Monday, November 29, 2010

Mondays are hard after a holiday! I think they are hard for Dad, too. He did get up this morning to use the bathroom, just in time for me to get him dressed. That helped. He pleasantly undressed and then put on his t-shirt, shirt, depend, pants, belt, watch, and hearing aid with some assistance from me. Then he sat at the bar and took his medicine with his juice. He was drinking a cup of coffee and looking at yesterdays paper when I left for work. I picked him up at Life Care about 5:15. Only one other person was still waiting for their caregiver. He seemed happy, sitting in a chair with his coat on. We went to straight Mudbones, because Simon was playing the guitar again. Dad watched everyone and read the menu over and over. He smiled at me a lot and winked. He ate a vegetable plate. After he ate, Van took him to the bathroom to clean his teeth. We stayed for a couple of hours and then I decided we ought to head home. Dad got up with me and holding my hand, walked toward the door. As soon as I opened the door, the cold air came in and Dad decided he didn't want to go out. He pulled me back and said, "I don't want to go out there." I said, "We have to go home." He pulled me again and said, "I'm not going out there." We struggled back and forth for a minute. Our friends in Mudbones, saw my dilemma and smiled and laughed. I laughed too, continuing to try to get him to go out the door. Harry saw me and came to help, but we still couldn't get Dad to go out. Peter came to the rescue and finally got Dad to go out with me! When we got home, Dad didn't want to get out of the car. I told him it was getting colder and it looked like rain, and he needed to come in the house. He said, "I'm okay right here." I told him we needed to go in the warm house and get a blanket. He didn't like it, but he let me help him get out of the car and in to the house. "Lordy, Lordy, Landlordy!!!" Susie

Sunday, November 28, 2010

Well, the Thanksgiving holiday is coming to a close. It has been really nice to sleep in, both for me and for my dad. I got a lot done as well. My friend, Pam, helped me decorate my Christmas tree last night and I finished most of my other decorations today. I don't go all out; just put a few sentimental things around. My Christmas tree is beautiful. It has lots of colored lights and it's loaded with ornaments. Dad enjoys sitting in his recliner and looking at it. He wasn't interested in helping us decorate it, though! I got his medicine ready for the week and his clothes ready for tomorrow. I just finished giving him a shower. It was so funny tonight. I decided not to wash his hair, so after I made sure he used soap on his face and then on his body and bottom, I sat in the bathroom and read the paper while he finished up. He would peek out around the curtain. I would say, "Are you finished?" He would say, "No, not yet." In just a minute, he would peek out again, and again I would say, "Are you ready to get out?" He would say, "No, not yet" or "Almost." I think he did that about 15 times before he was ready. After I got him to shave and brush his teeth, we sat at the bar for a while. I decided to have him go through the picture cards. He correctly named 44 out of 87 pictures. I noticed more difficulty with his word retrieval. He said corn for lettuce and band for bus. He said knife for pen and for scissors. He called cheese, ice cream and said transfire for firetruck. Some of the pictures he was not able to name last time, he could name, and vice versa. Last night, after I got Dad in bed, I took his blood sugar. I dispose the needle and strip in old medicine bottles. As I was doing that, the bottle fell over and the needles and strips hit the floor and went everywhere. I got down on the floor and was reaching under the bed and under the chair to get them all up. When I finished, I looked up and Dad was looking at me with this big smile on his face. He said, "Susie, what are you looking for?" It was so funny that I didn't even realize he had been wondering what on earth I was doing! Back to work tomorrow......... Susie

Thankful Heart

I'm thinking about Alzheimer's. I'm thinking about how my Dad's stage in this process is different from many and yet the same as most. Dad's progression with Alzheimer's is ever so slow. I think it has been so slow, that Dad has known he was getting Alzheimer's and knew what that process meant in many ways. I also believe that for my dad, he has always been a happy person, a true soul, a giver. I think it has made a difference in his disease. With medicine, he was brilliant because it never bothered him to say he didn't know something. And he always knew when he needed to know more. As I watch him each day, I see slight changes in all his abilities. His walk is much, much slower. It is a shuffle most of the time. He doesn't want to exert energy to do certain tasks, such as getting up out of his chair, or getting dressed, or even walking to the bathroom. He sits to eat, and eats way too fast, pocketing food in his cheeks. He does clean his mouth out, along with his teeth. He is less and less engaged with things around him; the books, newspaper and magazines. He drifts more and more to his recliner, and sleeps more and more. He has more episodes where he says things repetitively, such as "mini, mini, mini, mini, mini." He knows us less and less. But it also amazes me how brilliant my dad is with his Alzheimer's Disease. It's like he keeps hanging on in there, reaching us in every way he can. What a sad disease. What a sad, sad, disease. Our family is so fortunate that Dad is still happy and still tries to be happy. When things happen, like today, I was changing his depend in the bedroom and he started peeing on the floor, you just have to realize that this is part of that whole process. My mom went through lots of the process of Dad's dementia. I think back now about how it really wore on her. Dad use to take his truck over to his friend's houses. My mom loved it because it gave her a break! When Dad got to where he was having trouble getting home, Mom knew it was time for her to take his license. That was hard, not just for my dad, but also for my mom. I wish I had known to give my mom one day a week to care for Dad. Just a break. That's why I'm thankful this holiday season for my family and friends and all the support they give me as a caregiver..... Susie

Friday, November 26, 2010

I guess I've taken a respite from blogging! Our computer has still had some issues. Also, I've been busy with the Thanksgiving holidays and just needing to chill out. My back and neck has still been bothering me. I've decided it's stress! Really, I think some of the things I do, is having an effect on my back. When I think about it, I bend over a lot when I dress and undress Dad and when I change him and when I get him up from sitting and in and out of the car, etc. I'm going to get it checked out next week. We've had a good week. On Monday night, Simon played the guitar again at Mudbones. I took Dad and he enjoyed the crowd there. A friend of mine had her grandbaby there and brought him over to Dad. Dad's eyes lit up like a Christmas tree. His smile was beaming as he sat and looked at the baby. He would say "ooooo, oooo, ahhhhh, ahhh," and raise and lower his eyebrows and laugh. It was precious. You could see a connection there with them, like going back in time for Dad. Right after my friend left the table, I said, "You liked that didn't you?" Dad said, "Liked what?" I said, "Liked seeing that baby!" Dad said, "What baby?" It's amazing. I ordered Dad a vegetable plate for supper. It was the 2nd anniversary party at Mudbones and a buffet was set up. After Dad ate, he kept trying to get up and walk toward the bar to get food. We had to keep stopping him. Once he got pretty determined to make it over there and kept trying to get by me. I decided it was time to take him home. It was a good thing because when we got in the car, I could smell him. He had a major poop! I changed him and cleaned him up when we got home. Peter kept Dad on Tuesday and David kept him Wednesday. I got some things done and started back going to yoga on Tuesday. Yea!! I hope it will help my back. On Wednesday, Dad went to Life Care and Zeb and I went to Boone to do some things. We got a Christmas tree on the way home. Later, we went to a party and had a great time. Simon picked up Dad at David's and Papaw sat while Van and I went to hear music at Barley's. We had a great Thanksgiving day yesterday. We went to Van's aunt's house at 1:00 and to Betsy's at 7:00. We took a short nap in between. We had a great visit with our families! Today we just hung out and relaxed. No shopping for me!!! A good friend, who used to stay with my Dad, came to visit us. She has moved to Kentucky. She helped us care for Dad for about a year and a half. It was great to see her! Hopefully, now that I have taken a little break from blogging, I can get back at it!!! Susie

November 21, 2010

Simon got our computer up and running this afternoon. I have had a really busy weekend. Zeb came home for the weekend and brought several friends from App with him. They were all racing in Hendersonville on Saturday and Sunday. I cooked dinner for everyone Friday and Saturday night. I feel like I've been cooking all weekend! We had a really good time and it was great to get to spend time with Zeb and his friends. Dad pretty much just hung out all weekend. He didn't interact much with everyone. He would respond to people but he usually sat in his chair. He said the Lord's Prayer for everyone last night. At the end, he said as usual, "Forever and ever and ever and ever... Amen, Amen, Amen, Amen.... It was great. I went to church after all the kids left. When I got home, Van had cleaned the kitchen - bless his heart! Right after I got home, I was putting clothes in the wash and heard Van yelling. Dad had gotten out of his chair and had walked to the front door and was peeing on the floor. I got him to the bathroom and helped Van clean it up. I fed Dad lunch and then he sat outside in the sun. After I finished a few chores, I went outside to sit with him. I've been so busy this weekend that I felt like I had not been able to spend much time with Dad. I clipped my nails and then his. While I was filing my nails, Dad asked, "Whose house is this?" I told him it was mine and Van's. He asked, "Who lives in that house?" I told him he and Van and Simon and I lived in the house. He said, "It's a nice house, how long have you had it?" He kept asking those same questions over and over. After supper, I got Dad in the shower. I have learned that I do much better when he knows nothing about it. I guess I almost trick him. I took him back to the bathroom and had him undress piece at a time. He seems to be so focused on what I'm asking him to do that he doesn't realize I'm getting him undressed for the shower. Once he's naked, I have him step in to the tub. He doesn't want to, but I have him feel the warm water and he ends up being okay with it! He took a good long shower and I washed his hair. I got him back in his chair and he's been saying some unusual things. He asked me to get him some ginger ale. He hasn't asked for ginger ale in ages. He kept asking Van about the football game, like who was playing. Then he would say, "Well, it doesn't matter anyway." Once he called out "Ann." He hasn't done that in quite a while either. I'm ready to get him in the bed. Thank heavens I only work two days this week. I'm looking forward to the Thanksgiving holiday!........ Susie

Thursday, November 18, 2010

Dad had an eye appointment yesterday afternoon. When I got to Life Care, he was sitting in a recliner with other folks all around. I asked if he was ready to go and he said, "Go where?" I said, "You have an appointment with the eye doctor." He said, "Oh hell." Everybody laughed. We walked out to the car and I opened the door for him and as usual he said, "Do I get in here?" As we started off, he asked again, "Where are we going?" I told him and he said, "Why are we going to the eye doctor?" I explained he had a place on his eye that was bothering him and the doctor was going to fix it. He said, "Bullsh*t". I thought, "Oh goodness, he is really full of himself today - no telling what will happen at the doctor's office!" We didn't wait for long to get in a room. The nurse asked us some questions and then said "The doctor will be in shortly." Dad said, "Who?" She repeated and Dad said, "What Dr.?" While we waited, Dad kept counting the numbers that lit up. He would say "123-456", 123-456, 123-456...." over and over. He got louder and then he whispered. Then he started picking up the instrument that has a light and he would try to turn it on. He would hold out his hand to see if it was shining. Then he would forget where he got it and hand it to me. I would show him where it went. A minute later, he would do the same thing again. Then he reached over to the light switches and turned the lights on and off. He would look over at me and smile. Lately, when he is waiting for something he will crease his pants up at the top of his thigh and press the crease over and over. After we saw the doctor and made an appointment for surgery, we walked toward the receptionist desk. He reached over and opened the case that holds the fire extinguisher. Someone stopped us in the waiting area and asked me if that was Dr. Lane. They were excited to see him and said he was a great doctor. After Dad and I got back in the car, Dad looked over at me and said, "Susie, thank you for everything you're doing." I couldn't believe it! I took out my paper and wrote it down......... Susie

Tuesday, November 16, 2010

I picked Dad up at Life Care and we went to Mudbones for dinner. Simon was playing guitar and lots of friends and family came to cheer him on. Dad enjoyed being in the crowd. After he ate, Van took him to the bathroom to clean his teeth. We stayed for a couple of hours and then headed home. When we got home, I was going to have him put his pajamas on but he did not want to take off his fleece vest and he said he didn't want to change. I left him in his clothes, put on his house shoes and he sat in his recliner and watched Dancing with the Stars, which he likes. I got some things done around the house and decided to go to bed around 9:30. I went ahead and got him in bed. I got up twice during the night to change him and both times it was pretty easy. He got up readily this morning as well. Thank heavens! That does make things easier! Peter will be picking him up tonight for dinner. I have a hair appointment and my computer at home has crashed so I'm fixing to leave work and will have to share more tomorrow!..........Susie

Monday, November 15, 2010

Respite care is wonderful for caregivers. Although I didn't sleep well on Wednesday night, I did sleep better on Thursday, Friday and Saturday. The rest made me feel rejuvenated and we really enjoyed spending time with Zeb and seeing his bike races. He did great!!! Because his last race yesterday was at 2:30, Betsy picked Dad up at Black Mountain and took him to her house for dinner. She met us at our house around 7:30. Right after she and Dad came in, we were talking and Dad was sitting at the bar. I looked over and Dad had stood up and was unzipping his pants. I shouted, "What are you doing?" and Dad said, "I need to pee!" I grabbed him and said, "Let's go to the bathroom!" He said, "But I need to pee!" I took him in the bathroom and told him he needed to pee in the toilet. He did, but when he came out, the back of his pants were soaking wet. I took him back to my bathroom and also realized he had pooped. I could tell they probably had not been able to get him in the shower at Black Mountain. I got him undressed and to his dismay, in the shower. He took a good shower and I washed his hair and got him in his pajamas. Then he sat in his recliner. Betsy and I didn't even get to talk, because she had to leave. During the night, Dad got up four times. He used the bathroom a couple of times and I changed him twice. He never got real wet, which was good. Every time I got him back in bed and turned the lights out, he would say, "Turn those lights on!" But I didn't. The first time I tried to get him up this morning, he pulled the covers back over himself and said, "I'm not ready to get up." I went in a few minutes later and tried again and he got right up. He seems to be catching a bit of a cold as he was sneezing and blowing his nose a lot last night. I'm going to pick him up in a minute and take him to Mudbones for dinner. Simon is playing the guitar there again tonight. Hopefully, Dad will get back in his routine and sleep better tonight!!!! Susie

The Doctor's Waiting Room

Earlier, I made note of an incident that happened at a doctor's office in Marion. I think I need to preface the story by saying that many caregivers face times which are uncomfortable or embarrassing, but which are part of the dementia process. For my dad, something started right after my mom passed away. For several months, he kept using the p*ssy word. He would say he needed some p*ssy to caregivers or he would make comments out in public about it. There is nothing you can do! When the word comes out, you hope people don't hear it, or at least are not paying attention! With this episode, the time had really passed that Dad was using the word. But about a year ago, I took him to the doctor. We were sitting in the waiting area and I gave Dad a magazine to look at. He was reading the captions of all the pages, out loud, of course. People would look over at me and smile. This day we had to wait longer than usual, about 20 minutes. He was reading through his third magazine, saying things like, "GMC Terrain, seating for 5 adults." or "Reezig, the energy drink for your feet" and so on. At that moment, the door from the doctor's rooms opened and an elderly lady walked out and proceeded to the receptionist window. Dad looked up from his magazine and said aloud, "I wonder how her p*ssy looks!?" Well, I almost died! I wanted to slither under my chair. I looked at Dad with a cross look. He went right back to reading his magazine. Fortunately, he was called back to see the doctor right after that! What do you do? What can you do? Caregivers are dealing with this at different times. Fortunately, my dad hasn't used that word in a long time and I think it has left his repertoire! Now my dad really just says the same things in response to people and in greeting people. The only time he says unusual things is maybe when he is dreaming or right after he wakes up; then what he says often doesn't make sense. I think it's important for people to know that many caregivers are dealing with these kinds of situations and when people hear strange things such as this, they might remember this! Thanks!....Susie

Friday, November 12, 2010

Van, Simon and I are in Boone visiting Zeb. We will be here for the weekend to see his bike races tomorrow and Sunday. Dad has been at Black Mountain Neuromedical Center for a respite visit since Wednesday. Van took him up. When he asks Van where they are going, Van tells him that he's going to the Black Mountain Motel for a visit. Betsy is planning on picking Dad up on Sunday so we can stay for Zeb's race at 2:30. Since Dad was going to be gone, I decided to have a little drop in at my house on Wednesday. It was lots of fun, but I thought, "Why do I do this to myself?" I have a little time off and decide to work cooking and cleaning for a drop in! Just shoot me! Anyway, I've had this weird thing going on with my back and neck and headaches for a little over a week. I'm beginning to think it's a virus. On Wednesday night I thought it would really be nice to get a good night sleep. I wouldn't have to get up to change Dad and could sleep as late as I wanted. I turned off my cell phone alarms that I've been using to wake me at 1:00 and 3:00 to change Dad and my clock alarms that wake me in the morning at 5:30 and5:40. Well, my back hurt and I didn't sleep well. I kept waking up. I did stay in bed until almost 9:00. I got up and planned to do some things around the house. Then Zeb called with car trouble. I ended up spending some time with him and his roomate, Derek because he brought his car to Rutherfordton. We had lunch together. It was nice. I got a few things done in the afternoon. Then last night I had another headache and went to bed at 9:15. This morning I opened my eyes and it was getting light. I looked over at the clock and it was 6:45! I couldn't believe it! I had 15 minutes to leave for work! I had forgotten to turn my alarm back on! I didn't even take a shower. I pulled my hair back, threw on some makeup and headed out the door! I guess I got that hour of sleep I complained about not really getting! It is nice to have a few nights that I can sleep, or try to sleep through the night. It reminds me of when I had children and I never felt like I got a good night's sleep. I know Dad is being taken good care of and that makes me feel better. I'm looking forward to tomorrow and seeing Zeb's race.......... Susie

Tuesday, November 9, 2010

Simon had a soccer banquet last night. I had a meeting after school and didn't get home until after 5:00. Our sitter picked up Dad at Life Care and brought him home. I got his sheets changed before I left. After the banquet, Van and Simon and I ran by Lowe's and Burke's Outlet. We got home around 9:00. Dad had done great while we were gone and was cozy in his recliner. When I told him it was time to go to bed, he said he just wanted to stay in his chair. I told him I had to go to sleep. He said, "You go ahead, I'm gonna stay right here." Often, I will tell him I need his help doing something and he will usually concede - which he did. I got him in bed at 10:00 and went to bed myself. I got up at 1:00 to change him. Evidently, he had pulled off his dry depend and had decided to sleep in the nude. His sheets were soaking through to the mattress cover. I had to pull everything off the bed. Dad kept trying to lay back down on the bed as I was changing it and I would have to tell him to get up. I got new sheets and covers on the bed and started washing the dirty ones. This morning I went to get him up and he said he wasn't ready to get up. I told him we had to get to work and he decided he would get up. He will be going back up to Black Mountain for a respite visit again tomorrow. We are planning to visit Zeb at Appalachian and watch his bike race this weekend. I have lots to do tonight to get his things ready. Hopefully, while he's gone I'll be able to fill in my blog with some other stories!!!! Susie

Sunday, November 7, 2010

I have some catching up to do! My sister, Marie, came last Wednesday from Dallas. My dear college friend, Maria, and her family came Friday and stayed the weekend. Everyone left today. We have had a great visit! Dad enjoyed seeing Marie and I know Marie enjoyed spending time with Dad. On Thursday, Peter invited us over for supper. I had a horrible headache, so I stayed home with Dad and Marie, Simon and Van went to Peter's house. After I fed Dad his supper, he was sitting at the bar. Marie had picked up some paint samples for me. The paint was in small, pint size plastic containers that had a handle and a plastic lid. They were sitting on the bar. The phone rang and I went over to sit on the couch and talk. When I walked back over to the bar to hang the phone up, Dad was screwing one of the paint lids back on the bottle. I looked at him and he had a light green circle around his mouth! I told him to stick out his tongue, and sure enough, it was covered in light green paint!! I couldn't believe it! I said, "Did you drink some of that?" and he said, "No!" (Bologna!!!) The bottle did say to call poison control, but I knew he had only taken a swallow. I called Van at Peter's house. I decided to give him a big glass of water, which he drank. My, my, my!! Simon picked Dad up at Life Care on Friday so that I could get groceries and come home to start supper. Marie and I got to walk down to the pond and spend some time together before everyone got home. Then I grilled hamburgers and made homemade French fries. We all ate together around the table and Dad said the Lord's Prayer for us. On Saturday, Simon stayed with Dad while Marie, Maria and I went to the flea market and few other sales. When we got back home, we ate lunch and did some things around the house. Once, I was making Dad's bed and when I went back in the living room, he wasn't in there. Maria thought he was in the bathroom. She had heard a horn blowing. We looked outside and he was sitting in Simon's car, blowing the horn. I went out and he said, "Where are the keys?" I told him Van had the keys. He said, "Where is he?" I told him Van was playing golf. He said, "Well, I guess I'll have to go later." Then I got him out of the car. Later, Simon and Marie told me he was telling them that he thought his time was up and he was ready to go. Another time, Simon went in his room and Dad told him he was looking for his keys. He was trying to open the china cabinet. After everyone went to bed last night, he kept getting up. Van or I would get him back in bed and a few minutes later, he would get up again. He finally stayed there! I made everyone a big breakfast this morning. After everyone left I did some washing and cleaning and then just hung out with Dad and watched a movie. I got him in the shower after dinner. He did pretty good. I just have to make sure he doesn't know the plan until he's mostly undressed. I washed his hair and told him to wash all his parts. Then he actually stayed in the shower for a while. Every time I asked if he was finished, he would say "almost." We got an extra hour last night, but unfortunately I didn't get it in sleep! I'm going to hit the sack!.......... Susie

Wednesday, November 3, 2010

Peter picked up Dad at Life Care yesterday afternoon. Van and I ran some errands and ate dinner with friends. When Dad got home, he sat in his chair at first but then wanted to walk around the house. When I sat down on the couch, he decided he would sit down. We watched some TV and I fell asleep. I got him in bed at 10:30. I set my alarm to get up at 1:00 and 4:00 to change him. At 1:00, I went in and woke him up and told him I needed to change him. He said, "No, I don't need to." He was soaking wet. I told him he did need to. He pushed me away and kept trying to pull the covers over him. I told him he needed to stand up and change his pants and I would let him lay back down. It was a struggle back and forth. He was determined that I was not going to change him and that he was going to lie down and get the covers back on him. Out of frustration, I finally tore his depend on both sides and it fell off. Then I had to make him sit up so I could put another on him. At 4:00 I went in to change him again. I said, "Dad, I need you to stand up so we can change your pants. He did so with no trouble at all. We changed his depend and t-shirt and he laid back down and went right back to sleep. Go figure!!! He was a little ornery this morning, too. He didn't think he needed a new depend. I told him it was wet and he pulled it out to see. About that time he started peeing. The depend soaked it up. I got him washed up and changed. He went to the bathroom and washed his hands and brushed his hair. When he came to the bar, I had his juice and medicine ready. He said he didn't need his medicine. He kept counting his pills over and over. Van and I both told him to take them, and he kept saying, "No, not now" or "No, I don't need them." He finally took them. Marie came from Texas today. I picked Dad up at Life Care and went home to cook dinner. Peter also came over and we all had a great time with each other and with Dad. After dinner, Marie showed Dad lots of old pictures of him and his mother and grandparents. He would say, "That's ole Harold Compton" or "I don't know who that is." Marie will be staying with us for several days to spend some time with Dad..... Susie

Monday, November 1, 2010

We had an eventful evening! I picked Dad up at Life Care at 5:00 and we went to Spindale to Mudbones Restaurant. Simon was making his debut playing the guitar! Dad and I sat at the back table. Lots of friends came to hear Simon. It was a great time with great food. I got Dad a vegetable plate, as usual. He loves it. While we were waiting for his meal, my friend Meg came over to talk to us. We had Dad spell some words. He correctly spelled medical, pediatrician, aspirin, school, children, Rutherfordton, North Carolina, Duke University, Chapel Hill, pneumonia, California, spina bifida, meningitis, and Forest City. He spelled guitar - gitar and missed a syllable in Mississippi. He couldn't tell us the names of his children, but he did spell them when I told him. He could tell us his mother's name and spell it, but not his wife's name. He was not able to tell us his birthday, but did spell it when I told him. After he finished eating, Van took him to the bathroom so he wouldn't pull out his teeth and clean them off. Then he read the menu over and over. I moved a table behind him to talk to Tammy and Tim. We looked over and Dad had the barbecue sauce bottle, drinking from it! Then he got up and walked around. He stopped at the table where Van was sitting and picked up a beer and took a drink. I tell you, if it's in front of him, he will drink it or eat it! Simon moved to the bar stools to play for a while and Dad went up and sat next to him. He was really enjoying the music and being there. When I tried to get him to leave, he didn't want to. I got him up about 7:45 and we headed home. He didn't say anything on the ride home. I think he was worn out! When we pulled up to the house, I said, "We're home! Let's get out." He said, "I want to stay here." I told him we needed to go in the house and he told me he wasn't going to get out. I took my things in and let him stay outside for a few minutes. Then I went back out and told him it was going to get cold and he needed to come in. He let me help him get out of the car. I got him changed and in to his pajamas and gave him his medicine. He's now in his recliner in front of the TV, but probably sleeping! It's been quite a night!! Susie