How Are We Doing?

I had dinner with a friend last weekend. We talk periodically but not as often as we once did, so we always have to play catch-up. She asked how Billy is doing, and I gave her my short answer - about the same. Steady decline but no big dips lately. Then she asked how I am, and I told her I'm fine. She looked at me and said, "How are you really? How do you cope with this all the time?" She's been caring for her sister-in-law who is showing big signs of dementia, and she knows some of the stress involved. 

The truth is that I do pretty well nearly all of the time. I don't take credit for it because it's the constant prayers of so many who pray when I'm prayed out. I'm like many of us - I know that I can give all of this to God, and I still try to handle things on my own. There are times, though, that it all gets to me. I had some time to myself this weekend, and I made a mental list of things I miss about my husband. We were like most couples who spend over 25 years together. Some things he did made me nuts, and I feel certain I got on his last nerve at times, but most of all, we enjoyed being together. I miss the easiness of being together. I miss the companionship. During the summer time, couples are taking trips together. We looked forward to our empty nest and having time and maybe more money to travel. Billy felt the continental US had plenty of places to visit, and I agreed. I still like to go places, but I so wish I could share the experience with him. 

I also miss his sense of humor. Billy made me laugh for our entire relationship, and sometimes he still does. He was witty and smart and he could not help himself if he had something funny to say - he had to say it. He cracked himself up! He loved to trade barbs with our brother-in-law, Shawn. 

I miss his mini-lessons on history. That was another thing he couldn't hold back on...if he thought I didn't know something, he had to share it with me or quiz me on it. Every trip we took as a family turned into a lesson about US history in some way. In spite of their complaints, I believe Shelley and Andrew loved it. 

I miss sharing my bed with him - the intimacy of sleeping with someone for 30 years goes way beyond sex. When he would go on a trip, I didn't sleep that well. I missed his breathing. After we moved him into the nursing home, sleeping was harder. I'm accustomed to sleeping alone now, but it's not the same. 

So, I had a pity party the other night, and then I got up the next morning, thought about the all the blessings I have, looked at my puffy eyes (another reason I don't do pity parties too often), and I got back on track. I am thankful to still have Billy here with us. He knows his family and friends even if he doesn't talk. His smile and expressions show that he knows. He laughs readily still. We don't always know why he's laughing, but that's okay. He still hugs us and kisses us, and he makes eye contact. All of those are good things. I also know how blessed I am to have been married to the person I love and who loves me.  Some people don't even like their spouse, and some caregivers are trapped taking care of a spouse that did not treat them well.  I am honored to be the one who cares for Billy. God has known our whole lives how this would work out, and He helped prepare me for that. 

Philippians 4:13  I can do all this through Him who gives me strength. 

The Inevitable

My thumb was in the way, but I couldn't resist the smile!

"I know three people who have got better after brain tumors. I haven't heard of anybody who's got better after Alzheimer's."  Terry Pratchett

When I stay away from visiting Billy for too many days, I struggle with my emotions when I see him again. I don't stay away long, but even several days does it. Not certain why that is, but when I went to see him on Tuesday evening, I had not been for about a week.  I had some surgery last week, and I've not felt like getting out, so I missed him.  For so long the norm for us was that I would show up about 4:45 because he eats at 5:00.  He would meet me about half way down the hall and say something like, "It's about time you got here." Always with a smile.  He was always walking and up. I wondered if I would ever come in and catch him sitting. 

I'm not certain when things changed so drastically. I still arrive at about the same time, and Beverly, one of the residents always sees me first. She reaches out, grabs my hand, and tells me how glad she is to see me - sometimes with tears. I glance around and Billy is sitting at a table, usually with his head down. Tuesday he had about three pages from a People magazine that he was folding and shuffling.  I didn't expect the emotional drop I had. He's been this way, and I've seen it, but somehow several days away, and his condition astounds me.  He sits like he's much older than his 57 years, and he does not jump up to come greet me.  In fact, I don't think he recognizes me until I go over to him and speak.  I pulled up a  chair and asked him a few questions.  He never answered, but he looked at me. By the end of his supper, he was more aware of my presence, especially since I'm the hand that feeds him! I just can't remember when he made the turn. It was gradual, but I've noticed that when a skill is missing one day, it soon becomes the norm. For a while, we helped him eat by just putting food on his fork, and he would pick it up and eat it. Now, you have to take that food to his mouth. 

The memory unit remains a happening place. It seems they make changes daily, and I'm glad they look carefully at it. The unit has 18 beds, and when Billy arrived, they had 18 residents. Of those 18, five remain in the unit, including him. Too many have passed away. Several have been moved out of the unit because they are no longer mobile and at risk to wander. It seems they have new folks almost weekly because there is no shortage of dementia victims. The most recent person to move out of the unit is Donnis.  I'm not certain that he has Alzheimer's because he was much more aware than the other residents. His needs seemed to be more physical, and he is quite territorial and loud. The residents in the unit wander from room to room. They may recognize their room, but they may not.  It's not unusual to find one of them asleep in another's room, but if one got close to the door of Donnis' room, everyone knew it.  He was a career military man and must have been a drill sergeant!  His voice booms.  He does not want anyone touching his stuff, and one day last week, he was waiting for his shower and had put his clean clothes on a chair outside the shower room. Billy wandered along and picked up Donnis' shirt - another common thing that dementia persons do.  They are a bit like toddlers, picking up and observing and playing with things.  Donnis began yelling at Billy (he doesn't do well with yelling) and grabbing the shirt. Billy got a death grip on the shirt and pushed.  Then Donnis scratched Billy, and Billy scratched Donnis.  Not a pretty sight. I always know when I see Lexington Place on my caller id that he has had some sort of incident and probably has a scratch.  This was not the first incident between Donnis and Billy, and I was told they were having a care meeting to find a solution. I like the solution. 

With several residents being moved out, the unit now has several newbies. My favorite is Hazel whom I met on Tuesday.  While I was feeding Billy, Hazel was another table over and said, "Bill. Bill! You said you were going to take me home." Bill(y) did not respond. One of the aides told Hazel that I was Billy's wife.  "I told you he has a wife, and here she is!" Hazel looked at me so sincerely, and said, "I'm so sorry.  I didn't know he was married." I assured Hazel that I was not offended in any way. The next evening, Hazel joined Billy and me while I fed Billy. What a delightful lady! She is not as far along in the disease as Billy, and she can carry on a conversation very well.   She mentioned numerous times that if it doesn't quiet down there (the unit), she is going to have to quit that school and go back home.  (I mentioned Beverly above, and she makes so much noise before dinner. She sort of hums, moans, and sings all in a smoker's rattle at a volume that matches Donnis'. It is beyond annoying, but like everyone else there, she doesn't do it for that purpose.) Hazel told me during our meal that she and Bill(y) went together a while back, and she really liked his family. She looked at me very seriously and said, "You are a lucky lady." I certainly agree. She turned to Billy then to tell him how lucky he is to have me. He smiled which we all know means he agrees! Once again Hazel reiterated how lucky I am to have him, and then she said, "I'm pretty lucky, too.  I have a good looking man at home.  His name is Glenn." I look forward to meeting Glenn, and I really hope Glenn is still around.  So many times, they talk about their relatives in present tense and I learn that they passed away 5 years ago. I have a feeling I'll be sharing Hazel stories for a while, and I pray she stays in the unit for a long time. 

Thank you for reading, praying, and encouraging through this blog and in many other ways.  Alzheimer's is a thief; it is always fatal; and at this time there is no cure. It's time to END ALZ! 

Peace and love. 

Dearest Blog....I have neglected you for low these many weeks.  I should have written many times, but something stopped me. When our son, Andrew, was a child he would go somewhere for several hours or for an overnight visit, and when he came home we would ask what all he had done.  His usual reply was, "Mom, it's just too much to tell." That is how I feel right now. I have too much to tell, so instead of playing catch-up, I will share the here and now and very recent past. Then over the next several posts, I will share some of the highlights and lowlights of the weeks between early May and now.

How is Billy doing?  My usual answer is "about the same"....but that really depends on the last time I've talked to that person or written. I notice changes in Billy in increments of months. He has been about the same for the last 4-5 months. His weight has stabilized at a good number - 180 pounds give or take a few. His lowest weight was about 165, and he didn't look healthy at that weight. With the weight he lost, he lost a good deal of muscle mass. He eats well if he is fed. He is physically able to feed himself, but he will not finish a meal on his own, and he doesn't mind being fed. If we put a bite on his fork, and sit it down on the plate, he can get the food to his mouth. That takes so long, that I prefer to feed him. I go most evenings to feed him and visit, but I take Sundays off. On Saturdays I pick him up and take him to our Saturday evening service at church.  He enjoys being with us, and his behavior has not been too disruptive to do that. Afterwards we have dinner out with family or friends. I usually have him back to the nursing home by 8:00, and he's ready to get back.

Billy's balance and mobility are noticeably shaky. He sort of does the old man shuffle, moving so slowly that the only way he could be slower would be to stand still. His perception is way off, and he struggles with stepping up on curbs. He steps off of them a bit easier, but I hang on to him so he doesn't fall. It seems his depth perception is off, too, and that may have something to do with him not bothering to eat.  When he starts to take a drink, he gets his lips ready for a sip long before the cup reaches his mouth, and as soon as his lip feels it, he knows to take a drink.

One of the hardest things to grow accustomed to is his silence. Billy has always been a talker and a cut-up, and he got tickled easily.  I so miss his laughter. I can remember so many nights when I would go to bed earlier than he and I would hear him guffaw at David Lettermen. It usually made me laugh because he enjoyed it so much.  He talks so little now, and when he does speak, it makes little sense.  Some of his sentences are made up of only nonsense words, but usually they start with sensible words in the correct order and turn into nonsense.  I haven't decided if the nonsense words are usually nouns or adjectives, but he usually gets the verbs correct. When I picked him up tonight, he said, "I like your schlactallack." Or something like that. His mom did the same thing...she used a lot of alliterative nonsense words at the ends of her sentences. He also blurts out complete sentences that make sense, too. Last week, we were having dinner with family, and my nephew got up from the table. Billy looked at him and said, "Where are YOU going?" It surprised all of us. One thing he still says with clarity is "I love you." He doesn't always say it without prompting, but he gets those words correct.

For the most part, Billy has many more good days than bad days. He's pleasant and everyone I talk to at the nursing home comments on his good nature.  One of the other residents who is much more aware than most of the others often tells me that "he's nice." He does get agitated at times, and he doesn't know how to express that, so he has hit at staff members before. On Fathers Day, we took him and my dad to a restaurant for dinner. They had rolls of paper towels in the middle of the tables in very heavy holders. Billy decided to pick up one and squeeze it, and Shelley tried to take it from him. He tightened his grip, and started to tuck it under his arm like a football!  I finally convinced Shelley that it was not a life or death issue, and he was not using it as a weapon. A few minutes later, he released the paper towel holder.  Like most of the residents in the memory unit, Billy's actions are toddler-like. He picks up things he should not like trash. He reaches for other's food or drink. That is the reason units like this can look so sterile and barren....no lamps, pictures on walls, or items sitting around. I love that the unit at this nursing home has fabulous murals throughout that are realistic and homey.

My hope and prayer is that we can keep Billy at this point for a a long while. I've noticed a practice at the nursing home that as residents become less mobile and are not able to wander out of the the residence, they are moved out to the main area. I've learned from some more experienced caregivers, though, that if I don't agree to do that, they won't move him. I want him to stay where he is because he is accustomed to it. He has a routine and the staff to resident ratio is lower, so he gets more attention.

I plan to write more frequently this summer. I have more time right now as I'm off for a few weeks. I remain faithful and give God the glory for giving me strength to face all things with peace and courage.

Renewal

"...and He will wipe away every tear from their eyes; and there will no longer be any death;there will no longer be any mourning, or crying, or pain; the first things have passed away.  And He who sits on the throne said, 'Behold, I am making all things new.' And He said, 'Write, for these words are faithful and true.'" Revelation 21:4-5

The last several weeks have been tough for lots of reasons.  I've not written since mid-March because I've been busy, distracted, sad, angry, worried, lazy, depressed, exhausted or not in the mood. But I'm a joyful person. I'm optimistic and strong. I'm stubborn and tenacious. However, I sometimes reach a limit of what I can handle, and the last several weeks have exceeded my limit. 

Billy is about the same...maybe slower and not as steady on his feet, but he's still walking, talking very little (but talking), smiling, and recognizing those closest to him. I see him five or six times a week when I feed him supper at 5:00 in the evening. I take him to church on Saturday evening, and we go to dinner with friends or family afterwards. Most days I visit, I leave with a smile and a warm heart, but if I allow myself to look at him and think about our relationship now, I get sad and teary-eyed immediately. I sit there beside him, and I just long to talk to him about my day or about my parents or about some silly thing that bothers me. It makes my heart hurt to see him walk so slowly, to watch his hand shake as he tries to get a bite of food in his mouth. 

My stress level has been much higher recently due to all that goes with the operation of school in the spring, but this entire year has been more difficult than usual. As a campus, and as an administrator, we've had an unusual amount of issues. Some have stunned me. Some have disgusted me. All have exhausted me. 

This past fall my daughter and son-in-law moved in with me. It helped them and me financially, and after several months we decided it worked out well enough that we plan to continue the arrangement for a while. We also decided we could use a house with one more bedroom, and it so happened that our landlord (great guy) had one coming available. So during the busiest time of the school year, we decided to move to another house. I don't know what I was thinking at that time, but at some point in a few months, I'm sure I'll be happy that we did it. At the moment, I am looking at my room with boxes lining the blank walls and wishing I had labeled said boxes better. I need to locate my clock radio. 

My sister and I have taken turns shuttling my mom (with Dad joining us) back and forth to doctor's appointments. She's doing well and getting stronger each day. She has a scan in the next few weeks, and she and the oncologist will determine together if she will undergo more chemo. We pray she will not need it. A few months ago, my Aunt Pat, Mom's younger sister, was having severe pain in her lower abdomen. My uncle took her to the ER, and by that evening, she had a diagnosis of ovarian cancer...on the same side and in the same area as my mom's cancer. The tumor was pressing against her ureter (just as Mom's had), and her kidney was not functioning properly (like Mom). The two differences for my aunt are that her cancer is more advanced, and she has the complication of Parkinson's Disease. She began chemo before even leaving the hospital. It's been very difficult on her, and after her first round, she ended up back in the hospital. Please keep Aunt Pat in your prayers. I hate cancer and Alzheimer's. 

So far the theme of this post has not followed my title, and this is where I tell you that God has never let go of me in all of this. I have been blessed over and over. When we moved out of the other house, four beautiful ladies in my small group from church took on the task of cleaning the house...not an enviable job. Last week, after we had just completed the moving of stuff from one house to the other, I received a call from a dear friend in Midland where we lived for almost 20 years before moving back to this area. She told me that she and two other sweet friends were coming to see me the next day. She missed me, knew we had just moved and would come help me with unpacking. I was thrilled to see them. They arrived on Monday evening, and after we had eaten dinner, she handed me a newspaper clipping and wanted me to read the ad another friend had written for a garage sale they all had together. I thought it a bit odd, but we've done stranger things. The ad was pretty typical of garage sale ads until the end where it said that all proceeds would go to a friend with Alzheimer's. It seems that the life group Billy and I were a part of for many years wanted to do something to help us. They knew I still had a hefty bill at the nursing home to take care of along with Billy's dental bills. Many people donated items to the garage sale and others just donated money. I'm still amazed at the goodness of so many of my brothers and sisters in Christ. We received enough money to take care of the nursing home in full and pay most of the dental bill. Have you ever been so grateful that you don't even know how to properly thank someone?  I am at a loss for words...not a frequent problem for me. While they were here, they paid a visit to Billy, and he was obviously thrilled. 

Another huge blessing has been the worship time I've shared with Billy and our friends and family. We've been studying Revelation the last several weeks, and when we came to Chapter 21, and our minister honed in on the promise from God that heaven will be a glorious place with constant praise and worship. But the best part of that chapter to me is that we will be made new. Billy will be his best non-Alzheimer's self. No more tears. No more pain. Lord, come quickly. 

It's time for a renewal of my spirit and my attitude. I have allowed what goes on around me to determine my actions and my outlook. Will I still get sad about Billy?  Of course. Will bad things still happen to those I love?  Yep. But I choose hope, and I choose to stand on the promises of God. 

Watches, Pocketknives, and Random Sparks of Memory

I've been in the center of a giant whirlwind over the last several weeks...maybe months, but in particular the last few weeks have left me spent - physically, mentally, and emotionally. 

School has offered a number of challenges - even more than usual. I have a theory that when you put over 1,000 fifth and sixth graders in a building, and each of them has one parent but many have multiple step parents, fathers of the week, and grandparents, issues will arise. Add to that 100 teachers and support staff, and you might have a few more issues. This year is number 32 for me in public education, and some might think I should have it down by now - this administration stuff. However, I can assure you that there is no prep course or primer for some of the things that arise, but as Hooper often says, I digress. 

My mom is finally out of the hospital and rehab, and now we have appointment after appointment to follow up with three surgeons, one cardiologist, and the primary care physician. My sister and I try to split the doctors' visits, but it is so difficult for her to get away from work and drive the hour commute back to my parents. I do love the time I have with my parents. I do hate the drive between Fort Worth and Dallas. 

In the midst of Mom's medical issues, when we were exhausted beyond what we thought was possible, my sister mentioned that we should get away over Spring Break.  She and her family had rented a house on the beach in Galveston a few years ago, and we put our shekels together to go for four wonderful days back to the beach! It was the best thing I've done for my mental state in a long time. I spent hours on the balcony reading and napping. On Wednesday, we returned to the real world of all the things we want to do during Spring Break.  One of my aspirations was to clean out my very large closet that I could scarcely step into. It was clean and organized last August, then life got crazier, Shelley and Andrew moved in, and I put more and more stuff in my closet. I started on Friday night. I'm still working on it. 

I also felt the urge to clean out the bedside table drawers that had always been on Billy's side of the bed. The inventory in those two drawers include the list below; it is not an exhaustive list....just some of the items. 

• 3 watches - none working
• 1 old pocketwatch
• 5 pocket knives of various sizes and brands
• 1 letter from Shelley to her dad (made me teary)
• numerous CDs including The Mighty Mighty Boss Tones and Classic Old Time Music from the Smithsonian Folkways Recordings
• 1 claw massage thing
• 1 cassette tape of Smokey Robinson & the Miracles (we have not owned a cassette player in 10 years at least)
• 1 pair of Coke bottle lens glasses from late 80s-early 90s
• 1 unopened box of Pinnacle Gold golf balls
• his worn leather checkbook with pictures
• 3 combs 
• his wallet
• a few snapshots

Every item I pulled out of that drawer brought me a memory - very pleasant memories for the most part, and what a blessing that was and is. Billy always had a "thing" about watches.  He hated to be without one, and he liked having more than one.  He treasured his granddad's pocket watch, and kept it close by. He also enjoyed pocket knives. According to him, a man should never be without one. He used his for everything from cutting away the bark of a pitiful looking tree to check for any life to slicing apples. The man loves apples, and as his dementia worsened, he would devour 4 to 6 apples a day and swear he'd only had one!

He's always enjoyed a wide range of musical genre, so it was no surprise to find the CDs and the rather useless cassette tape. I am surprised that a Bob Wills tape didn't show up, but I'm sure several will be found as I go through stuff. Billy (BJ) as so many know him, was in a Western Swing band in college.  They cleverly named it the Bob Wills Band, and they had some interesting gigs!  He LOVED singing with that band. No Grammys were awarded to the Bob Wills Band, but a bond was forged that remains 30+ years later. BWISTK!

I really enjoyed looking at the pictures he carried of his family. He carried all his favorites of the kids. As so many parents do, he had more pictures of child number one - Shelley! He's carried the same photos for years, and you can tell by the condition of them. 

Shelley - from very young to teenage. 

Andrew - most baby pictures made of Drew included his sister! Such a handsome young man he became. 

He carried only one picture of me, and it was from the first summer after we began dating.  He went off to sell Bibles in the Carolinas, and we missed each other terribly. I had these pictures made for him (gotta dig the faux country background), and I certainly didn't know he would carry this around forever.  I was 19 and absolutely crazy about BJ Knowles.  It was a very long summer. 

In 1976, I met and fell in love with Billy Jack Knowles. We were very young and even more immature. Five years later, we stood before family and friends and promised to love and cherish each other for the rest of our lives.  We had no idea what the future would hold, but I am positive that if I knew then what I know now, I would do it over again. I love and respect him more than ever as he became the best husband, father, son, uncle, and friend anyone would want. 

"Take care of your memories for you cannot relive them. "  Bob Dylan

Praise and Thanksgiving

When I posted my last blog, I received many comments through Facebook, email, and this blog assuring me that prayers were going up for Billy and all of us who care for him.  I posted on February 27th, and God answered my prayers on February 28th. When I went to feed Billy the evening of the 28th, he was a different person. He was responsive and smiled easily, and he told me he loved me. What a huge blessing! 



 

The next evening was even better. I spoke with the evening nurse who told me they increased his Seroquel and changed the Xanax to prn.  He always seems to "need" it more on the weekends. I'm not certain if his behavior is off on the weekends or if the expectations are different.

 

I was able to pick him yesterday afternoon and take him to our Saturday evening service at church.  It went well, and for the first time since the holidays, I took him home for a few hours for dinner and time with family.  He was in a great mood, and as soon as he walked in, he began petting his dog, Bailey, and said, "There she is!" I love this photo that my son-in-law, Andrew took.  He loves his dog!

 



 

 

I never doubt that God hears our prayers and answers them, but I don't always get his answer so quickly.  Praise Jesus for interceding and putting my mind at ease. I am not naive about Alzheimer's Disease, and I know the future for Billy unless God provides a miracle, but oh how relieved I am that I am not facing a more declined mental state at this time. I am always so grateful for your prayers.

 

 

My stress level was relieved tremendously this weekend. Billy was happy, Mom went home from rehab and is doing beautifully, and I will sleep in my own bed for the week. 

The Roller Coaster Continues

I should be getting my beauty sleep at this moment...or at least my survival sleep. But I find it necessary to write. Writing is therapy for me, and at this time in my life, it's less expensive than seeing the counselor! 

During the last few years of my life, stress has become routine, and while I don't know that I thrive on it, I seem to hold up well under the pressure. The last 6 weeks have almost done me in...and I'm not alone. Our entire family has been a bit stressed. In addition to the "usual" stress of a spouse with Alzheimer's, we've had an additional stress with the health of our parents. My sister, Leslie, and I were thrilled to move them into an assisted living apartment back in November. Mom has been battling cancer for about 18 months, and Dad has Lewybody Disease. His needs were becoming difficult for Mom to handle, and the responsibility of everything for Mom was really rough. Chemo is tough and with each phase of it, it seems to become even rougher. It also was not curing the cancer or even keeping it at bay, so after much concern and thorough research, it was determined that the best thing to do was remove the tumor surgically. We knew it was a complicated surgery with a lengthy recovery, but no one knew how complicated it would be, nor how many complications Mom would face. She withstood a 10 hour surgery on January 16th, stayed in the hospital for two weeks, and has been in a rehab hospital since then. She may get to go home this weekend!  We are hopeful.

Back to the stress part. Mom's surgery was in Dallas about an hour from where we all live. Our routine during her hospital stay was work all day, pick up Dad from their apartment where a caregiver had stayed with him during the day, and drive to Methodist Hospital in Dallas. Visit Mom for a few hours, take Dad back and spend the night with him. We are not comfortable leaving him alone, and he's not comfortable being alone. He still doesn't think of the apartment as home. Sometimes when we drive up, he says he hopes they have a vacancy for the night, or he asks if this is where he will live for the night.  The next day, whoever stays with Dad gets up, and starts the entire process again. After two weeks, Mom was able to move to a rehab facility that is blocks away from their apartment.  My stress lessened a bit because I no longer drove to Dallas several times per week. Mom has had numerous infections and a few setbacks, but we see great progress.

Now my routine is to work until about 4:00. Go pick up Dad from the apartment, take him to the rehab to see Mom. I leave him there and drive to the nursing home to feed Billy dinner, leave when he's eaten, go get fastfood for Dad and me, then return to the rehab place. On top of this, work has been crazy. I could write a few hundred pages about it, but I'll spare you all! My great comfort during high stress is FOOD! I'm not ready to face the music (or the groan) of the scales, but I know my clothes are feeling a bit stretched.

I have missed being able to see Billy each day. I know he will be fed, but I also know how short staffed they are, and I like feeding Billy. It's odd how he has to be fed because he has no trouble chewing and no noticeable choking, but if we don't feed him, he just sits there and might take a few bites but he ignores his food. It's difficult for him to get the food on his utensil and get it to his mouth. 

He had a pretty long streak of being fairly happy, alert, and compliant. That stopped a few weeks ago. The evening nurse from weekdays called to tell me that he was walking very differently and nearly falling. He was agitated and combative. The nurse wanted to speak with the psych nurse and see what could be done. I had also noticed his walking was even slower than before and not completely steady, but I didn't worry much about him falling and attributed it to the progression of AD.  The medical staff determined they would try to switch out the Ativan he was taking and give him Xanax. At first, it seemed to help a bit. A few days after he had been taking the Xanax, he used more complete sentences than he had been, and his wit was back. I went to pick him up on a Saturday afternoon, and as we were leaving one of the nurses told him she had not given permission for him to leave. She teases him often. He looked at her, and without missing a beat, he said, "We can go anywhere we want to go." I could even see the twinkle in his eyes. 

By the next Saturday, he had changed drastically. I got a call from the weekend nurse telling me that he was bent forward while walking, and they were very concerned about him falling. He refused assitance and tried to hit a few people. He also refused his meds and would NOT take them. The nurse asked if I would come early and see if I could help settle him. With the traffic in our area, it takes me at least 30 minutes to get to him, and when I walked in, I did not see him walking the hallway. I walked by his room and could see his feet on the bed. When I went in to see him, he was sleeping hard. In over a year, I've only see him on the bed 3 or 4 times. He does not nap, but they had calmed him enough to get some meds down him, and I decided he needed to sleep more than he needed to go with me. I received another call yesterday from the evening nurse, and it was almost the same call I got the previous Saturday....walking and pacing unsteadily and very combative. He had to take meds in order to eat. Today, I went to feed him, and he was calm and glazed. I hate glazed. I feel sure it's a mixture of the disease and the meds.

I usually hold it all together pretty well. Tonight was not one of those times. The tears were about to roll, so I told Billy it was time for me to go. He did walk down the hall with me after a bit of coaxing, and he offered a smile as I left. But I still went the restroom to cry.

This photo was taken on Valentine's Day just 13 days ago.  His eyes were brighter, and his smile was wonderful.

 

The video was taken this evening. He's not with me.

 

My hope and prayer is that tomorrow I will see Billy, and Billy will see me. I am so thankful I get to see this man any day, and I'm double thankful when he sees me. I hate this disease.