My how things change

It has been over 2 months since my last post and once again we have been on a fast track of change.  Dad was in rehab, barely able to stay awake for his PT each day.  We kept hearing, your dad was a really sick man and it will take a long time for him to recover.  He finally began to be more awake after about a month in rehab.  Our entire family (20+ people from as far away as Texas) meet in Florida for one glorious week of R&R each summer.  Mom & Dad have always gone and the kids, spouses, grandkid, great grand kids....all meet in 4 condo's and just relax.  This year we knew mom could not go and dad was in rehab trying to get better and he was not able to go.  Do we cancel our trip or do we go and get some much needed R&R?  If we went what do we do with mom?  We were so torn and really had no idea what to do or what was best.  We thought about taking mom with us but we knew that would not be the R&R we needed...she needs 24/7 care.  We looked into respite care and visited several places.  I can not believe some of the places we visited and how awful they seemed.  We found a place that had room for mom but respite was a minimum of 3 weeks.  Mom wanted none of that and had decided she was not going and wanted to stay at home by herself.  We told her that she was afraid to be alone at night and she had no one to fix her meals while we were gone.  Dad's PT was coming to an end at his facility and sure enough they discharged him from the facility the day before we left on vacation.  He was able to stay at that facility as private pay and we had scrambled that week and were able to get him into an assisted living facility close to their home.  He could move in the Monday after we returned from vacation.  We took my mom to another assisted living facility for her respite.....she was so upset that we were leaving her there and she did not know anyone.  It was an awful scene and heartbreaking.  My sister and I left her that afternoon feeling like awful adult children.

We did have a very restful and relaxing week at the beach.  Calling to check on both of them while we were away.  Mom was not participating in any activities but just kept telling them she wanted to go home.  Dad was fine but he was not doing his exercises on his own like he promised us he would.  The weekend we arrived home we decided to go see mom but the facility told us it would be better not to visit as she would want to leave with us.  We are so thankful that my sister had a friend who visited mom nearly everyday while we were gone and kept her company.  Mom did not know her but loved having someone to talk to. When we returned we also started preparing mom for a move to the same facility with my dad but in her own room.  About the time everything was in place for that move.....disaster struck.  My husband fell down some concrete steps and broke his hip.  Now I was out of the loop helping with the move and it fell on my brother and sister to handle it alone.  They did an awesome job pulling together and getting it handled while I made my daily trek to downtown Atlanta to the hospital.  Of course once he came home, it was still hard for me to do anything else other than care for him.  Thankfully that is now 4 weeks behind us and he is doing well.  He has progressed in his PT to learning how to use a cane this week.  Still using a walker but learning how to use the cane.

Dad is still having PT but HE is ready to go home but still not physically ready to take care of himself at home.  He feels he will be able to care for mom as soon as he goes home....we know that he will not be able to.  Mom is on the wait list for memory care and dad does not understand why he can't take care of her and she will have to stay.  She is adjusting slowly but is dad's shadow all day long.  He would rather not participate in the 'silly' activities as he calls them but we tell him mom needs the stimulation.  It is tough when both parents need some 'assistance' and neither parent wants it.  We just keep plugging along and doing the best we can.  We do not know what the future holds but we know who holds our future.  God has been there with us all the way.  Without Him, I would have probably fallen in deep despair.

PS---Yesterday afternoon my husband and I were out for a quick drive to the grocery store and were in a wreck.  Thankful God's hand was on us and we were not hurt....the car has significant damage but it can be fixed.

Our Journey continues

I have been slack writing this blog, we had gotten into a routine or a grove of sorts.  Dad was taking care of mom....she had good days and and occasional bad nights but nothing that we could not handle together.

Don't ever get too comfortable with with your life's situation and caring for someone with Alzheimer's.  Three weeks ago things changed FAST.  Dad was admitted to the hospital with a severe UTI.  Things went from bad to worse in the hospital.  His heart rate was 170, his breathing was shallow, he was unable to walk and he was sleeping 90% of the time.  He had to have a cardioversion to restore his heart rate to normal and he was put on oxygen.  He had antibiotics for his UTI, but still dad did not bounce back.  It seemed as if he had a stroke.  Tests were done and it was determined he did NOT have a stroke. The doctors could only say he was very sick and it will take a long time for him to recover.

My sister, brother and I quickly became mom's 24/7 caregivers.  She wanted to go to the hospital every day to see him.  She would hold his hand, stroke his forehead and tell her that she loved him.  Days before this happened she may or may not have known who he was.  She is not able to stay by herself so my sister and I became the week day caregivers and my brother helped out on the weekends.  Mom was doing well the first week or so but I believe this event is taking a toll on her.  She has trouble remembering who my sister and I are and why are we taking care of her.  She keeps wishing her daddy was here to tell her what to do.

Dad has now been moved to a rehab facility to increase his strength.  Right now he is still unable to walk or sit up in a chair and he is still on oxygen.  The visits have turned into a battle of wills, he wants to sleep and she wants him to wake up and talk.  His morning is devoted to Physical Therapy so we have tried going in the afternoon and evenings but he is always asleep.

Alzheimer's disease is a horrible thing to experience with your loved one.  We have seen our mom go from someone who 'did it all' to someone who needs our help every day with the simplest of chores.  She keeps saying she does not want to be a burden, we reassure her that she is not a burden and we are proud to be able to help her out.  Right now we have two parents to care for....one at home with Alzheimer's and one in rehab trying to regain strength to be able to walk and take care of himself at home.  In my heart I don't think dad will ever be able to return to his duties as caregiver for mom.  It seems more likely that we will have two parents to care for.

Our family clings to our faith in Jesus.  From Jesus Lives by Sarah Young......"When unexpected events shake up your routines, rejoice.  This is exactly what you need,  to wake you up and point you towards Me."  Psalm 63:8 My soul clings to You; Your right hand upholds me.  I love you mom & dad.

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."