Wednesday, February 23, 2011

Sleep finally sleep

Thank the good Lord above for Ambien. Billy slept all night last night and didn't wake up until the alarm sounded this morning. Here's hoping for a similar experience tonight. :)

Tuesday, February 22, 2011

Tuesday is Clean Sheet Day

Routine is incredibly important to Billy. His morning routine goes sort of like this:
He wakes up at least by 4:30 (usually earlier), takes his shower, comes back to the bedroom carrying his mousse, brush, and razor (no idea why), and then he starts telling me it's time to get up. He does this every morning - Saturday and Sunday included. While I'm in the shower, Billy makes the bed perfectly. When I get back into the bedroom, he is dressed and ready to go and waits rather impatiently for me to get my makeup on and get dressed.

This routine works well on weekdays with the exception of Tuesday. That's the day my sister has a housekeeper come to clean. With four beds to change, she asks that we strip the bed and lay out clean sheets. I usually tell Billy on my way into the shower that the housekeeper is coming, and I ask him to take the sheets off the bed. He always says he will, and when I come back into the room, the bed is made perfectly. This morning was no exception, and I asked him to help me take the sheets and pillowcases off the bed. It took a while to get the pillowcases off because as soon as he takes one off and starts on the other, he gets confused and puts the first pillowcase on the second pillow. Over and over, I say, "Put the pillowcases in the hamper." He finally gets that done, and we begin on the sheets. When the sheets are off the bed, he remakes it with the comforter, pillows, and shams.

Billy really thrives on his routines, and if that helps him get through the day, I have no problem with it. One big issue with AD patients is their sleep routines become distorted. This started with Billy about 6 months ago, and the doctor recommended melatonin. It didn't help at all, so I asked for something stronger. He is now taking Ambien, but last night I decided to give him Trazadone because I had given it to him once before, and he slept well. BIG MISTAKE! He went to sleep easily, but when I was winding down and turning off the television at 11:30, he woke up and decided it was time to get ready for the day. I tried really hard to get him to stay in bed, but he finally got up to take his shower a little after that. He did come back to bed, but he woke me up almost every hour to tell me it was time to get up. I gave in at 4:30. We are back to the Ambien tonight, and I am praying he sleeps all night. I must have my sleep - otherwise I can never make it sitting in principals' meeting for 7 or 8 hours tomorrow. I will fall out of my chair.

I've mentioned my fellow caregiver friend I met through blogging - Karen. A common theme in her blog is her weariness. When she doesn't say it directly, you can sense it. She has managed to keep her husband at home for 10 years with early onset AD. She works all day while an aide is provided, and when she gets home, she is his caregiver. She feeds him supper, shaves him, and gets him into bed with the help of her daughter or son. By then, she has no energy left.

You sort of ease into this role without realizing it. One day you're doing things with your spouse, and the next day, you realize you're doing things for your spouse. You also realize you are never alone anymore, and I like spending some time by myself. That is a thing of the past.

I hear steady "sleep breathing" beside me now. I'm taking that as my cue -- good night, all!

Saturday, February 19, 2011

Hoping for some help...

My experience with government agencies is limited, but I've heard many horror stories about long lines and impersonal treatment. I had some preconceived notions about the experience, and I must share that our visit to the social security office Friday was very pleasant overall. I used my trusty iPhone gps, and it got me to the general vicinity in downtown Fort Worth. Billy had made the connection that we were going to a government office, so he kept wanting me to turn toward the courthouse which was not close to the Social Security office. After only two circles of 6 or 8 blocks to get to the correct place, I found a parking place directly in front of the federal building. I had enough change for the parking meter, and we arrived in the correct office 20 minutes before our appointment.

I was fully prepared to wait until the appointment time, and we took our seats. I pulled out my phone to begin checking my email, and before I had finished reading even one of them, our names were called to go with Mrs. Crawford. She took us through the miles and miles of cubicles to her desk in the very back. I had filled out the online application for disability, and this part was to complete the process. After explaining that two types of disability assistance, Mrs. Crawford proceeded with her questions. The entire interview took less than 45 minutes and was really a pleasant experience. She confirmed that Billy would not qualify for any disability payment because he had not paid in any significant amount since 1995 - most teachers in Texas do not pay social security. However, Billy worked paid in for over 15 years before he started teaching, so he will have some retirment from SS when he reaches 62. I hope he is able to collect that. When we got back to the car, the meter had 8 minutes left on it. The entire visit was less than an hour - fabulous!

One really positive result of the interview is that Billy will most likely be covered by Medicare very soon. Once you have been disabled for two years, you are able to receive those benefits. I'm not certain what all that will entail, but I feel like it will be very helpful in paying for his medical needs. He sees the doctor every three months to maintain his medications. He has a complete evaluation every year, and because he's had four melanomas removed, he sees the dermatologist every sixth months. He does have good insurance through Teacher Retirement, but it's pretty costly.

Our weekend so far has been pretty pleasant. Today I took Billy with me to have my eyebrows waxed, and when we got out of the car, he said, "This will be the first time I've had my eyebrows done." I assured him I was only having mine done, and he was so relieved. He's so good about all the appointments I drag him to. He gets nervous when I am driving him to an appointment because he usually feels that he hasn't been informed, and then when it's over with, he'll comment that it wasn't too bad. I nearly always tell him the day before, but he doesn't remember, so he gets irritated and says, "No one tells me anything!" I've not found the remedy to this yet, and it may not exist, so I'll just keep "surprising" him.
I've included a picture of Billy with me at Shelley's wedding this past July. I love that the photographer caught him smiling.

Thursday, February 17, 2011

The Red Tape Begins

Tomorrow morning Billy has an appointment at the Social Security office, and I really don't know what to expect. I applied for him to have disability benefits months ago, and I feel pretty certain he will be denied. Back in July, I consulted with an attorney who specializes in assisting folks with Medicaid benefits. He's been helpful in telling me the steps to take in order to get Billy qualified, and without his guidance I would be lost in the red tape. The attorney told me he will most likely be denied, and then we go from there. I don't know for sure where we go, but he will let me know.

Most of the school districts in Texas do not pay social security for their employees; we have our retirement through the Teacher Retirement System. Because Billy had taught for 15 years without paying SS, he most likely will not qualify for those benefits, even though he paid many quarters before teaching. My goal is to plan ahead, so that when the time comes, he will have Medicaid to assist with either in-home care or a facility. The word "facility" makes me feel a tiny bit better than "nursing home," but the reality is that most AD patients end up in nursing homes. I do believe more people are doing their best to keep the loved ones at home, but it is an overwhelming responsibility, and I honestly don't know what we will do when faced with the issue. The cost of a nursing home is between $2500 and $4500 per month.

I recommend to anyone in their 50s - take out long term care insurance now. The older we get, the more expensive the premiums, and our children will need the financial help. Because Billy was already on medications for dementia, he was unable to get LTC insurance when we applied four years ago. I am so thankful he has a small retirement annuity and that the Teacher Retirement System has good insurance. However, the daycare cost is very expensive. At the moment, since we are living with my sister and her family, I am able to keep him where he is. When you have a moment, take a look at . We call it the Cottage, and it is as beautiful as the pictures appear. The caretakers are patient, kind, and compassionate. It has no appearance of a nursing home. At lunch, everyone eats family style at the dining room table with china and crystal. They have an exercise time in the morning, a craft time after lunch, and sometimes they watch a movie together. Billy tells them that he does not do crafts, but he usually goes with the group "just to watch," and he always ends up making whatever the others are making. He usually plays dominoes in the afternoons before I arrive. Billy really does enjoy spending his time there, and he feel secure when he's there. That makes it worth the cost...knowing that he is happy, and he has some socialization. Human interaction helps keep the delusions at bay - a little anyway.

I pray that I will have clear guidance in making decisions when the time comes. Please pray that we are able to get assistance and can find a way to keep Billy either at home, or that we find a place that gives us peace. I don't know how far away we are from these decisions, and I am not in a hurry to make them. But I can't bury my head in the sand and ignore the need to plan. In the meantime, we live in the moment, and the moment is calm. Praise Him from whom all blessings flow.

Tuesday, February 15, 2011

You Gotta Laugh

When you deal with a loved one who has dementia, you really need to maintain your sense of humor. I do not find Alzheimer's Disease or any type of dementia to be funny, but I do find that when faced with the challenges of dealing with Billy's odd behaviors, I can either laugh, or I can cry. I do have days (not many of them, but a few) that the tears sit ready to overflow. But most days, I just try to find the humor in the things he says or does.

I've mentioned that Billy thinks he works at the Cottage which is the adult daycare where he stays. No matter what time I get there to pick him up, he's ready to go and usually pacing the floor. One of the caretakers teases him everyday, and when I walk in, she acts totally surprised that I am there to pick him up. It seems that he often says he hopes I don't forget him. As if that were possible. Shelley picks him for me sometimes, and when she asks him what he did for the day, he talks about teaching all day and how tired he is from it.

This morning, as we were taking our medicine and getting ready to leave, he told me he was having to take a test today. I asked him what the test was about, and he said he couldn't remember...he would have to check his book. I have no idea what book or subject, but he was certain he had a test. He speaks often of tests and important papers he has misplaced. I've learned to just go with it. Telling him they don't exist only frustrates him more. If I go along with him, and discuss what could have happened to the papers, he deals with it better.

Sleep has been a real issue lately. It is rare that he sleeps all night, and when he wakes up, he thinks it's time for both of us to get up. It may be 2:00, 3:00, or if I'm lucky 4:00 in the morning. He tries to get me up, and when I won't, he takes his shower and gets dressed - even at 3:30a.m. I find it really difficult to work all day with the fatigue I feel after having my sleep interrupted. So, I asked his doctor to prescribe something to help him sleep. I gave him 10 mg of Ambien at 9:30 tonight, and he is finally settling in at 10:45. I thought he would conk out at 9:45, but he seemed to do the opposite. He took a shower, shaved, and straightened his side of the bed for about 10 minutes. It's an OCD type behavior at bedtime....he straightens his covers over and over. He comes to my side of the bed and straightens my covers - while I'm in the bed. He fluffs his pillows about 20 times, and he finally gets into bed. He has spent as long as 30 minutes doing this straightening ritual. Sometimes I get a bit frustrated and try to get him into bed. It usually does not work, and tonight was no exception. I find that my sense of humor wanes after about 9:00pm.

I've been reading the blog of another wife whose husband was diagnosed with early onset Alzheimer's Disease (EOAD) at the age of 36 when their children were 7 and 9. Her husband is in the end stages of the disease, and she has kept him at home for the 10 years since he was diagnosed. I am inspired and amazed by her, and knowing what she is going through has made me realize the blessings we have.

I need to remind myself of those blessings...
I am so thankful that Billy can still groom himself (albeit slowly), he can feed himself, take care of his toileting needs, respond to questions, speak in complete sentences for the most part, express his emotions (which run the gamut many days), and he can still hug me. I take so many things for granted, and then I notice that certain things are no longer givens. Yesterday was one of those days I took for granted for many years. Even last year, he was a month early, but he bought me a dozen roses for my birthday/Valentine's Day/Mothers Day. That's a funny story for another post, but even as Valentine's Day was mentioned on the radio and tv this week, and hearts were abounding, it didn't register to him that it was a special day. Not that we ever made a huge deal of Valentine's all depended on what was happening at the time, but we did exchange cards, and he sent me flowers on occasion. I have to admit that I missed that yesterday. It was a similar experience on my birthday. It does make me sad that he won't randomly bring home flowers to me anymore.

I really appreciate that my brother in law was sensitive to that, and he wished me a Happy V Day. He also cooked a wonderful steak dinner for all of us, gave Billy and I a sweet Valentine, and he put chocolates on our bed. God has provided such a strong support system for us, and I will do my best not to take it for granted. I know how fortunate we are to be able to live with my sister and her family, and it is a blessing to be grateful for. I am.

Sunday, February 13, 2011

I love/hate weekends!

I do look forward to being away from work on Saturday and Sunday, and overall I enjoy the weekends, but they are more difficult than they once were. Billy does fairly well with his regular schedule, and we don't have much of a schedule on weekends. He really cannot remember what day it is when he wakes up, and he wakes up very early - sometimes before our usual 4:45a.m. alarm. No matter what time it is, he feels he should wake me up to get ready for the day. Saturday morning it was 12:33a.m. when he first told me the time. Then it was 12:35, and I'm sure you get the picture. I did tell him it was Saturday, and he remembered that for about 90 seconds. Alzheimer's destroys short-term memory, and then it starts eating away at the long-term memory. Billy finally went back to sleep, and I believe he slept until about 5:30, and that's great. If I can get him to wait until 7:00a.m on the weekends, I can turn on the Today show for him to watch. That seems to keep him somewhat engaged, and I can continue to sleep.

Shelley and Andrew were out of town this weekend, so we were looking after the family dog, Bailey. Bailey was Billy's dog, and when we moved in with my sister and her family, we couldn't take Bailey with us for many reasons. Shelley and Andrew took her in, and I am so grateful we didn't have to give Bailey away. We made many trips to Shelley and Andrew's apartment this weekend to take Bailey out and feed her. The 20 minute drive goes something like this...

Billy: Where is Bailey?

Me: At Shelley and Andrew's apartment.

Billy: I hope she didn't get out.

Me: She can't get out. She's in their apartment.

Billy: I know, but I worry about her getting out.

Me: I think she's okay.

Billy: Do we have her leash?

Me: Yes, it's in their kitchen. We need to leave it where Bailey is.

Billy: Do you have a key to their place?

Me: Yes, I do.

Billy: Do you know how to get there?

Me: Yes, I do.

Billy: Do we have a leash?

Me: The leash is at their house where Bailey is.

Billy: Red light. (In case I didn't see it.)

Billy: Do you have a key?

Me: Yes, I have the key.

Billy: It's green now.

Billy: Do you have a key?

Me: Yes, I have a key.

Billy: We just need to take her out and feed her?

Me: Yes, that's pretty much all we need to do.

Billy: Good, because I'm really tired today.

This is all repeated until we arrive at Shelley's apartment and take care of Bailey.

I do pretty well in the mornings with the questions, but by later in the day, I start getting shorter with my answers. Billy is very sensitive, and he recognizes any slight change in my intonation that might hint of my irritation. Then he apologizes, and I feel guilty. Sometimes, he is offended and reminds me that he can't help it. I feel more than guilty at those times.

Billy seemed to be very anxious this afternoon, and more than once, he asked when we would be leaving. No plans to go anywhere I told him, and he said we had to leave sometime. I reminded him that we live here now, and he said, "Just for now, though." Yes, just for now, but we won't be moving out anytime soon. Then he said, "I just worry about her." He has mentioned his mom frequently lately. She is on his mind often, and he does not remember that she passed away over two years ago of Alzheimer's Disease. I tried to reassure him that his mom is okay. A few minutes passed by, and he told me he would like to call his mom, but he wasn't sure of the number. He asked me what our home number was, and I told him that we use my cell phone as our home phone. I sat down beside Billy on the couch, and I looked at him, and I asked him if he remembered that his mom had passed away a few years ago. He said he had seen her in her bed this morning, and he knew I thought he was hallucinating, but he wasn't. I assured him that she was doing great where she is, and he didn't really ease up. I suggested we call his sister, Cindy, who was his mom's main caregiver. He seemed relieved that we could do that. I called her on my cell, and I spoke with her for a bit before handing the phone to Billy. She assured him that his mom is doing well. That seemed to be what he needed, and he let it go for the rest of the evening.

Weekends always present some odd behaviors and more anxiety for Billy. As much as I get frustrated with Billy, I cannot imagine what his frustration must be when he asks for my help, and I can't produce the person he wants to see, or worse yet, I tell him that person has passed away. This disease slowly and surely robs people of their dignity. I want to help Billy maintain his dignity for as long as possible. If it means we make phone calls to others to help in my role play, then so be it. I love the man I married, and I will love him no matter the changes that occur. His personality hardly resembles the outgoing person he was before this disease struck. But no matter how bad he is at this point, he tells me daily how much he loves me, and I don't question that at all.

Friday, February 11, 2011

In the Beginning there was Billy and Kathy

If you find yourself reading this you probably know Billy and me, and you probably know our recent past, but indulge me to share that again. Billy and I married in 1981 after dating for five years. During the first five years of our marriage I taught school, and Billy worked for the state of Texas and then for a retail nursery; we bought our first home; and we welcomed two beautiful children into our lives. Shelley was born in 1983, and Andrew was born in 1986. Soon after Andrew's birth, Billy was transferred to west Texas, and off we went. We intended to stay in that area for a year or two, and 20 years later, we found that we had raised our children in west Texas, and we had put down pretty deep roots in that desert sand. We felt the yearning to return to a place near our family for several years before acting on the desire, but when my brother was diagnosed with stage 4 colon cancer in late 2005, we suddenly felt an urgency to head back home. Making a big move when you are approaching age 50 is a challenge, but when the opportunity came, we sold our house and packed up our belongings to come home.

Our daughter lived in another state at that time, and our son stayed back in west Texas to work. Our immediate family had realized for several years that Billy's memory was failing, and we had concerns. I had insisted he see our family doctor who did the simple memory test on him. He passed it with flying colors, and she referred him to a psychologist who felt that Billy had adult attention deficit disorder, putting him on Aderral. When we moved to this area, he sought out the help of a psychologist and continued to take ADD medicine. I never noticed an improvement in his memory or his ability to attend to details. In June of 2007 we received the devastating news that our son had died from an accidental overdose. Losing Andrew was the hardest loss we've experienced, but the care and compassion we received from family and friends was comforting. That summer, we put Billy's mom on hospice. She had been diagnosed with Alzheimer's disease many years before that time and had been in an Alzheimer's facility for several years. In May of 2008, my brother lost his battle with colon cancer and died at the age of 47. He had been such a support to me as we sought answers to Billy's memory issues, and I miss him everyday.

In February before that, Billy had seen a neurologist and a psychologist who both used the term mild cognitive impairement and put him on Aricept and Namenda. I had contacted the Alzheimer's Association months before that looking for advice on dealing with the disease. I also took him to UT Southwestern Hospital in Dallas where a leading psychiatrist interviewed him and administered the MME (a test for memory). He confirmed the mild cognitive impairment and told us he felt that Billy had a 50/50 chance of developing AD. Within 6 months or so, Billy's condition seemed to deteriorate and work became quite a challenge for him. He seemed to struggle constantly with all the details of teaching. Because Billy was teaching in the same school district where I am a principal, I had a professional relationship with his principal. Billy told me of a few conversations he had with his boss, and I felt like it was time to intervene. With some hesitation from our HR department, Billy was finally able to give written permission for me to visit with his principal about the issues he was having at school. I knew he was having a rough time at home, but I really didn't know about his everyday life at school.

When I had a long visit with Billy's principal, I wasn't prepared for how difficult it would be to hear all the issues he was having. I had been so conflicted because as a professional, I know the importance of the teacher's abilities in the classroom. Being a good teacher entails so much more than knowing your subject matter. It requires positive relationships with students, organization, lessons that keep students engaged, grading, parent communication, etc. Billy was struggling in every area, and as a ninth grade teacher, I believe some of the immature students were "eating him alive." I knew the principal was doing the best he could to keep parents at bay, and I knew what had to be done.

Telling Billy that it was time to check into disability retirement was one of the hardest things I've ever done. He really struggled with acknowledging that he could no longer do an adequate job of teaching. We were both concerned about finances because we had lived on both our salaries for years and years. His retirement annuity is less than one third of what his salary was, so in essence, we lost an income. One of the biggest differences in early and late onset AD is that most folks with late onset are already retired and usually do not have dependents at home other than a spouse. Early onset AD folks often have children at home or large debt.

Billy has been on disability retirement now for almost 2 years. The first year and a half, he stayed at home by himself while I was at work. When he had a complete evaluation in the spring of 2010, the doctors told me he should not be left alone. I really had not fully realized that, and I had not prepard well for what we would do if he needed someone with him all the time. I work 8-10 hours each day and often have obligations in the evenings. I decided I would assess things while I had some time off during the summer. Shelley was getting married in July of that summer, so we were incredibly busy during my three weeks off in the summer. The first week I returned to school in the summer, Billy had major delusional episodes daily, and I got a very clear message that he could not be alone all day every day while I was at work. He currently goes to an adult daycare facility while I am at work. The daycare he attends is fabulous. I had envisioned a sterile nursing home type place, and I really dreaded it. Instead we foud the Rose Cottage which is like a big beautiful home with nice living areas, a coffee bar, and wonderful study with computers, books, and games. He loves it, and he feels safe there. From the way he talks and acts, I think Billy believes that he is an employee at the Cottage. He doesn't like to miss going and worries he might get into trouble if he does. All the folks who attend the Cottage are self-pay, and it is not cheap. After struggling for so long, I made the decision to ask for help. My sister and brother in law welcomed us into their home, and we now live with them. That allows me to pay for daycare - which costs more than many people's mortgages. The care he receives there, and the peace of mind that I have when he is there make it worth the sacrifice of not having our own home. The living arrangements have worked out well so far, and we are in our fourth month of it. I will be forever grateful to Leslie and Shawn for the selfless act of allowing us to move in with them. They have two little ones: Connor will be 4 in April, and Claire will be 3 next July. Life at home is never dull! We all help each other, and I am so thankful to have their help with Billy.

I've written too much on this first post, and I plan to scale it down from now on. I get a bit too verbose when I write, but I have so much I want to share. Life is different now. Your prayers are desired, and they are felt. Thank you for being part of our lives and for caring so much about us. Love to all.