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.



 

The Journey Begins

What a journey this has already been and will continue to be.  If you have a family member who has been given this diagnosis, I urge you to find a support group.  The local Alzheimer's Association can provide you with information.  We are going to a support group provided in association with Alzheimer's and Emory.  We have finished week 3 and I am already sad that it is going to end in another 5 weeks.  Meeting with others and sharing your stories from the previous week will give you insight on what you can expect down this road of twists and turns.  I also suggest you read everything you can find out about the disease and being a care giver partner.  I am reading Learning to Speak Alzheimer's, by Joanne Koenig Coste.  I highly recommend it.  It will be something you can read over and over.   Journal your thoughts and things your loved one says.  Recently, I found out who my sister and I are named after--my mom's dolls.  I always knew that mom loved dolls but we had no idea why we were named what we are.  We have no relatives named Diane or Nancy but now I know that they were some of my mom's favorite doll names when she was a little girl.  In the early stages of Alzheimer's there are still LOTS of good days ahead.  I know that as we continue down this path many changes will come and as a family we will need to make adjustments on our pathway.  Thank you Lord for this time we have together.  Lynda Randle is one of my favorite Christian artist.  I hope these lyrics to "God On the Mountain" will encourage you on your journey. 

Life is easy when you're up on the mountain
And you've got peace of mind like you've never known.
But then things change and you're down in the valley.
Don't lose faith for you're never alone.

For the God on the mountain is still God in the valley.
When things go wrong, He'll make it right.
And the God of the good times
is still God in the bad times.
The God of the day is still God in the night.

You talk of faith when you're up on the mountain.
Oh but the talk comes easy when life's at its best.
But it's down in the valley of trials and temptation
That's when faith is really put to the test.

For the God on the mountain is still God in the valley.
When things go wrong, He'll make it right.
And the God of the good times
is still God in the bad times.
The God of the day is still God in the night.

Every 70 seconds someone is diagnosed with Alzheimers

On February 2, 2011 our mom was diagnosed with this disease.  How did we miss the signs for so long?  It was (or so we thought) the gentle aging process and everyone forgets someones name or draws a blank on a word in a sentence.  I do and I am 20 years younger than my mom.  It is a disease that her father had and his mother had but it did not have a name back then.  Back then people 'lost their mind', only now do we have a name for this memory robbing disease--Alzheimer's.  There is no cure, just medications that MAY slow down the process.  In the 86,400 seconds today, there will be over 1000 people diagnosed with Alzheimer's disease.  There will be at least that many caregivers thrown into a new role they did not ask for.  It not only effects the patient, but her husband, the children and their spouses, grandchildren, friends of the family and the list goes on.

The day our family received the news, God was already preparing me.  My daily devotion from Proverbs 31 Ministry was The Book of Days.  I guess I knew in my heart this would be our outcome as well but you never want to hear those words "your loved one has early stages of Alzheimer's".   We will blog about our journey of a family living with Alzheimer's.  We will have good days and bad days ahead but we know that God is on the throne and He is is control.   

"All the days ordained for me were written in
Your book before one of them came to be."
Psalm 139:16b (NIV)