I promised myself I would write this blog when events settled down enough to collect my thoughts. For the past four months all my posts have been a combination of joyful happenings and travelogues. Today, I want to write about a major difficulty to this life style Drake and I have chosen. As most of you know, my father has severe dementia and has been residing in a dementia care center in Claremore, Oklahoma run by the Veteran's Administration. He is pitiful, but, fortunately, he doesn't know that. He's settled in the past year and a half to be a mostly happy two year old. He has no sense of time or place and hasn't recognized me for over a year. Basically, he eats and sleeps since he's no longer able to have dialogues, read books, watch TV, write, work puzzles or do any other leisure activity beyond those things that would interest a toddler.
Ten days ago he fell and broke his hip. He was transported to a major hospital in Tulsa for surgery and recuperation from that event. I had expected something of this nature to occur, but we made a conscious decision to not put our lives on hold waiting for the shoe to drop. This blog is not so much about what has happened in the past 10 days as it is about my responses and feelings about the events. I hope it will help others who read this when they wind up coping in similar situations.
I've learned some very hard lessons. Here's the first. I naively assumed that once my father arrived at the hospital that he would receive care for his injury. That was an incorrect assumption. I'm in Washington state trying to get a grip on the situation as well as finding a way to get to Tulsa where I knew I would have to be prepared to stay for quite a while. The Claremore care facility did everything correctly and very promptly. I got the call he had fallen at 9, and knew he was in the hospital by 10:30. I was told the hospital would call me when he arrived at the Emergency Room. By noon I still hadn't received a call. When I called, the response was along the vein of "Yes, he's here." I was listened to politely, but pretty much brushed off when I tried to explain his dementia and ask what was happening. Finally, I wised up and call my cousin Crystal, who works at another hospital, and told her what was happening. She immediately left work to go to the Emergency Room to discover my Dad in severe pain laying on a guerney in the hallway of the ER. He had received no attention, and more importantly no pain relief. He'd had nothing since the morphine shot in Claremore. She went into quick and angry action. From my end, I got the hospital to accept a verbal authorization to treat for both Crystal and my other cousin Travis, so they could at least get some comfort care established.
First lesson: Have someone (more than one someone is ideal) with authorization to make medical decisions in hand on the ground. Thanks to Crystal's relentless badgering, my Dad finally got a morphine shot and was moved to a holding room - naturally the hospital was full and there was no room available to be assigned. If I had just been soothed aside from afar, I guess my father would have laid in the hallway for hours. I couldn't get out of Washington and to Tulsa until Friday morning (I left at 4 am to start the trek to Tulsa during which I saw 4 airports and finally arrived at 8 pm Friday night.) I had instructed Crystal to approve surgery as soon as possible - it actually occurred while I was literally in the air.
Second lesson: Your on the ground emergency people have their own lives and jobs and responsibilities, and you can reasonably expect them to help during the immediate crisis. However, my father is not my cousins' responsibility. Be prepared to hire help until you get to wherever you need to be to assume the reins of responsibility. Fortunately, I used a nurse's aid service to be with Dad when he was trying to get adjusted to being in care. These services hire out skilled professionals to literally give one on one care to someone who is sick or hospitalized. Within 3 hours after Crystal arrived at the hospital I had used the service to hire a nurse's aid to be sitting by his bedside attending to his needs. It's expensive (think $20 a hour), but worth every dime. Consider that my father can't use a call bell to summon a nurse, doesn't realize there's anything wrong with him when he wakes up (every time), can't ask for anything to eat or drink, can't be reasoned with, and doesn't understand where he's at. Think of it this way: You wouldn't leave a toddler alone in a hospital bed with a broken bone. I even kept an aid hired while he was in surgery to sit in the waiting room, so she could immediately go to his room when he came out of recovery. She could also give me instant updates while I was traveling.
Third lesson: Hospitals are a business, and in these sorry times the way a business stays in the financial black is to fire people. The hospital my Dad is at, which has a good reputation, is running on a skeleton staff. They literally don't have a person to stay by the bedside of an incompetent person 24 hours a day. Actually, I discovered about 7 days into my Dad's hospital stay that the doctor can order a 24 hour a day sitter to be assigned. However, here's the catch: There are never enough sitters, and they are assigned on a priority basis with priority being given to suicides and the severely mentally disturbed. Dementia falls far, far down that list. Oh, and no one volunteered this service either. When Dad left the ICU, the doctor ordered a sitter which is the first I heard of it, but the sitter manager told me candidly that she couldn't guarantee one would be available. After a sitter was simply taken off my father in the middle of the evening and predictable chaos and a failure of care occurred, I simply continued to hire my own private nurse's aid/sitters round the clock. I quickly discovered after my Dad began to 'wake up' that bedside care was NOT my highest and best use.
Fourth lesson: Do not expect continuity of care. Over a ten day period, I have seen the same nurse twice. Every other day, every other shift there has been someone different. The only person who has continuity is the doctor - the internist (think primary care physician). Even the orthopedic team has faded from the picture. I did see the physician's assistant from the orthopedic group for about 4 days running, and the surgeon once.
Fifth lesson: Do not expect for your loved one's condition to be known to the care people who walk into the room. As far as I can ascertain, only the nurse assigned directly to him has any idea about what is happening. I have spent days being a door keeper and giving out the same spiel over and over again about his dementia, his inability to follow directions, his tantrums, his strength - which is much, much greater than they assume, and his inability to communicate except on the most elementary level. I've become accustomed to the blank stare which means, "When you stop talking to me, then I can get on with the task I was sent here to do - see, it's on my check-off chart." This has happened again and again and again and again. We've been in 4 different rooms (including the Emergency holding room) over 10 days. All personnel float all over the hospital (nurses, ex-ray, sonogram, blood drawers, etc.). I've pretty much never seen the same one twice.
Sixth lesson: Take control of care. Question everything and everyone. Start immediately. When my Dad is sleeping, I sent away the blood pressure/temperature check woman. Here's another more critical example: I made the mistake of going to the bathroom, and I was out of the room for a cruicial 10 minutes. When I returned, I discovered a woman with a portable sonogram machine putting that cold jelly on my Dad's legs and running her little wand up and down while he is fidgeting and complaining of the cold. When I asked her what she was doing, she replied that she was 'looking for clots'. Upon reflection, I realized how stupid that was. Like throwing a blood clot would be such a bad thing for an 86 year old man with a broken hip and severe dementia? I had no idea the test was even ordered. It's standard procedure - after all, the hospital needs to pay for that expensive portable machine, and in our litigious society - hey, I could sue if they hadn't looked for clots and my Dad died of a blood clot. That episode made me realize that I would have to be more vigilant because I should have turned her away and refused that procedure.
Seventh lesson: Take time to make decisions. I took over an hour to decide if I was going to let the ICU people put a nasal/gastric tube down my father's throat and into his stomach. There's a lot of subtle pressure for you to make an instantaneous decision when presented with a treatment option. The ICU doctor was all but tapping his foot (hurry up, hurry up - decide!) when he presented this treatment option. I won't bore you with the details. This was a medical necessity, but not something that had to done IMMEDIATELY. The insertion is not exactly a piece of cake for someone who can cooperate. I checked the internet to become familiar with exactly what an N/G tube was - they always used acronyms - don't be afraid to ask. I talked to Crystal. I formulated seven questions I wanted answered before I decided. Let me tell you, the ICU doctor didn't like any part of this routine, but you have to grow a thick skin and let their disapproval roll off you. Overall, I've found the nurses to be more helpful and better question answer people than the doctors when trying to get all the facts.
Eighth lesson: Unless an emergency situation develops, then all the procedures as well as the people you need to talk to about condition (ie doctors) all happens between 6:30 am and 3:30 pm. In 10 days I've never seen a doctor past 3:30. Between 3:30 and 11 - you get blood draw people, and that's about it. Of course, every situation is different, but I suspect that unless there are extenuating circumstances, all the action for every patient happens on the day shift. Be there. They don't wait for you, and no one will give you their numbers. I have discovered that you can ask to have a doctor paged and get a call back. Oh, and that information is NEVER volunteered. You have to ask for it, and I suspect be pretty demanding to get it.
Ninth lesson: Once you get control of the situation - well, when think you have control - then use your time to best advantage. If you can afford to have someone other than you sitting at the bedside doing bed care, then hire it done - the hired sitter/aid I talked about. This leaves you free to solve problems and interact with the treatment staff, and you can run and fetch. (This week I've gotten gowns, towels, blankets, food trays, toothbrushes/toothpaste, diapers, pads, sheets, ice water, requested medication, new IV bags, etc.) My Dad has never been alone for a minute - except for the time the hospital supposedly had him under their sitter care - and he managed to pull out a catheter and a rectal tube and spray the room with feces.
You can also use your time to anticipate the next steps of treatment. For instance, I used my time to figure out where Dad would be returning to at Claremore - his same ward, thank heavens. I called the ambulance service - oh, another tip, if you have someone who MIGHT need ambulance service, join and pay the annual membership fee. It will save you thousands of dollars. I figured out what will change in his daily living situation and made adjustments to his clothing that he will now be needing. I met with his primary care team at Claremore to understand what the rehab treatment plan would be, and to make it clear that I hoped they could get him walking again. (My father has only 2 things left to him - the ability to move around where he wants to go and eating.)
Tenth lesson: Give yourself permission to leave the hospital when it's appropriate. I quickly got into a routine of arriving at 6:45 in the morning and leaving after 4 in the afternoon. I interacted with everyone who would be making a care decision. I met every aid that sat by his bed and gave him direct care. Another thing I discovered is that while hospitals do run 24 hours a day, there is a holding pattern that they enter into after 4 pm and for every holiday and every weekend. For instance, my father could have gone back to Claremore on Friday, but there are no transports after 2 pm Friday - and I saw the doctor at 1:30 Friday. I got her to agree that my father would stay in the hospital until Monday. Good facilities don't take transports into their facilities except Mon - Fri. Care facilities also have a holding pattern on the weekends. Besides, I wanted my primary care team to all be on board when my Dad returned to Claremore.
The trick to deciding how much time to spend at the hospital is dependent upon how much guilt your mother/grandmother has managed to lay down into your DNA. Initially, I was sure that I wasn't meeting my mother's standard for how many actual hours I was staying up at the hospital. I literally had to step back and detach myself. My father has never recognized me once. I have his physical care covered every minute. I was wearing out physically and mentally from the constant stress. After 8 days of 10 hours (or more), and when he was clearly in no danger, I gave myself permission to not go up to the hospital, but to only check in by phone. That day I slept 13 hours. I had to refuse guilt, and stop comparing the job I was doing to the job I supposed that my mother would be doing in this situation. And, don't be fooled - it was hard to do.
I'm going to have to give myself permission to return to my life. I'm going to have to be prepared for all of this to occur again. Hopefully, I'll have learned from this event and be more effective the next time. I also suspect the next challenge will be fighting with the insurance company as the bills start to roll in. One of the things I have done is keep a calendar of what has happened every day. It could be six months before I start seeing bills. I realized I needed some prompt as to the events that have happened over the past 10 days when I start fighting the who I owe what battle.
Finally, I've asked for help. I've asked for physical help. I've asked for spiritual help. You don't have to go through these events alone. My friends in Tulsa have risen again and again to help me from giving me a place to stay, to dropping everything and going to the hospital, to staying in touch with me every single day I've been here. My friends not in Tulsa have sent me prayers of support and encouraging words daily. They have all made a difference. I am truly grateful and humbled by their care and encouragement. This is not the ending I want for my father. I've been praying for a massive stroke or heart attack. This event has led me to believe that he's not going to go out of this life the easy way. I have to be prepared to deal with this. At this point, the best I can say is I'm getting there. Heartfelt thanks again to every person in my life who has helped me deal with this.
