Full-time 24/7 caregiving places stress on every aspect of your life. Whether your marathon is just beginning, or it's been so long that it seems never-ending, you are already aware of this. Finding outlets for stress relief is vital for your well-being and health, both physical and spiritual. God made us spiritual beings and when that part of our lives dries up, no amount of "away time" or crafting, sewing, reading, TV watching will substitute.
I find true renewal in Bible study and prayer. To be honest, I have always had trouble "not being in control" of events in my life. And although my head says, "I'm putting this in God's hands", most of the time, my heart refuses to let go. My husband has had multiple surgeries, most of them an emergency or a physical situation that finally got so bad, he had no choice. I think I have finally learned to trust that God is going to work out the details. But on more than one occasion He has had to thump me on the head to get my attention, reminding me once again to Let Go and Let God.
That being said, I have really been working at a regular devotional and Bible reading time. In January, I decided to read the Bible through this year, using a devotional Bible which divides up the readings and begins each day with a very short devotional which applies to the readings. I can't begin to count how many times the reading for the day, or the devotional thought, gave me just the lift I needed at the moment.
Scriptures that I lean on? Isaiah 40:31, Philippians 4:13, Philippians 4:19, Micah 6:8, Psalm 56:3, and my husband's favorite, Mark 9:23. I'm sure you have yours as well.
In really stressful moments (joyful moments too), I sing -- out loud, sometimes off key, but always with a prayerful heart. As a child and teenager, I was in both morning and evening services every Sunday at our local Southern Baptist Church. I sang in the choir all through my high school years, and the old hymns in the Baptist Hymnal are imbedded in my memory. (Usually the 1st, 2nd, and last verses!) Even though many of the old songs are "out of fashion" now, the message in the lyrics bring me peace in really stressful times. Besides, how can you feel depressed after singing "To God Be the Glory" at the top of your lungs?
Finally, praying is something that we do need to schedule time for, but I find myself breathing short bursts in odd places: bathroom, at the kitchen sink, driving to work, or sitting quietly before sleep catches up with me. This is where I gather the strength I depend on as I know the He is always listening, whether I'm praising His name, praying for a friend in need, asking forgiveness where I have failed, or thanking Him for my blessings, large and small. Believe me, in the lows and highs of this long marathon we are in, it is only through leaning on God's strength that we will survive.
Thursday, June 20, 2013
Saturday, May 25, 2013
Coping - Part Two -- Physically and Mentally
I think the phrase I hear the most often is "take care of yourself". Certainly it's a good idea, but I have found that is probably the hardest part of this journey.
If your loved one is like mine, caregiving is a 24/7 job. That means that if you want to do "something for yourself", you may be able to schedule it, or it may be something that happens randomly, or as I like to think, serendipitously! (God has a way of opening up a slot of time that is an unexpected blessing.)
What is "taking care of yourself"? I believe it is relieving the day-to-day stress of caregiving, getting away from the house if possible, or setting aside time to do things you like to do. I love to read, and having books on the e-reader has made that much easier for me. The variety of books I have on my Nook allows me to pick and choose whatever suits my time constraints and the mood I'm in. I have fiction, biography, history, devotionals, just to name a few. So if I only have 15 minutes, I can read a bit, or play some Solitaire if that's what I want.
You may be a crafter, or quilter, or love to sew. I'm not talented in that area, but if that was what I needed to do for me, I would clean off my dining room table (a challenge in itself!), and set up my craft/sewing center there. Our house is small, and that's the best place I would have. By doing that, I could work on on-going projects when I had a few minutes. It might look messy, but it would make working in short bursts possible. I'm sure you could come up with some good ideas of your own.
Getting out of the house by myself is one of my challenges. I can leave Tommy alone for a short while, as in going to pick up or drop off one of the grandkids, but leaving him longer than 30 or 40 minutes is not a good idea. So taking care of needed day to day errands can be a challenge.
For instance, just getting a haircut can be a adventure. Scheduling one sometimes works out, so that I can plan to have someone stay with Tommy while I'm away. But often I end up cancelling my appointment because of some crisis that requires my presence. One solution I found: there are a couple of places in town which accept walk-in's, so that has been my go-to when my hair absolutely positively has to have a good hair cut!
Shopping can also be another challenge. It used to be a chore that had to be done, or an opportunity to shop recreationally. Now, getting out to shop requires a bit of planning ahead. When our son got married, his wife and I got in the habit of going on Friday nights to get our groceries. It has become such a habit that I start my next week's list as soon as I get back from Wal-Mart. I keep a pad on the refrigerator so I can jot things down as I think of them. Because we have this "scheduled event", we have figured out ways to have someone with Papa. My grandson is 15, and he is pretty good at helping Papa while we're away. And since Wal-Mart is only 10 minutes from the house, I can get home quickly in an emergency.
And, I have finally figured out that on-line shopping really works! I do enjoy messing around on the computer, searching for information, browsing on Ebay, and this has also been my "go-to". Our Christmas shopping was accomplished earlier than usual because I "let my fingers do the walking". As a result, I enjoyed Christmas and all of the fun parts that go with it because I was not stressed trying to get that last perfect gift.
One other way I "take care of myself" is my part-time job. Until two years ago, I worked full time in the Student Records Office at Campbellsville University. Then, with the realization that Tommy's health was only getting worse, and I could not give my full attention to my job and take care of him, too, I took our open part-time position. The hand writing had been on the wall for at least 3 months, as we knew our part time lady was leaving. I just didn't see it. When God thumped me on the back of the head and said "take the part time job -- what are you waiting for?", the transition was almost seamless.
I'm sure you're wondering how working can be "taking care of me" -- but I am blessed beyond measure in the circle of Christian sisters I work with. We truly care about one another and forgive each other for our quirks! And I truly enjoy the work I do. I feel I am contributing to our office's mission, I enjoy my assigned tasks, and that is true stress relief. I have a precious friend who stays with Tommy while I am at work, and I trust her to keep me informed of anything I need to know while I'm away.
"Coping" involves many facets of our lives, physical, emotional, spiritual. I am blessed in that I have a wonderful support system of friends and family I can reach out to when I'm at the end of my rope. If you stop and look around, you do too. But you have to let them help, even if it seems like something as simple as sitting with your spouse so you can go to Walmart.
If your loved one is like mine, caregiving is a 24/7 job. That means that if you want to do "something for yourself", you may be able to schedule it, or it may be something that happens randomly, or as I like to think, serendipitously! (God has a way of opening up a slot of time that is an unexpected blessing.)
What is "taking care of yourself"? I believe it is relieving the day-to-day stress of caregiving, getting away from the house if possible, or setting aside time to do things you like to do. I love to read, and having books on the e-reader has made that much easier for me. The variety of books I have on my Nook allows me to pick and choose whatever suits my time constraints and the mood I'm in. I have fiction, biography, history, devotionals, just to name a few. So if I only have 15 minutes, I can read a bit, or play some Solitaire if that's what I want.
You may be a crafter, or quilter, or love to sew. I'm not talented in that area, but if that was what I needed to do for me, I would clean off my dining room table (a challenge in itself!), and set up my craft/sewing center there. Our house is small, and that's the best place I would have. By doing that, I could work on on-going projects when I had a few minutes. It might look messy, but it would make working in short bursts possible. I'm sure you could come up with some good ideas of your own.
Getting out of the house by myself is one of my challenges. I can leave Tommy alone for a short while, as in going to pick up or drop off one of the grandkids, but leaving him longer than 30 or 40 minutes is not a good idea. So taking care of needed day to day errands can be a challenge.
For instance, just getting a haircut can be a adventure. Scheduling one sometimes works out, so that I can plan to have someone stay with Tommy while I'm away. But often I end up cancelling my appointment because of some crisis that requires my presence. One solution I found: there are a couple of places in town which accept walk-in's, so that has been my go-to when my hair absolutely positively has to have a good hair cut!
Shopping can also be another challenge. It used to be a chore that had to be done, or an opportunity to shop recreationally. Now, getting out to shop requires a bit of planning ahead. When our son got married, his wife and I got in the habit of going on Friday nights to get our groceries. It has become such a habit that I start my next week's list as soon as I get back from Wal-Mart. I keep a pad on the refrigerator so I can jot things down as I think of them. Because we have this "scheduled event", we have figured out ways to have someone with Papa. My grandson is 15, and he is pretty good at helping Papa while we're away. And since Wal-Mart is only 10 minutes from the house, I can get home quickly in an emergency.
And, I have finally figured out that on-line shopping really works! I do enjoy messing around on the computer, searching for information, browsing on Ebay, and this has also been my "go-to". Our Christmas shopping was accomplished earlier than usual because I "let my fingers do the walking". As a result, I enjoyed Christmas and all of the fun parts that go with it because I was not stressed trying to get that last perfect gift.
One other way I "take care of myself" is my part-time job. Until two years ago, I worked full time in the Student Records Office at Campbellsville University. Then, with the realization that Tommy's health was only getting worse, and I could not give my full attention to my job and take care of him, too, I took our open part-time position. The hand writing had been on the wall for at least 3 months, as we knew our part time lady was leaving. I just didn't see it. When God thumped me on the back of the head and said "take the part time job -- what are you waiting for?", the transition was almost seamless.
I'm sure you're wondering how working can be "taking care of me" -- but I am blessed beyond measure in the circle of Christian sisters I work with. We truly care about one another and forgive each other for our quirks! And I truly enjoy the work I do. I feel I am contributing to our office's mission, I enjoy my assigned tasks, and that is true stress relief. I have a precious friend who stays with Tommy while I am at work, and I trust her to keep me informed of anything I need to know while I'm away.
"Coping" involves many facets of our lives, physical, emotional, spiritual. I am blessed in that I have a wonderful support system of friends and family I can reach out to when I'm at the end of my rope. If you stop and look around, you do too. But you have to let them help, even if it seems like something as simple as sitting with your spouse so you can go to Walmart.
Friday, April 19, 2013
Coping - Part One
Coping with stress, coping with a cranky spouse, coping with a disrupted household, coping with holidays, coping with finances, coping with being "on the road" all the time, coping with . . . You get the picture.
Let me say this: I've had a lot of experience coping. The surgeries I have written about are just the last two in a long sequence of Tommy's surgeries, and then there's my broken ankle and broken hip which came into play during all of this as well. On top of that, Tommy's mother came to live with us the summer of 2005. She was 86, in failing health, and lived 1000 miles from us, so we sort of snookered her into coming for one of her usual visits and convinced her to keep staying longer and longer.
So when Tommy faced a cervical spine surgery the spring of 2006, I warned Mom and Tommy that with all of this to cope with, I was probably going to get cranky once in a while! And of course, I did. The problem was, I felt like I couldn't yell at either one of them, as the situation we found ourselves in was "nobody's fault", so I figured out a wonderful stress relief.
Our washer and dryer is in the basement. When I reached a boiling point, I would loudly announce, "I'm going to do some laundry," and head downstairs. Then I would proceed to yell and scream at the poor innocent washer and dryer, blaming them for whatever I was stressed about at the time. Then I would go upstairs and speak very calmly to my husband and mom-in-law, knowing that as both of them were hard of hearing, neither one of them could hear what went on downstairs!
Not that I recommend yelling at innocent appliances, but when we humans are stressed, we have to find an outlet, or we will explode. I call it the Mount St. Helen's Syndrome. Yelling at the washing machine was my pressure valve, allowing me to calm down, pray it through, and then deal with my family lovingly and calmly.
There are many outlets for relieving stress. I have a couple of different devotional books which help me find just the right prayer thought or scripture which applied to the crisis of the moment. God has a way of putting just the right thought in my path which soothes my troubled spirit most. In fact, I highly recommend Max Lucado's Live Loved. I got it for my Nook, and it really helped me during the dark months last year.
Another stress outlet is music. We all have different tastes, and I love old fashioned hymns more than anything. On some of my "road trips" to or from the hospital or rehab, I would sing my favorites from the Baptist Hymnal, out loud, sometimes singing the alto part, sometimes off key, often through tears, but it always made me feel better and more able to cope. All of my life, God has spoken to me through music, and this was no exception.
Laughter -- great stress reliever! I don't sit and read joke books, but some of the funny postings on FaceBook have been perfect for a good belly laugh. One of my friends is always posting funny things she hears from the preschoolers she teaches. Some of my best belly laughs come from her! And if I have time, some of my favorite funny movies fill the bill, too.
Finally, tears. Yes, there is nothing quite so anxiety emptying as a good old fashioned cry. I've had my share over the past year, sometimes started by something as simple as a Hallmark Card commercial! God knows and understands when the difficulties we deal with are finally too much and gives us permission to grieve a little. I have cried, yelled at God, cried some more, asked forgiveness, asked for peace, and at the end of my "good cry" (that's what my mother called it), I always feel empty of the tension which had so filled me up there was no room to feel His love.
That's when I feel I am truly "coping" with my caregiving marathon. Believe me, it is not through my strength that I am surviving this marathon, but because I am relying on God's promise: Philippians 4:13 "I can do all things through Him Who gives me strength."
Let me say this: I've had a lot of experience coping. The surgeries I have written about are just the last two in a long sequence of Tommy's surgeries, and then there's my broken ankle and broken hip which came into play during all of this as well. On top of that, Tommy's mother came to live with us the summer of 2005. She was 86, in failing health, and lived 1000 miles from us, so we sort of snookered her into coming for one of her usual visits and convinced her to keep staying longer and longer.
So when Tommy faced a cervical spine surgery the spring of 2006, I warned Mom and Tommy that with all of this to cope with, I was probably going to get cranky once in a while! And of course, I did. The problem was, I felt like I couldn't yell at either one of them, as the situation we found ourselves in was "nobody's fault", so I figured out a wonderful stress relief.
Our washer and dryer is in the basement. When I reached a boiling point, I would loudly announce, "I'm going to do some laundry," and head downstairs. Then I would proceed to yell and scream at the poor innocent washer and dryer, blaming them for whatever I was stressed about at the time. Then I would go upstairs and speak very calmly to my husband and mom-in-law, knowing that as both of them were hard of hearing, neither one of them could hear what went on downstairs!
Not that I recommend yelling at innocent appliances, but when we humans are stressed, we have to find an outlet, or we will explode. I call it the Mount St. Helen's Syndrome. Yelling at the washing machine was my pressure valve, allowing me to calm down, pray it through, and then deal with my family lovingly and calmly.
There are many outlets for relieving stress. I have a couple of different devotional books which help me find just the right prayer thought or scripture which applied to the crisis of the moment. God has a way of putting just the right thought in my path which soothes my troubled spirit most. In fact, I highly recommend Max Lucado's Live Loved. I got it for my Nook, and it really helped me during the dark months last year.
Another stress outlet is music. We all have different tastes, and I love old fashioned hymns more than anything. On some of my "road trips" to or from the hospital or rehab, I would sing my favorites from the Baptist Hymnal, out loud, sometimes singing the alto part, sometimes off key, often through tears, but it always made me feel better and more able to cope. All of my life, God has spoken to me through music, and this was no exception.
Laughter -- great stress reliever! I don't sit and read joke books, but some of the funny postings on FaceBook have been perfect for a good belly laugh. One of my friends is always posting funny things she hears from the preschoolers she teaches. Some of my best belly laughs come from her! And if I have time, some of my favorite funny movies fill the bill, too.
Finally, tears. Yes, there is nothing quite so anxiety emptying as a good old fashioned cry. I've had my share over the past year, sometimes started by something as simple as a Hallmark Card commercial! God knows and understands when the difficulties we deal with are finally too much and gives us permission to grieve a little. I have cried, yelled at God, cried some more, asked forgiveness, asked for peace, and at the end of my "good cry" (that's what my mother called it), I always feel empty of the tension which had so filled me up there was no room to feel His love.
That's when I feel I am truly "coping" with my caregiving marathon. Believe me, it is not through my strength that I am surviving this marathon, but because I am relying on God's promise: Philippians 4:13 "I can do all things through Him Who gives me strength."
Wednesday, April 17, 2013
Expect the unexpected!
I don't know how your life has gone, but when getting ready for any event, whether it's a trip to the grocery store or major surgery, I start with what I call Plan A. Generally, by the time the event actually takes place, there have been so many changes to Plan A that I am down to Plan F or Plan G. There have been a few times I've gotten all the way to Plan Z!
Let's face it: stuff happens. I had admitting this, but it has taken me several decades to figure out that when "stuff" happens, I have to take a deep breath, change MY plan, and go with the new one.
Surgery is no exception to that rule. Assistants set schedules, hospital administrators schedule operating room times, and surgeons are experts at sabotaging the best laid schedules. So, when you are told:
"be at the hospital by 6:30 am, post op will take about 45 minutes, surgery is scheduled for 8:00 am, and should take 2 hours. One hour in recovery, and you should be in your room by 1:30 at the latest." Just know that your chances of actually seeing this schedule happen as planned is about as likely as my chances of winning the lottery. Slim to none - especially since I don't actually buy lottery tickets!
Prepare your spouse for this eventuality so his anxiety level remains as low as possible. Most hospitals we have been in have allowed me to sit with Tommy until he is wheeled into surgery, so I had to work to be positive and calm when the inevitable delays happened.
This was especially difficult in December 2011 when he was all prepped and then told that because his kidney "number" was not what it should be, the surgery was being scrubbed To my relief, our surgeon stepped in and arranged for him to be admitted so tests could be run and surgery rescheduled for two days later. As you can see, this is exactly what I'm talking about.
Honestly, I wasn't at all prepared for that kind of a delay, and I got more than a little bit weepy and anxious. Fortunately, our son was with me, he was calm, and we were able to get through the delay. When we prepared for the next surgery six months later, I was much calmer. Really, I was!
The best preparation for Plans A through Z is prayer. God knows what is going to happen and if I couldn't have depended on His strength, I don't know how I would have handled all of the unexpected problems which came up.
Best preparation of all? Prayer! "I can do all things through Him who gives me strength." Remember: "all things".
Let's face it: stuff happens. I had admitting this, but it has taken me several decades to figure out that when "stuff" happens, I have to take a deep breath, change MY plan, and go with the new one.
Surgery is no exception to that rule. Assistants set schedules, hospital administrators schedule operating room times, and surgeons are experts at sabotaging the best laid schedules. So, when you are told:
"be at the hospital by 6:30 am, post op will take about 45 minutes, surgery is scheduled for 8:00 am, and should take 2 hours. One hour in recovery, and you should be in your room by 1:30 at the latest." Just know that your chances of actually seeing this schedule happen as planned is about as likely as my chances of winning the lottery. Slim to none - especially since I don't actually buy lottery tickets!
Prepare your spouse for this eventuality so his anxiety level remains as low as possible. Most hospitals we have been in have allowed me to sit with Tommy until he is wheeled into surgery, so I had to work to be positive and calm when the inevitable delays happened.
This was especially difficult in December 2011 when he was all prepped and then told that because his kidney "number" was not what it should be, the surgery was being scrubbed To my relief, our surgeon stepped in and arranged for him to be admitted so tests could be run and surgery rescheduled for two days later. As you can see, this is exactly what I'm talking about.
Honestly, I wasn't at all prepared for that kind of a delay, and I got more than a little bit weepy and anxious. Fortunately, our son was with me, he was calm, and we were able to get through the delay. When we prepared for the next surgery six months later, I was much calmer. Really, I was!
The best preparation for Plans A through Z is prayer. God knows what is going to happen and if I couldn't have depended on His strength, I don't know how I would have handled all of the unexpected problems which came up.
Best preparation of all? Prayer! "I can do all things through Him who gives me strength." Remember: "all things".
Tuesday, April 16, 2013
Remember - the nurse is your friend!
I'm sure if you've had any hospital experiences at all, you know that the nurses are around much more than the doctors! I have to confess that I have had to learn how to work with the nurse's assistants and the nurses so that I would be considered "part of the team", and not "someone in the way". Believe me, it can go either way in any given situation.
You want the nurses overall to think of you as someone they can trust, that the information you give them will help them in caring for your loved one. So here's a few simple tips. If these are too simple sounding, forgive me -- I know there are some people out there who have had absolutely no hospital experiences at all, so I am mostly speaking to them. Feel free to chime in with ideas of your own!
1. It will be hard, but try to learn the names of the nurses assigned to your spouse. That way when he needs something, you can ask for his specific nurse.
That accomplishes two very important tasks: (1) the nurse feels less anonymous when you interact with her by name. (I had to write the names down in the notebook -- I'm terrible with names!), and (2) his nurse knows you are keeping track of what is happening with your spouse's care, and who is responsible.
2. Keep track of the shift change times and try to avoid calling just as the nurses are trying to give report to the new shift nurses. I kept track of when he had his pain medicine and tried to avoid him being in terrible pain needing medication at shift change time.
This is the most difficult time to get help, and I think it is the most dangerous time for seriously ill patients, as I have had to wait for 30 to 40 minutes a few times for someone to come and help change Tommy's brief, tend to a beeping IV, etc., during shift change.
That being said, check your watch when you have to call the nurse. Keep track of how long it takes to actually get someone in the room -- not just the anonymous "Can I help you?" from the intercom. If your spouse needs something urgent, walk down to the nurse's station and flag someone down. (More than once if you have to!)
3. Smile at the nurses and assistants when they come in and ALWAYS say thank you for everything they do, even if it's something as simple as filling the ice pitcher. These ladies and gentlemen are on their feet for long periods of time, dealing with sick, cranky people, and a little appreciation goes a long way.
4. This is a very difficult time for you and your loved one, and whether he is a "good" patient or not, you be a "good" spouse. In other words, remember what Jesus said: "do unto others as you would have them do unto you.".
5. Remember, that the health care staff are people with children, parents, soccer matches, car trouble, helping children with homework, and all the other events that fill up life. Most likely they do not live at the hospital, and even more likely, the pay they receive is not nearly as much as it should be.
As the professionals come in and out of the room, you have an opportunity to pray for each one by name. This simple act reminds you that we are all God's children and He cares for us all.
I hope these ideas help, and please feel free to add other hints to the list. We are in this Caregiving Marathon together,
You want the nurses overall to think of you as someone they can trust, that the information you give them will help them in caring for your loved one. So here's a few simple tips. If these are too simple sounding, forgive me -- I know there are some people out there who have had absolutely no hospital experiences at all, so I am mostly speaking to them. Feel free to chime in with ideas of your own!
1. It will be hard, but try to learn the names of the nurses assigned to your spouse. That way when he needs something, you can ask for his specific nurse.
That accomplishes two very important tasks: (1) the nurse feels less anonymous when you interact with her by name. (I had to write the names down in the notebook -- I'm terrible with names!), and (2) his nurse knows you are keeping track of what is happening with your spouse's care, and who is responsible.
2. Keep track of the shift change times and try to avoid calling just as the nurses are trying to give report to the new shift nurses. I kept track of when he had his pain medicine and tried to avoid him being in terrible pain needing medication at shift change time.
This is the most difficult time to get help, and I think it is the most dangerous time for seriously ill patients, as I have had to wait for 30 to 40 minutes a few times for someone to come and help change Tommy's brief, tend to a beeping IV, etc., during shift change.
That being said, check your watch when you have to call the nurse. Keep track of how long it takes to actually get someone in the room -- not just the anonymous "Can I help you?" from the intercom. If your spouse needs something urgent, walk down to the nurse's station and flag someone down. (More than once if you have to!)
3. Smile at the nurses and assistants when they come in and ALWAYS say thank you for everything they do, even if it's something as simple as filling the ice pitcher. These ladies and gentlemen are on their feet for long periods of time, dealing with sick, cranky people, and a little appreciation goes a long way.
4. This is a very difficult time for you and your loved one, and whether he is a "good" patient or not, you be a "good" spouse. In other words, remember what Jesus said: "do unto others as you would have them do unto you.".
5. Remember, that the health care staff are people with children, parents, soccer matches, car trouble, helping children with homework, and all the other events that fill up life. Most likely they do not live at the hospital, and even more likely, the pay they receive is not nearly as much as it should be.
As the professionals come in and out of the room, you have an opportunity to pray for each one by name. This simple act reminds you that we are all God's children and He cares for us all.
I hope these ideas help, and please feel free to add other hints to the list. We are in this Caregiving Marathon together,
Saturday, April 13, 2013
What goes in the "hospital tote"?
The spouse/caregiver will be sitting for lonnnnng periods of time, and a little preparation makes a lot of difference in comfort level!
I don't know about you, but I get anxious in spite of myself before a trip or procedure. Planning ahead as much as possible helps me be organized and helps Tommy because I am calmer. When I am calm, he is better.
I knew that there might be times when it would be difficult for me to get away from his room to get something to eat, that there would be NOTHING on TV, that the hospital is always COLD, whatever the season.
So, here's my list:
notebook
folder to keep all those papers in
neck pillow (hospital pillows are terrible!)
warm sweater or jacket
book or something to read
snacks: my favorites, and some I could share.
chocolate (M & M's are best - melt in your mouth, not in your hands)
peanut butter crackers
pringles in small packages
Diet cokes in small bottles (I don't like coffee, and bringing my own DC saved a bundle of $!)
drink glass with lid and straw (the lid is a necessity as if it can be spilled, I will spill it. Ice is
available at the nurse's station. I would walk up to the station and asked very nicely. Even
offered to get it myself.)
small zip lock bag of quarters (vending machines are picky about dollar bills)
cell phone charger
laptop computer (this was the first surgery I brought one, and I ended up leaving it in his room when I
went to our friends to sleep)
When he had the next surgery 6 months later, I took my Nook instead -- not nearly as much weight
to carry around!
I'm sure there was other "stuff" in the tote, but this is my basic travel list. Yours will most likely be different, but it helps me to make a list so I pack the most "vital" necessities (diet coke and chocolate, of course!)
I don't know about you, but I get anxious in spite of myself before a trip or procedure. Planning ahead as much as possible helps me be organized and helps Tommy because I am calmer. When I am calm, he is better.
I knew that there might be times when it would be difficult for me to get away from his room to get something to eat, that there would be NOTHING on TV, that the hospital is always COLD, whatever the season.
So, here's my list:
notebook
folder to keep all those papers in
neck pillow (hospital pillows are terrible!)
warm sweater or jacket
book or something to read
snacks: my favorites, and some I could share.
chocolate (M & M's are best - melt in your mouth, not in your hands)
peanut butter crackers
pringles in small packages
Diet cokes in small bottles (I don't like coffee, and bringing my own DC saved a bundle of $!)
drink glass with lid and straw (the lid is a necessity as if it can be spilled, I will spill it. Ice is
available at the nurse's station. I would walk up to the station and asked very nicely. Even
offered to get it myself.)
small zip lock bag of quarters (vending machines are picky about dollar bills)
cell phone charger
laptop computer (this was the first surgery I brought one, and I ended up leaving it in his room when I
went to our friends to sleep)
When he had the next surgery 6 months later, I took my Nook instead -- not nearly as much weight
to carry around!
I'm sure there was other "stuff" in the tote, but this is my basic travel list. Yours will most likely be different, but it helps me to make a list so I pack the most "vital" necessities (diet coke and chocolate, of course!)
Thursday, April 11, 2013
Keeping a daily journal at the hospital --
When I decided to keep a journal during Tommy's surgery in December 2011, I didn't know we would have so many complications following the surgery.
My original thought was simply to help keep track of the different doctors and nurses so I could remember their names -- I'm terrible with them! As it turned out, my daily record helped me keep track of much more than that.
His first complication was not expected -- by me, at least. He absolutely could not swallow anything, and if he tried to swallow even water, he coughed for quite a bit afterwards. So my journal turned out to be helpful in letting our surgeon know exactly what made him cough.
He had a couple of different swallow tests, which necessitated visits by specialists in that field.
Finally, the decision was made to insert a gastric tube, so we had additional doctors for that!
His kidneys were not working as well as the doctors thought they should, so we saw a kidney specialist -- actually more than one doctor from the same practice!
His heart has an arrhythmia, so the heart doctors kept checking in -- and they were very helpful in monitoring his blood pressure.
And there was the "hospitalist", who was the overall director of his case.
The journal was invaluable when we got home. I showed it to our family doctor so she would know what had happened, and I shared it with the nurses at the nursing facility where he went for physical therapy and rehab.
Even if we hadn't had all of these complications, I know that just writing down procedures, blood pressures, blood sugars, doctors names, etc., helped keep me calmer and feeling at least a little bit in control. In turn, I could be calm when I explained what was happening to our children, so they could understand our situation.
And as I wrote, I often prayed - for the doctor, for Tommy's healing, for my spirit to stay positive, so it was a prayer journal as well.
My original thought was simply to help keep track of the different doctors and nurses so I could remember their names -- I'm terrible with them! As it turned out, my daily record helped me keep track of much more than that.
His first complication was not expected -- by me, at least. He absolutely could not swallow anything, and if he tried to swallow even water, he coughed for quite a bit afterwards. So my journal turned out to be helpful in letting our surgeon know exactly what made him cough.
He had a couple of different swallow tests, which necessitated visits by specialists in that field.
Finally, the decision was made to insert a gastric tube, so we had additional doctors for that!
His kidneys were not working as well as the doctors thought they should, so we saw a kidney specialist -- actually more than one doctor from the same practice!
His heart has an arrhythmia, so the heart doctors kept checking in -- and they were very helpful in monitoring his blood pressure.
And there was the "hospitalist", who was the overall director of his case.
The journal was invaluable when we got home. I showed it to our family doctor so she would know what had happened, and I shared it with the nurses at the nursing facility where he went for physical therapy and rehab.
Even if we hadn't had all of these complications, I know that just writing down procedures, blood pressures, blood sugars, doctors names, etc., helped keep me calmer and feeling at least a little bit in control. In turn, I could be calm when I explained what was happening to our children, so they could understand our situation.
And as I wrote, I often prayed - for the doctor, for Tommy's healing, for my spirit to stay positive, so it was a prayer journal as well.
Saturday, April 6, 2013
So you're going to have surgery?
As you follow this blog, you will notice that every time I mention anything to do with Tommy's situation, whatever it is, I will almost always say "we". Yes, Tommy was the one actually cut on, poked, prodded, xrayed, physical therapied. . . but believe me, it was happening to both of us.
Whatever your loved one's situation is, you are going to be totally and completely immersed in whatever it is. This perception that "it's happening to both of us" is normal, and I believe that attitude helps both of you to wade through whatever comes your way.
Being told that having surgery is "not an option" is some of the most frightening news you will ever get. (In our marathon, Tommy has never had an "elective" surgery.)
The surgeries we faced this time really were scary. His spinal cord was "squished", as one neurosurgeon expressed it, in two different places. The one was very close to the top of the spinal column, cervical vertebrates 3 and 4. Since he already had a cage at C 4 through 7, this meant the possibility of removing that cage, fusing 3 & 4, and putting the cage back. The other squished place was in the middle of his back, thoracic (T) 10 & 11, an area that is rarely involved or operated on.
He was in danger of being paralyzed from the neck down if the cervical surgery wasn't done, or paralyzed from the waist down if the thoracic wasn't done. The cervical came first, as it was the most urgent.
Preparation? This was not our first rodeo, so I began to make plans. How long would he be hospitalized? The nurse said "3 to 4 days", but I knew Tommy's shortest stay after surgery was 7 days.
So, I:
1. Checked the house, making sure the hatches were battened down and everything was secure.
2. A friend volunteered to bring the mail in every day and feed our porch kitties.
3. I packed a suitcase with "necessities" for at least a week. (The hospital was 80 miles away.)
4. Where would I stay? We have wonderful Christian friends who live in Louisville, and they opened their home to me, as they have often done before.
5. I planned for a "hospital tote" - books to read, my favorite snacks, the cell phone charger, etc. I also remembered to pack an extra sweater to keep in Tommy's room. Hospitals are notoriously cold, no matter what the season!
6. Bought a small notebook to use as a daily hospital record.
This was the first time I kept a daily record of what happened. Since this stay turned out to be more like a siege, I was really glad I had. I could refer to dates, etc., doctors' names, procedures, complications, when I was explaining what happened to the nurses at the nursing center, our family doctor, and the neurologist who was helping with the dementia problems.
And, this will sound crass, but it was also very helpful when the really odd doctor bills began to arrive. The body count of specialists who saw him during the siege was 11. You can imagine how confusing it would have been if I hadn't had my own record of their names and specialities.
The notebook turned out to be one of the best ideas I had. It helped my focus on the moment, instead of worrying about "what's going to happen if. . .?" I pray you may find this helpful, too.
Whatever your loved one's situation is, you are going to be totally and completely immersed in whatever it is. This perception that "it's happening to both of us" is normal, and I believe that attitude helps both of you to wade through whatever comes your way.
Being told that having surgery is "not an option" is some of the most frightening news you will ever get. (In our marathon, Tommy has never had an "elective" surgery.)
The surgeries we faced this time really were scary. His spinal cord was "squished", as one neurosurgeon expressed it, in two different places. The one was very close to the top of the spinal column, cervical vertebrates 3 and 4. Since he already had a cage at C 4 through 7, this meant the possibility of removing that cage, fusing 3 & 4, and putting the cage back. The other squished place was in the middle of his back, thoracic (T) 10 & 11, an area that is rarely involved or operated on.
He was in danger of being paralyzed from the neck down if the cervical surgery wasn't done, or paralyzed from the waist down if the thoracic wasn't done. The cervical came first, as it was the most urgent.
Preparation? This was not our first rodeo, so I began to make plans. How long would he be hospitalized? The nurse said "3 to 4 days", but I knew Tommy's shortest stay after surgery was 7 days.
So, I:
1. Checked the house, making sure the hatches were battened down and everything was secure.
2. A friend volunteered to bring the mail in every day and feed our porch kitties.
3. I packed a suitcase with "necessities" for at least a week. (The hospital was 80 miles away.)
4. Where would I stay? We have wonderful Christian friends who live in Louisville, and they opened their home to me, as they have often done before.
5. I planned for a "hospital tote" - books to read, my favorite snacks, the cell phone charger, etc. I also remembered to pack an extra sweater to keep in Tommy's room. Hospitals are notoriously cold, no matter what the season!
6. Bought a small notebook to use as a daily hospital record.
This was the first time I kept a daily record of what happened. Since this stay turned out to be more like a siege, I was really glad I had. I could refer to dates, etc., doctors' names, procedures, complications, when I was explaining what happened to the nurses at the nursing center, our family doctor, and the neurologist who was helping with the dementia problems.
And, this will sound crass, but it was also very helpful when the really odd doctor bills began to arrive. The body count of specialists who saw him during the siege was 11. You can imagine how confusing it would have been if I hadn't had my own record of their names and specialities.
The notebook turned out to be one of the best ideas I had. It helped my focus on the moment, instead of worrying about "what's going to happen if. . .?" I pray you may find this helpful, too.
Wednesday, March 27, 2013
Taking up where I left off. . .
The C 3/4 spine surgery was in December 2011, and he came home from the nursing facility in January 2012. He had been in the hospital 16 days, and at the facility for 21. So in January, I brought him home, and the fun really started.
The physical therapy he received enabled him to walk, albeit with a walker. He had been using a walker for the 3 years before that, so this was nothing new. His legs were so much stronger that he could safely transfer from his rolling chair to the car with minimal assistance. And he was able to walk around in the house so he was not bed-bound.
But, he was still very confused and disoriented. He did not have a sense of time, and he did not realize he was at home. He insisted on getting out of bed or chair without assistance, and when he did, he would fall.
We had an appointment with our neurologist, who prescribed a patch which he hoped would help with the confusion. It took about 6 weeks, but the medication began to help. Somewhere around the middle of March, sitting in our living room with me, he looked around and said, "We're at home, aren't we?" And just like that, the worst of the confusion was over.
However, we still had more adventures to come. When the decision was made to do the cervical surgery in December, the neurologist insisted we needed to do an additional surgery in the middle of his back, Thoracic 10/11 as soon as possible. His spinal cord was severely compressed, and the doctor warned Tommy could be paralyzed.
He had a great deal of physical improvement at first, but then started to lose strength in his legs beginning the first of April. By June first, I knew we had to have the other surgery. He was unable to walk even with the walker, he could barely pull himself to a standing position. He was essentially confined to bed, and it took 2 people to get him in the car. The children and I feared another surgery would put him back into that awful confused state, but there was no choice. The surgeon looked at him and said, "What do you want to do?", and Tommy said, "I can't live like this."
The surgery was scheduled for the end of June, and after a 10 day stay in the hospital, he was transferred to a rehab hospital for an additional 20 day stay. Because the intense confusion did not return, he responded easily to the therapists' instructions. Intense physical therapy began the process of bringing back the muscles and he began walking further (with the walker) and his strength started returning. And, the speech therapist began working to help him eat "regular" food.
Our July homecoming was much more hopeful. He was not disoriented, he was looking forward to having the feeding tube removed, and he was able to move around without the fear of falling, especially getting in and out of the car.
And sure enough, we were able to get him on a regular diet and get the feeding tube removed. We were even able to take a trip to see our daughter in North Carolina.
Our journey is far from over. He has periods of confusion now and then, and he cannot walk without someone with him. Many of the usual daily needs require assistance, so he has to have someone with him 24/7. But we are so much better today than we were a year ago
Often during the darkest days last January and February (2012), my sister would remind me, "This is a marathon, not a sprint." We're in this for the long haul, and I know that whatever faces us as we go, I have God's guidance, and the marvelous support of our children, family and friends.
Looking back, I can see God's hand guiding us through all of these "adventures". Each time I thought I couldn't handle what was happening, someone would be there to give me unasked for assistance, an encouraging hug, a scripture, a note reminding me there were prayers going up for us.
As you walk though your journey, remember, you do not have to do this alone. God will be guiding you all the way.
The physical therapy he received enabled him to walk, albeit with a walker. He had been using a walker for the 3 years before that, so this was nothing new. His legs were so much stronger that he could safely transfer from his rolling chair to the car with minimal assistance. And he was able to walk around in the house so he was not bed-bound.
But, he was still very confused and disoriented. He did not have a sense of time, and he did not realize he was at home. He insisted on getting out of bed or chair without assistance, and when he did, he would fall.
We had an appointment with our neurologist, who prescribed a patch which he hoped would help with the confusion. It took about 6 weeks, but the medication began to help. Somewhere around the middle of March, sitting in our living room with me, he looked around and said, "We're at home, aren't we?" And just like that, the worst of the confusion was over.
However, we still had more adventures to come. When the decision was made to do the cervical surgery in December, the neurologist insisted we needed to do an additional surgery in the middle of his back, Thoracic 10/11 as soon as possible. His spinal cord was severely compressed, and the doctor warned Tommy could be paralyzed.
He had a great deal of physical improvement at first, but then started to lose strength in his legs beginning the first of April. By June first, I knew we had to have the other surgery. He was unable to walk even with the walker, he could barely pull himself to a standing position. He was essentially confined to bed, and it took 2 people to get him in the car. The children and I feared another surgery would put him back into that awful confused state, but there was no choice. The surgeon looked at him and said, "What do you want to do?", and Tommy said, "I can't live like this."
The surgery was scheduled for the end of June, and after a 10 day stay in the hospital, he was transferred to a rehab hospital for an additional 20 day stay. Because the intense confusion did not return, he responded easily to the therapists' instructions. Intense physical therapy began the process of bringing back the muscles and he began walking further (with the walker) and his strength started returning. And, the speech therapist began working to help him eat "regular" food.
Our July homecoming was much more hopeful. He was not disoriented, he was looking forward to having the feeding tube removed, and he was able to move around without the fear of falling, especially getting in and out of the car.
And sure enough, we were able to get him on a regular diet and get the feeding tube removed. We were even able to take a trip to see our daughter in North Carolina.
Our journey is far from over. He has periods of confusion now and then, and he cannot walk without someone with him. Many of the usual daily needs require assistance, so he has to have someone with him 24/7. But we are so much better today than we were a year ago
Often during the darkest days last January and February (2012), my sister would remind me, "This is a marathon, not a sprint." We're in this for the long haul, and I know that whatever faces us as we go, I have God's guidance, and the marvelous support of our children, family and friends.
Looking back, I can see God's hand guiding us through all of these "adventures". Each time I thought I couldn't handle what was happening, someone would be there to give me unasked for assistance, an encouraging hug, a scripture, a note reminding me there were prayers going up for us.
As you walk though your journey, remember, you do not have to do this alone. God will be guiding you all the way.
Tuesday, March 26, 2013
I wanted to write a book, but. . .
Tommy and I started on this journey many years ago, only I didn't recognize it at the time. Over the past years, he has had many spine surgeries. Then two years ago he was diagnosed with "microvascular disease of the brain", or as I learned later, vascular dementia. Before the year was out, he had his sixth spinal surgery, this time cervical spine, to fuse C3 to C4. (He already had a cage at C 3-7).
The surgery had some unexpected complications. First, because this was the third surgery going through basically the same spot, his throat muscles and nerves became inflamed, and he was not able to swallow anything thicker than water. So we had to have a gastric feeding tube inserted.
Secondly, the anesthesia and medication caused him to become extremely disoriented and confused. He knew me and our children and grandchildren, but he had no idea where he was, what was going on, wanted to get out of bed -- well, you get the picture.
He was in the hospital 16 days and was transferred to a skilled nursing facility 3 days before Christmas, still extremely confused, unable to walk, unable to take care of any of his basic needs.
After he was released from the nursing facility, we began the journey of caring for him at home. While we were living through all of this, I learned so much about caring for him, for me, dealing with health care professionals, figuring out insurance, that I kept saying, "I need to write a book".
With our schedule, I know I will not have time to do that, so I decided I would start sharing some of what I have learned through this blog. I don't know how many people will read it, or comment on it, but I believe God has led me to begin this.
I plan to post at least twice a week, and perhaps more often than that as I have ideas and time.
I welcome your ideas and thoughts - God bless you all.
The surgery had some unexpected complications. First, because this was the third surgery going through basically the same spot, his throat muscles and nerves became inflamed, and he was not able to swallow anything thicker than water. So we had to have a gastric feeding tube inserted.
Secondly, the anesthesia and medication caused him to become extremely disoriented and confused. He knew me and our children and grandchildren, but he had no idea where he was, what was going on, wanted to get out of bed -- well, you get the picture.
He was in the hospital 16 days and was transferred to a skilled nursing facility 3 days before Christmas, still extremely confused, unable to walk, unable to take care of any of his basic needs.
After he was released from the nursing facility, we began the journey of caring for him at home. While we were living through all of this, I learned so much about caring for him, for me, dealing with health care professionals, figuring out insurance, that I kept saying, "I need to write a book".
With our schedule, I know I will not have time to do that, so I decided I would start sharing some of what I have learned through this blog. I don't know how many people will read it, or comment on it, but I believe God has led me to begin this.
I plan to post at least twice a week, and perhaps more often than that as I have ideas and time.
I welcome your ideas and thoughts - God bless you all.
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