If It's Not One Thing, It's 25

The last few weeks have been pretty typical as typical goes with Alzheimer's Disease....no day is predictable.  Billy has had ups and downs with his behavior but probably more ups than downs.    He had a doctor's appointment for his 3 month checkup on the 19th, and the med student examining him did the Mini-Mental Status Exam with him.  I recall the first time he took this test (which is a series of 30 questions and tasks) around 2001 or 2002.  He got 30 of 30 correct.  I don't know if I could get all of them correct today.  (Count backwards from 100 by sevens.)  The score has decreased gradually, and his score this time was 17 correct of 30.  He said the month is April and the year is 2007.  When the doctor told him it was actually September and 2011, Billy said, "I should know these things because I'm a teacher, and I have calendars all around me."  

I notice his self-care skills are slipping quite a bit. He still gives it his best shot, but shaving is such a chore.  Sometimes he misses large spots, and sometimes he shaves twice in the same morning.  If I don't watch him carefully, he shaves, and then he puts mousse on his face instead of his hair.  He's put his deodorant on his face before like it's shaving cream.  I put the toothpaste on the toothbrush for him, but I have to tell him to brush, and I don't believe he does a thorough job of that either, but I don't obsess over it.  We are both doing the best we can, and I see no reason to make our mornings any more difficult.

He is sleeping very well, and I even have to wake him some mornings - Praise God for that.  I do believe that's pretty common with the disease because he fatigues easily.  He falls asleep around 8:30 or 9:00 in his recliner, so we head to bed a little after 9:00.  He does his make the bed routine (it's already made, of course) and fluffs the pillows for as long as I can stand it.  I take the decorative pillows off the bed, and while I'm in the bathroom or somewhere else, he puts them back on the bed.  Some nights, I'm amused, and some nights, I say..."Enough fluffing and straightening.  Leave the  pillows alone, and get in bed!"  I give him last pill of the day, and he conks out quickly. 

We do have a new adventure ahead, and I am thrilled.  Billy was approved to ride the MITS bus which is public transportation for disabled folks.  The cost is very reasonable, and they will pick up Billy from our house at 6:15 a.m., and deliver him to the Cottage.  They will return to pick him up at 5:00 from the Cottage and bring him home.  The thought of gaining 10 hours a week that I'm not on the road is huge to me.  What a blessing in so many ways.  Please pray that Billy can tolerate the rides to and from, and that it all works out. 

Please keep my mom, Alyce Barnes, in your prayers as well.  She was admitted into the hospital today because her right kidney is blocked from a mass that is pushing against the ureter.  Biopsy and stint put in place tomorrow.  Lots of unanswered questions. 

D.A.D. Dementia Awareness Day

Dementia Awareness Day was today, September 17th, in the UK.  As far as I know, the US does not have a comparable day, but I feel certain it is coming with the National Alzheimer's Project Act.  Here are two links to videos about DAD in the UK.  Alzheimer's Disease knows no national, ethnic, nor economic boundaries.

http://youtu.be/0FDOlrCEezo

http://youtu.be/UoIcrbApVjA

Pretty Good Week

It's been a good week for Billy. With Alzheimer's you learn to live in the present and appreciate those days that go well. When we have consecutive "good" days, I'm very thankful. It's rare that I make it a full week without having a report of Billy being out of sorts and getting irritated with someone at the Cottage. We made it all five days this week. I must admit that I did not ask for details today, but if it had been bad, I think I would have known. One day, I caught him sitting in a recliner watching an old western. It was wonderful to see him sitting and enjoying some down time. The usual routine is that I open the door from the foyer into the main living area, and he hears the door. I hardly get in the door before he walks toward me and says, "There you are!"

Because he pretty much refuses to stay in the TV room, all of the clients and caretakers are in the front room with him when I arrive. He is NEVER sitting down, so when I found him sitting and watching a movie, it was a BIG deal.

When we get home, we eat dinner, and he's so tired, he falls asleep in his chair by 9:00. I've started having Catherine, his former caretaker from Easter Seals, stay with him on Thursday evenings. That's the night I nearly always have a function at school, and if I don't, I just try to get away for a few hours. It helps tremendously, and I'm so thankful he's been happy to see Catherine on Thursday evenings.

Thank you so much to those of you who have donated to my team for the Walk to End Alzheimer's! I'm not too far from my goal, and I really appreciate it. I've emailed those of you that I have addresses for, but I don't know Alice's or Allison's. Thank you, ladies!

You may have heard the big news this week about the insulin nasal spray that is having a positive impact on Alzheimer's Disease. Donations that you make go to research like this, and I can't thank you enough. Billy has a doctor's appointment on Monday afternoon, and that will be one of my topics. Where is the study, and is it possible that Billy could get in on it. The last time I asked, I was told that the research in our area is for earlier stages of the disease, and his is too advanced. Another reason for early diagnosis!

Thank you for your prayers that sustain us as we walk through this disease, and as always, thank you for reading!

WALK TO END ALZHEIMER'S DISEASE!

Two years ago, Shelley made her first attempt at putting together a team of walkers for the annual Memory Walk. We didn't start early enough, and then we got busy with so many things that we ended up having Billy, Shelley, two of Shelley's friends, and me walking. I had big time knee issues that year, so I only made it a mile. Last year we were unable to do it all because of other commitments. This year, Shelley has put a good deal of work into planning, her husband, Andrew, has designed a t-shirt, and we are so excited about the walk in October.

This year, Team BK is a reality with several people joining the team, and we hope more will donate. If you've read my previous posts, you know how passionate I am about promoting research and awareness for this disease. If you're in the area, we would love for you to join our team! If you are unable to walk, we would appreciate ANY donation you can make. With the handy-dandy link to the right, you can get to my donation page with one click. (By the way, my technology skills are improving greatly with this blog.)

It's been a busy weekend in the Knowles' world, and at this moment it looks to end well as the Cowboys are ahead in the 3rd quarter! However, the Cowboys sometimes disappoint me in the 4th quarter.

Yesterday, we made a quick trip to Burleson (where Billy was raised and graduated from high school) to attend the funeral of a man that Billy held in high regard. Billy's best friend since high school is Ronnie Bryant, and his dad, Liston, passed away on Tuesday. Billy grew up without a father, and many times he told me that Liston Bryant was a wonderful positive role model throughout his teen years. His funeral was attended by hundreds, and it was an honor to be a part of those close to his family.

I believe I mentioned before how much Billy enjoyed swimming about 6 or 8 weeks ago. We took him swimming again last weekend at Shelley's in-laws, and all this weekend, he's been grabbing his swim trunks every time we get ready to leave the house. I've had to say over and over, "We are not going swimming. We're going to the store/church/restaurant/etc." I've managed to keep my sense of humor, but I'm ready for Monday.

Thank you for continued prayers and encouragement. I appreciate you reading this blog, and I will write until I run out of words.

Advocacy

What a privilege I had last week when I spoke to a group taking input for the National Alzheimer's Project Act that President Obama signed into action in January. Representatives from the Texas House of Representatives and US Health and Human Services among others were in attendance to take feedback from the public. When a meeting like this is open to the public, input comes from so many different folks - some were prepared to speak and some spoke only from their emotions. Each person who spoke had their own experience with this disease, and most were very personal experiences of caring for a loved one.  I speak to groups often...teachers and parents mostly, and I can usually speak without notes.  But when the topic is as important as this, I want to be wholly prepared.  I wrote out what I wanted to say and revised it several times.  


Even in this large group of about 150 people, I heard only one other person speak about a loved one diagnosed so young, and her mom's AD was due to a prior brain trauma injury. Her mom's diagnosis was in her 30s, and her mom passed away at age 43. One woman was diagnosed at 59, and she was articulate about her frustrations with getting a diagnosis.  During my input, I stressed the delay in diagnosis for Billy.  He was treated for Adult ADD at first, and the meds made him fidget more than ever with no improvement in memory or completion of tasks.  Then he was diagnosed with depression, and although he did have some signs of depression, the root of the depression was not discovered until his symptoms worsened.  I know there are much larger numbers of Young Onset AD, but I don't run into too many of them. 


In the hour and a half that we were there, we heard at least 20 people speak, and thankfully, we were not held to the time limit of one minute that was first set.  Most of us spoke for 4-6 minutes, and it was enough time to truly give feedback. The panel was looking for input that fit into four areas:
1) Awareness
2) Research
3) Health Care
4) Long Term Care


Awareness has been a goal of mine since coming to grips with the fact that Billy has this disease.  At first, I didn't want many people to know...somehow AD has or had a stigma in society.  Jokes are made about it all the time, and I understand why.  I worried about Billy losing his job, and that's what happened. Billy wouldn't tell people unless he just had to, and he never volunteered to talk to anyone about it.  Mostly, though, I felt totally unprepared and had no idea what to do for him.  People tell me frequently that they had no idea what all was involved with Alzheimer's Disease until they read my blog.  I'm thrilled to hear that more people are becoming aware of the gravity of the diagnosis.  


Research is taking place, but lack of funding slows it down. Diseases that have money put into the research get treated , cured, and prevented.  Early diagnosis is incredibly important in all major diseases, and the same is true for AD. So many doctors are not willing to diagnose someone who is young like Billy, and they have not had experiences with Young Onset, so men get diagnosed with depression or ADD, and women are told that menopause is causing the issues. Mis-diagnosis delays treatment that can slow down the disease.  By the time we got firm confirmation that Billy had AD, the disease was too far along for any of the clinical trials in this area. 


I am so thankful that Billy has had health care and insurance during his onset and diagnosis.  While it would be so helpful if he had Medicare, at least he has health insurance.  Many Early Onset patients are able to get Social Security Disability, but they don't get on Medicare for two years.  How do they get meds?  No meds = no slowing of the disease.  

My opinion of long term care is still forming, and a huge gap exists in the time between when a person loses his or her job and the time that person needs long term care.  Years pass by without knowing what to do.  It became evident to me that I had to find a place for Billy because my staying home with him every day was not possible.  I think of older onset patients who are typically retired with their spouses, and even though the spouse may have the time to spend all day every day with the AD patient, it is not healthy for the caretaking spouse to spend 24 hours a day/7 days a week with that person. The caretaker has to have a break. Research has many stats about caretakers dying before the AD patient. 

As you hear more about the National Alzheimer's Project Act (NAPA), I hope you will support it's initiatives and know that many are being helped.  So many are touched by this disease in one way or another.