Our journey has ended...mom's new home is Heaven

Our family has taken a vacation to Florida every year since Mom & Dad's 50th Wedding anniversary about 16 years ago.  This year was no different...it had been planned for the week of July 9-16 since last year.  All of the siblings, spouses, most of our kids and grandkids stay for a week.  We knew going into this year that Mom may not make it through the week but we all agreed she would want us to finish our vacation.

On Friday, July 8th, my sister and I went to visit her and coax her to eat some lunch.  She had just eaten a few bites over the last week and barely had taken in any liquids.  On Friday she would not swallow the food or water, her eyes had a far away look in them.  She offered no recognition to either of us.  My husband and I went back after supper and there was no change...she had not eaten any supper nor taken any liquids.  I felt in my heart that she would not live until we returned in 7 days.  I told her I loved her, kissed her forehead and told her if she wanted to go to heaven while we were gone we understood.....she had fought this disease for so long.  The last 3+months had been pure hell for the family....seizures, not eating or drinking for days, then she would eat a carton of yogurt and then back to not eating or drinking.  It was a roller coaster ride that we had to endure and could not stop and get off.  We are thankful that mom did not know how bad the disease had taken over her body and she had no physical pain.

On Monday morning at 6:05 am my cell phone rang......I knew it was about mom.  Erica asked if I could come to Northlake Gardens right now and I said no remember we are on vacation in Florida.  She said oh I forgot, and there was a long silence on her end.  I asked her if mom passed away and she said yes......it was between the 4am and 6am bed check.  She had died peacefully in her sleep....just like we had hoped it would be....a peaceful ending to this long struggle.  Mom had had many opportunities to pass away with the family in town or by her side but she did not want that.  She did it when we were gone and she died alone.  That makes me sad thinking there was no one with her at the last breath but she did not want that.  The Lord has His own perfect timing......when our dad passed away all 3 of the children were in the room with him.  Mom wanted to do it by herself.  When she took her last breath here, her next was in Glory.

We all had heavy hearts at the beach but were thankful....we knew she was in heaven with Jesus and was with her husband of nearly 67 years.  Their 67th anniversary will be July 22nd.  She got to see her parents, her in-laws, grandparents, and friends who had gone before her.  She knew our names and I am guessing she ran into the arms of dad....her beloved Billy.  Mom was in a glorious new body that was perfect.  For that we were all thankful.

We had funeral arrangements to handle while we were at the beach and we got it handled without any problems.  Some things had been taken care of in advance....we just did not know when the event would happen.  We spent days on the beach or by the pool and ate great seafood every night.  We had done this as a family for many years with mom and dad attending but it has been 3 years since they were able to make the trip because of their health.  It was bittersweet but it is a trip we will never forget.

We arrived home Saturday afternoon and had visitation set up for Sunday afternoon and evening.....we had an out pouring of love on all of us from friends.  Mom and dad were loved by many and we felt that love and are thankful for every visit, card and text we have received.  On Monday we had a glorious celebration for mom's home going service......two favorite songs were sung.  One was a Guy Penrod song...Knowing what I know about Heaven and the other was When I get up to heaven.  Great service by Dr Troy Bush.

Many of you are still going through your journey and it may last another day, a week or longer.  There is no way to know when it will end with Alzheimer's disease...it is ugly and cruel and our family knows what you have been through, are going through or will go through in the future.  Not every person is the same but the end results are the same.  Your loved one will be healed once their final breath has been taken on this earth.

This will be my last post about our family's journey.....it has helped me by sharing.  I hope that you have been blessed and hope that someone was helped through our experiences that I have shared.

God Bless you as your continue on your journey.

We Love you mom and dad, until we meet again in heaven.

Betty Patrick Smith
Wife, Mom, Meme
June 20, 1930-July 11, 2016

Diane  & Jim Chadwick-daughter
Nancy & Jim Love-daughter
Tim & Dana Smith-son
Susan Holdrich-granddaughter
Scott Magnus-grandson
Nicki Waits-granddaughter
Andy Love-grandson
Preston Smith-grandson
Patrick Smith-grandson
Chris Holdrich-great grandson
Madison Magnus-great granddaughter
Macy Holdrich-great granddaughter
Chesney Magnus-great granddaughter
Parker Waits-great grandson
Caden Love-great grandson
Hudson Waits-great grandson
Kensington Love-great granddaughter

Enough.........

Mom is still here on this earth but we long for her to leave this frail body and meet Jesus face to face. I know some people will not understand this and think we are horrible children to say that,  but mom has suffered (in our opinion) long enough.....we know that every thing is in God's perfect timing but we don't have His watch on to see what 'time' it is.

All of the kids have said it one way or another that enough is enough.  In our book mom has done everything asked of her......she taught VBS, she sang in the choir, she played the piano in church, she was faithful to her husband of 65+ years, she took her children to church and taught us to love the Lord.  Her work on earth is done....not sure what else the Lord needs her to do before she earns her wings. The love of her life is waiting on her in heaven.

Mom has been having lots of small seizures....last Monday we thought it was her time to go.  She was not breathing and her heartbeat was very weak but she rallied after a few minutes.  We though it was just a matter of hours but here we are 10 days later.  These seizures just take all of her strength and she does not have very much to begin with.

Yesterday was Mom's birthday.....86 years on this earth.  I captured a sweet picture of two of mom's aides bringing her cupcakes and singing Happy Birthday to her.  She is in a place where she is cared for and loved like family.  They all stop by as they leave for the day to make sure she is still here and that is the first thing they do when they arrive each day....they check on Miss Betty to see if she lived through the night.  We are so thankful for the ladies at Northlake Gardens who have loved and cared for mom for nearly 3 years.  

Nancy and I talked the other day that if our 'heavenly' body acts like our 'earthly' body, then we bet dad is bugging the stew out of Jesus....asking it is time for Betty to come, can I go get her and bring her home, when is she going to be here?  I can hear him know.....just like a little kid.  His answer must be just a little bit longer before we are ready to welcome her home.

Mom will soon get her angel wings and take her last breath here on earth and in the next moment will be in heaven.  She is not eating anything to amount to much..today 2 bites of ice cream and a couple of sips of tea.  It has been 4 days since she eaten more than just a few bites of anything.....certainly not enough to sustain her body.  She rarely speaks/mumbles....but we are thankful she is not in physical pain.

Our family needs your prayers....we are going to lose our mom very soon and it is going to leave a hole in our hearts. We will shed more tears but we know that she will be in perfect health and in a perfect body.   She will take one last breath here and the next moment she will see her sweet Jesus. She will be united with her husband and parents and those who have gone before her.  Until we meet again in heaven.....We Love you Mom.

Diane, Nancy and Tim

The long long long good bye.......

Mom has been going down hill and there is nothing we can do to stop this snowball.  There has been very little pain for mom (or so it seems) but it is not pain free for those who love her.

Some days she will answer simple questions or tell you she is freezing....the AC unit is right next to her bed and when it kicks on she will tell you I'm freezing.  Some days she sleeps and doesn't eat.....some days she will only eat ice cream.  At this point who cares if she eats ice cream 3 meals a day....just some nourishment.  Drinking is nearly out of the question....each time we wait to see if it goes down or if she gets strangled.  Her food is pureed and is not the least bit appetizing in appearance.  Even with the thickening agent it is not easy for her to swallow liquids.  The easiest consistence for her to eat is ice cream or yogurt...she loves sweet things.  

It seems like the end is near but we have been saying this for about 6 weeks.  Every morning I wake up and realize I did not get a phone call in the middle of the night....it is a blessing to have her one more day but it is a struggle for her.  Her body is no longer functioning properly....she is on oxygen to help her breathe a little easier, she has a catheter to prevent infection of the wound,  her feet have not touched the floor to walk in over a year and she has been unable to sit up for the last 6 weeks or more.  She has had two seizures in the last two weeks, one just yesterday....both witnessed by just hospice.
After the seizure she sleeps heavily...you can not rouse her to eat or drink.  Yesterday the nurse was there and she did get a response when she bathed her eyes with a cold gauze pad...she never opened her eyes but did let us know she did not like that.  The nurse said the wound was no longer infected and looked good, although it will never heal.

Last week she went 4 days without food or drinking and we feared the end was near.  On Saturday she ate all of her breakfast and most of her lunch.  Nothing much since then so we are going on day 3 of not eating or drinking this week.

Her body lingers here on this earth.....the Lord will bring her home on His time table.  Her beloved Billy is waiting on her in heaven along with other family members who she cries out for daily.  Some days all we hear is daddy, daddy, daddy.  We don't know if she means her daddy or Billy.  She called Billy daddy in front of us....since he was our daddy.  Her body will be perfect again.  No memory problems, no more pain, 100% whole.

It will leave a hole in our hearts, just like dad's passing last year, but we know we will see her again one day.  It is not good bye but until we see you again.  We love you mom.

It has been awhile.......

The last time I blogged my dad was in hospice care.....he passed away a few days later on June 12th.  My mom had no idea what was going with him and to this day is not aware of my dad's passing.  Her beloved Billy of over 66 years is waiting for her in heaven.

The last few weeks have been hard......I followed a mom's blog whose child had cancer and he passed away about 10 days ago.  Another blog I follow....Missing Jim(he had early onset Alzheimer's) and he recently passed away.  Mom is just lingering.

A long time friend of my mom's who had lost contact with her found out about my dad's passing by googling his name on her new iPhone.   She contacted the funeral home to find out how to get in touch with mom.  I called her and gave her the news that mom could no longer communicate due to Alzheimer's and that mom no longer knew who we were.  I told her I would let  mom know that she called and that was praying for her.  On my next visit, I told her I had spoken with Margaret Carter and she said to tell you hello and that she was praying for you.  Mom's response was a long drawn out 'really' and she gave me a smile.  I reminded her of the good times that she and Billy had with Margaret and Johnny many years ago....playing cards every Friday night when I was just a baby.  I pray that there was a flicker of recognition in there.

I hate this disease....what you see on TV ads about taking this drug or that drug shows you the very early stages of Alzheimer's.  The reality is this disease has no cure and those drugs only work for a short while to slow the progression down.  Once it takes a real hold of the patient....there is no turning back and it gets worse.  Sometimes it is quick and sometimes it is just a long downward spiral.

Mom's journey has been a long downward spiral.  She has developed pressure sores because she is so thin and has no muscle mass.  The hospice nurse said it would be hard to treat and because of where they are she can no longer sit up in her wheelchair.  She is bedridden but is not exhibiting any signs of pain.  Thank goodness for that.  We had a frank talk with the director of her unit and she said that our mom was still here because she was still eating (although very little intake) and the love her family showed her.  It has been about a week now and eating is getting more difficult laying on her side and getting the bed elevated enough to aid her swallowing.  She had a few choking spells the end of last week and now her food is pureed.  It does not look good but she eats what she likes....if she doesn't like it she makes a face just like a little kid would do.  Last week I was feeding her something green (my first thought was it was green beans which she likes) but she made a face when I fed it to her.  I fed her the other items on the plate and tried again and still got an ugly face.  Turned out it was white rice with pesto and she did not like that one bit.

Deep down in my soul I feel like this is the beginning of the end and pray for a quick and easy passing.  Don't get me wrong, I love my mother dearly and will hate to see her  pass away but this disease is cruel....on the patient and the family.  It is so taxing to see your parent like this....it is a complete reversal of roles......I am now spoon feeding my mom 'baby food.'  If she was able to be at home, I would be dressing her wounds and changing her diapers 24/7. This is no way for an adult to live out their last days on this earth and it is no way for a 'child' to have to care for their parents.  My dad tried (way before it got to this stage) and he was not able to take care of her and she was still mobile and able to care for herself in some ways.

I see pictures on my FB page of mom in my 'memories' and in just two short years she has gone from being able to carry on a simple conversation, walk and feed herself to the last stages.  I have told her many times that it is ok to go meet Billy and her mom and dad....we will be fine and I will be sure to take care of Nancy and Tim (my siblings).  I don't know if she thinks of them as 'little' or knows that we are all adults.  Hug your parents, spouse, children, other family members...tell them you love them.  If you can make a donation to Alzheimers.org or the Gardnerfoundation.org, please do so to honor your family members and pray a cure is found for this awful disease.

Dad, I miss you every day and know that you are waiting on your Betty to arrive.  Mom go in peace to the arms of your Billy.

We love you both.  

Today it is not about mom.......

So much has happened in our family since my last post.  Mom is still hanging in there with this awful disease but our dad has been on a down hill slide.

On March 27th our dad fell at home and broke his hip.  He had a simple surgery (3 screws) to fix it.....he was discharged to rehab after a week in the hospital.  At 85, a broken hip can be the beginning of the end.  He was so weak from laying in the bed at the hospital he could not stand up for PT.  and it seemed as if he had given up was an awful patient.  He would tell PT he just wanted to sleep....and sleep is what he did.  About 2 weeks into his rehab stay he went into acute renal failure and they sent him back to the hospital.  He was really in a weakened state by then. The doctor said it may come to the point of dialysis.  Our family felt he would not be a good candidate in his weakened condition. Our dad is a fighter and fight he did, his kidney kicked back into working and he was released from the hospital back to rehab after about 5 days.

By this time he had no strength to even sit up and when they tried he just slid out of the wheelchair. He had lost all core strength.  He developed pneumonia during the next few days and by the time his insurance ended and it would become private pay we got a phone call that his white and red blood cells were very low and he needed to go back to the hospital.  This would be his 3rd hospital stay in about 9 weeks.  This time the news was worse....yes, he did have a another UTI but the blood count indicated that he  possibly had MDS.  This is the disease that Robin Roberts (on GMA) had after her breast cancer treatment.  We were asked if he had had any chemo treatments and he has not.  The only way to confirm the disease is with a bone marrow draw from the hip.  The doctor said even if it was confirmed, he could not stand the treatment which would be rounds of chemo and then a bone marrow transplant. Since that was not an option, the doctor said we needed to consider hospice sooner rather than later.  With everything he had endured these last several weeks we had seen the writing on the wall although we did not want to admit it. 

That night, I started a search for inpatient hospice.  I googled and found a beautiful place in Duluth.....too late to call that night but it was on my to do for first thing in the morning.  My prayer that night was if that was the best place for dad to let them have an available bed when I called in the morning.  God answered our prayer and Jim and I went to visit......it was beautiful and peaceful.  God provided a place and we started the process to get him  moved from the hospital to hospice.  We started the process on Wednesday but it was too late in the day to move him.   Dad had been very lucid with the nurse practitioner about his last few weeks....he even admitted to her that he had gone downhill.  Thursday was going to be the move day.  We met with hospice at the hospital and filled out the paperwork and told dad he would be moving.

Something's you just can't make up.........As we left the hospital to go to hospice, my car indicated that my emergency brake was on.  I had stopped at a light, pulled it up and released it but the indicator was still on.  We made it another few blocks and I decided to turn the car off and back on......big mistake.  The car would not start.  Here we are in the middle lane of lunch hour traffic and the car would not start.  I called AAA thinking it was the battery and they put a rush on coming to my
rescue.  I am signaling the people to go around me rather than sit behind me blowing their horns.
Finally, Atlanta's finest pulls up behind me with blue lights flashing......he asked me what the problem was and I told him the car is dead.  I told him AAA was on its way and asked if he could use his push bumper and get me into the parking lot of JR crickets across the street....'sorry mam we can't push cars any more.'  He waited a few minutes and said he was sorry but he was going to have to call a tow truck.  Guess who got there first?....the tow truck.  Before he even got the car hooked up, here comes AAA but only a battery truck.  The tow truck said it would cost $65 to tow me to the parking lot across the street .....what can you do at this point?  He did and AAA checked the battery.....nope the alternator.  I been talking to Jim during this fiasco and he was headed our way to come get us.  I told the tow truck to carry it to our Goodyear place in Norcross to have it looked out.  I called them to give them a heads up and that it appeared that it was the alternator.  He said he could get it fixed that day.  So we say goodby to the car, AAA and the policeman and went to wait on Jim at JR Crickets. Funny thing I had just told Jim about this place a few days ago and said I had eaten there before the
fire when they were close to the then BellSouth Center downtown.  Well, I was eating here again
waiting for Jim to pick us up.            

Nancy and I got back to her house and took her car to go to hospice.  Her first visit and she was impressed.  This will his home until his final home going.  He is not eating much and drinking very little fluids. He is sleeping peacefully and rarely rouses when we are here.

It's Sunday morning..Jim and I are with him at hospice.  He has had a little applesauce this morning. I am just watching the slow rise and fall of his chest.  He did not 'wake up' when we got there nor when I put his oxygen back in his nose.  It is so hard to see him just lying there.  The nurse came in and told us his urine was very bloody.....it had been orange tinged in the hospital but now it is blood colored. She said the doctor would be in tomorrow morning to check on him.  His lunch came but he shook his head no when I asked him if he wanted something to eat.  He did manage about 1/2 of a small cup of yogurt and a few sips of water. I don't know how long he can last with this little bit of food and water.

We have had about 10 weeks of 'preparation'  but it is still hard. The family knows, when he dies we will see him again in heaven.  Mom will join him one day and they will both be free from pain and disease and will be together again.  They will celebrate their 66th wedding anniversary on July 22nd.

Dad, it will not be good bye, but until we see you again.

We love you dad,
Diane
Nancy
Tim

Hospice called today......is the end near?

Two weeks ago mom began a downward spiral.  On Monday and Tuesday she picked at her food and she usually is a member of the clean plate club.  Of course she could not say what was wrong.  On Wednesday morning she did not eat anything and began to hold her head.  The memory care facility called and said they were taking her by ambulance to the hospital, thankful they knew something was wrong...mom never had done this before.   My sister jumped into action because I was on my way to my first appointment with the radiation oncologist.  She was taken to the hospital and they discovered a brain bleed.  She was admitted to ICU.  My sister said the whole time she was with her she did not say anything that anyone could understand.....just jibberish.  On Thursday, my sister and I visited her in the ICU and she was unresponsive.  We talked to her loudly and gently shook her but she did not open her eyes.  We talked to the nurse on duty and she said they had taken her for another CT scan that morning but ICU did not have the results yet.  I asked the nurse if she was asleep or unconscious and she said asleep.  She said she had been alert when they took her for a CT and then cleaned her up upon her return.  We signed a DNR and talked with the doctor before we left.  At that point my sister and I were thinking the end could be sooner rather than later.  What a surprise when I called 4 hours later to check on the CT scan results and the nurse said that she has been discharged and is on her way back to the facility.  I said 4 hours ago she was unresponsive and you discharged her....the nurse said she was alert.  I was so upset but that is a long and ugly story in itself. 

Jim and I rushed to the facility and found mom not alert, still just talking jibberish.  The memory care unit had been led to believe she was alert and authorized her return to the facility. They were appalled and called 911 again.  We asked them to take her to a different hospital.  They admitted her and did see the brain bleed on their CT. Emory said that it seemed to be a bleed on top of a bleed.  During the 4 days she was there she ate very little but was hooked up to an IV for fluids and potassium.  We did get some ice chips and applesauce down.  We discussed hospice care and where would she go after discharge.  Could she go back to her current facility or a nursing home?  The facility came to evaluate and said she could return and age in place.  We are so thankful that she was able to go back to her 'comfort zone.'  She returned to the facility and the next day they entire facility was put on quarantine for a bad stomach bug....no family visitors.  We kept in touch with her caregivers and are thankful they took care of her and prevented the stomach bug from getting into the memory care unit.  Tuesday, March 10th, the doctor visited and agreed that hospice was in order and he signed the papers to authorize hospice care.  He did not think she could get back to her level of activity from just two weeks earlier.  She has gone down so quickly.  She is no longer mobile on her own.  She no longer is able to stand or even sit up without assistance.  She seems to have joint pain, her knees are swollen and if you move her she lets you know that it hurts.  We can not believe such a difference in just two weeks.

Today we met with hospice and signed the papers. Valerie was certainly an angel in disguise and explained how hospice worked, what would happen, and who would do what with her in her unit.  We are thankful she can remain at Northlake Gardens and continue to get the loving care and attention from those she is familiar with. Hospice is just another layer of love and care.  It is still hard to believe that on my last visit at Northlake, that she was sitting up in the day room and doing well. 

Today during our visit, mom was calling for her daddy.  While in the hospital she would look to the ceiling and tell us to look....it is beautiful.  We all know there is no cure for Alzheimer's and no chance of her condition improving....it is just a matter of time.  We are on God's schedule....we don't know when but we know that when it is time, God will take her hand and lead her home.  My devotion for today was so 'on time'....."Don't carry your burden any longer, but bring it 'boldly to the throne of grace' and leave it there."  AMEN !

 Please pray for our family....it is a tough time for all of us and we would appreciate your prayers.

Billy Smith, husband
Diane & Jim Chadwick, daughter
Nancy & Jim Love, daughter
Tim & Dana Smith, son
Susan, Scott, Nicki, Andy, Preston, Patrick, grandkids
Chris, Madison, Macy, Chesney, Parker, Caden, Hudson, Kensington, great grandkids

Time flies....officially it has been 4 years

February 7th marked the 4th anniversary of my first post of our journey.  We are just rocking along, probably in stage 6. Mom's doctor did prescribe a low dose antidepressant to help with her crying for her daddy.  For the last few months, mom has cried during our visit.  Over and over she says daddy, daddy, daddy...wanting to know where he is and when he will be back.  She will tell us she just saw him earlier today or last night.  Breaks your heart....he has been dead over 30 years.  She never cries for her mom just her daddy.....she was an only child and a daddy's girl for sure.  That low dose has made all the difference, the last few visits she is not crying and sometimes we can get a smile out of her.  There will be a Valentine's party on Thursday night and we are all going to celebrate.  She will not know the meaning of Valentine's Day but I hope she can tell we all love her very much.  We love you mom.

Catching up.........

A lot has been going on in my life other than my mom's disease.  I have been diagnosed with breast cancer and I am beginning the fight of my life.  That is another blog.....My Cancer Ride.

Thanksgiving was just another holiday that was celebrated without mom.  Her alzheimer's disease is taking her further and further into her own world.  A world that we are not part of....she does not recognize us and some times does not even acknowledge our visit with her.  We try and put on a happy face at the family gatherings but I know we're all missing mom.  Mom had an appointment with the doctor and my sister and I tried to take her.  She got to the car and could not figure out how to get in.  We spent over 30 minutes giving instructions but mom kept saying she did not have any feet.  This disease causes them to forget things they have done all their life.  How to get in a car, how to use eating utensils, how to swallow and how to do just about anything.  Today she was unable to 'turn around and sit on the seat' of a car. Oh how I hate this disease.

The Christmas brunch at NLG was held on the 20th, mom did not recognize any of us at first.  I think she finally realized who dad was and she spent time holding his hand.  Dad was sick with a cough at the time and Nicki had just gotten over the flu.  Dad fell the next morning and then later in the afternoon was unable to get out of his recliner.  He was taken to Emory via ambulance unable to walk....Dad was admitted to the hospital on Sunday night/Monday morning with what turned out to be the flu.  I could not afford to get sick with my upcoming surgery so I had to stay away from dad and the flu.

Christmas brought in Susan and her family from Texas....we did go see mom but mom had no idea who Susan or Macy were during the visit.  Our Christmas Eve family celebration was now missing both our parents this year.  We could not bring mom out since she had been unable to get in the car just a few days earlier.

I went to visit mom a few days ago and she cried my entire visit.  Nothing I could do could stop the tears......nothing the aid tried worked either.  She was crying for her daddy......over and over saying daddy daddy daddy.  She did say she had seen him yesterday, I tried to console her and say he had gone to work and would be home later.  That just caused her to cry more.  We have no way to know if something hurts, is she in pain? Or is she just confused and scared?  This disease just sucks...there is no other word to describe it.

My mom has no idea I have cancer.....she would not comprehend what it is or even means.  I wish she could just give me a hug and tell me that it is going to be ok.  I have my surgery on January 7th.....I will be fighting my fight with this disease.  Mom we love you and miss the mom that guided us as we grew up.  You took care of us, now it is our turn.

Not a good day.....

My sister and I went to visit mom today.....she was crying when we arrived.  Crying out daddy, daddy,  daddy......we told her who we were but we could tell it did not register who we were.  She just kept crying out for her daddy.  The aid asked if we knew why and we had no idea.  Her daddy has been dead for over 30 years but that one piece of a memory was there today.  The aid said she usually does not start crying and calling for her daddy until late afternoon but that she had been this way since breakfast.  We tried to console her, tried to get her to go for a ride with us but we could not get her to move from her spot on the sofa.  I told her I brought her a special treat and gave her an M&M peanut butter and she liked that.....usually she will eat several but would only eat one today. She finally stopped crying and we kept telling her who we were and then she would start crying again.   Her ability to carry on a conversation did not exist today.  We just kept talking to her and when we would understand a word we would comment back.  It just breaks my heart to see her like this. It is a horrible disease that makes no sense to the one who has it....and to the family it is a progression into a black hole for their loved one.  There is not a darn thing you can do but watch them slip farther and farther away.  Her bad days seem to out number her good days as she slips away from us. I wish I had a funny story to tell about today's visit but I don't have one.....just heartbreak today.   Mom we love you.

Another birthday for me......

I will be celebrating another birthday in just a few days....but I will not hear my mom say Happy Birthday.  Now her days run together, she does not know who had a birthday, when it was and never told any of us Happy birthday.  It is sad that she has no concept that she is our mom, grandmother,  or wife.  She is just someone who longs to see her parents again and wonders where they are.  We go to see her and I start every visit by saying, 'Hello Betty, I am your daughter Diane'.  Sometimes there is a glimmer, sometimes she cries but does not know why but most of the time it is just a face with no recognition of who I really am.  She became a great grandmother for the 8th time just a few weeks ago but has no idea what that really means.  It breaks my heart to know that she has no idea what is going on around her.  Her words are failing and she repeats herself...the last visit the 'magic word' was pigs, pigs, pigs.  It has been pickles and paper at different times and there is no way to understand what she is trying to say.  Mom we all love you and know that you are just a shell of what you used to be.  We will soon celebrate Thanksgiving and we will be thankful for the many years you knew us, loved us and raised us and helped us raise our own children.  We are praying for you as you hang in there with this awful disease.

And the days roll on.......

I can see a further decline with mom every time I visit.  Our conversations now are mom talking but rarely making any sense.  Her sentences are words just jumbled together but she is still able to enjoy the visit.  I always take her out in the garden area because she has always loved sitting outside.  Now the flowers (in her mind) take on shapes of people or things out in the garden.

In a recent visit she was repeating the same word over and over......paper.  I had no idea what she was trying to say but just listened to her voice and would nod and say "really?" every now and then.  I decided to take her for a ride to distract and redirect her attention...it helped.  We drove around Tucker and she said these houses were beautiful and that she had never lived in a house so nice.  I then told her about our house where I grew up and shared some of my memories from that home.  I told her after I got married they moved to Tucker and she had a beautiful home that she shared with her husband and her other two children.  I related some of our 'holiday' memories that we had shared in that home, but it did not seem to register.  When we returned to NLG, we listened to some of the old hymns and she sang along with Amy Grant's Holy, Holy, Holy.....she knew every word.

Moving mom to memory care was one of the hardest things we have had to do....dad wanted her home but he knew that he could not take care of her 24/7 and the kids could help but could not provide the constant care that she needs.  She would not take care of her personal hygiene when we tried to help her.  In her mind she had just done that.  Dad's hospital stay last year, opened our eye about how much dad was doing for her and hiding it from us.  Mom is content in memory care and does not 'miss' home.  Before she moved into memory care, she did not understand where she was (in her home) and was always asking to 'go home'.  She did not know where home was but it was not where she currently was living.  In the mind of a person with AD they want to go back to a 'safer' time, where they knew what was going on around them.  She wants to be with people she remembers from many years back.  She still asks when her mom and dad are going to be home and we have to use our best 'fiblet' and just say later.

This disease is truly awful and until you experience it I know it must be hard for you to imagine.  Our mom has gone from being the one we could question about her famous macaroni and cheese recipe to one we sit and visit with...holding her hand and cherishing the time spent together.  Memories we hold dear are no longer part of mom's memory.....she does not remember her children, grands or her husband.  Mom and Dad were married 65 years on July 22 but she did not remember it.  What a grand party we could have had to celebrate their lives together.  Now, we are just people who come to visit her.....I hope that she understands how much we love her.  I wish there were a magic pill to restore her memory but there is nothing out there and she just rolls along day to day.  We love you mom.

Happy Mother's day.......

We will soon celebrate another Mother's day....to our Mom...grammy....meme it will be just another day.  She will not be able to understand why we are celebrating a day for just Mother's.  I have asked the family to share some of their fond memories about her.  To some she is known as Grammy, others call her Meme and to her children she is Mom.

Nancy Love (daughter)

The past 12 months have been extremely hard.  It started last May...to be exact the Friday after Mother's Day 2013.  Dad was admitted to the hospital with a severe UTI.  Up until that time he was her 24/7 caregiver.  There were days we did not think he would ever come home.  It was during this time that Mom really began her decline with Alzheimer's.  It is very sad to watch your Mom go from knowing and understanding to not knowing exactly who you are and what is actually going on.  I have said many times you have to laugh to keep from crying, but the tears do come more than I want to admit.  Mom has always been so strong and loving to all of us and I pray that can be said of me.  The one thing I keep remembering is how much music did and still does mean to Mom.  Last fall, Jim Van Matre (a former Minister of Music at Rehoboth Baptist Church) came by Northlake Gardens to visit mom and dad.  Jim played the piano and Mom sang every word of those gospel songs that he played.  It was a sweet, sweet time.  As the days have drifted by,  Mom only knows who we are sometimes.  I know it will only get harder as she slips away more but she is still 'Mama' to me.  I love you Mom and Happy Mother's Day.

Patrick Smith (grandson)

Some of my fondest memories are sitting on the couch playing cards, mostly Rummy,  with Meme.  She also would come and watch my baseball and basketball games, from the time I played t-ball all the way to my senior year.  She watched me in the afternoons after we got out of school and she would make snacks for me.....cutting up an apple or fixing a bowl of strawberries and cool whip.  She was always singing or humming around the house.  Long story short I remember her willingness to go out of her way to anything I asked or anything she knew would be beneficial for me.

Andy Love (grandson)

I remember as a kid sitting outside with Meme on the carport and eating watermelon.  She showed me how to spit the seeds in the bushes.  I also remember going to Daytona and she and Papa would sit in the shade by the pool and she would always come home with a better tan than any of us who were in the pool or sat in the sun all week.  It seems as though her favorite past time, aside from watching her grandsons play baseball, was just sitting outside in the carport.  She wanted to be out front where she could see what was going on in the neighborhood.  My son was born a little over three years ago and on Christmas Eve we walked in with 8 day old Caden....it only seemed right to walk straight to her and let her be the first one at the party to hold him....he was her great grandson.  Now I have a daughter on the way, I hope to repeat this and let her hold her great granddaughter after she arrives in August.  As tough as it is to watch her go through this awful disease, it make sense to hold on to these memories I have.  I will always love my Meme and enjoy sharing the memories that could go on forever.


Susan Holdrich (granddaughter)

There are many great moments of sweet Gram's...first she was lovely.  She was warm, she loved, she laughed, she loved her TV story "All My Children", she loved her church, she loved where she grew up, she loved Pops.....she loved all of us.  She let Nicki and I sit at her feet (when we little and even as adults) and fight for 'sitting space' for her special head rubs and back scratches.  She loved well and most of all we loved her.  Some of the best days with her was picking Chris up on the way home from school, eating lunch with her and watching what Erica Kane was up too.  I loved it most when all of the cousins were there for lunch, always crazy getting everyone's hands washed and to the table.  I loved catching up with her at the beach and sharing Peanut Butter M&M's with her.   Today,  my heart breaks, slowly observing what Alzheimer's can do to a person, her heart and especially our heart.  At times, she is in the present,  even if for just a few moments.  She is still beautiful, she is still love, she is still my Gram's.....mostly she is loved by her family.

Scott Magnus (grandson)

To me she is Grammy.  I remember her playing the piano in the living room and she also let the kids play the piano....mainly we just banged on the keys.  I remember a Labor Day 17 nearly 18 years ago, it is a memory very similar to Andy's that was just a few years ago.  The family got together and being a proud new dad I handed my first born, Madison, to her to hold.  Any time we had a new addition the tradition continued....Grammy was given the honor to hold the newborn for the first time.  That is my fondest memory--proud daddy handing the baby to his Grammy.

Diane Chadwick (daughter)

MOM.....where do I begin.  I have to agree with all of these special memories that are mentioned  and then some.  I remember coming home from the hospital over 40 years ago with my first born, Susan,  as a 21 year old.  In 'those days' you could not climb stairs after the birth of a baby so we went to stay with mom & dad for a week.  She helped me care for Susan and taught me how to take care of a baby. When we went home we were really on our own but I knew what to do.  When I had to go back to work....I did not have to put Susan in day care, mom cared for her everyday.  Then we moved to Florida when Susan was 18 months old and all of our hearts were broken.  I think I cried the entire trip to Florida.  Mom was always the one who held the family together....any holiday was celebrated at her house with all the family.  She cooked and cleaned and then she could never sit down to enjoy the meal...she was always refilling tea glasses. We did not move back to ATL until Susan was in the 7th grade....our house sold quickly in SC and we had no place to live so mom said come live with us.  So we moved in and stayed with them from January-April when we found our new home and moved. My kids lived in the living room and had their clothes in boxes....they camped out and loved it.  She offered up her baby sitting services again when Christopher was born, she quit her job and kept both Christopher and Preston as babies.  They were 11 days apart so she basically had twins to take care of and she was in her late 50's.  I don't know if she ever knew how grateful we all were for her unselfishness on taking care of both the boys.  She was a rock for me when I went through a divorce and was there for me when Jim and I announced we were getting married.  Mom has been through it all with all of her children.  She has the biggest heart and loved us all unconditionally.  She is loved more than she knows.....these days she may not remember us by name but when we visit her, she knows it is someone she knows and that she is loved.  We celebrate this Mother's Day with mom in memory care, she may not remember who we are and why we are celebrating this day but we all now what a special place she has in our hearts.  We all love you MOM.  

Our mom was healed......if only in my dreams

What a dream last night!  I dreamed we took mom home to visit with dad and when she walked into their home she immediately became lucid and no longer had Alzheimer's....she said she had just been fooling us all along. Sad reality when I woke up and realized it was just a dream.

On a recent visit with mom, she asked who I was when I sat down next to her.  I told her I was her daughter Diane and gave her a hug.  She held my hand and said she was so glad to see me and how did I ever find her at her home.  I told her I knew where she lived and I came to visit.  During our conversation it was apparent she did not remember who I was but as I was leaving she yelled out Diane come here.  When I went back over to see her again she said I forgot what I was going to tell you but she was pulling at her hair.  I had told her during our conversation her hair still looked pretty but we would need to take her for a hair cut in two weeks.  I asked if she wanted her hair cut and she said yes, I told her it looked pretty but my sister and I would take her soon to get her hair done.  There was a glimmer of OUR mom in there, if only for just a moment.

A recent editorial in an LA newspaper had some shocking figures on Alzheimer's. Thousands die from AD but yet it is usually complications of something else that is listed as their cause of death.  More people REALLY die from AD than cancer but it is not listed as their cause of death.  They end up with pneumonia, fall and hit their head, can no longer swallow so they can't eat, and many other things that cause death but the reason is REALLY AD.  It also talked about the millions of dollars worth of 'free care-giving' done by the caregiver who is usually the spouse or other close relative.  This disease touches more than the care givers, every family member is effected in some way.  I took our mom and figured out the BLOOD relatives that are touched by AD... there are three adult children who each have 2 children.  Out of those 6 grands, 4 are married and have two children each or at least one is due in August to make that family have two.  Total of 17 blood relatives that have been touched by this awful disease now with a family member and could have this disease in the future. Now include the spouses of these blood relatives and you can count 7 more affected and two are not yet married.  So with just one person having AD in an average size family, 24 people are affected not counting mom and dad.  If you have a family member that has AD--do your numbers it will astonish you.  Multiply that by the thousands of people who have AD and people who have a blood relative with the disease grows by leaps and bounds.

It is that time of year for Alzheimer's walks....people may ask you to donate money for the Alzheimer's Association.  Don't think that is not my disease, because sooner or later you may have someone in your family diagnosed with AD.  If someone asks for a donation, think before you just say no.  I will be giving in honor of my mom.

There are many blogs out there with families going through this same journey....some have a lot of followers. This one is just family but it helps me to write about it.

We love you mom, honey, grams, meme.

Billy, Diane, Nancy, Tim, Susan, Scott, Nicki, Andy, Preston, Patrick, Christopher, Madison, Macy, Chesney, Parker, Caden, Hudson and 'peanut'.  Thank you to all the spouses....Jim, Jim, Dana, Brian, Caressa, Justin, and Talethea.  We could not do what we need to do for mom without everyone's support.

Another year down this road....

Our family made it through Christmas and into a new year.  We have had one new addition to the family, Hudson Thomas Waits and found out we are expecting another addition sometime in late summer.  Congratulations to both families.

Mom has settled into her daily routine at the memory care facility.  Christmas was especially hard on all of the family this year.....we have memories from previous years and knew that the party would not go like it had in years past.  Mom was able to come celebrate with the family on Christmas Eve for a couple of hours.  With a family celebration that included 18 adults, 3 teenagers and 3 kids under 5 it was a rousing party.  The two adult granddaughters kept her company and talked with her during the party.  She did not seem to understand what was going on and why so many people were coming and going.  She opened her presents but did not understand it was Christmas.  She knew we were people that were familiar to her but she never recognized anyone to call them by name, not even dad (her husband of 64 years).  That was hard on him when he realized she did not know who he was.  He was able to kiss her on her hand when she left the party but there was no recognition in her face.

We have just passed our 3rd year milestone into this journey and boy what a difference in mom.  Her close up vision is very limited.  She has a hard time at meals trying to find the food on her plate and maneuver the utensils and glass.  Other people have said this disease is like an age regression, their memory goes back to a 'safe' time in their life and then their abilities regress also.  I see it as different phases.....teenager (she had a time when she was angry and aggressive), child like, toddler like and I am sure we will see infant like.

I know that many people are facing this disease with their loved ones and you just have to cherish each visit with them.  Sometimes she is looking for her parents and is restless and sometimes she will give you a smile when she sees you but she doesn't remember who you are.  She wants to 'go home' which we know is another common request from patients with Alzheimer's.  BUT 'home' is not where they lived just a few months ago....home is back in their memory bank of good times from many years ago.  She wants to see the people she remembers best--her parents.   They loved and cared for her during the years before she was married.  That is her safe place.

My prayer is that for one small moment she will recognize dad, me, my sister, my brother or any of the grand kids....just someone.  If you have read the book or seen the movie THE NOTEBOOK, you know what I am talking about.  For all of you with this same prayer,  one day it will happen....maybe not on this earth but when we get to heaven all disease will be gone and my mom will remember.  We love you mom!

Thanksgiving....a different celebration

This year was so totally different from all of the previous family gatherings.  Mom moved to the memory care unit on Saturday before Thanksgiving and was settling in.  This awful disease has really taken hold of her over the last few months and we have seen a steady decline.  It is hard to get a smile out of her but every once in a while we see 'our' mom as we remember her.  We talked with several people and they thought it was best that she stay in the memory care unit on Thanksgiving and not come to house of 18 adults and 3 children under 5.  It was certainly a 'tough' day but a few of us did go see her after lunch and took her some desert.  The unit currently has 16 residents and 10 of them stayed for the holiday. That was my biggest fear.....that mom would be there with two or three others and the rest of people would be away. Making me feel like a total failure....thankful that was not the case.  Mom seemed happy to have some company although she did not know who we were.  She seems much happier in the new unit with the more structured feeling.  The people who work there are awesome and I don't think we could ask for a better place.  After all dad has been through over the last 6 months, he was able to come for Thanksgiving for a trial run at home.  So far he has done well and will likely come back home to live. We are going to give him a few more days at home before we give his notice.

Alzheimer's is slowly taking the mom I knew away....a little bit at a time.  It is sad to remember how vibrant she used to be and to see her the way she is now.  It is still mom but she does not recognize family members and sometimes can not follow the conversation.....often we just sit and listen to her talk.  Visiting her is still so important and I cherish each moment we have together.  The next big holiday will probably bring lots of tears as we get closer to Christmas.  My daughter will be coming home from Texas and it will be the first time she has seen her Meme since last Christmas.  It is a drastic difference in just twelve months.

Savor each moment with your family, you do not know what tomorrow will bring.  I know what the future holds for mom and this disease and I know WHO holds our future.  Thank you Lord for our memories that we can cherish.  Love you Mom.

Alzheimer's Awareness Month

This is Alzheimer's awareness month.....what does that mean to you?  To a family deep in an Alzheimer's journey, it means there is never enough publicity for this awful disease.  It seems that no one cares....there is funding for cancer, ALS, and many other diseases but Alzheimer's is for old people why fund it?...WRONG! There are many 50 something's and even 30 and 40 something's being diagnosed with Alzheimer's.  AND THERE IS NOTHING TO STOP THIS DISEASE....there is no prevention, no cure and drugs only slow it down for a little while.  Some people have success with drugs or a combo of drugs and with some people there is no way to slow down the tidal wave of the disease.

Recently, mom fell and hit her head while brushing her teeth....she just stumbled and fell.  The assisted living facility has a rule, if they hit their head they must go to the hospital to be checked out.  She did have a nasty lump on the back of her head and she did complain that her neck hurt, so off we went.  HOWEVER a hospital is the worst place a patient with Alzheimer's can go. It literally throws most of them into a tail spin, mom got there and at first she was a model patient.  My sister drew the short straw to stay overnight with her, my brother had to go to work the next morning and my husband is still recovering from a broken hip.  I told Nancy I would be there to relieve her in the morning.  They took mom for an xray and a CT scan and then tried to put a collar on her to stablize her neck.  That was not going to happen....she fought the nurses and they decided to not force the issue.  They came back to put in a catheter and that turned into a raging nightmare my sister wishes she could forget.  They never got in the catheter. They did admit her to the hospital for observation. Because mom had gotten so upset over what the doctors and nurses were trying to do for her, she was keyed up and could not sleep.  My sister had little if any sleep that night because mom was talking so much.  When I got there in the morning she relayed what had happened overnight.  When Nancy left, it started!  She was so out of her normal routine and had no idea who I was or why people were trying to check her temp, her blood pressure, draw blood, look at her head to check the lump it was awful. They needed to put in an IV for fluids, that lasted about 15 minutes.  She kept bending her arm setting off alarms so I finally asked them to remove it.  Just bring me some water and I would get her to drink something.  They promised a doctor would be around later in the day to dismiss her if all tests provided negative.  Mom fought me tooth and nail over drinking water, she slapped my hand and soaked her hospital gown....they she started yelling that I had slapped her.  She would not lay down in the bed but sat upright in the most uncomfortable hospital chair all day long.  She paced the room and tried to go out the door but I would stop her and guide her back to the chair.  She would want the door open, then she would want it closed, she thought the people in the hall were talking about her.  At lunch she would not eat....she said they were trying to poison her.  I ate some of her lunch and she told me in a very serious voice that I was going to die.  A cardiologist tried to listen to her heart, she would have none of that. They ordered an echo and I told the nice tech she would not let anyone listen to her heart she certainly was not going to let him do his echo.  I had my ipad with me and tried to get some gospel music on hoping that would help calm her. She grabbed it out of my hands and attempted to throw it across the room but I did rescue it and got on the music. Thankfully she started singing and did calm down, the nurse came in and asked her to get in bed and she finally agreed to get in the bed.  The music lulled her to sleep for about 30 minutes.  Then it started all over, the doctor fianlly came in for rounds about 5pm and by this time I was exhausted both physically and mentally.  She wanted to keep her overnight again so they could check her pacemaker in the morning and be sure that was not the cause for her fall.  She told the doctor that I was a mean cousin and had been so mean to her all day.  The doctor told mom I will make sure she leaves....the doctor took me out in the hall and said she knew that I was her daughter and asked me if she had ever had these type of episodes before.  I said once about 2 years ago when she was first diagnosed.  I told her I knew it was the disease talking and not my mom.  The doctor went back inside and told mom the cousin had left but that her daughter was her now, I went back in the room and mom said in the sweetest voice I am so glad to see you....can you take me home. She had turned into the mom I knew....the doctor did agree to get the pacemaker checked that evening and then we could go home.  There is a book on Alzherimer's The 36 hour day, and I had just experienced it in the 10 hours I was at the hospital.  All the tests were negative and mom was sent back to the assisted living facility that evening.  She had a rough night sleeping that night because she had been running full steam ahead for 24 hours.

It is so hard to see your loved one so out of control and there is nothing you can do to stop the hurricane brewing inside of them.  I pray that God is merciful and gracious with my mom as this disease progresses.  It is never going to be any better and will continue to get worse.  For those of you who do not have a loved one with Alzheimer's thank God every day.  If you do have someone who is effected by this disease thank God for the good times you remember with them that they can no longer remember.  It is a long journey and we just take it one day at a time.  Thank you God for my mom and dad who raised me and my siblings in a loving Christian home.  Mom sometimes does not recognize me but that is ok...I know who she is and love her dearly. Love, Diane

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.