that night, but that’s no excuse for the staff to quit doing their job. The Emerson House had ensured Tyler and I that they were prepared and excited to help him even with his attitude issues.
This brings me to the complete oddity of caregiving in today’s system. I have no doubt dad probably would have told Tyler and I just to let him die that night at Emerson House. In fact, there is a good chance Tyler and I would get a severe yelling or beating for calling 911 that night on his behalf if dad could understand and fully comprehend his life right now. As a proud dad and accomplished military pilot, he has long expressed his wishes that his fortunes go to his sons, not some ungrateful healthcare system. So in a weird, almost perverted respect, we failed our dad. Dad would not want to live life this; in fact, I know dad would not consider this living by any definition. He would consider his existence a waste of good resources. However, a kidney stone operation is routine with a high success rate. Restoring his blood sugar took time but was accomplished. Physical, occupational, and speech therapy are making daily strides in the field of stroke care. As caregivers, Tyler and I made the absolute right call in getting dad to the ER that night. Welcome to the oddity which we call caregiving in this country.
I will end this by saying that “winging it” is how Tyler and I are caring for our father as his health continues to decline. There is no play manual or even script for this situation. Dad is much to young to be dealing with these health issues and Tyler and I are much to young to be making these calls for dad. We both still have to work full-time and are more than 20 years away from being in a position to retire; however caregiving has turned into a second job for both of us. The worse part is healthcare doesn’t care and does not want to work with my brother or I. The pressure is incredible and exhausting beyond belief for both of us because of this!
If you talk to Tyler and I please don’t use the trite phrase self-care, we both know we are failing at that. Right now getting dad a comfortable quality of life is preventing us from self-care, it’s the nature of the job not a choice either of us is making. Offer to send us a nutritional meal or take use out to dinner or to play pinball. Let us be kids again, even for a minute. And healthcare, please start to realize information is neither good nor bad, it is comforting. The complete lack of information from you (healthcare) is why my brother and I are struggling so hard with this. In our case, information is self-care.