Sunday, June 26, 2011

Another weekend has come and is going quickly, and I declared it a "slow down" weekend. We've had no weddings to attend, no special performances, no big plans at all, and I've insisted on doing some recliner time. It's been very nice after the trying week we've had. During this past week I've spoken with a Social Security representative whom I found incredibly patronizing, I've been told by two different caretakers (one at the Rose Cottage and one who comes into our home) that Billy had the worst day they've seen in the six months they've stayed with him, and I've dealt with a day of Billy's extreme anxiety.

In an earlier post, I wrote about our experience with the Social Security office, and it was a very pleasant event. We had a kind and patient representative who was helpful in so many ways. The end result of that visit was that Billy would receive no services from SS until he is able to draw retirement after his 62nd birthday. She did say she felt that he would be able to get on Medicare after he had been disabled for two years - which officially hit the mark in April. I was unsure about how to apply after looking at the website, so I called their general number. I was connected with a representative who did not focus on telling me how to apply but instead told me he would not qualify for Mediare because he had not been on SS Disability for two years. In fact, he's never been on SS Disability because he's on Retirement Disability for Texas Teachers. She was very matter of fact about the rules, and I pressed to understand why I would be told by someone in their organization that he would most likely qualify if it were not a possibility. She just repeated what she had told me before - saying it a bit louder and slower this time. The only way a person can get Medicare without being on SS Disability for two years prior is to have end stage renal failure, ALS, or something else that did not include Alzheimer's Disease. I should remember it because she said it over and over. I mentioned that my husband has Early Onset Alzheimer's Disease, and later in our conversation, she said that there was no mention of Medicare for early stage Alzheimer's Disease. I corrected her to say that he is not in early stages, but he has early onset AD. He is actully in later stages. She again repeated the reasons you may receive that particular program and ended with the point that he could apply when he is 65. My parting words to her were that I really doubt Billy will live to 65. That's more than 10 years, and I do not see him living that long. I do know it's possible and his mom lived with this disease for at least two decades, and I do not see that as a blessing.

I attended an educational conference in Dallas Wenesday, Thursday, and Friday, so Shelley picked up her dad from the cottage on Wednesday and Friday. When she picked him up on Wednesday, the nurse at the Cottage said he was worse than she had ever seen him. I wasn't sure what all that entailed, so I called the next day to get specifics. It seems that he paced from 7:30 a.m. until the end of the day, wanted his mom to pick him up, and got very angry with them. He told them if they didn't call his mom or his wife, he was not going to work there any longer. The next day was his day at home with Catherine, and as soon as I got there on Thursday afternoon, she told me it was the worst day she'd ever had with Billy. He paced all day, wouldn't eat more than a 1/2 sandwich, and insisted that she take him home or call his mom. She took him into the bedroom to see if any of it seemed familiar....our clothes in the closet....nothing seemed to help. He was dripping with sweat most of the day, which is how his body reacts to these intense moments of anxiety.

On Friday, I sent Seroquel with him to the Cottage in hopes that giving it to him in the afternoon would calm him. I wrote a note for him to keep in his pocket telling him where I was and that Shelley would pick him up between 5 and 5:30. The report I received said he seemed slightly better than Wednesday but not a great deal.

I'm glad we've had a weekend to sort through things a little, but I may be more uncertain now than I was before. I do know that I have to make some changes...I just don't have a clear vision of what those are just yet. I appreciate all your prayers as I seek wisdom on what is best for Billy, and I do believe that includes what is best for my health. We went to lunch on Saturday, and he told me he has a real fear that I will "put him away," and I asked him what what he meant. He struggled to say anything, and I asked him if he meant a nursing home, and he nodded. I can't assure Billy that I won't place him in a facility. I detest the thought of it, and I would love to say I can keep him with me at home through all of this, but there are too many unknowns. I'm not certain I can work all day, and come home to care for him physically and emotionally when he gets worse. Ideally, I would have some assistance for the day and part of the evening, but I'm not certain if that can happen. I make enough money to knock us out of some assistance programs, but I don't make enough to pay for that type of care. Paying for daycare is a challenge, and in-home care is more expensive than that.

The next best thing to home would be a top rate assisted living facility, and the cost of that is between $3000 and $5000 a month. At this point, Billy has a small retirement annuity and insurance. I am thankful for both, but they will not come near paying for a month of care. My choice appears to be getting Billy on Medicaid and placement in a nursing home eventually. I know there are some excellent nursing homes, and I am looking into finding one (at a very slow pace), and then things get fuzzy for me. I know the attorney will help with that, but what he has told me so far is that he has to be in a nursing home already before he qualifies for Medicaid. I don't know how long that takes, and I don't know that we are guaranteed that he will qualify. So, in the meantime, how do I pay for the cost? I know God will not let me go. I just don't have the answer yet.

Billy's sleep patterns have improved, and I am so grateful for that. He doesn't always know where I fit into his life. He told me again yesterday that I was a great sister. Today, he asked me where my mom lives. When I told him she and my dad live in Corsicana, he said, "That's where Kathy is from." I looked at him and took my glasses off and said, "I'm Kathy." He told me he was talking about the other Kathy, but he couldn't articulate who that is. Later in the evening, I asked him if he knew my name, and he told me it is Judy Kathleen Barnes....completely left off the Knowles. I asked him if he knew how we are related? He paused and laughed that wonderful laugh he has and said, "I really don't know."

Sometimes I'm not certain what help I need from God, so I'm just laying it all at His feet. I do have some good resources, and I'll make some phone calls tomorrow morning. One call will be to the doctor's office because we need something to assist with the severe anxiety. His poor body and mind get so tired when he has these moments. He's losing weight quickly, and although he can stand to lose some right now, it needs to slow down at some point. He's gone down 2 sizes in pants since winter.

Enough of my rambling tonight. Pray for me to find answers to help Billy find peace. It's so difficult to watch, but I cannot imagine how hard it must be to live with daily confusion and fear.

Wednesday, June 22, 2011

There is no manual...

Happy Fathers' Day 2011

Every holiday is bittersweet these days. We were so happy that Billy was here for Fathers' Day - at home with us. Shelley loves her dad so much, and we had a very nice lunch at our house with my mom and dad, my sister and brother-in-law with their little ones, and my sister-in-law and nephew. It was such a roller coaster weekend with a few ups and more downs but we ended on a positive.

Billy was confused all day Saturday. He kept thinking it was Tuesday or Wednesday, and every time I got up from the chair to do anything, he grabbed his hat and thought we were going somewhere. Every Saturday we go through the "what time is church tonight" question so many times I lose count, and he's leave at 2:30 p.m. (It starts at 5:00 p.m. and takes about 20 minutes to get there). I was busy straightening the house and preparing lunch for the next day, so I was all over the house most of the day. At one point in the afternoon, he came over to me in the kitchen and kissed me on the cheek and said, "You are such a good sister." I looked at him and said, "I'm a pretty good wife, too." At that point, he said, "I'm sure you are," and I knew he thought I was his sister. Apparently he said similar things the previous Thursday because Catherine said he didn't know I was his wife, but she never got the opportunity to explain because Billy is always by my side when I get home.

I blew it off a bit and went on about my day, and then on the way to church, he patted me on the knee and once again told me I was a really good sister. I looked at him and told him that I'm his wife. He got such a funny look on his face, and said, "My WIFE?!" It was clear that he didn't believe me, so I told him I would be his sister that day. By Sunday, he seemed to be thinking I was his wife again. Even though I understand it's the disease, somehow it hurt a little when he thought I was his sister. It just does a little something to my heart, but we go on. When his mom could still talk and converse somewhat, she would introduce Billy as her brother. Relationships get so blurred with damage to the brain.

When we arrived at church, I confused him even more when I told him that Shelley and I needed to leave church early because we were going to see my nephew march in the DCI performance. Billy was going to stay with my son-in-law, and this confused him. It's hard to leave Billy, but it's harder to take him to some events. With the 105 temperature that night, and the fact that Billy goes to the restroom every 1/2 hour, I just couldn't do it. My sister joined Shelley and me, and Billy and my son-in-law stayed at my sister's house with my brother-in-law and their kids. We didn't get finished at the performance until almost 10:00, and my sister called her husband to see if it was okay to stop by the store on our way home. He was very quick to say NO and asked if we could drive at least 100 mph to get home. Apparently Billy was out of sorts. I told Shelley and Leslie about Billy thinking I was his sister and that I had probably handled it wrong. Shelley said, "Mom you can't feel bad about how you handle things. There's no manual that tells you how to deal with your husband thinking you are his sister." That resonated with me. There is no manual on what to do in specific situations when your spouse is slipping away bit by bit. There are some good resources on caretaking, and The 36 Hour Day is excellent in preparing you for many of the situations you encounter, but we are not provided a script on what to do when these things happen. I am thankful that at least Billy knows that I'm family, and that I love him. The day will most likely come that he does not know me, and that will be hard to bear.

He did really well on Sunday when everyone came to the house for lunch. I've noticed that when we are all together, he relaxes a bit. He told me over and over how much he likes my parents, and he's as relaxed as he gets when they are around. It was a good day, and he smiled so big when Shelley took his picture.

Thursday, June 16, 2011

I once had hobbies, but now I take care of Billy...

I wrote this post yesterday and did not publish it until now. Last night, Billy started complaining about going to the cottage, and I worked to calm him down. He kept saying that they play dominos, and he doesn't like to play them, so he just doesn't want to go. I let it drop last night, hoping that he would let it go. He didn't. This morning he told me repeatedly that he ddin't want to go because he wants to be with me and go to the cottage I attend. He's really been stuck on this lately. He has asked me about the cottage I stay in, and I tell him that I don't stay at a cottage. I go to work at the school. I feel so guilty that I can't handle keeping him with me all day when I have the opportunity. The weekends are difficult, and today I needed to get several things done, so I promised to pick him up early. So much like a child and parent.

He also woke up at 1:40 this morning and took his shower. I was able to get him to come back to bed for a few hours, but he never really went back to sleep, and if Billy ain't sleepin', I ain't sleepin'! When these odd days appear, I try to analyze what all I've done and see if I can do something differenlty. Sometimes, it just seems random. The brain is a remarkable organ, and when it is diseased, it can be a daily surprise as for what will occur.

I wonder what I did with my time before Alzheimer's Disease....caregiving really absorbs a person's time and energy. I have always known that I depended on Billy to do quite a bit around the house. We must have agreed somewhere along the way that he would be in charge of taking out the trash, caring for the lawn, and general home maintenance. And I know I had it good when all I had to do was say, "The trash is about to overflow!" Somewhere in our marriage, he just picked up on those suggestions, and he took care of it. When he first had to retire from teaching, he stayed home by himself, and he was wonderful about doing the laundry, keeping the lawn, and keeping the house straight.

Those days are gone. He gets very confused about the washer and dryer, but he can fold clothes pretty well. He helped with the weed eating last weekend when our son-in-law was doing our yard. I've mentioned before about the trash can issues. He cannot discern the recycle items from trash items, so they get switched frequently. This morning I ran out of time and didn't get our flowers watered. The caretaker was coming to the house, so I asked Billy to water the flowers. I had just asked him to turn off the sprinkler, and he took care of that. So asking for him to water the flowers seemed easy. Not so. He was looking for a big pitcher to water the flowers, and I told him he could just use the water hose. He looked very confused and said he didn't know what to do. I went with him to where he had rolled up the hose, and it still had the sprinkler attached. I told him to take the sprinkler off, and he did. Then I had to tell him to put water on the flowers. He complied, but the steps had to be broken down for him. I was using those darn words again, and they just get lost in his head.

The norm is rapidly changing with Billy...he wants to do things to help me around the house, but many times that leads to something going wrong, and I have to undo that before going on with the original chore. An example is loading and unloading the dishwasher. When I open the dishwasher door, he comes quickly to see if I need help. He started this when we lived with my sister and her family. He felt needed when he did the dishes, and he tried to do them every night. If clean dishes were in the dishwasher, we would mention that they needed to be put away first, and like a magician, his slight of hand would change from unloading to loading, and before we knew it dirty dishes were mixed with the clean. One time is okay, but then we went from once to almost every night. It became a race to see who could get to the dishwasher before Billy, and then who had the fortitude to keep him away until it was done. He just wants to help. This morning while he was in the shower, I stripped the bed because it's a great day to have Catherine help with washing, drying, and putting those back on the bed. After I got out of the shower, I could hear his feet shuffling, and when I opened the bathroom door, there he was putting the pillow cases back on the pillows. I got him stopped before he put the sheets back on.

These are the time consumers. Sometimes he's just trying to tell me something, and he can't get it out, so he takes me to what he's telling me about. The other day he wanted to tell me that my phone was buzzing. He couldn't say "phone," so he took me to it, and picked it up, and said, "This was buzzing." As much as I get frustrated, I cannot imagine how he must feel. Especially a man whose vocabulary could surpass most folks'. As much time as all this takes, I know we aren't even close to the real time consumers. Billy can still groom and dress himself. He's slow, but he gets it done. He can still feed himself; I just have to provide the meal and remind him to eat it. He's losing weight, so I know he forgets to eat some things, and the eating has changed in the last few months. He's still mobile, and I really don't notice issues with his gait at this time. I know he can read because he reads all the road signs to me, especially the speed limit signs. And his brain still processes the words, "Slow down. You're going too fast!" All of these things he CAN still do drain his energy. If we throw in something extra, he's just exhausted afterward. This week we are attending church on Wednesday, Thursday, and Friday evenings for our Summer Spectacular which I refer to as VBS on steroids. (Jonathan, the musical does incorporate some fog machines and interesting spotlights while telling the story of Noah!). It involves LOTS of people and can run a bit long, but he says he wants to go, and as long as he wants to go, I'll take him. As long as he wants to drink Dr. Pepper, he's got it, and if he wants Blue Bell ice cream, I'll serve it to him. Alzheimer's Disease has no cure, and if those things make Billy happy, so be it.

Monday, June 13, 2011

30 Years Ago...

I married Billy in 1981 when I was 23, and he was almost 25. We had dated for five years during and after college, and we felt we were finally grown up enough to get married. :-) Looking back, I really doubt we were all that mature. As I recall the first year of marriage was full of fun (like going to matinee movies 2-3 times a week after we got off work) and full of arguments about many issues (like eating in the bedroom vs. NOT eating in the bedroom). Those were the days we discussed things like if we should buy a new car. Where would we spend Christmas Eve - his parents or mine? Those were the days before children obviously because after children, our discussions were centered around them, and our entertainment involved a trip to McDonald's for a Happy Meal.

When I reflect on the last 30 years, I can easily think of 30 things I love about Billy, and I want to share:

1. His unconditional love for his family.

2. His non-judgmental attitude toward others.

3. His smile and easy laugh.

4. His compassion for others, including animals.

5. His silly jokes like the following....I would run off and marry you tonight, but I'm eating canteloupe!

6. His loyalty to family and friends.

7. His loyalty to his teams...Dallas Cowboys and Texas Rangers.

8. His knowledge about all things Texas!

9. His undying love for his home state.

10. His love for our chldren.

11. His natural ability to be the "fun parent" as my children declared frequently.

12. His good natured joking with others.

13. His ability to show affection to anyone without embarrassment.

14. His honor for his mother.

15. His determination to complete his degrees.

16. His self-depracating humor.

17. His beautiful tenor singing voice.

18. His fearless fortitude to attempt to fix anything around the house.

19. His willingness to eat whatever I cooked with a smile on his face.

20. His reassurance when I made big mistakes.

21. His love for my parents.

22. His head full of trivia.

23. His genuine care for his students.

24. His talent for landscaping.

25. His caretaking of his mother who died from Alzheimer's Disease.

26. His love and insistence on family traditions.

27. His love of God.

28. His spirit of volunteerism - going on mission trips and band trips with our kids.

29. His allowance for my independence.

30. His commitment to our marriage.

I realize that so many of these things have changed over the last few years with the presence of Alz. Disease, but I will never forget the reasons I married him and love him forever.

Happy Anniversary, Billy Knowles. I love you forever.

Sunday, June 5, 2011

Holes in my heart...

Jewel's recent song, There's a Hole in My Heart, struck me when I first heard her sing it. It's such a true description of the feeling you have when you lose somone you love so dearly. The first time I remember feeling that physical tug was when my grandfather on my dad's side passed away. I was about 12 years old then, and I had not experienced death that closely before. In the last few years, I've had more holes shaped in my heart, and although God gives me a peace that I could never have fathomed, the holes are very real and the pain is not diminished.

Today marks the fourth anniversary of our son's death. Andrew died of an accidental overdose after becoming highly intoxicated at a party, followed by taking a handful of methadone pills. I miss him every single day, but I am truly thankful that he is with his Lord and Savior who has healed him from the pain he had. Andrew was diagnosed as bipolar type 2 when he was 17, and we never found the right combination of medicaton to take away the pain he was trying to fix. When he turned 18, he told us he was not taking meds anymore. He didn't like the way he felt on them, and he wouldn't take them. So, he self-medicated with alcohol mostly, and ultimately with drugs. He died 5 weeks before his 21st birthday.

I was very close to my brother who was with us through all of the pain and grieving of losing our son. He was battling colon cancer at the time, and he was losing the battle. Less than a year after Andrew died, my brother passed away, and another hole was made in my heart.

With each loss, Billy's dementia was more noticeable. He still drove to Glen Rose twice weekly to feed his mom dinner. I'm so thankful he was able to continue that because it was such a sweet bonding for them. I went along a few times, and I had to fight tears each time because his love for his mom was so evident. She was the next hole in my heart as she passed away with all of us surrounding her. She was so loved by so many in the care facility, and I know Billy misses her because he speaks of her so often.

We lose part of Billy every day, and the hole in my heart is reshaped each time I notice something else he can no longer do. He wants to help with anything going on at home. I try to honor his requests, and give him a few things to do. Even very simple things are difficult. Taking out the trash is tough. Last week I asked him to get something out of the dryer. We have a front loading washer and dryer, and he didn't know which was which. At night we remove the throw pillows from our bed, and he frequently takes them off, puts them on, takes them off, and puts them back on. I usually end of taking them off, and I often get frustrated and tell him to leave the pillows alone. I must work on my patience about this.

I've searched my brain for an upbeat way to end this post, but I don't have one. I miss my son, my brother, and I really miss my husband. I hate Alzheimer's Disease.