Sunday, January 29, 2012


"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."  2 Corinthians 4:17

Alzheimer's Disease is not eternal, but while we walk on this earth, it feels that way. No cure, no real treatment, and it's a trial and error method on what manages the behaviors. The promise that this is all temporary gives us wonderful hope. Billy will be Billy again someday - wholly. Until then, we survive, and we look for joy in whatever way we can see it. 

Things have moved very quickly since my last post. Two people from the nursing home came to do an assessment one afternoon, and Billy was in quite a mood. I had picked him up early from the Cottage to take him to the doctor that day at 1:00, and from the time we left the doctor's office, Billy was anxious. His sundowning began about then, and when the ladies arrived to do the assessment, he was in no mood to answer questions. He did answer their questions finally, and he got a few of them correct. It was obvious early on that it is appropriate for him to be placed in their facility. I had thought I would move him at the end of January, but as things fell into place, I decided we might as well make the move sooner rather than later. Sometimes, it's best to just rip off the bandaid rather than pulling off a small amount at a time. 

Monday, the 23rd was my birthday, and I will always remember my 54th birthday as the day I prepared to move Billy into a residential facility. The term facility sounds cold to me, but the dictionary defines it as a place built to serve a particular purpose. Billy now resides in the Lexington Place, but I prefer to think that he's at Alzheimer's Camp. Getting his things ready for the Lexington Place was like preparing him for camp.  I labeled all of his clothes, gathered his toiletries, and packed up his medications. I enlisted the help of my brother-in-law to move a familiar chest of drawers into his room along with an extra television. A friend made a special quilt for his bed, and I hung familiar pictures on the walls around his bed.  I told Billy none of this. I didn't know how to prepare him. He understands the words I'm saying, but he is unable to reason. It's similar to telling a child that something very unpleasant is for his own good. They don't care that it's for their own good....they just know they don't want the unpleasant something. 

The next day after my birthday, Billy, Shelley, and I went to have breakfast together. I don't know why I thought we needed to have breakfast together. Did I think a big carb meal would make us all feel better? It did not. When Billy senses the end of an activity (like a meal), he wants to know what we are doing next.  His default is to ask what time we go to church. As he approached the last few bites of his waffle, he asked me what time church service started. I told him we were not going to church, but Shelley and I were going to take him to a new place. Where? he wanted to know. I proceeded to explain that he would no longer be going to the Cottage, but he was going to a new place where he would have his own room. The lightbulb came on for him, and he said, I know what you're doing! And I'm not going. From there, it went downhill. He was angry, hurt, and he really didn't want to hear the reasons it would be best for him and for me. 

As we drove to the place (I've replaced "the Cottage" with "the place"), he kept telling me he had been there before and knew he didn't like it. When we pulled into the parking lot, he asked where we were, and he reiterated that he didn't want to do this. Then he changed to "please don't make me do this." That was really difficult to take, and I cried most of the time we were there initially. We met with the director of nursing first to go over all of his meds. She's a nice person, and she tried to help, but she is not a warm and fuzzy person. After I signed the ream of papers she put before me, she said, "Let's go look at the unit." Unit is not an endearing term to describe where a person is going to live unless it's an apartment, so I will refer to it as the area.  I left Shelley to help Billy settle in a bit while I went to fill out paperwork.  A while later, after I had filled out paper work and returned to the area, lunch was being served. We worked to get Billy to eat, and we decided to leave him there while we went to run a few errands for items he needed. We were gone for a few hours, and when we returned we entered through the door that is only a few feet away from the door of the Alzheimer's area. We heard knocking on one of the windows of the double doors, and of course, it was Billy. I asked one of the nurse's at the nearby station how long he had done this, and she said, "Since you left." The nurse inside the area told us he had been pacing, knocking, and asking when I would return since we had left.  He ate no lunch at all. 

The next few hours were filled with much anxiety and introductions. We met the morning nurse who is there until 2:00 p.m., the afternoon/evening nurse who is there until 10:00 p.m., the aides who assist in so many ways, and the other residents of that area. There are 18 total residents in that area - 14 women and 4 men. Billy is definitely the youngest man, but I'm not certain he's the youngest resident of that area. One woman in particular looks to be in her 40s. Two of the women are screamers, and at least one is a curser. About four of them rarely speak, and when they do, they do not make sense. One of them sounds exactly like Billy's mom sounded - pitch, intonation, and stream of words. One is fairly coherent in her speech and just lives for her next cigarette. I've not seen her without her coat, hat, and gloves...always ready for the next smoke in the courtyard. 
Shelley and I stayed until Billy had his dinner. We were able to sit in the small sitting area with a television, and we convinced Billy to eat about three-fourths of a hamburger. Leaving him that night was one of the most difficult things I've ever done. But I did break away from him finally, and I cried the rest of the night. Apparently he slept for only two hours that night. 

The next day, I had a phone call from the morning nurse that she needed my permission to add some meds, and I certainly gave her that. I went to see Billy that evening, and I was able to get him to eat most of his dinner. After I left I got a call that he would not allow any of them to shower him, and in that area they are not allowed to shower alone. I told them I would assist them the next evening, and that seemed to help some. He's embarrassed about someone else seeing him undress. Each day gets a bit easier with the shower, but I still have to be present for it. I also had a call at midnight that Billy would not go to bed and was agitated and somewhat aggressive. The nurse had received permission to give him another dose of his anti-anxiety meds, and he was finally laying in his bed. I'm still not certain why I was called and what the expectation was, but when I checked the next day, his clinic notes showed that he had gone to bed at 12:05.  

God has answered so many prayers this week in such a positive way. Each day has been a bit easier with Billy. Thank you for your prayers...they are heard, and they are felt. Please continue to pray. I'll give more information in the next post. God bless the readers and sharers of this blog. My love to you all.

Monday, January 16, 2012

How Will I Know?

"There will come a time when a person with Alzheimer's disease will need more care than can be provided at home. The individual may need to move into residential care, such as assisted living or a nursing home."  - from The Alzheimer's Association at

A few years into this journey, I remember thinking to myself and asking others, "How will I know when I can't handle taking care of Billy at home?" The answer I heard from professionals was that I would know. I don't know if I expected a checklist or some clearly defined criteria, but I have not found those. For a while, I thought I might be able to keep Billy at home if I had the resources for that. I communicate with the wife of a Young Onset victim, and he remains at home in the end stages of Alzheimer's, but he has an aide for 10 or so hours daily six days a week. I do not have those resources, and even if I did have them, I am not certain that would be the best place for Billy. 

Billy's cognitive and coping skills have declined tremendously in the last few months. I can still take him places with me for short times, but I have to limit the length of time, and I have to plan to have him at home around 8:00 or 8:30 in the evening.  He goes to bed pretty easily, and he sleeps all night - huge blessings! When he gets up in the morning, I better have my running shoes on. I shower him now, and he's very compliant (thankfully), and as soon as I'm done with that, I take my shower while directing him to dry off completely and start shaving. By the time I get out of the shower, he has the shaving cream on and has usually started shaving, but he gets distracted easily. He forgets to look in the mirror, and he shaves by feel, and he might just stop halfway through and start putting away his razor. I tell him he's not finished, and I tell him to look in the mirror to see where he needs to shave. I also remind him to rinse his face, and then it's on to the deodorant, brushing hair and teeth, and I change his Exelon patch. If his clothes are laid out, he does pretty well getting dressed, except for his shirt. Now that it's cold, he keeps putting his coat on without a shirt, and I have to get him to take off his coat and get a shirt on. He's very attached to his jacket, and it's a challenge to get it off of him. This afternoon, I noticed that he had a sock on one foot and none on the other. That's a first. 

While getting Billy ready in the mornings is challenging and time-consuming, I think I could handle that if that were the only big difference. Billy's behaviors have become all-consuming, and he's struggling at daycare as much as he is at home. I receive phone calls from them wanting me to talk to him to see if I can calm him. Sometimes it helps for him to talk to me, and sometimes it does not. He requires one on one attention, and that's difficult at the Cottage when they have several other clients to care for. 

After Billy gets dressed for the day, I give him his medication, and I finally start getting ready. He shadows me the entire time, trying to ask questions. His struggles to communicate make him more anxious, but I nearly always know what he wants to know. 
1. Where is he going for the day? (It's always the Cottage, but he has to be reassured.) 
2. How is he going to get there? His caretaker is no longer meeting me in the morning, so he's riding the bus to the Cottage each day. After I tell him he's riding the bus, he says very clearly, "I hate riding that bus." No struggle with those words in the morning. 
3. Am I going to the Cottage with him? Sometimes this varies with questions about where I go when he's there. Where is my school? 
4. Can I pick him up at the Cottage? The answer is usually that he is riding the bus home, and he again tells me he hates it. He tells me "they" yell at him which could be true because drivers have reported to me that he starts getting out of his seat with every stop. 

During this time of halted questions where I fill in the words because he's losing them, he paces and wrings his hands. What a way to start the day. My heart hurts for him, and I get frustrated with him all at the same time. 

During the Christmas holidays, I began thinking about a good place for Billy. I've looked at assisted living places and nursing homes, and after talking with those who work with him daily, I'm not certain he can handle assisted living. He requires so much redirection and one-on-one time. Sadly, he doesn't seem content at home, at the Cottage, at my sister's for more than a few hours at a time. It becomes clear that he is uncomfortable by the fidgeting and pacing and constant questioning, but he struggles to articulate where he wants to be. I think this hideous disease puts its victims in distress where they struggle for contentment. Place doesn't really make the difference as far as I can tell. 

Because I must find a place that will accept Medicaid, that narrows my list of options. I'm learning more and more about the red tape involved in getting assistance. Because of all the rules and regulations, Billy will have to be in a nursing home for 30 days before I can apply for him to have Medicaid. Until then, he will be private pay. When he is accepted (could be up to 2-3 months), Medicaid will reimburse the private pay monies. That is one obstacle I've not worked out yet. Our money tree has lost its leaves. 

Shelley and I have visited many places, and we created our own simple criteria. First and foremost, if the place smells of urine and feces, we are out of there! Both of us have hyper sensitive olfactory glands, and that one is non-negotiable. The facility has to be clean - not new and beautiful - just clean and tidy. The residents should look content and maybe even happy. It also looks as though we need to have a secure memory care facility. Because Billy looks like a visitor, it would be easy for him to slip out of a non-secure place. He has never wandered from home, but I'm finding that nothing is predictable with AD. 

We have found a place that we are comfortable with. It's smaller and older, but the most important thing is the people.  You can place a loved one in a beautiful place and get crummy care, and you can place that person in an old not-so-pretty place, and they can get wonderful care. The care is most important. 

This is the most difficult decision I've made in our marriage - maybe in my life. I told some friends the other day that my head knows what I need to do, but my heart is struggling. I am at the point of exhaustion physically and emotionally, and it will not get better if Billy remains at home. I don't feel like I'm meeting all of his needs, and that is frustrating. God has answered my prayers in making this decision, and he's giving me peace with that. The actual act of taking him and leaving him is still ahead. I need many prayers for that one. I will remain Billy's caregiver. I will continue to make decisions for him, and I will see him daily. I look forward to going back to being his wife and allowing someone else to care for his basic needs. 

I will keep you posted on the process as we go through it. Your prayers and encouragement are always appreciated, and they keep us going. Thank you. 

Tuesday, January 10, 2012

Keeping it Light

Tough times call for some hearty laughs, and we've had a few lately. I could easily cry buckets of tears each day, but crying doesn't make this any better, and it gives me a big headache. I will admit that at times, I do cry because I can't hold the tears back any longer, but I laugh more than I cry.

I've also thought about how Billy would feel about our laughing at something he had done. I never want to be disrespectful to him. I have memories of how Billy handled his mom's behaviors, and he laughed. Those who know my husband well know that he spent many years making people laugh on purpose, and he laughed at himself very easily. He still laughs easily, and sometimes he's in a silly mood. I prefer that silly mood over extreme anxiety any day.

Billy has always worn his shirts tucked in. I noticed that about him when I first met him. Even though he owned around 50 t-shirts when we married, he always wore them tucked in. He's never moved into the recent fashion of men wearing their dress shirt tails out, and I'm happy about that. It's become difficult for him to tuck his shirt in requires coordination that he is losing, but he's tenacious. Several weeks ago, we were having dinner out with Shelley and Andrew, and Billy was wearing jeans and a shirt along with a fleece jacket. I noticed after one of his trips to the restroom that his shirt was untucked, but I didn't say anything. A few minutes later, he went to the restroom again (this is a common behavior...many trips to the restroom), and when he came back to the table, he had not only tucked in his shirt but his fleece jacket. Shelley and I looked at each other, and we both started laughing because it was so bulky. He looked at us and said,"You can laugh at me...I don't care."  

When I am doing any types of chores around the house, Billy wants to help. I want him to feel needed, so I usually ask him to take out the trash. He typically does it correctly. A few months ago, I asked him to put a liner in our bathroom trash can. I handed him a small grocery store plastic bag, and off he went. He told me he had finished that, and I thanked him. A while later, I went to the restroom, and I saw what he had done with the bathroom trash can...he put the can inside the bag and carefully placed it back on the floor. 

One of my favorite things about Billy has always been his friendliness. My dad has never met a stranger, and I grew up seeing genuine friendliness in him, and I found that very attractive about Billy. Having Alzheimer's Disease has definitely made Billy less aware of social norms, and if he feels it - he says it. Several months ago, I noticed that he waves (rather vigorously) at truck drivers. That includes 18 wheelers and pick ups. I don't notice him doing it with cars, but for some reason, he feels the drivers of trucks deserve a friendly "howdy." It makes me smile, and I'm sure many of those folks wonder who in the heck is waving at them as they drive 70 miles per hour down the freeway!

A few weeks ago, we were being seated in a restaurant, and as we walked through the dining room, Billy looked at one of the waiters, extended his hand for a shake, and told him how great it was to see him again. I don't believe he knew the waiter, but the guy went along with him, and shook his hand smiling and greeting him. 

As Billy struggles more and more with verbal communication, one phrase is as clear as ever. He tells us he loves us frequently. When we visited my parents' recently, we were about to leave, and we always hug them before going. Billy looked at my mom, and said with such conviction, "I don't think you know just how much I love you!" He takes people by surprise, and he charms their socks off. 

I know the time will come when Billy may not be able to utter words, but he is giving us a precious memory each time he tells us he loves us. One thing is certain about a person with AD....they do not fake their feelings. I'm thankful for the laughter. 

Monday, January 2, 2012

2011 out the door....2012 what's in store?

Happy New Year! I truly want this year to be happy, and the first two days have been pretty good. I count "the holidays" as the two weeks I've been away from school and Billy's been away from his regular routine. Our holidays have been okay...not great and not awful. And as the journey goes, okay works for me. 

I struggle when I'm off work because I feel guilty taking Billy to daycare when I'm not going to work.  However, he is much better when he sticks to his routine. Weekends are tough because they are unscheduled for the most part, and I knew he (I) couldn't handle every day being like that. I had so much going on during these last two weeks, it was truly better for Billy to go to the C
ottage. Somehow I managed to delay all my yearly exams until the last two weeks of December, so I had five medical appointments on different days. I had to finish up Christmas shopping, wrapping, and cooking the week before Christmas. The first week went pretty smoothly until Friday. Terry started her vacation, so I took Billy to the Cottage and planned to pick him up early that day. I got a call from the nurse around 1:30 that afternoon asking me to reassure him I would pick him up at 3:30 that day.  He was incredibly anxious and nervous and agitated.  When I picked him up, he was okay, but one of the caretakers said she had never seen him like that.  

The rest of the holiday went pretty much like that...up and down. Saturdays are challenging at best, and when Saturday is Christmas Eve it becomes really tough. We have done the same thing on Christmas eve for over 20 year. We spend it with Billy's family, and for the past 10 or more years, we've gone to his sister's house in Godley.  Billy didn't understand that it was Christmas Eve, and he started the day thinking we were going to play baseball. He mentioned more than once that he didn't have his glove. For weeks back in the summer, every Saturday, he thought we were going swimming.  He would sit in his chair with his swim trunks beside him.  About three months ago, he started this thing about us going to play baseball.  I could understand the swimming a little more because we actually went swimming a few times. I cannot remember the last time we played baseball.  But I digress...

It takes about an hour to get to Billy's sister's house, and he asked questions about where we were going and why for most of that hour.  About 45 minutes after we arrived, he was ready to leave, but we were not.  We had our usual "Chinese gift exchange" and he did a great job of taking away a gift.  Soon after that we started back to Fort Worth, planning to attend our church service a little late. Billy was completely confused and distraught the entire way home. We go through Burleson, his home town, on the way back, and we stopped at the light where 29 years ago, we would have turned to go to his childhood home.  He looked at the sign, and without missing a beat, said, "Y'all can turn here and just drop me off at my house." I told him he lives with me now, and I wanted him to go home with me. A few more miles down the road, he said he wanted to just "put it in the driveway," and we all agreed that was best. By the time we got home, Shelley was in tears, and we agreed we would not put him through that again. 

Christmas Day was better. We spent the day at my sister's, and he was calm for most of the morning. His sundowning begins in early afternoon, and while I was trying to help get Christmas feast on the table, he was six inches behind me or beside me. If I turned around, he was in my face. I finally sat down with him just to keep him out of the kitchen. We went home for a few hours, and he calmed down a bit. 

I am thankful for the plateau we had for several months, but it seems to be over. The decline has begun again. I wanted to think I was seeing a few isolated behaviors, but those behaviors are becoming regular. One night, we were having our dinner (on the TV trays as usual), and we were watching our nightly episode of Wheel of Fortune. Billy said, "You're a pretty puppy." My instant reaction was to say, "Huh?" Then he looked at me and asked, "Where are our dogs?" I told him that Bailey, who is sort of our family pet, lives with Shelley and Andrew now. That incident was about 5 or 6 weeks ago, and since then, he talks to people who are not present almost each evening. When I asked if they've seen this at the Cottage, they have not. It seems to be an evening behavior. He does this in the car as though he's responding to something I've said, but I've not said anything. Tonight, he would say, "Here's one," and then hold out a napkin for me as though I had asked for one. 

His self care skills are declining, and it takes us a long time to get ready in the morning, but we are getting there. He needs help buttoning and zipping his jacket. He starts the day nervously and does everything as though we are running late. He thanks me for everything I do to help him. He is such a sweet man, and when he has unpleasant moments, he apologizes afterwards. He tells me frequently that I am the best sister, and he is lucky to have me for a sister. I'm past being sad about this because some days he remembers I'm his wife. When I happen to pick him up at the Cottage, he introduces me to one of the men that he tells me is his boss. Some days, he introduces me as his sister and some days as his wife. 

I believe I've mentioned before that in October of 2010, I put Billy's name on a list to be considered for Day Care through Medicaid services.  I was pretty excited when he received a letter from the Dept. of the Aging and Disabled Services on December 16th. We were to call and set up an appointment for him to be evaluated.  I called the next business day, and the person who sent the letter told me that the day after she mailed the letter, funds were frozen. Billy's name will be at the top of the list when funds are available again. As we've waited these fourteen months on the list, Billy has declined to the point, that his needs are more than daycare. I believe he would do well in an assisted living facility, and they are available through Medicaid, but that is yet another list. And we must not forget that Billy's case is not the norm. He does not receive Social Security Disability and therefore, he does not receive Medicare.  It really stinks that Billy spent the last 15 years of his time working in a career he loved and that served children, and yet, even though he paid more than enough quarters (before teaching) to have SS retirement and as a teacher, he paid Medicare tax, he cannot receive benefits that would help him tremendously. Professionals who look at his income and our assets (or lack thereof)say he should easily qualify for Medicaid. In the meantime, I fill out paperwork, try to find a place we can feel good about, and we wait. We also pray that he doesn't get worse during the wait. 

Through it all we are blessed by so many. I thank the angels who sent money during this expensive time of year when we still had some big expenses - like dental bills. Thank you for your constant prayers that keep us upright. Peace and love in 2012.