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.