What's Up Doc?
Ok. Its finally time for the long promised blog on Alzheimer’s or Dementia and doctor visits. Joseph was hospitalized for a few days about a month ago. My work with Joseph and Lisa has changed drastically since then.
It all began on a Friday afternoon. I was in the family room listening carefully to Lisa’s activity in the bedroom. Joseph took the trash out to the side yard. After a few minutes, I noticed a very faint, “help” from the garage. I ran out to find Joseph on his back. It took Joseph and me almost five full minutes to get him first onto his knees, crawling into the kitchen, and finally onto his feet and sitting in a kitchen chair. He does not remember what happened, how he fell or how long he was on the ground before I found him. He reported slight pain in his neck, but nothing else. I immediately told Joseph’s son who checked in with him later that evening. Joseph said he was fine, just a little sore. He put ice on his neck and took some Tylenol before heading to bed.
The next morning (Saturday) Joseph complained of enough pain that he wanted to go to the doctor. We took him into urgent care, which quickly referred him to the ER to assess for a stroke. While in the ER, doctors tried to get Joseph to get a MRI. He tried to crawl out of the machine. Fail. By this time, they decided to admit Joseph to the hospital so they could try again to get an image. It is now Saturday night. The doctors gave Joseph some medication to sedate him and tried again. Joseph tried to crawl out. Fail. The next morning, Sunday, they gave him more sedative and tried again. Epic fail. They gave him a little more sedative for one more attempt. Joseph slept. And slept. And slept. They could not take him to MRI until he woke up. He didn’t wake up at all Sunday. Or Monday morning. By that time, the doctor decided she no longer wanted an image. Now she just wanted to discharge Joseph as soon as he woke up. He finally woke up around lunch time, but his blood pressure was low and he could not stand up without it dropping even lower. The physical therapist evaluated him and determined he needed to go to a sub-acute rehab facility until his blood pressure stabilized and he could stand and walk without assistance. He was transported by ambulance a few hours later. We were told he would be there a day or two, just until his blood pressure stabilized and he could walk; he had been in bed, flat on his back for over 48 hours. We were promised this was the only option for him since he would receive physical and occupational therapy at least twice a day. We didn’t know any better.
By the way, Joseph did not have a stroke.
We followed Joseph to the rehab facility, said good night to him, and promised we would return in the morning. In the middle of the night Joseph’s daughter got a call from the rehab facility reporting that Joseph was trying to crawl out the front door. I arrived with Lisa at about 10:00 AM the next morning. Lisa thought she could walk the 10 miles to the rehab facility so I had a difficult time getting her into the car. She also did not seem to think it was worth it to spend the day with Joseph, he is an adult after all. When we entered Joseph’s room, we found his bed was lowered all the way to the floor. There was a gymnastics mat on the floor next to him. He was on his side sound asleep. He had not eaten. Had not been up. He had not seen a physical therapist. He was wearing a wet diaper.
I sought out administrators and doctors for an explanation.. They promised Joseph would get an evaluation today (Tuesday) and start therapy tomorrow. TOMORROW!!!! The new doctor informed me Joseph would only be here for about two weeks. Yes, you read me right, TWO WEEKS!
I realized Joseph did not stand a chance of living if he had to stay here for two weeks and immediately constructed my “spring Joseph from the sub acute rehab facility plan.” I was able to get him discharged, against the doctor’s orders, late the next day. While in the rehab facility, Joseph suffered severe depression and was getting a total of 45 minutes of physical therapy a day. When he was not doing physical therapy, he was laying on his back. He was not allowed to sit up unless he someone was in the room with him. And no one was checking his blood pressure regularly. Did they really think Joseph would improve?
When Joseph got home, he stayed in bed for the first two days. At about 9:30 Saturday morning, Joseph did have a stroke. Right in front of my and Joseph’s son’s eyes. Fortunately, Joseph’s son reacted quickly and we got Joseph to the ER within 25 minutes. Joseph was admitted to the hospital again, and this time made it through his MRI confirming a stroke. Fortunately, these doctors wanted to avoid last week’s debacle and discharged him within 36 hours.
Joseph has not been the same since this episode. He now does not want to get out of bed until someone talks him into it. This morning, when I tried to get him out of bed his response was, “I don’t want to get out of bed, I’m trying to die.” He is weaker, has more trouble walking, and is more depressed than ever. He rarely wants to eat.
We can’t help but ask ourselves if we made a mistake by taking Joseph to the doctor that first Saturday after he fell in the garage. But we need to stop playing the “what if” game. We are all doing our best. We don’t have to (and can’t) be perfect. All we need is to be “good enough.” Every day with Joseph and Lisa’s diagnoses provides a new challenge and a new adventure. Later on today, Joseph was in my car listening (and singing) to the radio when the Bee Gees’ “I Will Survive” came on. Joseph turned around and told Lisa, “This is our theme song. We just need to survive one more day at a time!” Full circle in fewer than two hours!
I have learned a great deal from my experience with Lisa and Joseph with various doctors, nurses, therapists and other practitioners. I have been taking them to doctor’s appointments for over two years. Let me paint a picture of what that can be like. About two years ago Joseph complained about pain in his knee. After about two months of complaints, I finally took him to see an orthopedic surgeon. The surgeon asked Joseph why he was here. Joseph looked very seriously at the doctor and replied, “To be completely frank, I have no idea.” This was just the beginning of my frustration with medical care for Joseph and Lisa.
I will begin my rant now. I believe Joseph and Lisa have excellent doctors. They are kind, caring and thorough. However, they seem to forget that Joseph and Lisa have been diagnosed with Dementia. Or maybe they just don’t know how to work with demented patients. Joseph and Lisa belong to a health insurance plan that connects all of their doctors and appointments via computer. So, every single physician that they see must know about their diagnoses.
In the few months that I have been working with Joseph and Lisa full time, I have learned a few things that are integral to their existence, and therefore affect their pride and happiness. One, they must feel like they are valued and respected. This means they are still adults and should be treated like adults. Two, they are very forgetful! But we are all forgetful at times. If you want accurate information about their health status, you cannot simply believe what they say. This creates quite a dilemma…. How can you obtain accurate information from someone with a failing memory and still treat them with respect? Very simply. Ask Lisa and Joseph questions. Listen to their answers, and slyly look at their caregivers for confirmation. Or email the family and caregivers privately to complete medical interviews. But by all means, always ask them first! They are the patients and need to feel like their doctors trust and respect them!
Time and again when we see doctors, they ask Joseph and Lisa questions. When they seem confused about the answers, the doctors turn to me. How do you think this makes Joseph and Lisa feel? Even worse, when practitioners were giving care instructions for Joseph, they looked directly at me and bypassed both Joseph and Lisa. Lisa’s response, naturally, was anger that she was being left out of the loop and considered incompetent of caring for her husband of 61 years (she is a RN, you know). You can imagine the mayhem this caused with Lisa for days on end. As a matter of fact, she is still upset by it and often refers to herself as an “idiot” because she can’t keep everything straight. Doesn’t it seem obvious that practitioners can direct their instructions to Lisa and Joseph and understand that I am hearing everything they are saying and will ask questions if necessary?
The bottom line is that while I am very impressed with the technical care and kindness of all the practitioners I have dealt with the past few weeks, I am appalled that very few of them used communication strategies to support an Alzheimer’s or Dementia diagnosis. I learned many of these strategies in a one-day conference offered by the Alzheimer’s Association. Perhaps this is an area where more training is needed, especially as Alzheimer’s grows into an epidemic in this country. Despite the deterioration of Lisa and Joseph’s brains, they are still human. They are still adults with brilliant life histories. They deserve to be treated with respect. I am on a mission to see that this happens!