Saturday, November 29, 2014

Counting My Blessings

Ephesians 5:20 “giving thanks always and for everything to God the Father in the name of our Lord Jesus Christ.”
This week represents a time of Thanksgiving in our nation, and it gives focus to Americans on being thankful for our blessings. As a child of God I am thankful every day, but I often spend more time complaining than I do thanking God for His grace and mercy.  I have to admit that some days I struggle to find the blessings - not because they aren't there but because I get wrapped up in the bad stuff.  I'm working to change my perspective. 

I am beyond grateful for the opportunity to follow Jesus without fear for my life or true persecution. 

I am thankful to have spent over 33 years married to the man I fell in love with at age 18.  Our marriage is good - not perfect, but we have enjoyed many more happy times than not so happy.

I appreciate the simple upbringing I had in a home with parents who taught me wrong from right, made me behave, gave me what I needed but not everything I wanted, held me to high expectations but allowed me to fail, and loved each other and their children unconditionally. 

I am grateful for my mom who had the courage to leave an abusive marriage when I was 8 months old and lived with various relatives, eeking out a living to make sure I was fed and kept safe. 

I am eternally grateful that my dad (the man who raised me) loved my mom and me enough to accept us as a whole package when he married my mom 55 years ago. 

I am thankful for the children God blessed us with. He gave us a strong-willed spirited girl who is a beautiful woman of Christ today. She is a wonderful wife, an excellent teacher, and a huge blessing to her family. He gave us a baby boy who was blessed to be taken straight to Heaven and is waiting for us there. He gave us a second son who gave us great joy, kept us laughing and broke our hearts when he could not deal with his illness of addiction. I am thankful he now lives with Jesus and waits for us. 

I am humbled and grateful that God allows me to care for Billy with the help of family and friends. I hope to someday thank God for a cure for Alzheimer's Disease. 

What a blessing it is to have my mom live with me now.  At a time when she needs me to care for her, I can do that just as she did for me. 

I am blessed and grateful. 

Sunday, November 16, 2014

Sixty Nine Days

My last blog post was 69 days ago on September 8th.  We had recently placed Billy on hospice care, and my dad was still living.  These are some of the events of the last 69 days:

  • On September 14th, Billy's nurse called to tell me he had fallen out of his chair onto the floor of the dining room and an ambulance was being called.  He received nine stitches along his brown line.  Henceforth, when no one is watching Billy, they are to recline his chair so he won't lean forward and fall out.
  • On September 18th, we visited my dad at his care facility and realized he could no longer hold up his head and was not making eye contact.  He ate very little. 
  • On September 22nd when we saw Dad he never opened his eyes and would not eat.  
  • On September 24th, Dad had his 78th birthday. The staff propped him up and tried to feed him. We sang happy birthday to him, and he never responded. 
  • On September 28th, Dad went home to eternity at 1:30am.  
  • We celebrated Dad's life on October 1st and laid his body to rest. 
  • During most of September, Mom worked on getting in with a gastroenterologist following her last hospital stay.  I am amazed at the practices of the group of gastro docs in the mid-cities area of DFW.  Because my mom saw a gastro doctor in Dallas three years before, none of them in that area would see my mom.  My doctor in Grapevine agreed to see her and do the scope she needed.  During the three week delay, her pain increased almost daily. 
  • After Dad's funeral on October 1st, Mom had a colonoscopy on October 7th.  I think we knew what we would hear, but we hoped differently. Mom's cancer has moved into her colon and created a blockage.  That doctor told her she needed to see the oncologist right away.  Apparently right away in doctor language is 8 days later. 
  • On October 15th, the oncologist told Mom she would need to have a colostomy.  Mom told him NO. He offered other possibilities.  They did not work. 
  • On October 21st, we returned to the oncologist.  Mom was worse.  She had a transfusion on October 22nd and was scheduled to see the colon surgeon on October 29th.  
  • On October 25th, Team BK walked in the annual Walk to End ALZ!  We raised over $2,700 to benefit Alzheimer's research.  THANK YOU, Team BK! 
  • On October 29th, we took Mom to see the surgeon who scheduled her surgery for October 31st.  The surgery was considered palliative.  
  • On October 31st, Mom had successful surgery. The surgeon was able to see the cancer but did not attempt to remove any of it.  He did reroute Mom's colon, and she is now learning a new way of life.  She hates it, but she has maintained a sense of humor. 
Those are the biggies of those sixty-nine days. Along the way, I saw Billy several days a week, and I think he's pretty stable at the moment. His smile keeps us going, and we are so grateful that he shows recognition by reaching out to us and smiling.  His college buddy, Don Garrett, came by to see him last week, and he seemed to recognize Don.  Every day with an alert Billy is a blessing. 

With everything going on in our lives, it seems that grieving my dad's loss has been somewhat delayed by Mom, my sister and me. Mom looks forward to seeing Dad and so many loved ones in Heaven soon. I understand that, but we are not ready for her to leave so soon. So many of you have prayed for us, and we know that.  Thank you. I continue to stand on God's promises. 

Revelation 21:4 
He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."

Saturday, September 6, 2014

I Need Thee Every Hour - words so meaningful to me

Sometimes you see a train in the distance, and you know it's coming your way because you see the light getting closer. The speed of the train is unknown until it gets much nearer. I've known for sometime that changes were coming, but I didn't know how quickly they might happen. The timeline is fuzzy in my mind, but I can assure you that Billy's decline in the last six months has happened in double time, and I have shed as many tears in those months as I did when we first placed him in the nursing home. When I attended his last Care Meeting in July, the nurse who attends those meetings said that in her 20+ years working in nursing homes, she does not recall a resident declining so much in two and a half years. When he first moved into the nursing home, the administrator said she felt he needed a tag that read:  I am a resident not an employee. When anyone entered the memory unit, Billy would extend his hand and introduce himself as BJ Knowles. They thought he worked there.

At the present time, Billy does not stand alone or walk.  The staff uses a mechanical lift to get him out of bed. He cannot sit up straight on his own.  He fell out of his wheelchair several times, and they put him in a geriatric chair.  He leans badly, and he leaned so badly in the geri chair, he had to be straightened often and propped with pillows. 
He now has a fancy new chair, and it seems perfect for keeping him upright.  He seems more interactive and smiles more, too. I'm convinced that he feels much better because he can sit upright in a chair that fits him. He was able to get a new chair because he is now on hospice care, and they could foot the bill.  Medicaid nor Aetna would purchase the chair, and the nursing home was looking into buying one, but the wheels turn slowly on large purchases. We are most grateful for the chair.  (The photos below were taken moments apart.  He would not open his eyes for most of the idea why.)

Hospice is one of those trains I saw coming, but I thought it was further away. Sadly, the time has come. The physician's assistant who cares for Billy and sees him every Monday, feels the time has come for end of life care.  Only God knows the time that He will welcome Billy home, and until that time hospice will do all they can to make him comfortable.  The chair is certainly a big step toward his comfort. 

We are blessed that Billy knows us, and he communicates with his smile. He talks some, but his words are usually unintelligible. Once in a while, he says something that makes complete sense, and I love that. His smile is beautiful, and everyone around him loves to see it. 

Alzheimer's is cruel, but you already knew that. 

Another train has been barreling through with my mom's cancer. Since June, we've had to call 911 five of those in Galveston. All but one of those trips has led to Mom being admitted into the hospital, and her issues have all been related to complications from cancer and chemo. At her last chemo treatment (nine days ago), the nurse accessing her port missed it, and something was punctured.  Seven hours later, she was still bleeding from that wound and a trip the ER got it under control - finally. That represents our LAST visit to the North Hills ER because of the unprofessional behavior of the medical staff. Fortunately she was not admitted. She made it less than a week before another serious bleeding incident. She woke me on Labor Day morning very ill and had been experiencing a GI bleed for several hours. The paramedics know us well, and as they were loading her up, one asked what had happened with the bleed the week before. We asked them to take her to the new Texas Health hospital at Alliance, and after they evaluated her, they sent her to HEB Harris because most of her doctors practice there. After a few hours there, she was quickly moved to ICU because of uncontrolled bleeding. After four units of blood, two units of platelets, and 5 days in the the oncology unit, Mom was discharged yesterday.  She is very happy to be home. She has to be stronger to withstand the preparation for a colonoscopy, and she is not even close at this point. There is an urgency to find the source of the bleeding, so we are praying for her blood counts to stabilize and for her to gain strength. 

At this moment, Dad is doing about the same. He has days when he is more alert than others. I went to see him at lunch on Tuesday, and he was at a dining room table pushing Tonka trucks around. That made me sad. I usually end of laughing at some point when I visit him, though.  Patients with dementia do strange things, and you can either laugh about those things, or you can cry. Crying gives me a bad headache, so I try to choose laughter. 

Dad and Billy are on hospice. Mom is not on hospice, but she's feeling like her days of chemo treatment are over. Ending up in the hospital after each treatment is not her idea of a high quality of life.  

The prayers of our friends and family are felt, and we are so grateful for all of them. 

Sunday, August 3, 2014

Back to Reality

I just returned home from a fabulous Florida vacation!  My dear friend, Karen Fletcher, invited me months ago to join her and her family on this trip. When she asked me I told her I planned to go, and the only thing that might alter my decision would be a job change for me.  I know that God knew how much I needed to get away for a bit, and nothing stood in the way of my going.  I rested, read, ate wonderful seafood, soaked up too much sun, listened to the waves, parasailed and loved every single moment. I stayed in touch with home through phone calls and texts, and all was well until Thursday. 

The nursing home called me about Billy that afternoon, and he's struggling with chewing and swallowing meats.  He's been evaluated by the nursing staff, the OT and speech pathologist, and they recommend a mechanical diet where his meat is chopped very fine - not pureed but easier to chew and swallow.   He's been slightly dehydrated for about three weeks because he isn't drinking well.  He gets choked when drinking liquids (even thickened liquids), and then he won't take anymore fluids. Part of the issue is his posture which has changed drastically this summer. He cannot sit in a wheelchair anymore because he leans and falls out. He is now in a geriatric (geri) chair which supports him better, but he throws his head back and leans pretty badly. They prop him with pillows, but he doesn't stay that way for long. 

I went to feed him lunch today, and he was happy to see me when it finally registered who I was.  I have to get close to him and get his attention, and he smiles at me when he realizes who I am.  He eats pretty well, but getting him to drink is difficult. He usually falls asleep before he finishes a meal.  I believe he sleeps a great deal during the day and all night.  I was telling a friend about this today, and I shared with her that my head knows that all of this will happen, and I know the likely end of the story, but it hurts my heart to watch it.  Having been away for a week was wonderful but made the decline so much more real for me when I returned. 

I got another call late Thursday night that my mom was enroute to the hospital via ambulance.  My good friend, Rhonda, lives with Mom and me - Mom has dubbed us the Golden Girls!  Mom was able to get Rhonda's attention to let her know that she was struggling to breathe.  Mom has pneumonia that is getting better with antibiotics, possible congestive heart failure, chronic kidney disease, and as we already knew - cancer. I love that she has maintained her sense of humor through this most recent ordeal. That has carried our family through many trying times. I notice that as people age, they feel a certain freedom to express their feelings.  Mom has not hesitated to let the staff know what she does not like, and she can usually make them laugh while doing that. She hates the breathing treatments, and she thinks the respiratory therapists should go stand in the hall during her breathing treatments because their standing around gets on her nerves.  They don't allow her to shower because she's too weak, so they bring her these special body wipes that are supposed to get you just as clean as a shower.  She is not buying that either!  They suggest that she use them in the morning, and she doesn't want to do that, so she told them she would use them around mid-afternoon.  I believe she is improving and will hopefully be discharged Tuesday or Wednesday. She is questioning whether or not she will take any more chemo treatments, and I know we all support her choice - whatever it may be. 

My dad seems to be doing fairly well at the moment.  Praises for that!  Here is a sweet picture of my niece giving him a hug early today. 

Tomorrow I return to work.  I've had more time off this summer than I've had in about 15 years.  I am ready to get back to my schedule and my routine.  I love the folks I work with, and that makes it a pleasure to go each day. 

I am thankful for our blessings. I am thankful that I get to feed Billy and see his smile. I am grateful my mom is still here to make us laugh. I love that my dad can still enjoy his granddaughter's hugs.  Sometimes I get lost in the junk of life, but I know what is truly important, and I know that one day Billy will be himself again along with all of us in eternity.  

Sunday, July 20, 2014

So Much Has Happened Since Last I Wrote...

My last post was April 30th, and since that time the following events have occurred:

  • Billy was moved from the Memory Unit into a regular room in the nursing home in May.
  • He has had another grand mal seizure and many small ones, but the last few weeks seem to have been better. 
  • Dear friends from Midland visited, and he recognized them and enjoyed their visit.  
  • He had a birthday!  
  • He has made several short sentences that made sense, including "I love you."
  • My dad seems a bit better - more alert at times and more pleasant in nature. 
  • He is terribly thin but does eat.
  • My mom stopped breathing on June 8th. She had been experiencing extreme swelling in her legs and feet, wheezing when she was in bed, and she had asked her doctor about it.  He told her to keep her feet up and that her lungs sounded clear.   On the night this happened, I had gone to Summer Spectacular at our church with my sister and her family.  When we got to the house, Mom was struggling to breathe and we could hear fluid rattling with each breath. We called an ambulance, and it arrived in 6 minutes - the longest 6 minutes of my life - and about a minute before they arrived, Mom lost consciousness. On the way to the hospital, she stopped breathing and was intubated. She was placed on a ventilator and admitted into ICU.  When she was given Lasix she started turning around and got off the vent in three days.  After a week in the hospital and numerous tests, we know that her kidneys are functioning at about 40-50%. She was so much better except for the extreme fatigue when she went home, but they gave her nothing to handle the fluids that were to come. Hmmmm. 
  • While Mom was in the hospital her younger sister was put on Hospice. 
  • I went with Mom to her oncology visit after her recent scan which showed a slight growth in her two tumors and two lymph nodes they are watching. He told her there is one more chemo drug they can try to slow the growth of the cancer. There is no cure, and he asked if we had begun talking about end of life issues. Mom told him she wanted to take a break from treatment and make the decision after we took a short trip to the beach.  He felt that was a great idea. 
  • My Aunt Patricia, my mom's sister, died on June 30th.  She was diagnosed with the same cancer (ovarian) as Mom about a year and a half after Mom was.  Her system was already weakened by Parkinson's Disease, and after being declared cancer-free for a few months, the cancer returned with a vengeance. 
  • Last Sunday Mom, my sister and her family and I traveled to Galveston. We rented a  condo on the beach outside of town and enjoyed a nice day on the beach on Monday. We got Mom to the beach (very slowly with many breaks!), and on Tuesday we went into town for great seafood. Mom didn't feel like going to the beach that afternoon, so she rested.  She and I shared a room with twin beds, and around 12:30 after I had gone to bed, Mom woke me up in the same distress with her breathing as before - gasping, rattling, and panic. I got my sister and brother in law, she called 911, and I prayed over Mom. When the paramedics arrived, Mom was still conscious, and they put her on a CPAP machine to help her breathe. They allowed me to ride in the front of the ambulance, and I was much more at east than the time before.  She was taken to UTMB, an excellent teaching hospital with lots of unusual people outside the ER at 1:30 in the morning!  Once again, Lasix was started, she was taken for tests and xrays, and she was admitted to a regular room around 5:30 that morning. We were so pleased with the doctors who knew immediately what happened, and she improved so much that she was discharged that night at 7:00 with prescriptions in hand for Lasix. We came home on Thursday.

When we were kids my dad would tickle us or do something equally irritating until we yelled, "Calf rope!" or "Uncle!"  The point was to see how much we could endure before giving up.  I feel the need to yell out "Calf rope!" I've reached my limit. We get past one hurdle and another appears in front of us. I've talked more about death, dying, and funerals in the last few months than all the previous years in my life. My disdain for Alzheimer's Disease and cancer remains strong.  My faith in Jesus'  runs deep, and my knowledge that He is in control is firm. 

I am scheduled to leave town on Saturday with a dear friend for a real beach in Florida!  (No offense, Galvestonians!) I am praying that my family will remain without incident while I am having another go at a vacation!  After no vacation for quite some time, I never imagined I would have two trips in one summer, but I've been blessed.  I appreciate your prayers and support for our family.

Wednesday, April 30, 2014

So Much Can Happen In Less Than A Month

For quite sometime I would post every few weeks or every month, and the progression of this insidious disease was fairly slow.  Recently the progression seems to have increased rapidly like an avalanche that begins with a few falling rocks then picks up speed and crashes down.  In my last post I wrote about not being able to take Billy with me anymore because he cannot get in and out of the car. Soon after that he had several falls, and his balance was unsteady. The decision was made that he needed to be in a wheelchair for his own safety. I'm all for his safety, but I hate that he has to sit all day because he loves to walk.  

He doesn't seem to know that he can move the wheelchair on his own.  At the moment, they are using a chair that belongs to the nursing home, but I've noticed a need for foot rests that he doesn't have.  Occasionally he will lift his feet ever so slightly making pushing easier, but he usually resists a bit. Pulling the chair backwards makes it easier if one can walk well going backwards.  I have enough trouble walking forward, so that presents a challenge for me.  We make it work, though.  Billy gets help from the aides, and they all love him. 

As I was getting my head wrapped around the fact that Billy doesn't walk anymore, AD threw another rock at us.  On April 14th, Billy had a grand mal seizure around 4:00 in the morning. Fortunately an aide was in his room changing his roommate and heard the noise.  She got the the nurse right away, and the seizure lasted a little over 10 minutes. His oxygen level dropped significantly, but they were able to get him stabilized.  I had heard of another Early Onset AD victim who had seizures, but I never knew of others.  It doesn't seem that the staff at the nursing home has seen this with AD patients either. The PA saw him that day after the seizure, and she requested a neurologist consult. When I fed him dinner that night, he was exhausted and his lip drooped almost like a stroke victim.  The strangest thing to me was that his voice sounded different - lower and gravelly. 

Of course I began reading about AD and seizures.  Today I went with him to a neurologist.  I really liked the doctor, and he told me the same thing that I had read.  Fewer than 10% of AD victims have seizures in the late stages of the disease, and there is some thought that it is more prevalent in Early Onset folks. Of course Billy is in that small percentage.  Of all AD victims about 5% are early onset (under age 65).  I wonder if 10% of that 5% have seizures or if that percentage is higher in this group.  Billy has been on depakote (an anti-seizure drug) for almost 18 months because it helps with the behaviors related to AD. The doctor increased the dosage to try and prevent further seizures. I don't want him to be more "drugged" feeling and acting, but I certainly don't want him to have more seizures either.  So there we have the Billy update. 

Last Friday Mom, Leslie and I met with a chaplain and put Dad on Hospice. Dad is not a whole lot worse, but the staff felt that this would be better for him, and  I agree.  In one day, they got him a better wheelchair, and he has a few more people who visit him each week.  That is so important in this journey -- human contact with people who are not suffering from dementia!  Dad is so thin now; he weighs less than 140 pounds. He has some good days, and he has many not-so-good days. Mom hangs in there with him as much as possible, but she has her own battle with cancer.  She is on maintenance chemo right now.  She has a treatment each Tuesday (if her blood counts are high enough) for two weeks. She takes a break the third week.  However sometimes during that third week, she has blood transfusions like she did today. That way she can be ready for more chemo next Tuesday - hopefully. After her next two rounds of chemo, she will have another scan to see how well the tumors are being held at bay. This is her life now. She's tired all the time, but she's here with us, and we all vote that it's worth it.  But if the day comes when she says she's had enough, I think we will all understand that, too, but we are not ready. 

In spite of the daily struggles we face, we are blessed in so many ways.  A dear friend has moved in with us, and she is preparing meals and helping in all sorts of ways. We had our extended family at our house for Easter, and that was wonderful.  I work with fabulous people every day, and that is a huge blessing. We are prayed for each day by so many, and we know that because life is bearable right now. 

Thursday, April 3, 2014

The Big Decline Really Stinks

I began this post on March 18th, and then life got incredibly busy, and I got incredibly overwhelmed with everything. My heart is full, and I must write.  
It's time for me to face the truth. Billy is getting worse, and he's not okay.  I've ignored the truth for a while because it's just too hard to face, but sometimes truth slaps you in the face. I have been blessed for more than two years in being able to take him with me on Saturday evenings, and that ended about two months ago. My Pollyanna side keeps thinking that when it gets warmer and stays light for longer, I can take him with me again as though warmer temperatures and lighter skies will help him know how to get into the car again.  

For a while I would take him out of the memory unit and just walk the halls of the nursing home for a change of scenery. He doesn't want to leave that secure area now. The staff told me he gets upset when they come get him to weigh him each week.  

I usually arrive at the NH between 4:30 and 5:00 to feed Billy supper. The routine for the residents is to gather them all into the dining area of the unit beginning around 4:15.  It takes a while to get everyone changed and cleaned up for dinner.  Billy is nearly always sitting at the table watching TV when I get there, but today was different.  I got there around 4:35, and Billy was still fast asleep.  The evening staff had come on duty at 2:00, and he was already asleep, so they didn't know how long he had been in bed.  It takes two staff members to get him up and changed now because he struggles with balance.  After getting him ready for dinner, the aides got on either side of him and walked/drug him to the dining area. The scenario reminded me of two parents trying to walk their toddler while his feet go in uncontrolled directions, but he's a 57 year old man. 

The first few weeks of March, Billy had several falls hitting his head during most of them.  Several x-rays were done with no fractures noted, but the radiologist recommended a CT scan. The physician's assistant who sees residents each Monday at the NH noticed a significant decline in Billy's mobility and balance. Many of the big changes in Billy have taken place gradually, but this was rather sudden. He's been doing the slow shuffle for at least a year now, but he could stand on his own and walk. From what I understand he is a little more able to balance in the mornings, but as the day wears on, he cannot get out of bed alone, and he cannot stand.  Two people get him up and change him, and then they place him in a wheel chair. 

Last Friday when I got there, he was in the shower.  Our favorite aide, Lameka, was showering him.  She rarely works in the memory unit anymore, so she had not seen Billy in a few weeks. I waited on her to get him dressed, and she came out of the shower to get help standing him up.  She looked at me and said, "I had no idea he couldn't get up or stand anymore!"  I told her the change had been rather sudden to us.  The good news is that he still seems happy. He smiles often and enjoys our visits. 

I've been debating the whole CT scan event. He has to be taken to a hospital to have it done, and I can no longer transport him, so the NH could take care of that. When the doctor reviewed the orders from the PA, he questioned Billy's ability to lie still during the test. I asked the purpose of the scan, and it seems that they are looking for a cause of this big decline. They've done the usual tests - no UTI and no imbalance due to meds.  The scan would show any masses, any strokes, or anything more abnormal than the atrophy he has from the Alzheimer's Disease. The scan would also involve a large co-pay that would be difficult for me right now. I made the decision today that I will not consent to the test right now. If the test were to show something in addition to AD, what would I do? I have no desire to inflict pain or anxiety on Billy.  Just the trip to the hospital would most likely cause him anxiety.  If the scan were to show a mass, I would not choose any radical treatment for him.  A stroke? What would be done for that? More meds most likely. 

I've wondered if the medical professionals at the NH are just unfamiliar with early onset AD. I usually assume that new behaviors are just an indication of the progression of the disease. I appreciate the concern and the desire to know, but how would that change things? As I write this I hear myself sounding a bit like I don't care, and of course I care a great deal. I know that when Billy was still articulate, he made it clear how much he hated enduring all the tests and questions; and he would be more anxious and nervous than ever being taken to the hospital and being told to be still for 30 minutes which he would not understand. 

Did I make the right decision?  I feel okay about it, and I'm at peace. That may change tomorrow, and if it does, I am pretty certain we can have the scan done. 

So there you have it....I'm so sad that I can't pick him up on Saturday afternoons and take him with me. In order to take him into the courtyard, he has to be put into a wheelchair, and that involves catching 2 aides who can assist. I'm hopeful that he can come home for Easter day using a transport system, but I'm unsure of that at this point.  We trudge on. 

Stinkin' Alzheimer's!

Sunday, February 16, 2014

What Keeps Us Going....and what gets us down

The  most asked question I receive is always appreciated and really difficult to answer. I'm happy that people ask about the most important person in my life, but I don't always know what to say.  The truth is that he is about the same he has been for the past few months, but in comparison to the last year, he's declined considerably. When I think about the last two years, he's gone down drastically. At times, his condition can really get me down. 

I've mentioned before how difficult it is to get Billy in the car, and about three weeks ago, he got so frustrated that I decided to stop taking him away from the nursing home for a while. I will reassess when we return to Daylight Savings Time and the weather is warmer. Those two things may not help, but he gets more confused when it's dark, and the cold hasn't helped any of us. I'm aware that I probably get more from taking him with me than he does, but I know he enjoys being with family and seeing friends. Unfortunately, if I don't take him out, he won't see most of those folks. Going to the nursing home is difficult for people, and I was one of those people for a long time. I do not criticize anyone for not going because it's not overly pleasant, and Billy communicates very little. He does love seeing family and friends, though, and we can tell that by his smile and expressions. Sometimes he will say something that we don't recognize, but he tries to communicate. 

Yesterday, he had a fall. He's fallen a few times before when he was trying to sit down and missed the chair, but this time was different. He was walking down the hall, and leaned over to pick up a "Wet Floor" sign.  He lost his balance and hit the back of his head on the hand rail that runs down the hall. As he tried to get up he fell again, and hit his head on the floor. He has no fractures, and I assumed he would not. Billy has youth on his side where falls are concerned, but the fact that he lost his footing while doing something very simple signals another decline. He may not fall again for months, or he may begin falling often. Alzheimer's progression is not always predictable, but what I notice among the residents is that when falls become the norm, the resident ends up in a wheel chair. I am not ready for him to move to a more restricted mobility. Of course, I'm sure that my lack of readiness will keep it at bay!  

Billy can do very little for himself at this point, and walking, albeit very slow, is one of his few independent activities. He needs help getting up, sitting down, eating, drinking, dressing, bathing, and toileting.  The medical world calls these daily living activities.  He is slim on independence with those activities. 

So those things really get me down, but we have some wonderful glimpses of the old Billy that get us through and keep us going. One of the last times I took Billy to church with me, he was sitting between Shelley and me. He tires pretty easily, and we stand for quite a while at the beginning of our worship service. Shelley sat down with him, and when I glanced back at them, he was leaning toward Shelley like he wanted to tell her something.  As she leaned toward him, he kissed her on her cheek. He will always love his girl, and such a small sweet gesture brought tears to her eyes. A week or so later, Shelley was helping get him in the car (the big challenge), and after she buckled him in, she kissed him and told him she loved him. He responded loud and clear with, "I love you." He doesn't say much at all anymore, and that was huge. 

When I go see him in the evenings, and he realizes I am there, he gives me a huge smile. Once in a while, he even says some little something, and I'm thrilled. Sometimes I get there early enough that he is still in bed. I don't know if I will ever get accustomed to him being in bed so much of the afternoon, but when I go in his room, he is often already awake, but they have not gotten him up. I sit down beside him, and he grabs my hand.  

The small things get us through. The smiles, the incoherent mutterings, the gentle kisses, and the touch. I will never take those for granted. 

So, how do I answer the is Billy? The best I can tell is that Billy is happy. Not knowing how far his disease has progressed is a good thing for Billy. When he knew where he was headed, he was frustrated and angry. He gets frustrated at times now, but typically, he's happy. His smile gets me through, and I often tell people he's okay...not good, but he's okay. I think that most people get it.