Not the scissors again
One morning I woke up to find my husband standing by the bed. He looked at me with a sheepish grin and said “I thought you hid the scissors? You better go check your dad”. One eye open, brain not fully engaged I walked into dad’s room to find him sitting there with sweatpants on and no shirt. Dangling from his chest was a mass of wires obviously cut with something. After stifling a giggle, my first thought was, “this is going to cost us a lot of money”.
Rewind to the day before, we found Dad on the bathroom floor, I can’t say why, but it did not look like he had fallen. It appeared that he had decided to lay on the floor and then couldn’t get up. The problem was we could not get him up either. My husband was a big strong man and together we just could not get Dad off the floor. Our only recourse at this point was to call 911.
The ER visit
At the hospital, they found no signs of a fall. His blood work was fine and he was not having a heart attack. The ER doctor seemed to feel obligated to do something since they could not explain why Dad was immobile on the floor when the paramedics arrived. Their answer was to send him home with a 24-hour heart monitor. With this, they attached EKG leads on his chest, gave us a portable monitor and sent us on our way. It was very late by the time we got home so I covered everything with PJ’s, said goodnight and went off to bed myself.
Sometime between late at night and when my husband woke me up, Dad found something to cut all those leads. He didn’t pull them off; he actually cut each wire. After the pocket incident, I thought I had hidden anything that could be used to cut something. Wrong again, I’m guessing it was nail clippers this time.
All the mistakes I made
The deeper I dive into this new endeavor that Dawne and I have embarked on, the more I think we could have named it “All the mistakes I made”. When looking back, it seems so obvious that I should not have accepted the monitor or left dad alone with it. At the time I was sure there was no problem. Of course, Dad would not know why the monitor was there, given his short-term memory issues.
After finding him the next morning with a chest full of cut wires, I put everything in a bag, drove to the ER and handed the staff what looked like a failed science project. The look on their faces was priceless.
What I learned from this experience was just how unprepared I was for navigating the medical community with and for my dad.
I spent years dealing with dentists, doctors and every imaginable specialist on behalf of people with disabilities. Back then there was much less understanding and acceptance. My modus operandi was to go in like a pit bull, not giving up until they received the best care possible, always bringing medical history, data on behavior, medication history, family history, etc. I went from this clear vision of what I was doing and fighting for to a muddled mess. I did not know who to turn to when my Dad’s mental state kept declining.
When it came to my dad’s medical needs, I felt woefully unprepared and often felt like I failed miserably. I had no medical records, knew very little about his family history, and he was not on any medication, probably because he didn’t take advantage of the VA benefits due him. I had almost nothing to go to the doctor with other than anecdotally what I thought I was seeing. It is important to be as objective as possible. This objectivity can be so hard when you are the direct caregiver. Keeping some kind of records – even informal ones – will help you and others see more clearly what is going on. The reason that I share all of this is that even though I had training and years of experience, I still needed help.
- Schedule wisely
- Be prepared
- Be specific
- Take notes
- Consider the future
- Ask for referrals or recommendations
- Deal promptly with conflict
You can read more about these 7 tips for medical appointments on the Mayo Clinic website; it’s a wonderful source of information.
After our ER visit, I started keeping records that helped so much when we went to the doctor or ER. One of my main concerns was how to make the doctor understand Dad’s unpredictable moods. I created a sheet to start recording behaviors. This sheet was able to give the doctor not only an idea of what Dad’s days were like but also to see patterns of behavior. To see a sample of this sheet, click here. You can also download it for your own use.♠
What about you?
- Have you found ways to cope with medical visits that might help others?
- How have you handled unpredictable behaviors?
Leave us a comment and let us know!