June 2012 Addition: My father has recently had some serious surgeries. Thank goodness he has my new stepmother to be with him. The most recent was a back surgery and he has been in a rehab center since then because they won't let him go home until he can walk around well on his own.
My stepmom told me last week that she knew his medications were not right. She's had to fight hard with the doctors and they finally changed them. She says the change in my father is remarkable. In just four days he improved so much that they now can see him going home on Wednesday. Everyone remarks to her how different he is since the med change.
It just proves that it is important to have a health advocate, preferably someone who knows you really well like a family member or best friend. You might seem fine to the doctors and nurses, but they don't know your personality like friends and relatives do. Without my stepmom there to speak on his behalf, my dad could have been permanently stuck in a facility and a wheelchair. Instead, he is finally on his way to full recovery, walking, and looking forward to going home.
The new year was rough for my family. Along with the death of my last grandparent, my family was faced with the even bigger crisis of my 67 year old mother suffering a massive stroke on Christmas Eve. She is now paralyzed on her left side, can’t swallow, and can’t voluntarily move or talk. She is fully aware and can nod, but must be fed through a tube in her stomach. After a total of six weeks at UC Davis, she is now in a care/rehab facility back in Oregon. There were a lot of things leading up to this event that we now look back on with 20/20 hindsight. I feel the lessons learned are important for me to remember as I age and to share with everyone else.
Lesson 1: If you aren’t getting satisfactory results from your doctor, get a second opinion! My mother first showed signs of deteriorating health about three years ago. She was always complaining of being cold, was walking at a creeping pace, and had a lot of back pain. Over the last few years she was treated for arthritis, pneumonia, respiratory problems, etc. But nothing seemed to work. She had her primary care doctor and it seemed to me that he just kept trying to figure it out by trial and error.
Lesson 2: Don’t forget your family history. When my mom had the stoke last month and the emergency room did an MRI, it showed she had had two prior, old strokes. It’s my opinion that many of my mom’s problems were related to these prior strokes that had been undetected. Strokes are part of my mother’s family’s history. My grandfather had several small strokes until the last one which left him completely paralyzed and trapped in his body for the last five years of his life. My mom’s brother had also had a small stroke. So here is my mom having all sorts of health issues, stroke runs in the family, and yet she was never checked for strokes. If we had known about these prior strokes I’m sure we would have been more vigilant about keeping tabs on her.
Lesson 3: By having two people there you have two people to remember what the doctor said, ask questions, or understand the information. Another factor with my parents is that they were going to their own doctor appointments but not really watching out for each other. Everyone can be stubborn about their health and privacy or just hate dealing with doctors. But I think that at a certain stage, you need someone else in on your health issues. With the health problems continuing to be unresolved, it would have been a good idea for my father to start going to her appointments with her. I’ve heard from other family friends with similar circumstances. Often a person will go alone and they will only hear what they want to hear, not understand, not question the doctor, etc. The person might come home and tell everyone else only half the story or leave out important details.
Lesson 4: Either have your list of medications on you or somewhere that your family knows of. One thing my mom did do right—she brought her medical file and list of medications with her on her trip. When we were in the emergency room and she was unresponsive, we had to answer questions for the doctors. The most important was what medications was she taking. Luckily mom had a list of everything she was taking with her and we were able to hand it over to the doctors.
Lesson 5: Be aware of changes in their behaviors. Unfortunately for my family, we were distracted when it came to watching for signs. My mom had been feeling sick for several days during our holiday vacation and she was not eating or drinking. I guess she was feeling nauseous. Anyway, as she grew weaker and weaker, we attributed her problems to dehydration. I feel that if mom had been eating properly we probably would have seen the signs as stroke signs. But because she hadn’t been eating, we were thinking dehydration, not stroke. Looking back, her stumbling while walking was a huge stroke alert, but we didn’t pick up on it. I am going to list stroke warning signs for you below, but different illnesses and people are going to have different signs. So for your family and history you need to be aware of signs that something is wrong.
Added to us not recognizing the signs, the hospital missed them too. When we reached the emergency room and took her in, they first noticed that her heart was only beating 30 times a minute. That’s extremely low. So their first priority was to focus on her heart/blood issues. It wasn’t til hours later that they realized she was also having a stroke.
Lesson 6: Don’t let the hospital/doctors push you around. Twice during my mother’s stay the hospital discharge people were pushing for her release. We didn’t feel she was ready and weren’t completely satisfied with her care. We had to fight for her to get a bed in the rehab wing and we had to constantly question the care she was receiving. As the saying goes, the squeaky wheel gets the grease. In one case my father was very stuck on a treatment he believed she needed but didn’t receive. It was important for him to keep questioning to get answers so that he felt satisfied. Otherwise, he would have been dwelling on her care for a long time.
Lesson 7: If someone has a stroke, don’t drive them to the hospital, call 911 and get an ambulance. A word about strokes in particular. There are some new drugs out that can dissolve clots. If a person gets to the emergency room with a couple of hours of stroke onset, they have a good chance of near full recovery if they get this drug. This is a lesson learned from my uncle. Because he didn’t come in by ambulance, he had to wait through the triage process. By the time they saw him, his window of opportunity for this drug was missed.
Lesson 8: Keep a diary of your condition and medications. This one comes from my uncle. He said it’s important that if you have some health issues that are of concern to yourself and your family, it’s a good idea to keep a diary. Each day you should write how you are feeling, pain levels, changes you feel that might be due to a change in your medications, etc.
Lesson 9: You must continue to eat and drink when you take medications unless specifically told not to. My dad reminded me of this one. When we first hit the hospital my mother’s heart-rate was only 30 beats per minute. If you remember, I told you my mom had not been eating and drinking and so we had initially thought she was just dehydrated. In the hospital it was determined her low heart-rate was due to her continuing to take her medicine even though she wasn’t eating/drinking. The medicine built up in her system because it couldn’t flush out. It was called Dig Toxicity because her medicine (Digoxin) had elevated to a dangerous level. It slows the electrical conduction between the atria and the ventricles of the heart and in this case, because it was too much, had slowed my mom’s heart all the way down to the 30 beats/minute.
Lastly, be aware of mini-strokes. If you suddenly go numb or lose sight in an eye but it lasts less than about a minute, it could be a mini-stroke. Turns out you can have a clot cut off blood supply and then luckily be dislodged or cleared. It could be a mini-stroke and you should have yourself checked out for that as well. It would be a precursor for a future major stroke.
Be careful, be healthy.
STROKE WARNING SIGNS
Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
Sudden confusion, trouble speaking or understanding
Sudden trouble seeing in one or both eyes
Sudden trouble walking, dizziness, loss of balance or coordination
Sudden, severe headache with no known cause