It’s so easy to live in your own little world of hopes, dreams, expectations. Then, suddenly, Reality sneaks up behind, puts hands over your eyes, and says, “Guess who,” just like that game we played as kids. When you open your eyes, there’s Reality staring you in the face.
That’s the way I felt yesterday as I left the hospital with Dad and Sis after a visit with Mom. The Reality staring me in the face is that Mom – even if she survives this bout of acute lung problems and the upcoming radiation treatments for cancer – will never be the same.
In some ways it was a fun, uplifting visit. Mom was awake, alert, and funny. It was as though she had spent all day working on her stand-up comedy routine. She had a one-line comeback for everything we said, and even Dad was laughing. It started with her sitting there with the hospital telephone in her lap. When we walked in the door, she said, “Where have you been? I’ve been trying to call you all day!”
“Who were you trying to call, Mom? What number?”
“Well, I don’t have any of your numbers. I could hear someone talking, but they couldn’t hear me!”
We wrote down all our cell phone numbers on a pad of paper, and told her not to call in the middle of the night. We joked that we’d have the nurses remove the speaking valve from her trach tube if she didn’t behave.
Her pent-up conversation took a number of wild curves as she told us about something she’d overheard about hospital paper procurements (new paper not as good as the old paper); her worry about George Bush leading the country (what’s going to happen to us, she wondered); and her determination not to have a new Olin Mills portrait taken for her community directory (apparently confusing something I had said about my new church directory). There was an edge of paranoia and dementia in these ramblings, which may be due to long days with nothing but the TV and an occasional busy nurse for company. But Sis and I later shared our realization that Mom and Dad will have to go to assisted living – not just short term while Mom recovers – but forever. Of course, this was always a possibility that we acknowledged, and we had been researching various facilities. But deep down, I think we both thought/hoped that Mom would be able to live independently again.
Dad and I spent the weekend at Sis’s. After a fabulous dinner, I was in desperate need of a brisk walk to aid digestion and burn at least a few of the calories. Dad stayed with Sis’s partner, and Sis went walking with me. We returned to a paranoid Papa, who couldn’t be persuaded to go to bed until after midnight. He thought I was leaving. He heard noises in the house. He felt the need to hide his wallet. That was all he managed to articulate; only God knows what else was on his mind.
Was it Mom’s confusion that set him off? Was it the change in environment – staying a Sis’s house (even though he’s done that many times before)? Was it anything else we said in his presence (though we try to avoid talking about the future to spare him anxiety)? What kinds of strange imaginings will the two of them cook up when Mom and Dad are back together again?
Sue
Monday, April 30, 2007
Saturday, April 28, 2007
Creative Solutions
When you wake up to the realization that your old patterns are no longer serving you well, it’s time to change. Take this morning, for instance, as I tried to decide what to have for breakfast. I needed fruit, fiber, and protein without a ton of calories. None of my usual breakfast menus seemed to fit the requirements. So I made a salad of leafy greens, leftover chicken, and strawberries. It was a perfect solution.
This was not rocket science. And salad for breakfast is not original with me. In fact, Sis’s partner introduced me to the idea long ago. But now that I’ve broken my old pattern of thinking (salad isn’t for breakfast), I’m empowered to experiment with all sorts of novel choices.
The bigger problem that has plagued me ever since I began caring for Dad is how to get him into bed at night with minimal physical effort on my part. It’s not that I couldn’t lift him and place him on the bed, on top of the protective, water-poof pads. But I don’t want to get him into a dependent routine that Mom will be unable to do herself when she gets home from the hospital and is fully recovered from her surgery.
Dad has developed his own get-into-bed-routine that requires just a little help from me. However, due to his Parkinsons, he doesn’t remember it easily from night to night. It’s almost like being caught in a Groundhog Day time warp in which you must start all over again each night. And it can take him 20-30 minutes just to remember and then persuade his muscles to cooperate. It’s exhausting to watch him.
So, a couple of nights ago, as Dad struggled to remember what he has done each night for months, I sat on the side of the other twin bed and pretended I was Dad. I tried to imagine myself with very little flexibility in my back and little muscular coordination in my legs. Then I practiced over and over until I found a movement that I thought might work. Then, I had Dad try it.
Last night was our second try. It seems to be a much more natural and comfortable series of moves for him than the old way. Though I am giving a bit of lifting assistance to his legs, I am hopeful, with time, that he will be able to do more of it himself so that I (and later Mom) will do less.
Sue
This was not rocket science. And salad for breakfast is not original with me. In fact, Sis’s partner introduced me to the idea long ago. But now that I’ve broken my old pattern of thinking (salad isn’t for breakfast), I’m empowered to experiment with all sorts of novel choices.
The bigger problem that has plagued me ever since I began caring for Dad is how to get him into bed at night with minimal physical effort on my part. It’s not that I couldn’t lift him and place him on the bed, on top of the protective, water-poof pads. But I don’t want to get him into a dependent routine that Mom will be unable to do herself when she gets home from the hospital and is fully recovered from her surgery.
Dad has developed his own get-into-bed-routine that requires just a little help from me. However, due to his Parkinsons, he doesn’t remember it easily from night to night. It’s almost like being caught in a Groundhog Day time warp in which you must start all over again each night. And it can take him 20-30 minutes just to remember and then persuade his muscles to cooperate. It’s exhausting to watch him.
So, a couple of nights ago, as Dad struggled to remember what he has done each night for months, I sat on the side of the other twin bed and pretended I was Dad. I tried to imagine myself with very little flexibility in my back and little muscular coordination in my legs. Then I practiced over and over until I found a movement that I thought might work. Then, I had Dad try it.
Last night was our second try. It seems to be a much more natural and comfortable series of moves for him than the old way. Though I am giving a bit of lifting assistance to his legs, I am hopeful, with time, that he will be able to do more of it himself so that I (and later Mom) will do less.
Sue
Thursday, April 26, 2007
Financial Matters
I am grateful for a father-in-law who forced me to learn about investing when he gave our sons their first government bonds, and grateful for my husband who turned the family investment decisions over to me. Though there’s a lot I don’t know, I’m beyond the Investing for Dummies stage.
Thus, I feel fairly confident and competent when it comes to helping my parents with their finances. It’s clear they need help, though my father would be the last to admit it. Not only is he a control freak by personality, his Parkinsons, accompanied by some dementia and paranoia, causes him to look for conspiracies in every piece of mail he receives, including unsolicited credit card offers.
I will not go into private financial matters here, but the important lessons for all of us Boomers are these:
1. Make sure your children are money savvy and know how different investments work, including things like required IRA distributions after age 70 1/2.
2. Keep your financial records in order and give your most money-savvy child a thorough orientation to your affairs before you become incapacitated for any reason.
3. Review all your investment accounts and make sure your secondary beneficiaries are spelled out (while you can still remember their names).
4. Make sure your will, living will, living trust, medical power of attorney, and other documents are up-to-date while you still have your wits about you.
5. Think about how/when and to whom you will turn over your day-to-day financial affairs, including bill paying. Retire from this unpaid responsibility happily. If you have no children (or none who are money savvy), find someone else – family member, friend, or a paid representative – to be ready to help with your financial affairs when the time comes. Don’t assume your spouse will want, or be able, to do this for you forever.
6. Finally, if you find yourself needing to step in to help elderly parents, as I am, ask for advice. You’re not a pioneer; others have experiences to share. And there are good attorneys specializing in elder law who can help, too.
Sue
Thus, I feel fairly confident and competent when it comes to helping my parents with their finances. It’s clear they need help, though my father would be the last to admit it. Not only is he a control freak by personality, his Parkinsons, accompanied by some dementia and paranoia, causes him to look for conspiracies in every piece of mail he receives, including unsolicited credit card offers.
I will not go into private financial matters here, but the important lessons for all of us Boomers are these:
1. Make sure your children are money savvy and know how different investments work, including things like required IRA distributions after age 70 1/2.
2. Keep your financial records in order and give your most money-savvy child a thorough orientation to your affairs before you become incapacitated for any reason.
3. Review all your investment accounts and make sure your secondary beneficiaries are spelled out (while you can still remember their names).
4. Make sure your will, living will, living trust, medical power of attorney, and other documents are up-to-date while you still have your wits about you.
5. Think about how/when and to whom you will turn over your day-to-day financial affairs, including bill paying. Retire from this unpaid responsibility happily. If you have no children (or none who are money savvy), find someone else – family member, friend, or a paid representative – to be ready to help with your financial affairs when the time comes. Don’t assume your spouse will want, or be able, to do this for you forever.
6. Finally, if you find yourself needing to step in to help elderly parents, as I am, ask for advice. You’re not a pioneer; others have experiences to share. And there are good attorneys specializing in elder law who can help, too.
Sue
Monday, April 23, 2007
Chicken Soup RX
One of Mom’s wonderful friends who knew I had a cold called Saturday night to ask if she could drop off some homemade chicken soup after church Sunday morning. “Yes, thank you,” I answered.
The soup was thick with chicken, vegetables, and real, made-from-scratch noodles. Dad and I had it for dinner, along with crusty rolls, a salad, and some apple crisp that Sis’s partner made. The food itself is bound to have a healing effect, but the generosity and love with which it was offered is the miracle cure.
The cold is not completely gone but well under control. This week I’ll be able to spend more time with Mom who is making tiny, almost-invisible-to-the-naked-eye improvements. We’d like to measure her improvement in big smiles, ability to sit up, talk, or walk down the hall – things you can really see. But she’s not there yet. Her improvement is when the ventilator is set a notch lower, meaning that her lungs are doing more of the work.
We all – especially Mom – must be patient.
Sue
The soup was thick with chicken, vegetables, and real, made-from-scratch noodles. Dad and I had it for dinner, along with crusty rolls, a salad, and some apple crisp that Sis’s partner made. The food itself is bound to have a healing effect, but the generosity and love with which it was offered is the miracle cure.
The cold is not completely gone but well under control. This week I’ll be able to spend more time with Mom who is making tiny, almost-invisible-to-the-naked-eye improvements. We’d like to measure her improvement in big smiles, ability to sit up, talk, or walk down the hall – things you can really see. But she’s not there yet. Her improvement is when the ventilator is set a notch lower, meaning that her lungs are doing more of the work.
We all – especially Mom – must be patient.
Sue
Friday, April 20, 2007
Who is that masked woman?
I stood at the end of my mother’s hospital bed oozing germs from every pore, despite the mask over my nose and mouth. Mother motioned me to come closer but I dared not for fear of further compromising her fragile immune system. We were both suspended in pain like some grotesque Mexican day-of-the-dead sculpture.
This was the image that came to me at 2:30 a.m. as I attempted to sleep sitting up on the living room sofa. I was too congested to lay down flat, and I was trying to spare my father from the possible contamination and noise from my chorus of sneezing, wheezing, and nose blowing.
Miraculously, I woke up (if I was asleep at all) feeling better. No longer sneezing uncontrollably, I feel almost human, though certainly not well enough to do Mom any good today. I will once again don the mask for a quick peek at her and a brief conference with the medical staff, then leave. Sis will be there to offer more support sans germs.
Sue
This was the image that came to me at 2:30 a.m. as I attempted to sleep sitting up on the living room sofa. I was too congested to lay down flat, and I was trying to spare my father from the possible contamination and noise from my chorus of sneezing, wheezing, and nose blowing.
Miraculously, I woke up (if I was asleep at all) feeling better. No longer sneezing uncontrollably, I feel almost human, though certainly not well enough to do Mom any good today. I will once again don the mask for a quick peek at her and a brief conference with the medical staff, then leave. Sis will be there to offer more support sans germs.
Sue
Wednesday, April 18, 2007
Family Traits
Oh my God, I’m becoming my parents! My parents have wonderful traits I’m proud to inherit or emulate, but please, dear God, spare me the family stoop!
My father at age 84 has a severely stooped profile, as did his father and one of his sisters. I’m sure arthritis plays a part, and, in my father’s case, Parkinsons is a factor; his nervous system doesn’t communicate well with his muscles. One would think it would be less painful to stand up straight than to be bent in half, but that thought is meaningless in the reality of muscles that have become as accustomed to the bent position as a paperclip.
Yesterday, as I was walking slowly down the hallway beside my father, I realized that I was walking with my head hanging down between my shoulders, eyes aimed directly at my feet. There’s just no reason on a carpeted hallway to pay such close attention to each step, I thought with a start. I quickly straightened my back and neck, shoulders back, eyes straight ahead.
My father also lists to the left. At the dinner table he places his elbows on the chair arms, but as he leans farther and farther to the left, his elbow slips off the chair and his chin nearly hits the table. Last night, as I was watching him finish dinner, I realized that I was slumped over to the right - the mirror image of my father. I jerked myself upright and then gave Dad the discrete sign language we've developed that means "straighten up." Neither arthritis nor Parkinsons can excuse my sloppy posture. But if I don’t watch out, I too will be stooped at or before age 84.
Then, there’s my mother’s involuntary vocalization each and every time she exhales. Usually a “hmmm” sound, but with occasional groan-like variations. I suspect this is related to her chronic lung problems, an ailment I do not share. Yet, when I’m around her for very long, I catch myself making similar involuntary sounds.
Mindfulness is the first step toward correction. This week, mindful is my mantra.
Sue
My father at age 84 has a severely stooped profile, as did his father and one of his sisters. I’m sure arthritis plays a part, and, in my father’s case, Parkinsons is a factor; his nervous system doesn’t communicate well with his muscles. One would think it would be less painful to stand up straight than to be bent in half, but that thought is meaningless in the reality of muscles that have become as accustomed to the bent position as a paperclip.
Yesterday, as I was walking slowly down the hallway beside my father, I realized that I was walking with my head hanging down between my shoulders, eyes aimed directly at my feet. There’s just no reason on a carpeted hallway to pay such close attention to each step, I thought with a start. I quickly straightened my back and neck, shoulders back, eyes straight ahead.
My father also lists to the left. At the dinner table he places his elbows on the chair arms, but as he leans farther and farther to the left, his elbow slips off the chair and his chin nearly hits the table. Last night, as I was watching him finish dinner, I realized that I was slumped over to the right - the mirror image of my father. I jerked myself upright and then gave Dad the discrete sign language we've developed that means "straighten up." Neither arthritis nor Parkinsons can excuse my sloppy posture. But if I don’t watch out, I too will be stooped at or before age 84.
Then, there’s my mother’s involuntary vocalization each and every time she exhales. Usually a “hmmm” sound, but with occasional groan-like variations. I suspect this is related to her chronic lung problems, an ailment I do not share. Yet, when I’m around her for very long, I catch myself making similar involuntary sounds.
Mindfulness is the first step toward correction. This week, mindful is my mantra.
Sue
Tuesday, April 17, 2007
Lowered defenses
I think I'm getting a cold. What timing! Today Mom may be moved to her new long-term respiratory care center, and I want to be there with bells on to help her adjust. But I don't want to take a chance on spreading germs. I suppose I can don gloves, mask, gown, and lather myself with that anti-bacterial slime.
I hate to cast blame, but I'm feeling sleep-deprived and you-know-who has been keeping me up past my bedtime. Last night Dad deliberated for two hours about whether to renew his AAA membership. I tried to explain that he no longer needs trip planning or roadside assistance since he sold his car two years ago and can't drive. But in his 84-year-old head, this membership is related to insurance. Insurance is like a patriotic or civic duty; the more people in the pool, the better for everyone. Finally, he put the AAA letter away in his stash of other "personal" mail.
If I sound cranky and unsympathetic, I am...this morning. But I weep over this gentle man, with great integrety and propriety losing all personal control of his life and affairs.
Sue
I hate to cast blame, but I'm feeling sleep-deprived and you-know-who has been keeping me up past my bedtime. Last night Dad deliberated for two hours about whether to renew his AAA membership. I tried to explain that he no longer needs trip planning or roadside assistance since he sold his car two years ago and can't drive. But in his 84-year-old head, this membership is related to insurance. Insurance is like a patriotic or civic duty; the more people in the pool, the better for everyone. Finally, he put the AAA letter away in his stash of other "personal" mail.
If I sound cranky and unsympathetic, I am...this morning. But I weep over this gentle man, with great integrety and propriety losing all personal control of his life and affairs.
Sue
Personality and Faith
I actually wrote this and tried to post it early Sunday morning but my Internet connection was disrupted, perhaps because of a wild windstorm in the area. It could have been divine intervention, God’s way of telling me I hadn’t thought deeply enough about this topic. But now, more than 24 hours later, I’m not sure my thinking is any deeper or any different.
In the last few days, as I’ve watched my mother’s condition worsen, get better, and worsen again, I’ve realized that I’m a “glass half-full” kind of person. That is, I tend to find hope in the slightest signs of improvement, rather than despairing over what someone else might take as equally valid signs of deterioration. As I recognized this mindset, which may be partly due to innate personality, I also realized that some might call it “denial” or “naïveté.”
I also think it has something to do with faith. For I believe in a God that works miracles; not that He always gives us what we wish for. I can’t begin to understand His reasons and His timing. I know my 81-year-old mother with chronic lung problems isn’t going to live forever. I know that she has a tough road ahead – healing her lungs and facing radiation treatments for the cancer. I’m not afraid of her dying, especially if the alternative is perpetual life support via ventilator and feeding tube. But I have hope for a better day before the end.
And I believe that ill people need all the positive energy they can get. If I were in her shoes (and someday I will be), I’d rather have people standing around my bed with hope in their eyes, rather than guarded whispers about the problems and risks. Then again, I also would want people around me with the courage to say good-bye (and pull the plug if necessary) when my energy is not to be found in this world.
Sue
In the last few days, as I’ve watched my mother’s condition worsen, get better, and worsen again, I’ve realized that I’m a “glass half-full” kind of person. That is, I tend to find hope in the slightest signs of improvement, rather than despairing over what someone else might take as equally valid signs of deterioration. As I recognized this mindset, which may be partly due to innate personality, I also realized that some might call it “denial” or “naïveté.”
I also think it has something to do with faith. For I believe in a God that works miracles; not that He always gives us what we wish for. I can’t begin to understand His reasons and His timing. I know my 81-year-old mother with chronic lung problems isn’t going to live forever. I know that she has a tough road ahead – healing her lungs and facing radiation treatments for the cancer. I’m not afraid of her dying, especially if the alternative is perpetual life support via ventilator and feeding tube. But I have hope for a better day before the end.
And I believe that ill people need all the positive energy they can get. If I were in her shoes (and someday I will be), I’d rather have people standing around my bed with hope in their eyes, rather than guarded whispers about the problems and risks. Then again, I also would want people around me with the courage to say good-bye (and pull the plug if necessary) when my energy is not to be found in this world.
Sue
Friday, April 13, 2007
Country Music High
Since I don't do drugs, I go to Curves for my dose of endorphins. Today I'll need all the happy I can get. And today, the music of choice at Curves was country, not a genre I've listened to in many years. "I'm in love with you but I don't know your name...I'm married to you but I don't know your name..." It takes me back to courtship and early marriage with the wild and crazy man I married...happy memories. It also brings me right back to current reality, in which my Dad sometimes can't remember his own name, let alone Mom's.
I worked out extra hard today. I was still dancing to the music as I changed clothes in the dressing room, where, unfortunately, they have large mirrors. What a sight! Without a mirror, I could imagine myself 28 again, in a dirty dancing preamble to love making. What a difference a mirror makes! No wonder my sons say, "No, Mom, please don't..." if I try to dance in public.
I'll keep my mirrorless memories of myself at 28 and to hell with reality, thank you very much.
The reality I must deal with today is a meeting with the medical team to discuss options for Mom.
Sue
I worked out extra hard today. I was still dancing to the music as I changed clothes in the dressing room, where, unfortunately, they have large mirrors. What a sight! Without a mirror, I could imagine myself 28 again, in a dirty dancing preamble to love making. What a difference a mirror makes! No wonder my sons say, "No, Mom, please don't..." if I try to dance in public.
I'll keep my mirrorless memories of myself at 28 and to hell with reality, thank you very much.
The reality I must deal with today is a meeting with the medical team to discuss options for Mom.
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
Saturday, April 7, 2007
Sick and Bored
What do you do for a hospital-bound octogenarian who is bored? That’s the question my sister and I pondered this week. After my sister reported Mom’s complaint of boredom, I tried to engage her in a game of tic-tac-toe. But she seemed not to remember how to play it.
That really worried me. Has this whole ordeal affected her mental functions? She was sharp as a steel-tipped arrow before; now she seems more like the kind of kids’ arrow with Velcro; the loops don’t always engage.
My sister and I each used some creative thinking to make Mom’s Thursday in the hospital a bit less boring. Sis went to the store and bought a colorful gift bag and filled it full of fun stuff, including game books that are not too challenging. She also got colorful gel pens, little pads of paper and, best of all, a small clipboard for the pads of paper. Mom was delighted because her communication is still mostly through writing, and the small clipboard is easy to keep by her bed.
My contribution was art therapy (which turned out to be more therapeutic for me than Mom). I took my watercolors and painted a couple of small pictures of the spring flowers that she’s missing by being cooped up in the hospital (the azaleas are spectacular right now). These made her face light up and we hung them on the bulletin board in her room.
However, when I handed her paper and paint brush and suggested she paint, she seemed at a loss or disinterested. Perhaps it would be no different if she were well; she’s never been a painter.
Later, when I took Dad to see her, Mom asked me on her new clipboard pad, “Will you stay with me tonight?” It broke my heart to tell her that I had to stay at home with Dad, reminding her that he cannot stay alone. She just got this faraway, blank look on her face, which I read as sad but resigned.
Sue
That really worried me. Has this whole ordeal affected her mental functions? She was sharp as a steel-tipped arrow before; now she seems more like the kind of kids’ arrow with Velcro; the loops don’t always engage.
My sister and I each used some creative thinking to make Mom’s Thursday in the hospital a bit less boring. Sis went to the store and bought a colorful gift bag and filled it full of fun stuff, including game books that are not too challenging. She also got colorful gel pens, little pads of paper and, best of all, a small clipboard for the pads of paper. Mom was delighted because her communication is still mostly through writing, and the small clipboard is easy to keep by her bed.
My contribution was art therapy (which turned out to be more therapeutic for me than Mom). I took my watercolors and painted a couple of small pictures of the spring flowers that she’s missing by being cooped up in the hospital (the azaleas are spectacular right now). These made her face light up and we hung them on the bulletin board in her room.
However, when I handed her paper and paint brush and suggested she paint, she seemed at a loss or disinterested. Perhaps it would be no different if she were well; she’s never been a painter.
Later, when I took Dad to see her, Mom asked me on her new clipboard pad, “Will you stay with me tonight?” It broke my heart to tell her that I had to stay at home with Dad, reminding her that he cannot stay alone. She just got this faraway, blank look on her face, which I read as sad but resigned.
Sue
Thursday, April 5, 2007
Food
Dad and I have been going to the hospital in the afternoons. Sometimes we don't get back in time to go to the dining room at his facility. Sometimes I don't have much here that I can cook quickly, other than eggs or sandwiches. So we've had some pretty basic meals this week. One night it was fruit shakes (with protein powder) and peanut butter and banana on toast...yum.
Yesterday I promised we'd go to the hospital a bit earlier so that we could get home in time for a three-course dinner in the dining room. In the car we talked about our favorite things on the standard menu (I wanted to prep him to be able to make his ordering decision more quickly.). We talked about meatloaf, cat fish, and salmon, with side dishes of french fries, sweet potato, or green beans.
When we got to the dining room and looked at the menu before ordering, the special of the day - seafood ravioli - caught Dad's eye and he said that's what he wanted. That sounded good to me, too. The waiter took our order and Dad clearly said "seafood ravioli," but when the meal was served, Dad looked at it in shocked disappointment. "What's this? I didn't order this," he said.
Perhaps I should have known he was confused. Maybe I should have questioned when he said "seafood ravioli." Maybe I should have reminded him of the meatloaf, catfish, or salmon. I felt so badly that after looking forward to the first nice dinner in days, he was disappointed.
Dessert, of course, was cheese cake. Can't go wrong there. But the waiter misinterpreted my trying to help Dad order and brought me cheese cake too. Oh well, might as well eat it, I thought....One dessert in five weeks won't kill me or cancel out my weight loss. But afterwards, I was so stuffed I felt sick.
It's terrible to complain about these minor food disappointments when my mother is being fed through a tube. Not to mention all those who are going hungry in our own back yards and abroad. What we eat, as well as our attitudes about it, is a matter of habit. Today I will be more mindful.
Yesterday I promised we'd go to the hospital a bit earlier so that we could get home in time for a three-course dinner in the dining room. In the car we talked about our favorite things on the standard menu (I wanted to prep him to be able to make his ordering decision more quickly.). We talked about meatloaf, cat fish, and salmon, with side dishes of french fries, sweet potato, or green beans.
When we got to the dining room and looked at the menu before ordering, the special of the day - seafood ravioli - caught Dad's eye and he said that's what he wanted. That sounded good to me, too. The waiter took our order and Dad clearly said "seafood ravioli," but when the meal was served, Dad looked at it in shocked disappointment. "What's this? I didn't order this," he said.
Perhaps I should have known he was confused. Maybe I should have questioned when he said "seafood ravioli." Maybe I should have reminded him of the meatloaf, catfish, or salmon. I felt so badly that after looking forward to the first nice dinner in days, he was disappointed.
Dessert, of course, was cheese cake. Can't go wrong there. But the waiter misinterpreted my trying to help Dad order and brought me cheese cake too. Oh well, might as well eat it, I thought....One dessert in five weeks won't kill me or cancel out my weight loss. But afterwards, I was so stuffed I felt sick.
It's terrible to complain about these minor food disappointments when my mother is being fed through a tube. Not to mention all those who are going hungry in our own back yards and abroad. What we eat, as well as our attitudes about it, is a matter of habit. Today I will be more mindful.
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
Yesterday's haiku
I want to run...
Not away, but enough to leave gravity and responsibilities behind
Even for a mile.
Sue
Not away, but enough to leave gravity and responsibilities behind
Even for a mile.
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
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