It has been awhile since I updated our journey.  We have had ups and downs along this pathway.  We are now nearing the 2nd anniversary of the diagnois and we can see the decline.  My mom and dad have been married for 63 years and she is beginning to morph her daddy and husband into the same person.  I think it may be because we call him daddy and then she does too but she has lost the ability to distinguish that it is not her daddy but actually her husband.  I have tried to talk about him as 'Billy' but that is a hard habit to break...for 60+ years I have been calling him daddy.  She recently has been concerned about her mom & dad (who have been dead since the 80's)...she thinks they haven't come home for the evening and she is worried about them.  We have had two long nights where she has asked us why didn't you tell me they died....why did you not let me go to the funeral.  She thinks we may need to plan another  funeral.  Yet she remembers going to the cemetary and placing the Christmas flowers on their grave just last week.  This disease takes bits and pieces of their memory and leave gaping holes in an event....you remember part but not all.  This foggy abyss is going to get worse...this is an awful disease like I have said before.  Take time, stop and smell the roses with your mom and dad while they still are able. Take them for a 'spin' in the car, go see the Christmas lights, go to a Christmas musical, sing Christmas carols with them, take them out to eat or bring in a home cooked meal they can enjoy.  Life is too precious to NOT spend time with the ones who raised you and molded you into the person you are today.  May your Christmas be merry and blessing to you in the new year.  I love you Mom & Dad.  I Peter 5:7 Give all your worries and cares to God, for he cares about you.  NLT

An anniversary of sorts

One year ago this week Mom was diagnosed with Alzheimer's Disease.  It has been a bumpy road but at the latest doctor visit he said she is 'holding her own'.  What does that mean with this horrible disease?  I do not see any BIG changes in the last year.  She has problems getting some words out in a conversation.  We just help her fill in the blanks as best we can.  Losing things is another thing she has to deal with. If this was ALL that was going to happen I would feel excited but, we know this is the tip of the iceberg.  We may have a small hole in the ship now but one day it will become a big gash and the ship will begin to list.   She recently lost a pair of earrings and her hair brush.  She would not let me help her look for them.  I know it must be frustrating not to be able to remember something so simple as to where you put something 30 minutes earlier and it is frustrating to the family that she does not want us to help her.  She dislikes going to the doctor and says she hates to take his 'test'.  The one where you are asked the date, what season it is, where are you etc.  On the way over she kept asking what the day and date was because she knew that would be one of the questions.  When we sat down in the waiting room, she opened her purse and she had a 'cheat sheet' with the day and date written on it.  She looked at it several times before we were called back.  She did get the month and day correct but still could not remember the date once we were back in the exam room.  This is such a cruel disease.  I have recently joined an Alzheimer's study of healthy adults at Emory University in Atlanta.  I had an MRI (my first) and then took a 3 hour memory test.  It is computer generated--it would show an item that looked like snow flakes, the screen would go blank and then in a few seconds up to 2 minutes later you would see the original object and a new object.   You would have to pick the new object.  I got all of those right by remembering something about the shape.  Was the center open, the edge had a feathery apperance, the center had a star shape--things like that.  This seemed easy and I got them all correct.  Then it gets a little harder.  It was similar to the electronic 'Simon' game with out the sound and colors.  Just random blue dots that appeared on the screen and you had to touch the one that was new each time.  It would add one dot at a time--sounds easy right.  But it is not, at one point I had a run of 9 correct before I missed one.  Then on the next set I missed after only two dots.  Talk about feeling like a dummy.  If anyone has the opportunity to join in a study please do so.  Anything we can do to help stop this horrible disease is worth spending a few hours as a participant. 

I recently received a devotional book called Jesus Lives by Sarah Young.  It is 359 pages of pure encouragement.  I just 'flip & dip' in the book, there is no set way to 'read' this book.  Recently, I read about brokeness.  'So stop trying to figure everything out.  Instead, lean on Me, letting your head rest on My chest.  While you rest, I will be watching over you and all that concerns you.'  Thank you Lord for You will walk beside our family in the journey we face.  I love you Mom. 

The lastest update

We have been plugging along without many changes.  We have had a few 'lost' items in recent days---her wallet and her glasses.  After an all out hunt, the wallet was found in a dresser drawer under a sweater.  Her eye glasses were found under the bed in the spare bedroom.  There is still a lost set of car keys (she doesn't drive anymore) 'somewhere' in a drawer but we do not HAVE to find them.  Mom likes to go out for lunch so we try to plan a girls lunch once a week.  We spent a few hours in the ER on Saturday morning because of  'uncontrolled shaking'.  Tests were run and a cat scan but nothing was found and the shaking stopped after a few hours without any medication.  She woke up around 5am shaking and could not stop--that was a new one for us and the doctor as well.  She reluctantly went to her doctor today (did I tell you that Mom hates to go to the doctor) for a follow up and they saw nothing from the tests to explain what happened.  We just hold our breathe as we move through this journey. 

Saturday, October 1 is the Dulth GA Alzheimer's Walk.  So far our team has raised $300 and prayerfully we will reach $1000.  I am excited about the 5K and plan on doing this every year to honor mom.  Every dollar collected helps to find a cure for this awful disease. It effects every walk of life--rich, poor, middle aged and older--Glen Campbell and Pat Summit were recently diagnosed.  Many friends have family members with AD, some early stages and some in the final stages.  None of the stages are easy but God is our Rock during this storm--after the storm comes a rainbow.  Thank you God for friends and family that support us during our journey.  Life is not about waiting for the storm to pass but dancing in the rain. Unknown author  I love you Mom!

Family Vacation In St Augustine

We knew this was could be a trying vacation, Mom would be out of her normal routine and we did not know how she would handle it.  We were praying for the best and God answered our prayers, she did great.  We are all thankful that we have had one more great family vacation.  We had 4 generations represented on this trip.  Mom & Dad, all of their children & spouses, most of our children and their spouses and their children.  We had a total of 21 people sharing 4 condo's.  It is still hard for her at times, she has trouble with names and trying to explain something but we all help her out. She  enjoyed seeing our South Carolina & Texas family because she just sees them twice a year-- at the beach and at Christmas.  She got to see the grandkids enjoy the pool and her favorite thing to do is sit and watch the ocean.  She can't get down to the beach anymore but was able to watch it from her condo every day at lunch.  I thank God for giving us this special time where everyone can be together and we can enjoy each others company.  I know there will be difficult times ahead as we fight this awful disease and I pray that we can all stay supportive of each other.  It is not just one person who is effected but all of us are touched by this disease.  We all travel this journey differently, even in the same family.  Praying that we all come together in harmony as we travel this road.  Nehemiah 9:27  "But in their time of trouble they cried to you and you heard them from heaven"

Mother's Day 2011

Yesterday we celebrated Mother's Day and enjoyed a great day.  When we started taking pictures yesterday, Mom's giggle box was working overtime.  We don't even remember what got her started but she was laughing so hard we had to stop the 'photo shoot' and let her get her serious face on.  She would double over from laughing--it was great to see her having such a good time.  I got a couple of  those 'laughing' shots. 

Mom was not looking forward to today because of a doctor's visit this morning.  It does not matter what kind of doctor she is going to visit--she gets anxious.  She does not like doctors period.  Today was with the neurologist and she knew she would be 'taking' the dreaded test (Alzheimer's testing).  The doctor asked her the standard questions and thankfully she did much better this time than in January.  We are not sure if it is the medication, but she seems to be 'holding steady' at the moment.  Her next visit is not until January 2012 and she was very happy with that news. 

We cherish each day that we have with her and we all loved to see her laughing yesterday.  This is going to be a rough journey but right now the waters are still calm.  In the future things will get choppy and we can expect a full fledged storm of this awful disease.  God is still on the throne and in control.  He will see our family through this.  For anyone who has a loved one with Alzheimer's, we will all go through the same journey just at different times.  Ephesians 4:16 (NCV) "Let us, then, feel very sure that we can come before God's throne where there is grace.  There we can receive mercy and grace to help us when we need it." 

Two months since the diagnosis

It is hard to believe we have already traveled this road for nearly two months. The medications seem to be working--mom is stable.  We go for another doctor's visit in early May and I expect more testing will be done.  I have read several books on Alzheimer's disease and being a caregiver.  I want to fight this battle with everything I can.  I want my family to be prepared for this battle we will face together.   These books have helped me to understand what we can expect in the future.

We have finished our weekly support group,  but we did find out that we will meet monthly going forward.  This has been a big help to me,  and mom has enjoyed her group.   I have formed a strong bond with the other caregivers.  Some are husbands, some are wives and some are adult children helping care for their parents. We will all share the same journey, some will move through the process faster than others.  Some will have the right 'cocktail' of meds and the journey will be longer. We all have a loved one with Alzheimer's disease.  Each week when we see their loved ones, you don't suspect anything is wrong. They are or were professors, artists, school teachers, and financial planners.  Many have taken early retirement since they can no longer can handle the daily challenges in the workplace.  Their spouse is now the primary breadwinner.  Right now, most of the patients stay at home during the day while the caregiver works full time.  The caregiver now has a new second job when they come home.  Fixing dinner, making sure their loved one has a 'to do list' for tomorrow, grocery shopping--some of the same things we all do.  This too will all change in the future, our loved one will need constant care.  A 'to do list' will no longer be understood.  It is as if the wiring in the brain gets scrambled.  The 'wires get crossed' and simple things don't make sense anymore.

Today, I found out that a Facebook friend lost her mom to Alzheimer's.  This disease hits so many families.  The new stats are staggering yet little is spent on research.  When I started this blog in February is was every 70 seconds someone develops the disease and now it is every 69 seconds.  One second does not sound like a lot; but over a day 30 more people (than before) develops the disease.  In a month, that is an additional 900 people.  In a year,  nearly 11,000 more people than before.

My prayer is for our family to have the strength for this journey.  Psalm 18:29-32 (NLT) says "In your strength I can crush an army; with my God I can scale any wall. God's way is perfect.  All the Lord's promises prove true.  He is a shield for all who look to him for protection.  For who is God except the Lord?  Who but our God is a solid rock?  God arms me with strength and he makes my way perfect."

I LOVE YOU MOM & DAD. 

Insurance Hassles over Meds

Be vigilant.  Today I have spent several hours trying to fill a prescription.  It is not a formulary drug and it must be approved by the doctor (AGAIN), even though he wrote the prescription. The insurance company sent the doctor a form to fill out concerning treatment and what disease this drug will be used to treat.  The insurance provider said he did not answer 'question 7 in section 8'.  The doctor's office said that question is answered NO on the original copy but they will re fax it.  The doctor's office has no 'rejection' by the insurance company although the insurance provider said they did notify them by return fax.  Bottom line--the insurance company does not want to pay for namenda.  The pharmacy is not at fault, they can't fill it without approval from the insurance provider. The doctor is not a fault, he prescribed the drug and approved it for treatment when he wrote the prescription.  The insurance company is holding up this simple process with no regard to a patient's well being. The insurance provider expects the elderly patient or their caregiver to FIGHT for their meds.  Does the medicine work?  We don't know--it is early in the diagnosis and we don't know how she would be without the med.  It is a crap shoot at best and we can only take the medication we are given.  Would something else work better? We don't know but the doctor treats many Alzheimer's patients, we have to put our faith in him for treatment.  The pharmacy agreed to sell us 6 pills (3 days worth of meds) while the insurance provider decides what to do. 

This is not our first battle with medicine and I am sure it will not be our last.  Health care is expensive.  Young and old alike need medications as they age, and you must battle every step of the way for what is right for yourself, your mom or your dad. 

UPDATE--Meds approved late this afternoon after 6+ phone calls and several hours on the phone.  Lord, You take my jumbled up prayers and make total sense of them.  Thank you Lord for hearing my plea.