Bob's health has always been excellent.  It is amazing, because he was born with cerebral palsy and didn't walk until he was five years old.  But he rejected the braces and other devices to help him along.  He wanted to play baseball so badly, but was always the last one chosen for the team.  But he kept at it, sometimes spending all day playing.  And that was the best physical therapy he could have had.  His grandma who raised him said he would come home at the end of the day crying because his legs hurt so bad.  But the exercise stretched the tendons, and by the time I met him when I was 16 and he was 18, you wouldn't have noticed anything but a slight limp.  He has had MRIs and CT scans through the years which shows that the hydrocephalus in the brain has not changed and he has compensated for it.  So I asked the neurologist if that had anything to do with the dementia, and he immediately said "no".  He also injured his knee playing football in high school and that same knee has bothered him all his life.  We met our junior year in high school when I moved from Idaho to Baltimore and started in the new school on my 16th birthday.  But we didn't start noticing each other (he says differently, that he knew that first day he liked me) until our class trip our senior year camping in the Shenandoah National Park.  Schools back then didn't go to England or France on their class trips, or at least ours didn't!  We went on a hike and he was so intent on the hike that he didn't notice the girl behind him doing her best to keep up!  Maybe he was trying to impress me! We started dating on graduation weekend, but then our paths separated and he went to college in Michigan, and I started nurses training in North Carolina.  But we kept in touch by letters (when I could read his handwriting).  We married in 1963, and moved to Hinsdale, a suburb of Chicago, where we both worked at the Hinsdale Hospital.
We always enjoyed hiking. When we moved back to Silver Spring, Maryland for 8 years where our children were born, we would take them to our beloved sentimental Shenandoah National Park and camp and hike, even though we would end up carrying them!
After we moved to Shawnee, KS, a suburb of Kansas City we looked for places to take the children to camp and hike.  We fell in love with Colorado and made sure we went there every summer.  We would be on a trail, and another trail would branch off from it and we would look at it longingly.  We would say "When we retire we will come back and do that hike"!  Laugh out loud!  After the children finished college and left home we started traveling more and it usually involved hiking.  One of the most memorable was on the Napali coast in Kauai, Hawaii when it had just rained and we came back covered in mud.  Another was at Machu Pichu, Peru where we climbed the centuries old Inca Trail, still very much intact, up to the Sun Gate and looked down on the ruins, just tiny little structures below, but with snow capped mountains in the distance.  Then we discovered Arizona, in the good ole USA!  We have done so many hikes there.  One was in Catalina State Park near Tucson, and we were on a trail trying to reach the Seven Pools before sunset.  Bob either fell and twisted his knee or twisted his knee and then fell.  Long story short, I had to run back to the ranger station (thankfully downhill) and they sent a helicopter for him.  They radioed which hospital they were taking him to, and I frantically drove the rental car back across town to the hospital, which was very near the hotel where we were staying.  They already had the surgery crew called by the time I got there, but Bob told them they had to wait till his doctor got there to approve it.  They asked who his doctor was and about that time I walked in and he said "There she is"!  I told the orthopedic surgeon I was sure he was good, but please just put a brace on it, give him some crutches and let us get back to Kansas to the hospital where we worked and to TJ, the surgeon that I knew and wanted.  He ended up only needing physical therapy.
Bob only missed three days of work in his whole career and that was due to a kidney stone that wouldn't pass on its own, and he had to have surgery to remove it.
On my next post I will write about some of the things we have tried hoping against hope they would help.

I finally decided to tell people about Bob's disease this week, and it has been an emotional week.  I could not do it before as he was very sensitive about it, and has never acknowledged that he has it, even in the early stages.  He is so good with covering it up, it is amazing.  If you watched the Glen Campbell story you will know what I am talking about.  When asked a question, he would just pass off the answer by saying, "Oh, I don't have to know that (and neither do you!) and I don't care about it.  One time in the neurologist's office when they were trying to get him to tell them where he was, he was evading the answer so cleverly that we all got to laughing so hard we were crying!  So when he was aware, I could not tell anyone.  Bob has always been excellent at names, much better than I am.  So when he didn't know people's names or introduced them wrong, I was really concerned.  And even after he was diagnosed, he was on the computer sending and receiving emails, he was active on Facebook, and he loved calling people on the phone.  He had a whole network of friends he kept up with.  So recently I opened his Facebook for him, and there were many messages there that hadn't been answered.  So when I put the message on my Facebook timeline, and also on his, I got an overwhelming response of love and support.  Then many on his Facebook sent private messages saying they wondered why they were not hearing from Bob.  It is surprising that so many people that responded had or has a relative or spouse with Alzheimer's.  And several others were dealing with other diseases that put them in a caregiver's role.
When I first decided to get a few people know, as it was becoming obvious that there was a problem, I was very unsure how to do it.  Bob had been a leader both in his hospital job and in the church a lot of hospital employees attended.  They would be used to him being in that role and would look for him to function like that.  Also, he was very good at seeking out the hospital employees that needed a little extra help or encouragement.  So I went to the Alzheimer's Association for help.  They suggested that I tell a few people that I trusted and tell them it was OK to tell people.  A lot of our friends knew, but in confidence.  But the first week we went to church after that, a member came running up to me and said "Bob says Roma is at the door handing out bulletins.  Is that true?"  I had to tell her he must have been mixed up as Roma moved away many years ago, and she wasn't there that week!  So that worked somewhat, but there were still others that didn't know.  Also, when he was talking to someone and got "off the track" I would slip them a little card, available at Alzheimer's Association offices that says "My companion has Alzheimer's disease.  Please understand."  Those have also been very  helpful at restaurants, etc.
The grandchildren have known for several years now, since they were picking up that things weren't right.  I read them a wonderful book by Maria Shriver titled "What's Happening to Grandpa?"  After I finished I asked if they knew why I read that to them and they piped up "Because our Grandpa has Alzheimer's".
So now I can relax more, since people will understand.  Until next time...Betty

Journey through Alzheimer's

Bob and I have been on many journeys.  We have traveled the world and have been to every continent except Antarctica, where I have no desire to go!  But now we are on another journey, a journey we had no idea we were going to take.  We made no reservations, and would have declined, had we been given the choice.
It began with a trip to Australia and New Zealand we were taking for our anniversary and Bob's birthday.  We left 3 days after 9/11/2001, and weren't sure planes would even be flying by then, but
with luck they were.  I noticed that Bob was having trouble remembering things the guide told us, like what time we were going to have dinner, but chalked it up to 16 hours of jet lag.  Things were fine when we got home, but then the same thing happened 3 years later on a safari to Africa.  Again I
chalked it up to jet lag and we were both having trouble hearing with our ears stopped up from so many plane rides, a lot of them in small bush planes.
I retired from nursing a year later in 2005 but Bob wanted to continue working.  He had always worked in the daytime and I had always worked at night so we got along fine!  But I started noticing more things now that we were together more.  My father had Alzheimer's and things started happened that were eerily similar, that we hadn't picked up on right away with my father.  I mentioned it to our
(former) primary care doctor and he just laughed and said "Oh, women don't ever think that men listen to them".  I told him, that no, it was more than that, I had had Bob's hearing checked and the audiologist said everything was fine, he was just tuning out what he didn't want to hear.  Then we met some friends we hadn't seen for years at a funeral and Bob talked to them like they were his boss some years back.  The lady called the next day and asked if I knew that Bob didn't know who they were.  I had just heard a little of their conversation but I had picked it up as well.  I confronted Bob with that information and he said, yes, he remembered after he got home, and wondered why the wife didn't belong with that husband.  I asked him to go see a neurologist, but he refused.  He said there was nothing wrong with him, and he was usually covering things up very well.
Bob retired in 2006, at my urging.  I didn't want his wonderful career to end by them having to ask him to leave.  I had wondered if his long time secretary in the hospital administration had picked anything up, but was hesitant to ask her.  He went to one last hospital function which I didn't attend, and on the way home he made a left turn right in front of an oncoming car, and totaled his car.
The people in the other car were injured.
I told him that was it.  He was going to a neurologist.  The neurologist (former) did minimal testing and told me he didn't think there was an elephant in the room and that lightening wouldn't strike twice (referring to my dad also having it).  But he did say that one of the first signs of dementia is losing the ability to judge distances, such as making a left hand turn with not enough time to do it.
Nurses have a wonderful networking system.  So I started asking my nurse friends about other neurologists in the area, and found the doctor that we have been with since 2009.  I was more than
happy with his testing, and he is the most kind, compassionate man I know.  He started Bob on Aricept which helped for a few years.
We are much further along in the journey now.  I will end for this time, and continue on later before
we both become glassy eyed!  It is a long road, but we live one day at a time.