The husband and I are back at the clinic in Rochester, following up on a couple of medical recommendations. We get to stay in a motel and eat at restaurants every day so I’ve decided to call it a vacation. I’m much more familiar with parking, the traffic patterns, and the locations of our appointments, so everything is going well.
We have had opportunity to look around the city during our wait time. It’s been over 40 years since I went to nursing school here – long enough that most of the buildings I remember have been torn down and replaced.
One memory I had was of a strangely shaped hill where students would go to have picnics and hang out, relax… I looked at a list of parks and found Quarry Hill Nature Center. It sounded familiar and as we drove there, I remembered more and more.
It was a good place to wait, to see and learn about local wildlife. There are a lot of trails for walking, but since the husband is not a hiker anymore, we watched birds in a feeding area.
Quarry Hill was made into a park a couple years after I left school and I was glad to find it again. I wish I had kept in contact with my friends in nursing school because I’d love to have help remembering some of these places, places I never thought I would forget.
We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.
I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this Lewy Body Dementia . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. It is progressive. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.
The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.
We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know. At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all. I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him. I think he feels held and loved by God more because he needs it more.
He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea). We’ll see how that works out. It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.
I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that. The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm.
Day 4 at Mayo Clinic had its up and downs, but was also the day that was the most accomplished so far.
The day started early – third day in a row that we were up, fed, and on the bus shortly after 7. Soon after arriving Dennis was met by the professional doing his testing and disappeared for a couple hours. He came out for a quick snack and then went back for another two hours. I thought for sure he would be exhausted by then. I was called back for a brief discussion with him and one of the testing doctors and then we rode the bus back to the motel.
While the husband was getting tested this morning I made a trip to the business office to check on the infamous pre-authorization request for the PET scan (still pending) and then wandered around looking at all the stunning artwork and views of and from the various buildings. So much marble and granite, so many windows, visitors sitting down at the grand piano in the lobby and playing a tune, people of all ages and cultures walking past, and always a new tunnel in the subway and a decision to make to walk it or not – I could have spent hours. (Some photos at end of post.)
To give Dennis time for a nap, we decided to take the car to the next test instead of riding the bus. The PET scan was scheduled for 4:50 and Dennis would be fasting until it was over. We knew he would need to eat soon after so Mom came along with us and we planned to go right to a restaurant afterwards.
Every time I checked on the request for authorization, the answer was the same. T 4:30 it was still pending and no one could figure out the persistent problem or get satisfactory answers. It was the most expensive test but the most important, so we paid for it to make sure he was able to take it. Insurance will get billed but we have no clue whether or not they will pay anything on it. Oh well.
Mom and I read our books and waited while the husband had his head scanned. The books we’re working on are both very riveting and we wouldn’t have minded waiting a little longer. As it was, the test was over quickly and we were off to have supper at “The Porch”, a converted railroad station family style restaurant.
Tomorrow will wind up the Mayo experience for this time. One test remains, the lumbar tap. I don’t know if I’m excited about this one or not. It’s the most invasive and has a bit more risk to it but is also one that the husband thinks could make a difference in some of his symptoms. It’s at 9 am. All that remains after that is the meeting with our primary specialist Dr. Jones at 3 pm. They expect he will have results from everything to discuss with us. I am so used to waiting a long time to get told of results so I will be surprised if it happens. We will drive home immediately after that.
Something we all think about as we watch the crowds of people at the clinic, on the bus, in the waiting rooms – they are all living out their private battles with illnesses that have happened upon them and changed their lives. Things are not normal anymore for them. They all have stories. They all wonder what their future will hold. Just sayin’, we are not alone by any means.
It’s Day 2 and I”m beginning to know my way around, where the different buildings are, where to pick up the shuttle, where to go to eat. The husband is getting better at it too, but he doesn’t go anywhere alone and likes to have someone to follow.
Our appointments were not scheduled the way we would have wished but we were told it was possible to change some of them. The schedulers told us “Be a checker!” and wrote it on our instruction sheet. I had to ask what that meant. It’s their suggestion that you be on hand for the test you want to get, in case someone cancels. It’s like “standby” at the airport. We were on hand at 7am and 12 pm, the designated times, with no success. But again, the people working here are all helpful and so good at what they do. It wasn’t a bad day.
After our morning wait, we went down to the business office and asked about our insurance authorization for the needed PET scan. It was not a busy place and a very competent person helped us right away. She made some calls and told me that Dr. Jones’s report had been sent to the insurance company. I will call tomorrow morning and see if it has had any effect. And again, no lines, prompt service, and people asking us what we needed before we had to ask them. Can this place be real?
Going back and forth as many times as we did gave us some good experience riding the shuttle. It is easier and cheaper than driving and will be our main mode of transportation.
We are finding ourselves very easy to entertain. Today we shopped at Walmart, took naps, read, watched TV and ate our snacks in the room. We’re doing one meal a day at a restaurant. Tonight’s choice was Outback.
I am trying to resurrect memories of my year in Rochester while in nursing school. It was so long ago that I’m afraid my dorm attached to Methodist Hospital, Clara Madsen Hall, has been torn down and replaced by some larger, imposing building. I couldn’t find it. Almost everything downtown around the Clinic itself looks unfamiliar to me, although the main street, Broadway, still had many older buildings. There are also some one way streets that I don’t remember being there (but that I will never forget again…).
After dinner we drove around a bit and I was relieved to find one place was much the same. Silver Lake park was still there. The lake itself was part of the Zumbro River and there was a power plant connected in some way with it. Because the water was warmed by the power plant it didn’t ice over as quickly as other bodies of water in the area. It was home to great multitudes of Canadian geese all year round and quite a sight to see. I remember times when it was cold enough to warrant goose rescue attempts for those animals that were getting frozen into the ice. The geese are still there, along with a sign asking people not to feed them. A large goose produces 3 lbs. of poop per day (who knew?) and all that creates a significant bacteria problem for the lake.
Tomorrow we will be on standby for the neuro-psych evaluation again, and hopefully will get time to visit my Aunt Evelyn in the afternoon. The husband (and Mom and I) are worried about Julia. Hurricane Florence is heading toward North Carolina and Greensboro is in the center of the all important cone of possibility. We know what hurricanes are like… This world is full of things we can’t control. How plain that is. Just sayin’…
Right away, let me say that if you have to get sick, this is a really good place to go.
We left my brother’s home near LaCrosse early this morning and in a little over an hour we were in Rochester, MN. The clinic and its hospitals are the focal point of this small city and it is fairly easy to navigate. There are people waiting in every parking lot and in every lobby to answer questions for newcomers like us – they are used to doing it and because they have developed good systems things went smoothly for us.
I was amazed that we drove to the 9th floor (top) of the parking garage and were headed back down again before we found an empty spot, and at such an early hour. There were rows of sturdy wheel chairs at curbside for anyone not inclined to walk, good signage that was easy to follow. This stuff is so important! Knowing where to park, and where to go for appointments is one of my main concerns in going to a new place.
There were no long lines and no extended waiting periods! We might run into this later on but today was extraordinarily good in that respect. After check-in we were helped by a appointment specialist, Mr. Smith and put into an exam room to wait for our doctor, Dr. Jones. “Smith and Jones” jokes were exchanged.
Dr. Jones got a detailed report from Dennis. He seemed to be a good listener and made notes as we went along through the exam. He wasn’t a white lab coat doctor which I thought was interesting. He had a nice, expensive looking wool tweed suit, longish curly dark hair, and a trimmed beard. He gave Dennis quite a few tests as he talked with him and at the end announced that he had mild cognitive impairment, maybe borderline dementia. We knew that, but it was nice that someone else actually noticed it too. He is in favor of finding out why.
Not too long after the evaluation, the husband had his brain MRI, with and without scary sounding contrast medium. Very nice professionals conducted this testing with very little wait time. Mom and I had time to eat a light lunch while this was going on. We were done and on our way to the motel before 3 pm. The accommodations are clean, comfortable, adequate.
We rested, had a “comfort” dinner at Olive Garden and are back in our motel ready to get to sleep early.
Dennis was supposed to have a PET scan tomorrow but because it was not yet authorized, they postponed it until Thursday afternoon. I’m hoping the insurance will cover it because Dr. Jones said it was probably the most definitive test and will show whether he has normal pressure hydrocephalus (NPH), Alzheimer’s disease (AD) or Lewy body dementia (LBD). We need to get authorized for this one and that is our prayer for this visit.
The lumbar puncture will take place on Thursday morning. The neuro-psych evaluation was scheduled for next Monday but we are going to be waiting for cancellations the next two days and hoping to get it done this week. It’s a nice enough motel but not where we want to live for that long.
Other appointments the doctor felt to be necessary were another sleep study and an ophthalmology work-up. Those can be done later in October – we will come back for them.
So far, so good. Thank you to all who have prayed for the success of our trip. It is going as well as can be hoped for. We are in fairly good spirits.