Those of you who have been reading this know that Daddy is moving to the Alzheimer's facility tomorrow called The Lantern. Today, my sisters and I made the bed, moved furniture, and hung pictures, clocks, Dad's stuffed pheasant and the like. Mom stopped by, while Dad was with a caregiver, and said that Dad just might find a girlfriend there since he'd told her that he wasn't married. She laughed about his comment. She doesn't think this will upset her. I can't imagine, if it does happen, that she won't be distressed. Even if he is gone in mind, I think I would be rather peeved if Jeff found a new girlfriend after we had been married for 52 years. Although, I guess that is better than the men who decide they want to trade for a younger model after that amount of time. Those men seem to have their minds they have just lost their good sense.
The room looked nice when we finished. We even hung, in the bathroom, his painting of a parrot that he did on a cruise he and mom took several years ago. I'm still trying to clean out here at the house in which we are living and hanging pictures here too. Even though Mom says it is our house now, that feels very awkward to me. Perhaps because so many of her things are still here. I can't quite bring myself to do too much changing. I think that would be admitting somewhere deep inside that she really isn't coming back. Intellectually, I have accepted this as a possibility, even a strong possibility, but deep inside I want my mother to be here, hugging my kids, making me crazy, and most of all loving her life. I'm not ready to let her go. I don't think I will ever be ready. But unless someone hands me a magic wand or a healing stick, I'm pretty sure I don't get a say.
On an upside, I did get to go to Ankar's Hoagies today with my sister and nephew. This restaurant has the most phenomenal steak in a sack I have ever had the pleasure to consume. I was never able to find its equal in Knoxville. So if you are passing through, stop and grab a pita full of meat and onion deliciousness at Ankar's. Don't bother telling them Nancy sent you because they have no idea who the heck I am.
Sometimes a swift kick in the behind is just what I need to get myself going. Other times I'm whistling along the road and a random kick from the universe knocks me into the ditch. So this is about those kicks in writing/publishing, family, and life. I bet you've had some kicks in the pants too.
Monday, January 31, 2011
Sunday, January 30, 2011
A Day of Rest
We took the family to Mom's church again today. While I can't quite climb on board with some of the Baptist beliefs, it looks like we may make this our church home. Even though Mom hasn't said it, I know one thing she wants to see is her church growing before she dies. She was part of a huge church split many years ago. It is only in the last year, she and Dad rejoined. That is something I can help do, at least we can increase it by four. After all, Jeff and I got married there and many of the members have known me since I was five. Plus, they have a new, young pastor so we will see. We certainly got spiritually refueled today.
Mom needed me to drive her, Dad, and the two elderly women she drives to church, home today. Mom drove there but then said she felt too dizzy. I'm thinking it's fortunate she didn't get pulled over on the way to church. That's all we need is for Mom to get a DWI because of her pain meds. Jeff was in such a good mood today. It was nice to sit in church, holding hands, and then take communion together. Although, Jeff wanted to know what I was hiding since I got choked on the communion grape juice.
We came home and began cleaning out more of Mom and Dad's stuff upstairs, old receipts, bank statements, an old will of Mom's. Then I came across a calender from 2006. It was Dad's from only five years ago. In the month of January, the calender was full of tennis, Gideon meetings, church functions all in his distinctive slashing writing. Then as the months moved forward, the writing became messier, more disjointed, the appointments became fewer. It was like a timeline of the progresion of his illness. I told one of my friends about it and she asked if I kept it. Not only did I throw it away, I tossed it like the paper was acid. While I can recognize the value of hisotry, I don't want to remember that slow progression into the blankness that he now exists in most of the time. Maybe someday later, I'll be sorry I didn't keep it but not today. Tomorrow, we go to decorate his new room. I hope he likes it.
Mom needed me to drive her, Dad, and the two elderly women she drives to church, home today. Mom drove there but then said she felt too dizzy. I'm thinking it's fortunate she didn't get pulled over on the way to church. That's all we need is for Mom to get a DWI because of her pain meds. Jeff was in such a good mood today. It was nice to sit in church, holding hands, and then take communion together. Although, Jeff wanted to know what I was hiding since I got choked on the communion grape juice.
We came home and began cleaning out more of Mom and Dad's stuff upstairs, old receipts, bank statements, an old will of Mom's. Then I came across a calender from 2006. It was Dad's from only five years ago. In the month of January, the calender was full of tennis, Gideon meetings, church functions all in his distinctive slashing writing. Then as the months moved forward, the writing became messier, more disjointed, the appointments became fewer. It was like a timeline of the progresion of his illness. I told one of my friends about it and she asked if I kept it. Not only did I throw it away, I tossed it like the paper was acid. While I can recognize the value of hisotry, I don't want to remember that slow progression into the blankness that he now exists in most of the time. Maybe someday later, I'll be sorry I didn't keep it but not today. Tomorrow, we go to decorate his new room. I hope he likes it.
Saturday, January 29, 2011
falling short of the goal
Each day for just a moment when I wake up, there is the possibility of a great day. Sometimes that possibility lasts only as long as it takes to wake the children, other times it extends until the first crisis. What I've discovered is the longer Mom's cancer eats at her, the smaller the event has to be for me to term it a crisis. This is taking a toll on my parenting and my marriage. I've always considered myself an easy-breezy kind of gal. But I'm afraid I'm not fun anymore. Everything seems to come back to Mom's illness. Sometimes, I find myself wanting to just inerject it into random conversations. So far, I'm resisting the impulse but it's there. It looms so large in my life now that I think it ought to be obvious by looking at me. A visible token like Hester Prynne's scarlet A or Pigpin's dirt cloud (very different examples from the literary spectrum, I realize). Then every once in awhile, I let myself forget.
Today, at the kids' basketball games was one of those times. I talked to Mom at the beginning of my son's game and she said she still felt dizzy. I offered to pick her up but she said she just wanted to stay home so I didn't think much more about it. It was loud in there and my girl did so well. My oldest sister came to see her game. But when I got out of the gym, I saw my mother had tried to call me seven times and I hadn't even checked my phone. There were no messages. When I tried to call her apartment, the answering machine picked up.
Turns out, they were delivering Dad's furniture to the Lantern and she needed someone to be there to meet the truck but wasn't able to get a hold of me or my sisters. When I did talk to her, the first thing she said was, "I'm glad I wasn't dying since I couldn't reach any of you." I didn't even know how to respond. It felt like she threw an anvil at my head and it landed square on my shoulders to carry around for the rest of the day. I'm sure she didn't intend to be so heavy in her comment. No doubt she had felt that way. I can't imagine how alone she must feel in all this. I'm doing the best I can. I hate it when I feel I fall short.
Today, at the kids' basketball games was one of those times. I talked to Mom at the beginning of my son's game and she said she still felt dizzy. I offered to pick her up but she said she just wanted to stay home so I didn't think much more about it. It was loud in there and my girl did so well. My oldest sister came to see her game. But when I got out of the gym, I saw my mother had tried to call me seven times and I hadn't even checked my phone. There were no messages. When I tried to call her apartment, the answering machine picked up.
Turns out, they were delivering Dad's furniture to the Lantern and she needed someone to be there to meet the truck but wasn't able to get a hold of me or my sisters. When I did talk to her, the first thing she said was, "I'm glad I wasn't dying since I couldn't reach any of you." I didn't even know how to respond. It felt like she threw an anvil at my head and it landed square on my shoulders to carry around for the rest of the day. I'm sure she didn't intend to be so heavy in her comment. No doubt she had felt that way. I can't imagine how alone she must feel in all this. I'm doing the best I can. I hate it when I feel I fall short.
Friday, January 28, 2011
Not much new in this blogosphere
Mom continued to feel woozy today but did say her stomach pain was considerably less. I thought we were going to Cleveland today (mom loves Scott's furniture because she thinks they have good prices) to get Dad furniture for his room. I called Mom around 9:30 but she wasn't home. She'd had Dad's caregiver take her instead of me. Turns out when I talked to my sisters, each of them had thought mom wanted them to take her so maybe we were all on stand-by. More likely she forgot. I have noticed things slipping her mind more frequently. It may be the pain meds or it may be how much is going on in her life. She gets very irritated if I suggest she has forgotten something though so I just try not to mention it. The social worker from Hospice came today and I wonder if Mom will remember what they talked about. That is the reason I like to be there for the appointments so I can get the full story.
Mom did report that Dad is no longer walking crooked so we don't know what that was about. I have been looking about this house for things for Dad's room. I think I have a pretty good selection in mind. His hunting pictures, military awards, framed diploma. They did suggest that we not bring his sword. That would be a administrative nightmare to have a bunch of Alzheimer's patients dueling it out with swords. I figured we could put in some pictures of their wedding, maybe his family and we got a picture of almost the whole family a couple of summers ago. Tomorrow, we are moving stuff into Dad's new place. We aren't moving Dad in yet so I don't know what kind of feelings putting his stuff in will bring in Mom or the rest of us. For now, I have to get to bed. Both the kids have basketball games tomorrow and one of Kelsey's besties is coming from Knoxville to spend the night. That is always simultaneously wonderful and sad. She and Christopher miss their friends there so much. But being here makes me realize how much I needed to come. I can't imagine trying to manage all this from Knoxville. If I have a day with nothing to say, I'll add the story of how God moved us here. Seriously, there had to be some divine intervention. So goodnight all and I'll type at you tomorrow.
Mom did report that Dad is no longer walking crooked so we don't know what that was about. I have been looking about this house for things for Dad's room. I think I have a pretty good selection in mind. His hunting pictures, military awards, framed diploma. They did suggest that we not bring his sword. That would be a administrative nightmare to have a bunch of Alzheimer's patients dueling it out with swords. I figured we could put in some pictures of their wedding, maybe his family and we got a picture of almost the whole family a couple of summers ago. Tomorrow, we are moving stuff into Dad's new place. We aren't moving Dad in yet so I don't know what kind of feelings putting his stuff in will bring in Mom or the rest of us. For now, I have to get to bed. Both the kids have basketball games tomorrow and one of Kelsey's besties is coming from Knoxville to spend the night. That is always simultaneously wonderful and sad. She and Christopher miss their friends there so much. But being here makes me realize how much I needed to come. I can't imagine trying to manage all this from Knoxville. If I have a day with nothing to say, I'll add the story of how God moved us here. Seriously, there had to be some divine intervention. So goodnight all and I'll type at you tomorrow.
Thursday, January 27, 2011
ch-ch-changes-turn and face the strange
Today, was the first day of the Hospice medication change and so far it is a clear thumbs down. Mom is nauseated and having stomach pain. In addition, she feels woozy and unable to drive. She had a caregiver come to stay with Dad this afternoon but said she didn't need one for tonight. She added that she didn't understand why people would ever break into a pharmacy to feel the way she is feeling. She thinks the meds are too strong but her nurse said her body is just adjusting. Not sure I like the nurse's response. I guess I will have to reserve judgement until I see if Mom does indeed adjust.
I forgot to mention yesterday that since she has stopped chemo, Mom had enough hair to get a haircut. My two sisters and I went with her to the beauty shop. Her hair has come back in very dark. I thought when the hairdresser finished Mom looked great, other than the fluorescent lights which had me wondering why I hadn't put on more blush and lipstick. It is a much shorter style than Mom has every worn which I guess is why she plopped the wig back on top of her head. Although, I have to think, knowing that her hair looks fine without a wig now has to be some comfort for her. Dad joined all four of us, the three daughters, and Mom, for lunch at the Bistro downstairs in their complex. It didn't hit me until right now that I can't remember the last time the original family sat together without any husbands or children or friends attending. I wonder, with Dad moving next week, if that will have been our last meal together for just the original five. It seems like we ought to have marked it with some ceremony. Instead, Cindy and I rushed off to teach class and Sharon had to go pick up her daughter from school.
Last night, Mom had my kids over to swim since one of the perks of her place is the indoor pool. After the swimming, she went through one of the photo albums with my children (at their request) telling them about all the people and animals in the pictures. I wished I had brought the video camera since I know the memory in my brain is so faulty. The kids were up way too late last night but I couldn't bring myself to pull them away. They will have lots of time for good night's sleep but not so many to bask in their grandma's memories.
My daughter wrote her other grandparents a letter last week. We have not had contact with Jeff's parents for ten years. I assumed they would ignore the letter as they have multiple cards from Jeff and updates on the children from me. Instead, we got a phone call from his brother to relay a message. She wanted to know the motivation behind the letter. Jeff and I felt pretty speechless, there was no motivation. Jeff finally stammered out that it was probably because her Nana was dying and she wanted to reach out. His mother said she would respond to my daughter this time but not to expect further communication. Jeff seemed pretty shaky the rest of the day. The whole affair twisted my stomach in a way it hasn't moved since we were trying to have a relationship with them before. Ah, the timing of family angst. I think it could be better, I'm just saying.
I forgot to mention yesterday that since she has stopped chemo, Mom had enough hair to get a haircut. My two sisters and I went with her to the beauty shop. Her hair has come back in very dark. I thought when the hairdresser finished Mom looked great, other than the fluorescent lights which had me wondering why I hadn't put on more blush and lipstick. It is a much shorter style than Mom has every worn which I guess is why she plopped the wig back on top of her head. Although, I have to think, knowing that her hair looks fine without a wig now has to be some comfort for her. Dad joined all four of us, the three daughters, and Mom, for lunch at the Bistro downstairs in their complex. It didn't hit me until right now that I can't remember the last time the original family sat together without any husbands or children or friends attending. I wonder, with Dad moving next week, if that will have been our last meal together for just the original five. It seems like we ought to have marked it with some ceremony. Instead, Cindy and I rushed off to teach class and Sharon had to go pick up her daughter from school.
Last night, Mom had my kids over to swim since one of the perks of her place is the indoor pool. After the swimming, she went through one of the photo albums with my children (at their request) telling them about all the people and animals in the pictures. I wished I had brought the video camera since I know the memory in my brain is so faulty. The kids were up way too late last night but I couldn't bring myself to pull them away. They will have lots of time for good night's sleep but not so many to bask in their grandma's memories.
My daughter wrote her other grandparents a letter last week. We have not had contact with Jeff's parents for ten years. I assumed they would ignore the letter as they have multiple cards from Jeff and updates on the children from me. Instead, we got a phone call from his brother to relay a message. She wanted to know the motivation behind the letter. Jeff and I felt pretty speechless, there was no motivation. Jeff finally stammered out that it was probably because her Nana was dying and she wanted to reach out. His mother said she would respond to my daughter this time but not to expect further communication. Jeff seemed pretty shaky the rest of the day. The whole affair twisted my stomach in a way it hasn't moved since we were trying to have a relationship with them before. Ah, the timing of family angst. I think it could be better, I'm just saying.
Wednesday, January 26, 2011
Moving forward
Diabetes sounded great when it was placed next to the possibility of a brain tumor. After the tumor risk was gone, then the diabetes stopped seeming like such a good option. So I was quite relieved when Jeff's doctor called to say he did not have it. Next stop, eye doctor.
Hospice came today to meet with Mom. She seemed pretty excited when she discovered that she never has to go to another doctor's appointment. They come to her, as does a nurse, and a social worker. Her medications are also delivered to her door. Although, she said the new one they put her on is making her woozy. Hopefully, we won't have an issue with Dad sneaking out tonight. That seems like such an odd sentence to write about my father. Mom said she didn't think anyone needed to stay there to watch Dad for her. Here's to hoping she is right. Feb 1st is fast approaching when he will move into the lantern and we won't have to worry about stuff like that anymore. There is this teeny place in my mind that fantasizes that if Mom isn't having to do constant care she will get better. I realize that teeny place is in the state called Denial but sometimes I like to visit there. I'm not so sure it wouldn't be a nice place to live.
Hospice came today to meet with Mom. She seemed pretty excited when she discovered that she never has to go to another doctor's appointment. They come to her, as does a nurse, and a social worker. Her medications are also delivered to her door. Although, she said the new one they put her on is making her woozy. Hopefully, we won't have an issue with Dad sneaking out tonight. That seems like such an odd sentence to write about my father. Mom said she didn't think anyone needed to stay there to watch Dad for her. Here's to hoping she is right. Feb 1st is fast approaching when he will move into the lantern and we won't have to worry about stuff like that anymore. There is this teeny place in my mind that fantasizes that if Mom isn't having to do constant care she will get better. I realize that teeny place is in the state called Denial but sometimes I like to visit there. I'm not so sure it wouldn't be a nice place to live.
Tuesday, January 25, 2011
Rough start but it has to go up, right?
At six this morning, I let the dog out the back door, only to hear the immediate shrieking of my own burglar alarm. You might think this lapse on my part was due to some complicated change but no, I just forgot it was on. Then with the sirens blaring, I could not remember the code. So I had to race to the back, cats and dog scattering out of my way with the cringe-worthy sound of claws on wood floors, my housecoat flying out behind me like a cape, to where I (thank God) have the code written down. Then when the alarm company called she asked, "Do you know why the alarm went off, Mrs. Wahler?"
I considered various lies like blaming it on the children or my husband because they would never know but somehow honesty persevered and I said,"Yes, I opened the door." She was silent because what could she do other than call me some bad name and slam the phone down because she got woken at six a.m. But that probably wouldn't be too good for her job. So after that, I fought with the children in getting them ready,and was thirty min late getting them to school. Then I had a crying jag during which time I called one of my good friends who generously offered to meet this crazy woman for breakfast. She also then came over, helped me take down my Christmas tree and generally became in one day, a shining light to this struggling soul. It is amazing how much the little things help.
Mom and Dad came to my nephew's basketball game tonight. She has eaten some today but still wasn't very hungry. I tried to buy her some popcorn from concessions because she thought it smelled good but she didn't want any. Hospice called and changed the time of the meeting to a time when I can not be there because I am teaching my drama class. I was immediately furious and said to my mother, "Why would you do that?" and then felt horrible for talking that way when she already doesn't feel good. I felt like I apologized for much of the rest of the game. She called me later to say my sister plans to change it because she couldn't be there either. Hopefully, my sister handled it better than I.
After the game, Mom and Dad brought their Christmas stuff back over here to store since they don't have much storage in their apartment. While here, I took out the garbage and Dad wanted to come with me. That made a not so fun task in the rain much harder. His steps were shuffling on the dark driveway so I thought he might feel more secure if he held on to a handle on one side of the garbage can. So I placed his hand there, not knowing that he was going to bear down the whole rest of the way down the drive. Luckily, we didn't have much garbage this week or I don't think I could have handled the weight. I was really glad to get to the end of the driveway though. By that time, my arm muscles were aching and the handles of the garbage can were at about my knee level. So Dad and I were both walking stooped.
I helped him get his seatbelt on when he and Mom left. Every once in a while he can get it but most of the time, he isn't sure how to use the buckle. Mom said last night he had some lucid moments and she talked to him about the move to the Alzheimer's facility. She said he was very understanding and agreed it was probably the best move. I am so glad. Because even though he won't remember, on rough days, Mom will know he was in agreement with the move. I am grateful for this blessing for her and me too. I wish I could have heard him say it.
I considered various lies like blaming it on the children or my husband because they would never know but somehow honesty persevered and I said,"Yes, I opened the door." She was silent because what could she do other than call me some bad name and slam the phone down because she got woken at six a.m. But that probably wouldn't be too good for her job. So after that, I fought with the children in getting them ready,and was thirty min late getting them to school. Then I had a crying jag during which time I called one of my good friends who generously offered to meet this crazy woman for breakfast. She also then came over, helped me take down my Christmas tree and generally became in one day, a shining light to this struggling soul. It is amazing how much the little things help.
Mom and Dad came to my nephew's basketball game tonight. She has eaten some today but still wasn't very hungry. I tried to buy her some popcorn from concessions because she thought it smelled good but she didn't want any. Hospice called and changed the time of the meeting to a time when I can not be there because I am teaching my drama class. I was immediately furious and said to my mother, "Why would you do that?" and then felt horrible for talking that way when she already doesn't feel good. I felt like I apologized for much of the rest of the game. She called me later to say my sister plans to change it because she couldn't be there either. Hopefully, my sister handled it better than I.
After the game, Mom and Dad brought their Christmas stuff back over here to store since they don't have much storage in their apartment. While here, I took out the garbage and Dad wanted to come with me. That made a not so fun task in the rain much harder. His steps were shuffling on the dark driveway so I thought he might feel more secure if he held on to a handle on one side of the garbage can. So I placed his hand there, not knowing that he was going to bear down the whole rest of the way down the drive. Luckily, we didn't have much garbage this week or I don't think I could have handled the weight. I was really glad to get to the end of the driveway though. By that time, my arm muscles were aching and the handles of the garbage can were at about my knee level. So Dad and I were both walking stooped.
I helped him get his seatbelt on when he and Mom left. Every once in a while he can get it but most of the time, he isn't sure how to use the buckle. Mom said last night he had some lucid moments and she talked to him about the move to the Alzheimer's facility. She said he was very understanding and agreed it was probably the best move. I am so glad. Because even though he won't remember, on rough days, Mom will know he was in agreement with the move. I am grateful for this blessing for her and me too. I wish I could have heard him say it.
Monday, January 24, 2011
Sweet relief
Jeff does not have a brain tumor. Woo Hoo! They called him at about 3:00 today and told him the scan is completely clear. Not that we can celebrate together since he is working in Knoxville, which turns out to be not so bad since he is going tomorrow morning to get checked for diabetes. If the diabetes test is clear, he will have his eyes checked. God has given me incredible strength through all this. At the end of last week, I thought I had run out and maybe I had, but if so God lent me some of his. Today, I knew whatever the news I could handle it. I am more than happy to handle this news. I need the energy for my parents. Hospice is coming on Wed to interview Mom. My sister said that patients who use hospice live an average of three months longer. However, whenever it is, I'm not ready to lose my Mom.
I talked to a man the other day who had a mother with Alzheimer's and a father with cancer. Oddly, some part of me felt offended. How dare someone else (besides my sisters) have it as bad as me? Not that I said that, of course, but it surprised me that the thought was even there. I guess I thought I had the market cornered on rough things until life knocked and reminded me that I'm not all that. Don't get me wrong. I still think things are tough and would love to see my parents healed but if it doesn't happen, there are still a lot worse cases out there. How blessed I am was brought home to me again today.
Somehow, I had misplaced the gas bill in December. I didn't even realize I hadn't paid it. Today, I got a notice that said they were going to disconnect if they did not get paid. This may be the first disconnect notice I have ever seen that was not one of my patient's. I was able to call and pay the bill by phone with much apologies and no repercussions. I bet there is someone out there who got the same type notice with no idea how he or she is going to pay it. I can't imagine the anxiety related to facing winter without heat. So in my warm house tonight, I thank God for a husband that is brain tumor free, is willing to work hard, and who will come home to me. I also am grateful for these months I have with my mother, no matter how few they may be. She loves us all so and does whatever she can to show it. My children humble me with their faith and love through all they are facing. I want to have their assurance that things will always come out right. God has also allowed me to be surrounded by such a spirit filled group of friends to lift me up in prayer and give me support whenever I need it. Thank you to all.
I talked to a man the other day who had a mother with Alzheimer's and a father with cancer. Oddly, some part of me felt offended. How dare someone else (besides my sisters) have it as bad as me? Not that I said that, of course, but it surprised me that the thought was even there. I guess I thought I had the market cornered on rough things until life knocked and reminded me that I'm not all that. Don't get me wrong. I still think things are tough and would love to see my parents healed but if it doesn't happen, there are still a lot worse cases out there. How blessed I am was brought home to me again today.
Somehow, I had misplaced the gas bill in December. I didn't even realize I hadn't paid it. Today, I got a notice that said they were going to disconnect if they did not get paid. This may be the first disconnect notice I have ever seen that was not one of my patient's. I was able to call and pay the bill by phone with much apologies and no repercussions. I bet there is someone out there who got the same type notice with no idea how he or she is going to pay it. I can't imagine the anxiety related to facing winter without heat. So in my warm house tonight, I thank God for a husband that is brain tumor free, is willing to work hard, and who will come home to me. I also am grateful for these months I have with my mother, no matter how few they may be. She loves us all so and does whatever she can to show it. My children humble me with their faith and love through all they are facing. I want to have their assurance that things will always come out right. God has also allowed me to be surrounded by such a spirit filled group of friends to lift me up in prayer and give me support whenever I need it. Thank you to all.
Sunday, January 23, 2011
Sick and Tired
Mom's pain level continues to rise. She is taking pain meds almost constantly now. My middle sister plans to call Hospice tomorrow. They are the experts in pain control and most of all we don't want Mom to suffer. Last night around 10:30 my phone rang and she asked me to come spend the night to watch Daddy. He'd already gotten out of the apartment once and ended up across the hall. After I got there, she took a stronger pain pill and slept through the night. Fortunately, Daddy did as well. I kept waking up thinking I heard something but he stayed in the room all night.
Got up in time to make it home to get ready for church. The sky as I drove home glowed with a pink light from the sunrise, beautiful. We went to Mom and Dad's Baptist church today. I'm not sure I can be Baptist again. There seems to be such a sin focus. The weight of Christianity seems heavy after I hear sin sermons when Jesus promised his yoke would be light. I realize I'm not perfect (or even close) but it seems like it might be more fruitful to talk about how my imperfect self can be useful to the Kingdom ministry. Daddy remembered some of the hymns today. It was bittersweet to hear his deep voice singing out the words in such a familiar way when nothing else about him seems familiar. I stood next to him singing with tears running down my face. Will he still have these moments of lucidity after he moves to The Lantern in a couple of weeks? I heard him ask Mom after the service who Jeff and I were. This afternoon, my throat is hurting and my head aches. I'm praying for strength from God because mine seems to be flagging.
Got up in time to make it home to get ready for church. The sky as I drove home glowed with a pink light from the sunrise, beautiful. We went to Mom and Dad's Baptist church today. I'm not sure I can be Baptist again. There seems to be such a sin focus. The weight of Christianity seems heavy after I hear sin sermons when Jesus promised his yoke would be light. I realize I'm not perfect (or even close) but it seems like it might be more fruitful to talk about how my imperfect self can be useful to the Kingdom ministry. Daddy remembered some of the hymns today. It was bittersweet to hear his deep voice singing out the words in such a familiar way when nothing else about him seems familiar. I stood next to him singing with tears running down my face. Will he still have these moments of lucidity after he moves to The Lantern in a couple of weeks? I heard him ask Mom after the service who Jeff and I were. This afternoon, my throat is hurting and my head aches. I'm praying for strength from God because mine seems to be flagging.
Saturday, January 22, 2011
not so great
It has been a rough couple of days. The doctor never called on Friday so we have no confirmation that Jeff is tumor-free. However, we do take comfort in the fact that doctors rarely delay on bad news. The drive with Mom and Dad yesterday was not only tiring due to being in the car for five hours. It was also difficult to hear Daddy occasionally telling Mom how much he missed her when he couldn't touch her and to please not ever leave him. Alzheimer's has reduced my once (probably overly) proud father to such neediness. These words were especially difficult to hear in light of the plan to move him to the Alzheimer's facility at the beginning of February. Silent tears slid down Mom's cheeks every time Dad did this.
Mom is also getting worse. She is taking pain pills every day now and felt too tired to pick up her anti-nausea medication tonight. I am so glad to be able to do these things for her but it scares me that it is needed. I'm not ready for her to be gone. She told me in the car last night that she didn't expect to be around for the summer. I swallowed hard and nodded. What do you say to that?
Mom is also getting worse. She is taking pain pills every day now and felt too tired to pick up her anti-nausea medication tonight. I am so glad to be able to do these things for her but it scares me that it is needed. I'm not ready for her to be gone. She told me in the car last night that she didn't expect to be around for the summer. I swallowed hard and nodded. What do you say to that?
Thursday, January 20, 2011
We now return to our regularly scheduled program, already in process
I always hated when TV stations took time away from one of my programs to show me what they felt I wanted to see. They were usually wrong because I didn't give one flip about the President's speeches. Isn't that what life is like though? No matter what event you are focused on, the rest of life continues around you. Two things happened this week while I was focused on another.
My oldest sister took Mom to a healing service at a local church last night while Jeff and I were traveling to Knoxville. Mom said they anointed her head with oil and two women prayed over her. She realized through the process that she had never asked God to heal her. She said she felt that might be presumptive. I told her I thought her healing would be a great testament to God (can I get an Amen). I know my faith has been shaken by seeing her and Daddy struggling, knowing they have dedicated their whole lives to spreading the Word and serving God. Mom says God doesn't keep us from troubles but it seems to me that occasionally he would look down and say, "Now, that just isn't right," and fix it. Maybe he will. Mom did finally pray for that healing. If she gets it, maybe we can take Dad there too.
The other missed event was that while Jeff and I were in Knoxville getting his MRI, Mom and my two sisters went to measure the room that Daddy will be moving into at the beginning of February. Not that they needed my input (in fact I'm probably the worst decorator of the three) but it would have been nice if I could have been there to share the burden.
The MRI process itself went well, the beginning not so much. First, I didn't sleep most of the night after having a horrible nightmare in which Jeff buried himself in the ground and Kelsey followed suit and I couldn't find either of them. No problem figuring out the symbolism on that one, huh? Anyhow, we had a hard time finding where we needed to be for the MRI and then once we thought we were there, the office itself sat empty and darkened. This did all get straightened out and, as a bonus, I was able to pound out most of a draft for an article I'm writing while I waited.
The doctor didn't call today which may be a good sign since the experience I have indicates that if it is bad news, the doctor always calls right away. Jeff says he figures if we can get through tomorrow without an urgent phone call, we are probably in the clear. Here's to hoping he is right or that we get a call saying, "We may not know what the problem is but we're sure it's not a brain tumor."
Tomorrow, Jeff and I are driving my Mom and Dad three hours away to meet with Daddy's siblings. I'm planning to take the video camera. This could be a good time to get some footage that may never be available again. Make no mistake about it though, Jeff will be bringing his phone.
My oldest sister took Mom to a healing service at a local church last night while Jeff and I were traveling to Knoxville. Mom said they anointed her head with oil and two women prayed over her. She realized through the process that she had never asked God to heal her. She said she felt that might be presumptive. I told her I thought her healing would be a great testament to God (can I get an Amen). I know my faith has been shaken by seeing her and Daddy struggling, knowing they have dedicated their whole lives to spreading the Word and serving God. Mom says God doesn't keep us from troubles but it seems to me that occasionally he would look down and say, "Now, that just isn't right," and fix it. Maybe he will. Mom did finally pray for that healing. If she gets it, maybe we can take Dad there too.
The other missed event was that while Jeff and I were in Knoxville getting his MRI, Mom and my two sisters went to measure the room that Daddy will be moving into at the beginning of February. Not that they needed my input (in fact I'm probably the worst decorator of the three) but it would have been nice if I could have been there to share the burden.
The MRI process itself went well, the beginning not so much. First, I didn't sleep most of the night after having a horrible nightmare in which Jeff buried himself in the ground and Kelsey followed suit and I couldn't find either of them. No problem figuring out the symbolism on that one, huh? Anyhow, we had a hard time finding where we needed to be for the MRI and then once we thought we were there, the office itself sat empty and darkened. This did all get straightened out and, as a bonus, I was able to pound out most of a draft for an article I'm writing while I waited.
The doctor didn't call today which may be a good sign since the experience I have indicates that if it is bad news, the doctor always calls right away. Jeff says he figures if we can get through tomorrow without an urgent phone call, we are probably in the clear. Here's to hoping he is right or that we get a call saying, "We may not know what the problem is but we're sure it's not a brain tumor."
Tomorrow, Jeff and I are driving my Mom and Dad three hours away to meet with Daddy's siblings. I'm planning to take the video camera. This could be a good time to get some footage that may never be available again. Make no mistake about it though, Jeff will be bringing his phone.
Taking a break from our regularly scheduled program
So the much abused nephew sent me a friend request on facebook tonight. I'd like to say I felt no guilt from it but that would be a major whopper. So, in lieu of a direct apology I'd like to take a moment to sing his praises. Ahem
My beautiful nephew so brave and so true
whether friended or alone
I'll always love you.
He truly is a great guy to even care if my feelings were hurt. I even gave him the option to unfriend with no hard feelings and he was quite gracious about it all. Let me just add that not only is he gracious, kind, handsome, and caring but I think perhaps when God created him, He had in mind a perfect Marine and as God is perfect, achieved his goal with no errors.
My beautiful nephew so brave and so true
whether friended or alone
I'll always love you.
He truly is a great guy to even care if my feelings were hurt. I even gave him the option to unfriend with no hard feelings and he was quite gracious about it all. Let me just add that not only is he gracious, kind, handsome, and caring but I think perhaps when God created him, He had in mind a perfect Marine and as God is perfect, achieved his goal with no errors.
Wednesday, January 19, 2011
now we wait more
We are here in Knoxville waiting for that early morning alarm. I don't know when we will find out the results but when I know something I'll let you know. Mom and one of my sisters are going to the Lantern tomorrow to figure out what kind of furniture Dad will need. Intellectually, we are all together that he needs to go. Emotionally, we are also all together that it is tearing at our hearts. My other sister took Mom to a healing service tonight. I'll be interested to see how that went. Details to follow.
Phase One
Today, they come to interview Daddy for placement and Jeff and I head to Knoxville for his MRI tomorrow morning. I really thought I was handling all this so well. Until last night when I went on facebook to post a writing link for my nephew and discovered he had unfriended me. The degree of hurt and anger I felt was waaaay disproportionate to the act.
I sat there in stunned silence, then turned to Jeff and announced it to him. Sure, my nephew is 17, sure, he never even friended his mom in the first place, but I'm supposed to be the cool aunt. Immediately, I fired off a msg to him to let him know that I now knew about this betrayal. Then because I like to compound my mistakes, I went to his little sister's page and posted that now she was my favorite from that family. An act that I justified to myself as a joke. Next, I sat and deliberated on all the things I could text and heavily guilt him with including the potential of my husband having a brain tumor and Mom's illness. At least, I can say I didn't make that call but I still stewed on it as I went to sleep.
This morning, I realize the facebook thing is less the problem than my feeling of loss and disconnect from so many things in my life. This little action represented something I could protest, go after, and potentially change. Because I remain so powerless about everything else. I am so angry my Mom is dying, furious that my Dad doesn't even know my name, and haven't even begun to deal with the possibility that Jeff's brain tumor might have returned.
I realize we don't know about that last one but it doesn't look good. The survival rate drops from 62% to 52% between ten and twenty years survival for a chordoma. He is in year 14. This is not a fact, I've shared with Jeff. Does that mean this is what we are dealing with? No, but it does mean there is a good possibility we have another fight in front of us. Yesterday, I said to Jeff about his double vision, "I'm sure this will turn out to be fine." He replied, "That's what we thought about your mother." The response made my stomach twist into a knot that won't fully release until we know he is not growing potential death in his head.
I sat there in stunned silence, then turned to Jeff and announced it to him. Sure, my nephew is 17, sure, he never even friended his mom in the first place, but I'm supposed to be the cool aunt. Immediately, I fired off a msg to him to let him know that I now knew about this betrayal. Then because I like to compound my mistakes, I went to his little sister's page and posted that now she was my favorite from that family. An act that I justified to myself as a joke. Next, I sat and deliberated on all the things I could text and heavily guilt him with including the potential of my husband having a brain tumor and Mom's illness. At least, I can say I didn't make that call but I still stewed on it as I went to sleep.
This morning, I realize the facebook thing is less the problem than my feeling of loss and disconnect from so many things in my life. This little action represented something I could protest, go after, and potentially change. Because I remain so powerless about everything else. I am so angry my Mom is dying, furious that my Dad doesn't even know my name, and haven't even begun to deal with the possibility that Jeff's brain tumor might have returned.
I realize we don't know about that last one but it doesn't look good. The survival rate drops from 62% to 52% between ten and twenty years survival for a chordoma. He is in year 14. This is not a fact, I've shared with Jeff. Does that mean this is what we are dealing with? No, but it does mean there is a good possibility we have another fight in front of us. Yesterday, I said to Jeff about his double vision, "I'm sure this will turn out to be fine." He replied, "That's what we thought about your mother." The response made my stomach twist into a knot that won't fully release until we know he is not growing potential death in his head.
Tuesday, January 18, 2011
Decisions, decisions
The people from The Lantern (The Alzheimer's place) are coming to interview Daddy on Wed. I can't imagine how that interview is going to go since Daddy can't really answer any questions. So I am guessing it is more of an assessment. Halleleujah, they don't do the one week restriction so we can go see him or pick him up anytime. Mom sounded very upbeat when I talked to her and said that they told her often clients of theirs even improve once they are in their care. I know Mom won't be pleased in the end though. Because no one will take care of Dad the way she does. After all, taking care of each other is what we are all about. I think she knows the right choice but is soliciting the opinion of everyone around her to make sure no one disagrees.
Jeff's MRI is scheduled for Thursday morning at 6:45 in Knoxville. Which means spending the night in Knoxville. So either my wonderful volunteering sister has to come spend the night or I have to send him to go on his own. On his own will be fine if the news is good. But he said last time, when there was a tumor, the doctor called him right as he walked in the door. I don't want him driving home by himself if he gets that kind of news. To complicate matters, the school is having an informational coffee for rising 4th and 5th graders at 8:15 on that Thursday morning, my daughter's class, so I will have to miss that if I go. I haven't yet figured out how to be in two places at once but I am sure a scientist somewhere is working on that. God help us when that gets figured out.
Jeff's MRI is scheduled for Thursday morning at 6:45 in Knoxville. Which means spending the night in Knoxville. So either my wonderful volunteering sister has to come spend the night or I have to send him to go on his own. On his own will be fine if the news is good. But he said last time, when there was a tumor, the doctor called him right as he walked in the door. I don't want him driving home by himself if he gets that kind of news. To complicate matters, the school is having an informational coffee for rising 4th and 5th graders at 8:15 on that Thursday morning, my daughter's class, so I will have to miss that if I go. I haven't yet figured out how to be in two places at once but I am sure a scientist somewhere is working on that. God help us when that gets figured out.
Monday, January 17, 2011
It's the Waiting
Today someone from Thompson's Cancer Center is going to call us to schedule Jeff's MRI. I think it is more than ironic that while we wait to find out if he has a brain tumor that will alter my children's lives significantly (to put it mildly). We are in process of trying to decide what to do about my own father. Yesterday, my family came over for a spaghetti lunch, Jeff's special homemade recipe, to celebrate my son's 6th birthday. Mom looked so tired and Dad, while there in body, wore a perpetually confused look.
Yet, they were both in the pictures so I can show my son years down the road his Nana and Grandpa at his sixth birthday party. It may be that neither of them are present for his 7th. It would be beyond unfair if his father weren't either.
Last night my dreams were full of trips in which Jeff and I received the results of his MRI. Clearly, my mind is either in denial or on the positive route since in all of them there was no tumor. Although last night I looked up causes of problems to the 6th cranial nerve (what the doctor says is causing his double vision) and brain tumor was listed close to the top, right after stroke and something else disturbing that I can't remember right now. Jeff's blood pressure is good so I don't think that's the problem. The one positive I got out of the article is that it said sometimes a cause is never found and it can be corrected with spectacles. I gotta say, I'd be all right with ignorance especially if it could be fixed. So we are holding our breath, crossing our fingers, but mostly praying that the MRI will come soon and put us out of this time of uncertainty.
Yet, they were both in the pictures so I can show my son years down the road his Nana and Grandpa at his sixth birthday party. It may be that neither of them are present for his 7th. It would be beyond unfair if his father weren't either.
Last night my dreams were full of trips in which Jeff and I received the results of his MRI. Clearly, my mind is either in denial or on the positive route since in all of them there was no tumor. Although last night I looked up causes of problems to the 6th cranial nerve (what the doctor says is causing his double vision) and brain tumor was listed close to the top, right after stroke and something else disturbing that I can't remember right now. Jeff's blood pressure is good so I don't think that's the problem. The one positive I got out of the article is that it said sometimes a cause is never found and it can be corrected with spectacles. I gotta say, I'd be all right with ignorance especially if it could be fixed. So we are holding our breath, crossing our fingers, but mostly praying that the MRI will come soon and put us out of this time of uncertainty.
Saturday, January 15, 2011
The Double Bind
The Lantern, an Alzheimer's full time care facility, called today and said they have a spot for Dad. Whether or not we ought to put him in a placement ought to be a no brainer. Mom is getting weaker and the Alzheimer's is making his care increasingly difficult. I love my mother so. It is certainly in her best interest to have someone else take care of him and free her to sleep when she needs sleep or, if she feels like it, enjoy some of her last days here on earth. It probably is a no brainer except that knowing what I know of the disease, he will decompensate. The move itself will send him further down the tunnel of isolation and who knows if he will be able to crawl back out and stabilize again?
Mom will have to watch this, knowing that, even if he doesn't know her, this is still the man she married 52 years ago. It will be better for him to have her around for the transition but probably harder for her then just leaving it for us to deal with after she is gone. Each of us have already considered the ramifications of moving him in with us. Since we all have children and could not give that dedicated care, he just wouldn't get it with any of us. Mom is the only one who has the time but unless God intervenes, we will be lucky to have her for four more months. There will probably be hospitalizations before she dies and we would have to scramble for care for Daddy. She wants us to advise her. I guess I have to advise for the full time care.
But then I picture my proud, independent Dad, still too proud to admit when he needs help, not being able to find a bathroom and staff not noticing. They won't love him like we love him because they don't really know who he is. They don't know that when he worked his first job, he used part of the money to buy his sister a bike. They don't know that he always took out the older widows at Valentine's Day every year or that he cleaned out latrines on a Honduras mission trip. They won't know that he used to come home from work every day, kiss my mother and then run through the house and hide so that my sister and I could clutch each other searching for him until he would jump out making us scream in delighted terror, or about the wheelbarrow rides, or so many things he doesn't even remember himself. I guess I'll have to tell them.
Mom will have to watch this, knowing that, even if he doesn't know her, this is still the man she married 52 years ago. It will be better for him to have her around for the transition but probably harder for her then just leaving it for us to deal with after she is gone. Each of us have already considered the ramifications of moving him in with us. Since we all have children and could not give that dedicated care, he just wouldn't get it with any of us. Mom is the only one who has the time but unless God intervenes, we will be lucky to have her for four more months. There will probably be hospitalizations before she dies and we would have to scramble for care for Daddy. She wants us to advise her. I guess I have to advise for the full time care.
But then I picture my proud, independent Dad, still too proud to admit when he needs help, not being able to find a bathroom and staff not noticing. They won't love him like we love him because they don't really know who he is. They don't know that when he worked his first job, he used part of the money to buy his sister a bike. They don't know that he always took out the older widows at Valentine's Day every year or that he cleaned out latrines on a Honduras mission trip. They won't know that he used to come home from work every day, kiss my mother and then run through the house and hide so that my sister and I could clutch each other searching for him until he would jump out making us scream in delighted terror, or about the wheelbarrow rides, or so many things he doesn't even remember himself. I guess I'll have to tell them.
Remember those other kicks in the pants-here's one
Jeff, my husband, had a brain tumor 14 years ago. He fought through it and managed to be one of the lucky ones. He has some side effects from the surgery and radiation but overall does well. Until last week, right before the big snow, when he tells me he has double vision in one of his eyes. Double vision happened to be his primary symptom 14 years ago. So now, we wait until the MRI can be scheduled to find out whether "sluggo" as he named his tumor is back. If so, we have a long hard fight ahead, coupled with Mom's cancer, tripled by Dad's Alzheimer's. I asked a friend of mine,
"Do you think God still loves me?"
She answered. "Yes, but I think Satan may have his eye on you too."
I'm trying to stay positive and not think the worst but I find myself watching Jeff holding my daughter on his lap or tickling our son to the floor and thinking how they'd never get over missing him. Then he looks across at me and smiles and I know I never would either. Here's hoping we don't have to.
"Do you think God still loves me?"
She answered. "Yes, but I think Satan may have his eye on you too."
I'm trying to stay positive and not think the worst but I find myself watching Jeff holding my daughter on his lap or tickling our son to the floor and thinking how they'd never get over missing him. Then he looks across at me and smiles and I know I never would either. Here's hoping we don't have to.
Friday, January 14, 2011
Is no news the proverbial good news?
Mom missed her doctor's appointment on Monday due to the eight inches of snow we received in East Tennessee. She said she isn't even sure why we are going to the doctor since she isn't doing chemo anymore. I reminded her we might need to do some symptom control and then in my mind willed myself and her not to think about what that might mean. She and Dad have been walking the halls at their retirement center. He continues to be restless a lot of the time and the caregivers (or daughters) haven't been able to get there to help her. She did say one of their previous pastors, Larry Williams (a saint) came by yesterday so some Chattanoogians are getting out. Is it wrong that I find myself enjoying this forced reprieve from life outside my own little cosmo?
Thursday, January 13, 2011
In the beginning...
As I put in that title, my inner critic immediately suggested that most likely thousands of blogs start with the same title but perhaps if you choose to follow or read on, you will find this to be different than those other blogs. I will say this has been a miraculous if trying time. The God who inspired those first words is also the God that brought me back to Ooltewah, Tn. My father, lifelong Baptist, has been diagnosed with Alzheimers for nine years. My mother, his primary caretaker, received a terminal diagnosis with pancreatic cancer nine months ago. She has the major tumor in her pancreas but also has smaller tumors on her lungs. The doctor gave her six months to a year to live. The cancer held off for the first nine months, long enough for me to think maybe we were given a reprieve. It has now begun spreading again with more tumors in her lungs and she is stopping chemo. It is up to God now to heal her or we have to let her go.
Subscribe to:
Posts (Atom)