I’m headed home again, this time with the finality of driving my car and all my belongings back across the 2000 miles I first traveled in early March. This signifies that my own home will once again be my home base and that trips to see Dad will be of the shorter variety via airplane and rental car. I’m finally over my tears and I’m enjoying the drive and audio book.
Yesterday, I made the short trip from Atlanta to Birmingham to visit a cousin I hadn’t seen for nearly 20 years. We had much to catch up on, but we felt the comfortable familiarity of those who had seen each other only yesterday. I left vowing to stay in touch.
With a bountiful sack of lunch, I left her house around 8:30 and today made it through the rest of Alabama, a corner of Mississippi and Tennessee, and all the way across Arkansas and into Oklahoma – more than 500 miles. I was so tired when I finally stopped that I took the first promising hotel without thoroughly searching its features for “free wireless internet.” Therefore, when you read this, it will be at least a day later.
I walked to the nearest restaurant – a Chinese buffet – again too tired to be picky about what they had (or didn’t have) to offer. It was unremarkable. Tomorrow, with renewed energy, I will search out more interesting road food options.
Although comfortably full from too much lunch and enough dinner, I’m now tempted to visit the ice cream store across the street. Then, I’ll retire early to get an early start tomorrow.
Sue
Showing posts with label caregiving adventure. Show all posts
Showing posts with label caregiving adventure. Show all posts
Friday, August 31, 2007
Tuesday, August 28, 2007
End of the chapter
Saying good-bye to my father, as I closed up his former apartment and prepared to head back home to my former life, was one of the hardest things I’ve ever done. After loading my car and signing the papers releasing the apartment, I sat in the car and cried. No, no, I thought, I can’t be in tears when I say good-bye to Dad. Recovering somewhat, I went into Dad’s building and found him eating dinner in the dining room.
“Dad, you know I have to leave tomorrow and drive back to Utah,” I said. He didn’t look too surprised. Good, I thought, he understands what’s going on. “Is there anything else I can do for you before I go?” I asked.
He looked thoughtful, started to say something, but couldn’t find the words. In little bits and pieces, I finally understood that he was frustrated with his meals – not what he ordered. Well, one of the nursing staff, who doesn’t yet know his likes and dislikes, had filled out his meal order form for the week, and, although I had made corrections after it was submitted, my corrections obviously were not followed. When one of the dining staff showed up, I reminded her of Dad’s likes and dislikes. This seemed to placate Dad, but I’ll follow up with an email just in case.
When he had finished eating, I walked him back to his room, got him into his recliner and asked if there was anything else I could do for him. He seemed to want to say something but nothing coherent was coming out. Finally, I asked, “Do you want to see what’s on TCM tonight?”
“Sure,” he said.
I turned on the TV. Good, a western! Then, I said, “Well, Dad, I have to hit the road.” I kissed him and said, “You take care of yourself, and remember, I’ll be back in six weeks!”
He said, “Well, you say hello to the folks.” I guess he meant my husband and sons, none of whom are home, but I said I would.
Then, hurrying to leave, I said, “Say prayers for me the next few days.”
He seemed to want to say something else, but by then the tears were coming back and I had to get out of there. “Bye Dad,” I called and hurried from the room, closing the door behind me.
I’m no good at long good-byes, and with Dad’s communication difficulties, there’s no such thing as a short good-bye. I could hear him calling after me, “Hey, wait…” but I was gone, tears splashing down my cheeks as I ran down the hall.
I boo-hoo’d to Buford, a one-hour drive, looking in the mirror at stoplights to see what damage I was doing to my eyes. My already-congested head was impossibly stuffed up, and I kept telling myself to stop, but I guess I needed a good cry, a catharsis. It was as though I was grieving for both my parents, the one lost forever to cancer, the other lost to dementia, though his physical self is still alive.
Tomorrow I will begin a 4-5-day drive to Utah, the end of my creative caregiving adventure. The next chapter will involve caring from a distance, managing remotely, quarterly consultations…at least until the needs change.
Heaven protect me from my negative thoughts, but I have found myself wondering what I will do when I get the call that Dad is in the hospital, or has been diagnosed with cancer, or…. Will I once again pack my car and head for Atlanta for an indefinite period of intense caregiving? I don’t know the answer, but I am thankful for the blessings, in the midst of trauma and sadness, during the past six months.
Sue
“Dad, you know I have to leave tomorrow and drive back to Utah,” I said. He didn’t look too surprised. Good, I thought, he understands what’s going on. “Is there anything else I can do for you before I go?” I asked.
He looked thoughtful, started to say something, but couldn’t find the words. In little bits and pieces, I finally understood that he was frustrated with his meals – not what he ordered. Well, one of the nursing staff, who doesn’t yet know his likes and dislikes, had filled out his meal order form for the week, and, although I had made corrections after it was submitted, my corrections obviously were not followed. When one of the dining staff showed up, I reminded her of Dad’s likes and dislikes. This seemed to placate Dad, but I’ll follow up with an email just in case.
When he had finished eating, I walked him back to his room, got him into his recliner and asked if there was anything else I could do for him. He seemed to want to say something but nothing coherent was coming out. Finally, I asked, “Do you want to see what’s on TCM tonight?”
“Sure,” he said.
I turned on the TV. Good, a western! Then, I said, “Well, Dad, I have to hit the road.” I kissed him and said, “You take care of yourself, and remember, I’ll be back in six weeks!”
He said, “Well, you say hello to the folks.” I guess he meant my husband and sons, none of whom are home, but I said I would.
Then, hurrying to leave, I said, “Say prayers for me the next few days.”
He seemed to want to say something else, but by then the tears were coming back and I had to get out of there. “Bye Dad,” I called and hurried from the room, closing the door behind me.
I’m no good at long good-byes, and with Dad’s communication difficulties, there’s no such thing as a short good-bye. I could hear him calling after me, “Hey, wait…” but I was gone, tears splashing down my cheeks as I ran down the hall.
I boo-hoo’d to Buford, a one-hour drive, looking in the mirror at stoplights to see what damage I was doing to my eyes. My already-congested head was impossibly stuffed up, and I kept telling myself to stop, but I guess I needed a good cry, a catharsis. It was as though I was grieving for both my parents, the one lost forever to cancer, the other lost to dementia, though his physical self is still alive.
Tomorrow I will begin a 4-5-day drive to Utah, the end of my creative caregiving adventure. The next chapter will involve caring from a distance, managing remotely, quarterly consultations…at least until the needs change.
Heaven protect me from my negative thoughts, but I have found myself wondering what I will do when I get the call that Dad is in the hospital, or has been diagnosed with cancer, or…. Will I once again pack my car and head for Atlanta for an indefinite period of intense caregiving? I don’t know the answer, but I am thankful for the blessings, in the midst of trauma and sadness, during the past six months.
Sue
Thursday, June 7, 2007
The Gold Cross
Yesterday, Mom asked me to find her gold cross necklace that I gave her for Christmas. “It’s hidden with your other jewelry,” I told her. “But I’ll get it and you can wear it if you think you can leave it on at all times. Do you think you can leave it on even when you sleep or shower,” I asked. “Yes,” she promised. “It’s very important to me.”
A little later Mom asked me if there’s anything she should be doing to prepare for “what’s coming next.” That opened the conversation about radiation treatments and the questions we want to ask the oncologist next week. I was glad Mom wanted to talk about it, and she seemed very clear-headed and calm.
Then, I asked, “Momma, do you say your prayers at night?”
“Oh, yes,” she said, “and in the morning and at noon, too.”
I said, “Well, I’m praying that God will guide you to made the decision that’s best for you once we have all the information we can get.”
“Yes, that’s what I’m praying for, too,” she said.
The day before I had prayed for a clue to how to talk about prayer with my mother. Here was the answer. Thank you, God.
Sue
A little later Mom asked me if there’s anything she should be doing to prepare for “what’s coming next.” That opened the conversation about radiation treatments and the questions we want to ask the oncologist next week. I was glad Mom wanted to talk about it, and she seemed very clear-headed and calm.
Then, I asked, “Momma, do you say your prayers at night?”
“Oh, yes,” she said, “and in the morning and at noon, too.”
I said, “Well, I’m praying that God will guide you to made the decision that’s best for you once we have all the information we can get.”
“Yes, that’s what I’m praying for, too,” she said.
The day before I had prayed for a clue to how to talk about prayer with my mother. Here was the answer. Thank you, God.
Sue
Wednesday, April 11, 2007
I am not alone
Sometimes I feel alone and sad. Like last night at dinner with Dad. After a long day at the hospital, during which Mom had to be put back on the ventilator and sedatives, I was feeling discouraged. Instead of envisioning Mom's eventual release from the hospital and full recovery, I was starting to think about the possibility of her never coming home. This was not something that I felt I could articulate to Dad. With his Parkinsons, mixed with some dementia, I don't know who much he understands, remembers, or worries, but I feel I need to protect him and help him feel secure. So I remained stoic (if not cheerful) on the outside as I sobbed on the inside.
Emails, phone calls, and blog responses from friends and family have helped me feel not so alone. Some have shared their own experiences with aging parents and with dementia. Some have just let me tell my story. Even my dear husband, who hates too much information about illness, bodily functions, and emotions, let me ramble on. For all this I am grateful.
This morning, on the way to the hospital, I prayed that I would feel God's presence and sense Him somehow working through me to help Mom heal (as opposed to yesterday, when my arrival at the hospital coincided with Mom needing more sedation!). I believe my prayers were answered. I've stood by Mom's bed calming her after a coughing spasm, reassuring her that her blood pressure is doing great, cheering her on when she was finally placed in a chair to sit up for a few hours.
I'm not taking the credit, but I thank God that I can feel somewhat useful and see promising results.
Sue
Emails, phone calls, and blog responses from friends and family have helped me feel not so alone. Some have shared their own experiences with aging parents and with dementia. Some have just let me tell my story. Even my dear husband, who hates too much information about illness, bodily functions, and emotions, let me ramble on. For all this I am grateful.
This morning, on the way to the hospital, I prayed that I would feel God's presence and sense Him somehow working through me to help Mom heal (as opposed to yesterday, when my arrival at the hospital coincided with Mom needing more sedation!). I believe my prayers were answered. I've stood by Mom's bed calming her after a coughing spasm, reassuring her that her blood pressure is doing great, cheering her on when she was finally placed in a chair to sit up for a few hours.
I'm not taking the credit, but I thank God that I can feel somewhat useful and see promising results.
Sue
Monday, April 9, 2007
Hurry Up!
Taking care of my father reminds me of taking care of my sons when they were little. As a working mom, I was always on a tight schedule. There was seldom any padding in the schedule to allow for completion of games or projects, or whatever the boys were in the middle of when it was time to go somewhere. And, when Mom's in a hurry, it's so much easier to make the decisions rather than letting the little ones have choices. I now know that this is not the best way to raise creative, responsible, self-reliant kids (though mine have done well in spite of me).
So it is with a father with Parkinsons. It would be so much easier not to give him choices; to fix breakfast and set it before him, to put his keys and money in his pockets in the morning and empty them at night (tasks that take him about 10-15 minutes). However, I know it's really important for him to do for himself everything that he can possibly do. It's good for his mind-nerve-muscle coordination. It's good for his sense of independence.
I am learning to accommodate his time consuming efforts at self-reliance. For example, the 30 minutes he spends washing his face and cleaning his dentures has become my reading time. I'm whipping through magazines and good junk novels as I keep one eye on Dad, ready to rush to his aid if he loses his balance or falls.
Then, there's the 15 minutes it take him to get into bed. I could probably lift him and place him into position (with waterproof pads neatly under him in case of accidents). But it's better for him to exercise the neurological connections and his memory to figure out how to do it. Besides, when Mom gets back home to care for him, I don't want him to be dependent on something she's not able to do. Instead, I play the cheerleader..."that's it...swing those feet around...ok, now walk the feet over, lift the hips...hooray, that's the best you've done yet!"
Sue
So it is with a father with Parkinsons. It would be so much easier not to give him choices; to fix breakfast and set it before him, to put his keys and money in his pockets in the morning and empty them at night (tasks that take him about 10-15 minutes). However, I know it's really important for him to do for himself everything that he can possibly do. It's good for his mind-nerve-muscle coordination. It's good for his sense of independence.
I am learning to accommodate his time consuming efforts at self-reliance. For example, the 30 minutes he spends washing his face and cleaning his dentures has become my reading time. I'm whipping through magazines and good junk novels as I keep one eye on Dad, ready to rush to his aid if he loses his balance or falls.
Then, there's the 15 minutes it take him to get into bed. I could probably lift him and place him into position (with waterproof pads neatly under him in case of accidents). But it's better for him to exercise the neurological connections and his memory to figure out how to do it. Besides, when Mom gets back home to care for him, I don't want him to be dependent on something she's not able to do. Instead, I play the cheerleader..."that's it...swing those feet around...ok, now walk the feet over, lift the hips...hooray, that's the best you've done yet!"
Sue
Sunday, April 8, 2007
Easter Vigil
Easter Vigil
Last night I tried to prime Dad for getting up a littler earlier and going to church for the Easter service. He seemed acquiescent, if not enthusiastic. He asked, “What denomination?” When I responded, “Presbyterian,” he thought for a minute, then said, “We’re Methodists, United Methodists.”
OK, I thought. Though I have a preference for Presbyterians, if he would feel more comfortable in a Methodist church, I’m willing. But, I don’t really think it would matter to him either. He would most likely sleep through the service. I’m not being critical when I say that; it’s simply a fact of his life right now. Whether it’s the Parkinsons or the medications, he naps a lot.
I now understand why Mom always had excuses for not going to church, though she always said she wanted to go. Getting Dad ready to go anywhere on a schedule is a huge challenge. But now I believe that Mom, so concerned about appearances, probably also worried about what people would think if Dad slept through church.
As it turned out, we were at the hospital last night until about 7 p.m., which meant that we did not get home and finish dinner until 10 p.m., which meant that we were not ready for bed until midnight. So this morning, even though I got him up a little earlier than normal, ever hopeful that we could be ready to go to church, signs of sleep deprivation clearly indicated a nap.
Now, instead of church, we will go to the hospital to see Mom, who was moved back to the ICU late last night after she experienced more breathing difficulties. The doctor assured me that she would be better monitored and cared for in ICU and that they would study her various test reports to determine next steps. He said her heart is fine and, even with the trouble breathing, her pneumonia isn’t “that bad.”
Tomorrow, they will try taking her off the ventilator to see if her lungs are strong enough to work on their own.
Sue
Last night I tried to prime Dad for getting up a littler earlier and going to church for the Easter service. He seemed acquiescent, if not enthusiastic. He asked, “What denomination?” When I responded, “Presbyterian,” he thought for a minute, then said, “We’re Methodists, United Methodists.”
OK, I thought. Though I have a preference for Presbyterians, if he would feel more comfortable in a Methodist church, I’m willing. But, I don’t really think it would matter to him either. He would most likely sleep through the service. I’m not being critical when I say that; it’s simply a fact of his life right now. Whether it’s the Parkinsons or the medications, he naps a lot.
I now understand why Mom always had excuses for not going to church, though she always said she wanted to go. Getting Dad ready to go anywhere on a schedule is a huge challenge. But now I believe that Mom, so concerned about appearances, probably also worried about what people would think if Dad slept through church.
As it turned out, we were at the hospital last night until about 7 p.m., which meant that we did not get home and finish dinner until 10 p.m., which meant that we were not ready for bed until midnight. So this morning, even though I got him up a little earlier than normal, ever hopeful that we could be ready to go to church, signs of sleep deprivation clearly indicated a nap.
Now, instead of church, we will go to the hospital to see Mom, who was moved back to the ICU late last night after she experienced more breathing difficulties. The doctor assured me that she would be better monitored and cared for in ICU and that they would study her various test reports to determine next steps. He said her heart is fine and, even with the trouble breathing, her pneumonia isn’t “that bad.”
Tomorrow, they will try taking her off the ventilator to see if her lungs are strong enough to work on their own.
Sue
Tuesday, April 3, 2007
A better day
A new day. Eight hours of sleep. Eight hours of assistance today. Time to run to Curves. Not quite free of responsibilities - grocery shopping and hospital visit - but at least I'm not encumbered by walker, Depends, and other tools of the caretaking trade.
And best of all, Mom has been sitting up. Her breathing is better. She can use the bathroom. She's alert and glued to daytime TV. A vast difference from yesterday. When Dad and I left her last night she was breathing with great difficulty, and she had been knocked out by a too-large dose of an anti-anxiety drug. This morning the nurse told me they had called a "code-med" about 7:30 p.m., which brought doctors swarming around her to devise a new strategy. They also called in a sitter to watch her all night because she became agitated and tried to get out of bed. They've changed her blood pressure meds, which made a huge difference.
Dad and I had a "creative breakthrough" last night. I fixed dinner in the apartment because we were both too tired to go to the dining room or a restaurant. After dinner I was giving him a preview of our plans for today (shower day for him, assisted by the home health aid). He was very thoughtful, then said, "Too many names." I asked if he was confused about names, and he said he was embarrassed that sometimes he cannot remember his own full name.
I said, "Dad, let's play a game." I folded a sheet of paper. On one side I wrote clues: your full name, your wife's name, daughter 1, daughter 2, grandson 1, grandson 2, etc. On the other side of the paper, on the corresponding lines, I wrote the names that belonged to each clue. I showed him how to look at the clue, try to recall the name, and turn the paper over to find the answer. He loved it! He wants me to add more names to the list. He hid his game under his placemat for safe keeping. I promised we'd play the game every day.
Sue
And best of all, Mom has been sitting up. Her breathing is better. She can use the bathroom. She's alert and glued to daytime TV. A vast difference from yesterday. When Dad and I left her last night she was breathing with great difficulty, and she had been knocked out by a too-large dose of an anti-anxiety drug. This morning the nurse told me they had called a "code-med" about 7:30 p.m., which brought doctors swarming around her to devise a new strategy. They also called in a sitter to watch her all night because she became agitated and tried to get out of bed. They've changed her blood pressure meds, which made a huge difference.
Dad and I had a "creative breakthrough" last night. I fixed dinner in the apartment because we were both too tired to go to the dining room or a restaurant. After dinner I was giving him a preview of our plans for today (shower day for him, assisted by the home health aid). He was very thoughtful, then said, "Too many names." I asked if he was confused about names, and he said he was embarrassed that sometimes he cannot remember his own full name.
I said, "Dad, let's play a game." I folded a sheet of paper. On one side I wrote clues: your full name, your wife's name, daughter 1, daughter 2, grandson 1, grandson 2, etc. On the other side of the paper, on the corresponding lines, I wrote the names that belonged to each clue. I showed him how to look at the clue, try to recall the name, and turn the paper over to find the answer. He loved it! He wants me to add more names to the list. He hid his game under his placemat for safe keeping. I promised we'd play the game every day.
Sue
Monday, April 2, 2007
Painful Premonitions
I seem to be gifted (or cursed) with a level of intuition that causes me to feel the pain of others. For example, when my sister-in-law was in a serious automobile accident that crushed her lungs, I had unexplained chest pains for about 48 hours before finding out about the accident. Once I was aware of the accident, the pains went away.
Some of you, having heard this story before, are saying, “Oh, there she goes again.” Those of you who have not, are thinking, “Oh, my God, Sue has gone off the deep end.” But if this blog is to be a true account of my thoughts and feelings during this caregiving adventure, I must risk my reputation.
I have never considered myself “psychic,” nor do I want to be. I am willing to believe that these experiences are pure coincidence. In fact, I’d rather believe that. If, indeed, I were some sort of barometer of others’ critical health conditions, that would be an unbearable responsibility.
There have been other times when strange and unusual pains have caused me to think, “Oh, my God, who’s in trouble?” I’ve almost called friends or relatives to ask, “Are you OK?” I think I could get away with that without someone committing me to the loony bin, but if I said, “Sorry to bother you, but I have a pain in my left arm…you’re not having a heart attack are you?” people would question my sanity. And how would I know whom to call?
This is not something I dwell on. The only reason it comes to mind now is that we are all wondering how long Mom had this cancer inside her mouth and why she or her dentist did not discover it sooner. Then, I recalled that for several months late last year (I can’t remember the exact time), I had a pain in my jaw. Perhaps I was grinding my teeth in my sleep (though that’s never been a problem). All I know is that I have not had that pain since Mom’s diagnosis in late January. Should I have called my mother to advise her to get to an oncologist?
If this is a gift, please dear God, tell what to do with it. And if you hear me complain about a pain, seek medical attention immediately.
Sue
Some of you, having heard this story before, are saying, “Oh, there she goes again.” Those of you who have not, are thinking, “Oh, my God, Sue has gone off the deep end.” But if this blog is to be a true account of my thoughts and feelings during this caregiving adventure, I must risk my reputation.
I have never considered myself “psychic,” nor do I want to be. I am willing to believe that these experiences are pure coincidence. In fact, I’d rather believe that. If, indeed, I were some sort of barometer of others’ critical health conditions, that would be an unbearable responsibility.
There have been other times when strange and unusual pains have caused me to think, “Oh, my God, who’s in trouble?” I’ve almost called friends or relatives to ask, “Are you OK?” I think I could get away with that without someone committing me to the loony bin, but if I said, “Sorry to bother you, but I have a pain in my left arm…you’re not having a heart attack are you?” people would question my sanity. And how would I know whom to call?
This is not something I dwell on. The only reason it comes to mind now is that we are all wondering how long Mom had this cancer inside her mouth and why she or her dentist did not discover it sooner. Then, I recalled that for several months late last year (I can’t remember the exact time), I had a pain in my jaw. Perhaps I was grinding my teeth in my sleep (though that’s never been a problem). All I know is that I have not had that pain since Mom’s diagnosis in late January. Should I have called my mother to advise her to get to an oncologist?
If this is a gift, please dear God, tell what to do with it. And if you hear me complain about a pain, seek medical attention immediately.
Sue
Sunday, April 1, 2007
"B" is for Bowel
In the realm of creative caregiving, the B-word comes up regularly. I intend the following to be helpful to readers, not graphic, nor offensive.
I happen to be blessed with bowels that move regularly and predictably. I am blessed, at least for now, not to take any medications that interfere with that particular function. However, I have arrived at this state of B-Bliss, not only due to blessings from above, but through carefully developed habits. I have learned that just the right amount of fluids (mostly water), lots of fiber and fruit, no white bread, little sugar, good high-fiber vegetables, exercise, and relaxation produce results.
Because this formula works so well for me, I admit to being a bit self-righteous and, well, evangelical about it. If only others who are B-challenged would convert from white bagels to oatmeal for breakfast, drink more water, and get a little more exercise, they too could be saved.
It seems grossly unfair for B-anxiety to rule one’s life; to plan all other activities around it. On the other hand, when one can mark a big “B” on the calendar, it is cause for rejoicing and celebration. Thanks be to God and oatmeal!
Sue
I happen to be blessed with bowels that move regularly and predictably. I am blessed, at least for now, not to take any medications that interfere with that particular function. However, I have arrived at this state of B-Bliss, not only due to blessings from above, but through carefully developed habits. I have learned that just the right amount of fluids (mostly water), lots of fiber and fruit, no white bread, little sugar, good high-fiber vegetables, exercise, and relaxation produce results.
Because this formula works so well for me, I admit to being a bit self-righteous and, well, evangelical about it. If only others who are B-challenged would convert from white bagels to oatmeal for breakfast, drink more water, and get a little more exercise, they too could be saved.
It seems grossly unfair for B-anxiety to rule one’s life; to plan all other activities around it. On the other hand, when one can mark a big “B” on the calendar, it is cause for rejoicing and celebration. Thanks be to God and oatmeal!
Sue
Thursday, March 29, 2007
Pretty Momma
I'm glad my sister called me this morning from the hospital to warn me about how Mom looks following surgery. My beautiful Momma has stitches (actually staples) from ear to chin, a swollen and bruised face, a tongue so swollen she can't speak, and tubes running all over the place carrying meds in and wastes out of her body.
If Dad wasn't sure what was going on when we sent her off to surgery, he certainly got his dose of reality today. Not only was it a shock to see Mom in this condition, it was a diffcult visit because there was no place for Dad to sit in the ICU room. We'd let him stand there beside the bed holding her hand for a while, then take him out to the hallway to sit down and rest. Then we'd go back in and visit a little more. Finally, I had to take Dad home so that he could get dinner and some rest.
Before going to the hospital, Mom assembled a plastic baggie of essentials that she wanted by her bed. There was no sense in leaving it in ICU, so I'm holding it to take to her tomorrow when, hopefully, she'll be in a regular room. But I noticed that one of the things she put in the bag is a mirror. I'm not ready for her to look in the mirror. I don't want her to feel sad, depressed, fearful that she's never going to be pretty again. Of course, she will be, but it will take time. I'd do anything to spare her the shock and anxiety that's bound to come from that first look in the mirror.
Sue
If Dad wasn't sure what was going on when we sent her off to surgery, he certainly got his dose of reality today. Not only was it a shock to see Mom in this condition, it was a diffcult visit because there was no place for Dad to sit in the ICU room. We'd let him stand there beside the bed holding her hand for a while, then take him out to the hallway to sit down and rest. Then we'd go back in and visit a little more. Finally, I had to take Dad home so that he could get dinner and some rest.
Before going to the hospital, Mom assembled a plastic baggie of essentials that she wanted by her bed. There was no sense in leaving it in ICU, so I'm holding it to take to her tomorrow when, hopefully, she'll be in a regular room. But I noticed that one of the things she put in the bag is a mirror. I'm not ready for her to look in the mirror. I don't want her to feel sad, depressed, fearful that she's never going to be pretty again. Of course, she will be, but it will take time. I'd do anything to spare her the shock and anxiety that's bound to come from that first look in the mirror.
Sue
Tuesday, March 27, 2007
Confusion
I see Dad’s confusion and dementia and I make assumptions. I assume he doesn’t understand what Mom is about to go through with her operation. I assume he will not be a reliable “agent” for Mom’s medical decisions if she were to be incapacitated. I assume he cannot understand what’s going on with his financial affairs, that he will forget to pay bills, if Mom is incapable of reminding him or paying them herself.
Certainly there is some evidence to support these assumptions. This leads me to believe I need to take control. Then, all of a sudden, Dad calls me on my assumptions. He expresses resentment that he has not been consulted about something. Or he asks a question that demonstrates he knows and understands more than I assumed.
Maybe I don’t give him enough credit. Maybe I’m not allowing him the dignity he deserves. Maybe I’m the one who is confused! In his own way, Dad is teaching me something about meeting people where they are, being open to their capabilities in the moment, respecting and loving them no matter what. And I think about how I will want to be treated by my family if/when my cognitive abilities begin to deteriorate. (Yikes! Must do more crosswords and Sudoku!) Patience, please, dear God.
Sue
Certainly there is some evidence to support these assumptions. This leads me to believe I need to take control. Then, all of a sudden, Dad calls me on my assumptions. He expresses resentment that he has not been consulted about something. Or he asks a question that demonstrates he knows and understands more than I assumed.
Maybe I don’t give him enough credit. Maybe I’m not allowing him the dignity he deserves. Maybe I’m the one who is confused! In his own way, Dad is teaching me something about meeting people where they are, being open to their capabilities in the moment, respecting and loving them no matter what. And I think about how I will want to be treated by my family if/when my cognitive abilities begin to deteriorate. (Yikes! Must do more crosswords and Sudoku!) Patience, please, dear God.
Sue
Interpreter
Mom’s hearing has been damaged, though we’re not sure how or why. We’re hoping it’s a temporary condition, perhaps resulting from the swelling in her jaw. Due to his Parkinsons, Dad speaks in a whisper, when he’s able to put words together at all. So, as you can imagine, communication is difficult.
Dad tries to speak. Mom appears to ignore him, though she really can’t hear him. Mom starts speaking at the same time Dad is trying to say something, which stops his train of thought and confuses him.
So here I am serving as interpreter. I hold up a hand for Mom to be quiet as I lean close to try to hear what Dad is saying. After he gets his thought out, I shout it at Mom. This is great material for a dark comedy. If Harold Pinter hasn’t already written this play, perhaps I will.
Sue
Dad tries to speak. Mom appears to ignore him, though she really can’t hear him. Mom starts speaking at the same time Dad is trying to say something, which stops his train of thought and confuses him.
So here I am serving as interpreter. I hold up a hand for Mom to be quiet as I lean close to try to hear what Dad is saying. After he gets his thought out, I shout it at Mom. This is great material for a dark comedy. If Harold Pinter hasn’t already written this play, perhaps I will.
Sue
Faith Community
On Sunday, I asked Mom for time off to go to a nearby Presbyterian church. I’m missing my church family back home, and I wanted to feel connected to people here who share my faith and who would know how to help if/when we need other community/spiritual resources. I found the people at this church welcoming, empathetic, and helpful. A woman about my age introduced herself before the worship service began, and, afterwards, she introduced me to several others including the pastor and a gentleman who lives in the same senior community where my parents live.
I went home and told Mom that she now has even more people praying for her. She’s very grateful, though she has no experience with Presbyterians (other than me) and said she had hoped I’d go to the Methodist church instead.
As I sat in church I reflected on the meaning of worship. In normal times, I consider it a time of praise and celebration. Though I do take my wants and needs to God in prayer, I think I usually do more thanking than asking. But on Sunday, I was in the asking mode…asking for more patience, more faith that all will go well with Mom’s surgery this week; asking for healing and courage for Mom, for understanding and comfort for Dad.
Sue
I went home and told Mom that she now has even more people praying for her. She’s very grateful, though she has no experience with Presbyterians (other than me) and said she had hoped I’d go to the Methodist church instead.
As I sat in church I reflected on the meaning of worship. In normal times, I consider it a time of praise and celebration. Though I do take my wants and needs to God in prayer, I think I usually do more thanking than asking. But on Sunday, I was in the asking mode…asking for more patience, more faith that all will go well with Mom’s surgery this week; asking for healing and courage for Mom, for understanding and comfort for Dad.
Sue
Tuesday, March 20, 2007
Insecure
Last night as I was helping Dad get ready for bed, I tried to step out of the action and watch the scene from a distance. I realized that I was barking orders, more like a drill sergeant than a loving caregiver. “Pick up your foot…now step over here…” On the other hand, the home health assistant who comes three days a week has a lovely, lilting, Jamaican accent and a soft, soothing tone.
I confessed to Dad as I was helping him that I am still learning how to help him. I asked him to be patient and to tell me if I do something wrong. He thought about that a minute, and asked, “Where do you learn this? Is this something your parents teach you?”
“Yes,” I said, “just like you and Mom are teaching me now.” But, ever since that conversation, I’ve been wondering if I’m doing them a huge disservice by attempting to do things that the home health aid went to school for years to learn and has practiced over many years on the job.
And I’m not the only one who is insecure. I know Mom is nervous about leaving Dad in my care. And Dad may have a legitimate reason for his paranoia!
Tomorrow I’ll make an appointment with someone who can explain the ins and outs of Medicare and secondary insurance. I’ll see about adding some nursing care when Mom gets out of the hospital, and I’ll find out when/how we can claim some of Dad’s care on insurance.
Today Mom had a pulmonary function test and was cleared for her surgery.
Sue
I confessed to Dad as I was helping him that I am still learning how to help him. I asked him to be patient and to tell me if I do something wrong. He thought about that a minute, and asked, “Where do you learn this? Is this something your parents teach you?”
“Yes,” I said, “just like you and Mom are teaching me now.” But, ever since that conversation, I’ve been wondering if I’m doing them a huge disservice by attempting to do things that the home health aid went to school for years to learn and has practiced over many years on the job.
And I’m not the only one who is insecure. I know Mom is nervous about leaving Dad in my care. And Dad may have a legitimate reason for his paranoia!
Tomorrow I’ll make an appointment with someone who can explain the ins and outs of Medicare and secondary insurance. I’ll see about adding some nursing care when Mom gets out of the hospital, and I’ll find out when/how we can claim some of Dad’s care on insurance.
Today Mom had a pulmonary function test and was cleared for her surgery.
Sue
Wednesday, March 14, 2007
The Elephant in the Room
It’s easier to talk to Mom about death and risks associated with her surgery than it is to talk about some of the legal decisions that I believe must be made now. When I suggested to Mom that we need to change the medical power of attorney so that Dad is not the sole decision maker if she is unable to make decisions for herself, her response was, “Oh, he’ll never go for that.”
I also believe my sister and I need power of attorney for their bank and investment accounts. If Mom becomes incapacitated for very long, Dad will not be able to write checks to pay the bills. But Dad’s paranoia makes it difficult for him to give up control. And we agree that there’s still a great deal of pride at stake. Here’s a man who, though he has difficulty walking, still wants to open doors for the ladies.
I’ve been watching to see if there’s a time of day when Dad’s medication makes him more (or less) able to think clearly and communicate with us. Yesterday we took Dad to see his neurologist who prescribed a new medication that may help with the dementia and paranoia. I'll give it a chance to work before I try to have this conversation.
I’m happy to say we’ve found some creative solutions to minor challenges: no more confusion about meals; I fix lunch for them and they go to the dining room for dinner and leave me to my ragout (or whatever). We’ve agreed to go out for one meal a week, and I’ll cook dinner for them on Sundays.
A few days ago I finally found a WIFI spot that will allow me to send emails from my mail program. It’s outside a cyber café, which, though closed at 9:30 a.m., still offered a signal I could use. However, when I went back this morning, I got no signal. The search goes on.
I also believe my sister and I need power of attorney for their bank and investment accounts. If Mom becomes incapacitated for very long, Dad will not be able to write checks to pay the bills. But Dad’s paranoia makes it difficult for him to give up control. And we agree that there’s still a great deal of pride at stake. Here’s a man who, though he has difficulty walking, still wants to open doors for the ladies.
I’ve been watching to see if there’s a time of day when Dad’s medication makes him more (or less) able to think clearly and communicate with us. Yesterday we took Dad to see his neurologist who prescribed a new medication that may help with the dementia and paranoia. I'll give it a chance to work before I try to have this conversation.
I’m happy to say we’ve found some creative solutions to minor challenges: no more confusion about meals; I fix lunch for them and they go to the dining room for dinner and leave me to my ragout (or whatever). We’ve agreed to go out for one meal a week, and I’ll cook dinner for them on Sundays.
A few days ago I finally found a WIFI spot that will allow me to send emails from my mail program. It’s outside a cyber café, which, though closed at 9:30 a.m., still offered a signal I could use. However, when I went back this morning, I got no signal. The search goes on.
Sunday, March 11, 2007
Time Warps
We all remembered to change our clocks last night so there was no excuse to miss church (at 3 p.m.!) but we did.
Ever since they began offering church in the senior community where my parents live, I've asked Mom weekly if she attended church. She always says, "No, I intended to, but I couldn't get your father ready in time." I have to admit I thought it was a lame excuse.
We had breakfast in a timely manner. Then we sat down at the desk to sort through bills, medical statements, and other business. At 1:00 p.m., a full two hours before church, I told them to start getting ready. I made them protein shakes so we wouldn't have to take time to eat lunch. But, despite Mom and I both trying to get Dad out of the shower, he wouldn't budge. We arrived at the church service as everyone was gathered outside the room for refreshments.
"Forgot to change your clocks?" someone asked. It was a handy excuse, but I responded, "No, we just underestimated the time to get ready."
Next weekend, we'll have Dad shower on Saturday and sleep in his clothes if necessary!
Sue
Ever since they began offering church in the senior community where my parents live, I've asked Mom weekly if she attended church. She always says, "No, I intended to, but I couldn't get your father ready in time." I have to admit I thought it was a lame excuse.
We had breakfast in a timely manner. Then we sat down at the desk to sort through bills, medical statements, and other business. At 1:00 p.m., a full two hours before church, I told them to start getting ready. I made them protein shakes so we wouldn't have to take time to eat lunch. But, despite Mom and I both trying to get Dad out of the shower, he wouldn't budge. We arrived at the church service as everyone was gathered outside the room for refreshments.
"Forgot to change your clocks?" someone asked. It was a handy excuse, but I responded, "No, we just underestimated the time to get ready."
Next weekend, we'll have Dad shower on Saturday and sleep in his clothes if necessary!
Sue
Finding the Groove
How do you insert yourself into someone else’s life without taking over in a way that is disruptive rather than helpful? That’s the question I’ve been asking myself. Though Mom and Dad need help, they do have their routines that support independent living. For example, they can go to dinner in the facility dining room or Bistro; in fact, the cost of a certain number of meals is included in their monthly fee, and if they don’t use the dining services, it’s money down the drain.
But I can’t go to dinner with them every night; that would be an extra cost and too expensive. So I had planned to cook for myself and eat as I would at home. Today I had planned to cook a vegetarian dish – kale and bean ragout – which makes enough for leftovers for several meals.
When dinnertime rolled around there was an awkward hour or so when Mom was saying she really wasn’t hungry, Dad wasn’t sure what was going on, and I was trying to persuade the two of them to go to the dining room as usual. It wasn’t that I wasn’t willing to share my ragout, but I knew Mom wouldn’t like it and I had a feeling Dad wouldn’t enjoy a vegetarian meal; he’s more of a meat and potatoes guy. However, Dad seemed to want to stay and eat kale, and by that time, Mom was also trying to persuade to go to the dining room. As they were finally starting to leave, Dad said, “I am really confused.”
I suspect Dad was thinking that I had come to cook dinner for them, as my sister does every few weeks. It’s a treat when they have a special meal cooked for them and they can take a break from the dining room fare. Or perhaps Dad thought it would be rude for them to go off and leave me to eat by myself. Whatever his confusion, he’s not able to express it.
But he’s not the only one confused. Now I’m feeling guilty for not having planned special meals for them. And I have a hard time imagining what to cook for them. I have my everyday (boring) menus that I cook for myself, and I have my gourmet club recipes that are expensive, fattening, and a lot of trouble. It’s going to take some creative thinking and collaboration with Mom and Dad to find the food groove that will serve us all well.
Sue
But I can’t go to dinner with them every night; that would be an extra cost and too expensive. So I had planned to cook for myself and eat as I would at home. Today I had planned to cook a vegetarian dish – kale and bean ragout – which makes enough for leftovers for several meals.
When dinnertime rolled around there was an awkward hour or so when Mom was saying she really wasn’t hungry, Dad wasn’t sure what was going on, and I was trying to persuade the two of them to go to the dining room as usual. It wasn’t that I wasn’t willing to share my ragout, but I knew Mom wouldn’t like it and I had a feeling Dad wouldn’t enjoy a vegetarian meal; he’s more of a meat and potatoes guy. However, Dad seemed to want to stay and eat kale, and by that time, Mom was also trying to persuade to go to the dining room. As they were finally starting to leave, Dad said, “I am really confused.”
I suspect Dad was thinking that I had come to cook dinner for them, as my sister does every few weeks. It’s a treat when they have a special meal cooked for them and they can take a break from the dining room fare. Or perhaps Dad thought it would be rude for them to go off and leave me to eat by myself. Whatever his confusion, he’s not able to express it.
But he’s not the only one confused. Now I’m feeling guilty for not having planned special meals for them. And I have a hard time imagining what to cook for them. I have my everyday (boring) menus that I cook for myself, and I have my gourmet club recipes that are expensive, fattening, and a lot of trouble. It’s going to take some creative thinking and collaboration with Mom and Dad to find the food groove that will serve us all well.
Sue
Saturday, March 10, 2007
Reporting for Duty
I drove the 30+ miles from my sister’s home to my parents’ apartment Friday morning and reported for duty. First order of business – take Mom to the hair salon. A clean head and pretty do are powerful medications! Then shopping, which, as Mom’s only recreation these days, was also therapeutic.
I was relieved to see Mom looking fairly well and, though she says she lacks energy, she seemed to be up to the usual activities of living. But perhaps that’s what’s been so deceptive; she cooks a little, cleans up, helps Dad dress, etc., and seldom complains. The normalcy of her daily life fooled us all into believing that she was just fine. We never thought to question, “When was the last time you had a physical? …went to the dentist? …had your blood checked?” We were all so shocked at the sudden diagnosis of cancer.
Mom says she wakes up at night and thinks about the ordeal ahead, but she says she isn’t afraid at night. It’s during the day when she thinks about it that she gets worried. It’s unclear whether Dad is worried; because of his dementia and his inability to speak clearly, we can’t always tell what’s going on in his head. However, he did ask if he would be able to go to the hospital with Mom. I assured him that he and I would be right beside her the whole time.
My next job is to figure out the upcoming appointments for further tests and pre-op work. Though Mom said she has an appointment early Monday morning, the only appointment card I saw was for one week from Monday. I feel a little like an understudy who is thrown on stage without having memorized the lines. Watch, listen, figure out what’s happening, and then improvise.
I was relieved to see Mom looking fairly well and, though she says she lacks energy, she seemed to be up to the usual activities of living. But perhaps that’s what’s been so deceptive; she cooks a little, cleans up, helps Dad dress, etc., and seldom complains. The normalcy of her daily life fooled us all into believing that she was just fine. We never thought to question, “When was the last time you had a physical? …went to the dentist? …had your blood checked?” We were all so shocked at the sudden diagnosis of cancer.
Mom says she wakes up at night and thinks about the ordeal ahead, but she says she isn’t afraid at night. It’s during the day when she thinks about it that she gets worried. It’s unclear whether Dad is worried; because of his dementia and his inability to speak clearly, we can’t always tell what’s going on in his head. However, he did ask if he would be able to go to the hospital with Mom. I assured him that he and I would be right beside her the whole time.
My next job is to figure out the upcoming appointments for further tests and pre-op work. Though Mom said she has an appointment early Monday morning, the only appointment card I saw was for one week from Monday. I feel a little like an understudy who is thrown on stage without having memorized the lines. Watch, listen, figure out what’s happening, and then improvise.
Thursday, March 8, 2007
Sweet Home Alabama
This last day on the road could have been a sentimental journey had I not felt so eager to get off the road. I was within a few interstate exits of my birthplace (Birmingham) and other haunts of my youth. But it was a lovely drive and the deeper I drove into the South, the more red bud and dogwood trees I saw in bloom.
As mentioned previously, I enjoy finding local restaurants and motels, but I must admit that Starbucks was a welcome site after two hours of driving on only the watery brew furnished free at the motel. And when I had to stop mid-afternoon for a conference call with a prospective client, I was fortunate to find another Starbucks.
The last 100 miles was a taste of life to come - bumper-to-bumper creeping through Atlanta area rush hour. I don't know how people do this all the time! I will do my best to avoid it as much as possible. I am so thankful to have arrived safely.
Thanks to all who have prayed for my safe travel!
Sue
As mentioned previously, I enjoy finding local restaurants and motels, but I must admit that Starbucks was a welcome site after two hours of driving on only the watery brew furnished free at the motel. And when I had to stop mid-afternoon for a conference call with a prospective client, I was fortunate to find another Starbucks.
The last 100 miles was a taste of life to come - bumper-to-bumper creeping through Atlanta area rush hour. I don't know how people do this all the time! I will do my best to avoid it as much as possible. I am so thankful to have arrived safely.
Thanks to all who have prayed for my safe travel!
Sue
Wednesday, March 7, 2007
The Largest Cross
I left Amarillo early driving straight into a glorious sunrise...pink clouds streaking across the horizon. Juxtaposed against God's creation was "the largest cross in the northern (or was it western?) hemisphere," which the sign promised would be a spiritual experience. Sorry, but God's sunrise trumped the cross.
After a few hours on the road, the Texas-shaped waffle I had for breakfast had worn off and I left the Interstate in search of "road food"; that is, food that is not mass-produced by McDonalds, Wendy's, KFC, or any other chain. No such luck. Elk City has been taken over by WalMart and the chains; I could find no local diner. The same was true in town after town I drove through today.
I was more fortunate at dinnertime. In downtown Little Rock, down the street from the Clinton Library, I found "The Flying Fish," an unpretentious restaurant with checkered vinyl tablecloths and garage doors opening the restaurant to the street. I stood in line salivating over the thought of fried catfish, while my conscience told me to order the healthier broiled fish or boiled shrimp. I finally compromised with the fried catfish salad. Wonderful!
Sue
After a few hours on the road, the Texas-shaped waffle I had for breakfast had worn off and I left the Interstate in search of "road food"; that is, food that is not mass-produced by McDonalds, Wendy's, KFC, or any other chain. No such luck. Elk City has been taken over by WalMart and the chains; I could find no local diner. The same was true in town after town I drove through today.
I was more fortunate at dinnertime. In downtown Little Rock, down the street from the Clinton Library, I found "The Flying Fish," an unpretentious restaurant with checkered vinyl tablecloths and garage doors opening the restaurant to the street. I stood in line salivating over the thought of fried catfish, while my conscience told me to order the healthier broiled fish or boiled shrimp. I finally compromised with the fried catfish salad. Wonderful!
Sue
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