Just so you know, this is no complaint....it's just reality. Things change when you have a ill spouse. They just do. If you are a caregiver, you've seen how what used to be and what is - are sometimes two very different things.
This year, Thanksgiving was a bit strange for us. My brother and his family weren't able to be here. They recently moved 1000 miles away and they just weren't able to juggle a long drive or an expensive plane trip here. My sister and her family were spending Thanksgiving with her hubby's parents this year. My daughter was still not well and slept ALL day. I only saw her twice, I think. Maybe just when I went in to her room to see if she was breathing and if she was running a fever.
So this year, we had two grandmas, both who have lost their husbands in the past 2-3 years, my hubby and I, our four children and our future daughter in law. A small group compared to Thanksgivings past.
Dear Hubby told me on Thanksgiving morning that he had a difficult time breathing the night before. The turkey was in the oven most of the night cooking and meat odors affect his breathing. That should have been a warning to me of how he would feel that day, but I went along blissfully unaware. As we sat down to eat dinner, Dear Hubby became weaker and weaker and finally asked to be fed the rest of his meal. As soon as he finished his last bite, he wanted to be put to bed. Dear Son helped get his dad into bed and we cleaned up the meal without his presence.
Mom left immediately after dinner to spend the rest of the day with her friend, Mrs. H, who is in the nursing home. My MIL stayed for a while and visited and then had to leave to spend time with her family, Dear Hubby's brother and uncle....who were both having meals at their house.
I visited with my two sons and future daughter in law for several hours. It was so unusual. Thanksgiving at our house in the past has been everyone stays, we sing, we play games, we drink coffee, we laugh and cut up and we have to MAKE PEOPLE LEAVE!!! No one wants to leave because we have such a wonderful time.
I suppose the reason that I am writing this is to remember. Maybe this is going to be the new normal for holidays, or maybe it was just a quirky situation. Maybe Christmas will be family and fun...but it is what it is.
Being a caregiver, we have to learn to roll with it and adapt. Adapting is easier for some than others....and let me say, practice makes perfect. The more we adapt, the more we are able to see that it really is ok. We have to learn to lower our expectations, or perhaps remove them altogether. The main thing is that we take what time we have a use it as best we can. That may mean we only get to spend time together at the dinner table this year....but who knows what next year will bring??? I am grateful that my children were home this year, even if one was sick all day. At least she was here.
The main thing to remember about holidays is this: relationships are what matter. Our health may change, our finances can be unstable, sometimes a dish is ruined, or bad weather strikes. What is important are our relationships with one another. As we sat at the table this year, it was wonderful knowing that we each loved each other. We accepted each other, and we treasured time together.
We don't know what the future holds, but we know that love is all that really matters. This year, did I love my family? Not for what they can do, because we know that changes. But for who they are? Yeah, it was a good Thanksgiving. After all, we do have much to be thankful for.
I am a follower of the Lord Jesus Christ. And, I am a full time caregiver to my disabled husband who has Progressive Multiple Sclerosis. This is a journal of the thoughts I have, the things I deal with and the way I get through the day. I've been a spousal caregiver for fourteen years. If you can find a bit of encouragement here, I am grateful.
Sunday, November 30, 2008
Wednesday, November 26, 2008
Happy Thanksgiving!!!
I was going to list things that I am grateful for, but there are just too many. I do sometimes focus on the hardships and difficult times, but I really do have much to be grateful for.
As we prepare to celebrate, I ask that you please pray for our older daughter. She has battled Scarlet Fever all week and is now coming down with bronchitis. Dear Hubby's back is getting better, but still hurts some. I'm rather tired myself, not getting as much sleep as I usually do and that can make for a churning mind and fearsome, worrisome thoughts. Please pray that I will keep my mind on Christ alone! Pray that I will keep a thankful heart!
As we prepare to celebrate, I ask that you please pray for our older daughter. She has battled Scarlet Fever all week and is now coming down with bronchitis. Dear Hubby's back is getting better, but still hurts some. I'm rather tired myself, not getting as much sleep as I usually do and that can make for a churning mind and fearsome, worrisome thoughts. Please pray that I will keep my mind on Christ alone! Pray that I will keep a thankful heart!
Tuesday, November 25, 2008
Sunday, November 23, 2008
This too shall pass
I've heard this several times since my care giving began. People say it when trying to be encouraging. I began to ponder these words to see if they truly applied to my situation. I wondered where they came from. I knew they weren't scripture. Maybe it was quoted as such by some, thought to be found right beside "Cleanliness is next to godliness", but I was rather sure I'd never read it in the Bible.
So, I went to my great research tool, the internet and found this on Wikipedia.....
This too shall pass is a phrase occurring in a Jewish wisdom folktale involving King Solomon. The phrase is commonly engraved on silver rings. Many versions of the folktale have been recorded by the Israel Folklore Archive at the University of Haifa. Heda Jason recorded this version told by David Franko from Turkey.
"King Solomon once searched for a cure against depression. He assembled his wise men together. They meditated for a long time and gave him the following advice: Make yourself a ring and have thereon engraved the words "This too shall pass". The King carried out the advice. He had the ring made and wore it constantly. Every time he felt sad and depressed, he looked at the ring, whereon his mood would change and he would feel cheerful."
Wow, interesting way to deal with difficult situations, don't you think? Yet, what would happen if you were to look at the ring when you were feeling happy, when all was right with the world? Ah.....then you would become depressed because you would read, "this too shall pass" and would understand that happiness is fleeting.
I've been thinking about "this too shall pass". The thought spoken right after someone says, "this too shall pass" is usually, something to this effect: "don't be discouraged, this is only temporary". Well, exploring this further lead me to think some more.
I thought of difficult times in my past. Difficult pregnancies, the flu, babies in diapers, sleepless nights from crying children, car trouble.....These are what I call transitory, short lived and temporary. The pregnancy does eventually end....sometimes well, sometimes sadly. I've gotten over the flu. My children no longer wear diapers, although, with some we wondered if they would wear them for the rest of their lives! My babies learned to sleep through the night....eventually. And, the cars, at some point get fixed or replaced.
Applied to my situation, is this difficult time I am going through just temporary? I then thought of others that I know who are going through difficult times. Are their circumstances temporary? Let me think: cancer, brain tumors, death of a spouse, MS, Brain Injury, Alzheimer's, Paraplegia, etc. Hm....would I consider these trials and difficult times to be temporary? Not hardly. They last a lifetime.
MS is the one that touches me personally. My Dear Hubby, apart from intervention of the Lord, will ALWAYS suffer from MS. He will not be able to walk again. As a matter of fact, the things that he is able to do today, he will mostly likely not be able to do in the future.
Depressing? Sure....but, where do we turn when we realize that for some of us, this will not pass. It's not going to go away. With MS, a person's life expectancy is rarely affected, and if it is, it's usually by just a few years. Cancer is no longer a deadly disease that takes all it's victims. With new treatments, cancer has almost become a chronic illness. Brain Injuries do not heal themselves and loved ones do not return from the dead. Alzheimer's patients do not wake one day to have their minds restored.
I suppose many would say, "But, Paula, compared to eternity, this IS temporary." My answer, "Compared to eternity?" Sure....compare anything to eternity, and you find yourself in temporary situations. But, honestly, 5 years on earth is a long time. 10 years, 20, how about 40? Wow, it's a long time for some of us. We've had a diagnosis since 2000. Certainly not temporary.
So, if Jewish folktales about King Solomon can't give us the answer to dealing with difficult situations, what can? How about the Holy Scriptures?
Yeah, let's start there. And end there.
If I were to look at a Biblical example of a man who was able to endure trials....trials that weren't transitory, trials that lasted from the moment he gave his heart to Christ to the time of his death, I would have to turn to Paul.
Start by reading Acts 22:6. Paul dealt with thorn in the flesh to start with from his Damascus Road experience. He asked the Lord three times to remove it and the Lord said no. (II Corinthians 12:7-9) He carried this thorn, regardless of what it was, for the rest of his life. Temporary? Nah.....
II Corinthians 11:24-28 tells about the other things that Paul struggled with in his life. Maybe they were transitory, but let me tell you.....one transitory thing piled on the other leads me to call Paul's experience "Chronic Trials"!!!
Beaten with rods, stoned, three times shipwrecked, in many journeys, water, attacked by robbers, persecuted by his countrymen, and the heathen. In danger in the city (I can relate), in danger in the country. Wilderness, the sea, dealing with false teachers, weary, in pain, hunger, thirst, fastings, cold and naked, and finally the care of the body (the church) falling upon his shoulders. This man really suffered. And, these weren't just small, short term items here. Compare my list to his, and all I can say is: My life is a cake walk.
One day, several years ago, I was reading through the book of II Corinthians and came across a passage of scripture that just about knocked me down. I read it and couldn't believe it.
II Corinithians 4:16-18
For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.
Amazing at the depth of Paul's understanding.
I always like to read the verses before, to get an idea of what is being discussed. Do this in this chapter and you'll find more amazing stuff.
Starting in verse 8: "We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed; Always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body. For we which live are alway delivered unto death for Jesus' sake, that the life also of Jesus might be made manifest in our mortal flesh. So then death worketh in us, but life in you. We having the same spirit of faith, according as it is written, I believed, and therefore have I spoken; we also believe, and therefore speak; Knowing that he which raised up the Lord Jesus shall raise up us also by Jesus, and shall present us with you. For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God. For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal."
Ok, so this too shall pass? Maybe, maybe not. It just depends on our perspective. Whether our trial is short lived or lasts a lifetime, there are lessons to be learned. While we experience difficult times and go through horrible situations, though we hurt, cry, and think we can't take another step....if we let these things in, and in turn let the Lord use them we will find that our inward man CAN be renewed, day by day.
Joseph spent time in the pit, he went through the hate of family, was sold into slavery, and lied about, but all the time, God was working. He could not see the hand of God, but He was there, seeing, knowing and allowing these things.
I don't always like what the Lord chooses to do in my life....but I am learning, day by day to trust Him. I don't know that I will ever ascend to the throne, like Joseph did at the end of his story. I don't know that I will ever lead a nation to safety. I don't think millions of lives will be affected by my life. But as my Pastor says, "I'm just one beggar telling another beggar where to find bread."
We have to believe God. My childhood Pastor told me once: God is too loving to be unkind, too good to do wrong, too wise to make mistakes, too great to be petty, spiteful, small or mean; above all, too powerful to be thwarted.
I must have faith that He is working in my life. I may have to go through the pit, the rejection, the loneliness, the trial.....but the other side, which WILL come, will bring with it the eternal weight of glory. God is NOT finished with me yet, of that I am sure. I choose today to trust HIM, whether this passes or not.
Finally, let me end this with another great scripture written in Philippians 1:12, "But I would that ye should understand, brethren, that the things which happened unto me have fallen out rather unto the furtherance of the gospel;"
I want the difficulty God allows in my life to be used by Him to spread His Word. His Word of salvation and His Word of hope.
II Corinthians 12:9b "Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
So, I went to my great research tool, the internet and found this on Wikipedia.....
This too shall pass is a phrase occurring in a Jewish wisdom folktale involving King Solomon. The phrase is commonly engraved on silver rings. Many versions of the folktale have been recorded by the Israel Folklore Archive at the University of Haifa. Heda Jason recorded this version told by David Franko from Turkey.
"King Solomon once searched for a cure against depression. He assembled his wise men together. They meditated for a long time and gave him the following advice: Make yourself a ring and have thereon engraved the words "This too shall pass". The King carried out the advice. He had the ring made and wore it constantly. Every time he felt sad and depressed, he looked at the ring, whereon his mood would change and he would feel cheerful."
Wow, interesting way to deal with difficult situations, don't you think? Yet, what would happen if you were to look at the ring when you were feeling happy, when all was right with the world? Ah.....then you would become depressed because you would read, "this too shall pass" and would understand that happiness is fleeting.
I've been thinking about "this too shall pass". The thought spoken right after someone says, "this too shall pass" is usually, something to this effect: "don't be discouraged, this is only temporary". Well, exploring this further lead me to think some more.
I thought of difficult times in my past. Difficult pregnancies, the flu, babies in diapers, sleepless nights from crying children, car trouble.....These are what I call transitory, short lived and temporary. The pregnancy does eventually end....sometimes well, sometimes sadly. I've gotten over the flu. My children no longer wear diapers, although, with some we wondered if they would wear them for the rest of their lives! My babies learned to sleep through the night....eventually. And, the cars, at some point get fixed or replaced.
Applied to my situation, is this difficult time I am going through just temporary? I then thought of others that I know who are going through difficult times. Are their circumstances temporary? Let me think: cancer, brain tumors, death of a spouse, MS, Brain Injury, Alzheimer's, Paraplegia, etc. Hm....would I consider these trials and difficult times to be temporary? Not hardly. They last a lifetime.
MS is the one that touches me personally. My Dear Hubby, apart from intervention of the Lord, will ALWAYS suffer from MS. He will not be able to walk again. As a matter of fact, the things that he is able to do today, he will mostly likely not be able to do in the future.
Depressing? Sure....but, where do we turn when we realize that for some of us, this will not pass. It's not going to go away. With MS, a person's life expectancy is rarely affected, and if it is, it's usually by just a few years. Cancer is no longer a deadly disease that takes all it's victims. With new treatments, cancer has almost become a chronic illness. Brain Injuries do not heal themselves and loved ones do not return from the dead. Alzheimer's patients do not wake one day to have their minds restored.
I suppose many would say, "But, Paula, compared to eternity, this IS temporary." My answer, "Compared to eternity?" Sure....compare anything to eternity, and you find yourself in temporary situations. But, honestly, 5 years on earth is a long time. 10 years, 20, how about 40? Wow, it's a long time for some of us. We've had a diagnosis since 2000. Certainly not temporary.
So, if Jewish folktales about King Solomon can't give us the answer to dealing with difficult situations, what can? How about the Holy Scriptures?
Yeah, let's start there. And end there.
If I were to look at a Biblical example of a man who was able to endure trials....trials that weren't transitory, trials that lasted from the moment he gave his heart to Christ to the time of his death, I would have to turn to Paul.
Start by reading Acts 22:6. Paul dealt with thorn in the flesh to start with from his Damascus Road experience. He asked the Lord three times to remove it and the Lord said no. (II Corinthians 12:7-9) He carried this thorn, regardless of what it was, for the rest of his life. Temporary? Nah.....
II Corinthians 11:24-28 tells about the other things that Paul struggled with in his life. Maybe they were transitory, but let me tell you.....one transitory thing piled on the other leads me to call Paul's experience "Chronic Trials"!!!
Beaten with rods, stoned, three times shipwrecked, in many journeys, water, attacked by robbers, persecuted by his countrymen, and the heathen. In danger in the city (I can relate), in danger in the country. Wilderness, the sea, dealing with false teachers, weary, in pain, hunger, thirst, fastings, cold and naked, and finally the care of the body (the church) falling upon his shoulders. This man really suffered. And, these weren't just small, short term items here. Compare my list to his, and all I can say is: My life is a cake walk.
One day, several years ago, I was reading through the book of II Corinthians and came across a passage of scripture that just about knocked me down. I read it and couldn't believe it.
II Corinithians 4:16-18
For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.
Amazing at the depth of Paul's understanding.
I always like to read the verses before, to get an idea of what is being discussed. Do this in this chapter and you'll find more amazing stuff.
Starting in verse 8: "We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed; Always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body. For we which live are alway delivered unto death for Jesus' sake, that the life also of Jesus might be made manifest in our mortal flesh. So then death worketh in us, but life in you. We having the same spirit of faith, according as it is written, I believed, and therefore have I spoken; we also believe, and therefore speak; Knowing that he which raised up the Lord Jesus shall raise up us also by Jesus, and shall present us with you. For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God. For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal."
Ok, so this too shall pass? Maybe, maybe not. It just depends on our perspective. Whether our trial is short lived or lasts a lifetime, there are lessons to be learned. While we experience difficult times and go through horrible situations, though we hurt, cry, and think we can't take another step....if we let these things in, and in turn let the Lord use them we will find that our inward man CAN be renewed, day by day.
Joseph spent time in the pit, he went through the hate of family, was sold into slavery, and lied about, but all the time, God was working. He could not see the hand of God, but He was there, seeing, knowing and allowing these things.
I don't always like what the Lord chooses to do in my life....but I am learning, day by day to trust Him. I don't know that I will ever ascend to the throne, like Joseph did at the end of his story. I don't know that I will ever lead a nation to safety. I don't think millions of lives will be affected by my life. But as my Pastor says, "I'm just one beggar telling another beggar where to find bread."
We have to believe God. My childhood Pastor told me once: God is too loving to be unkind, too good to do wrong, too wise to make mistakes, too great to be petty, spiteful, small or mean; above all, too powerful to be thwarted.
I must have faith that He is working in my life. I may have to go through the pit, the rejection, the loneliness, the trial.....but the other side, which WILL come, will bring with it the eternal weight of glory. God is NOT finished with me yet, of that I am sure. I choose today to trust HIM, whether this passes or not.
Finally, let me end this with another great scripture written in Philippians 1:12, "But I would that ye should understand, brethren, that the things which happened unto me have fallen out rather unto the furtherance of the gospel;"
I want the difficulty God allows in my life to be used by Him to spread His Word. His Word of salvation and His Word of hope.
II Corinthians 12:9b "Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
Saturday, November 22, 2008
Definition: Chronic Illness
Chronic Illness is defined as long-term or permanent illness that often results in some type of disability and which may require a person to seek help with various activities. A long-standing illness for which there is no known cure. It is not immediately life-threatening but can give rise to unpleasant and painful symptoms.
The Caregiver's Report Card
And whatsoever ye do, do it heartily,
as to the Lord,
and not unto men;
Knowing that of the Lord
ye shall receive the reward of the inheritance:
for ye serve the Lord Christ.
Colossians 3:24
as to the Lord,
and not unto men;
Knowing that of the Lord
ye shall receive the reward of the inheritance:
for ye serve the Lord Christ.
Colossians 3:24
There are times when we can feel so overwhelmed in our role as caregiver. The frustrations, the interruptions and the confusion can lead us to some real hair pulling. I think what is most difficult for "outsiders" to see and understand is that we are not frustrated at the person. We are not mad at the one we care for. It is the constancy of need. The increasing work and tiring days and nights.
My husband is not usually in pain. His legs sometimes ache at night, but he's not a complainer and a lot of times, I never know that he's been awake for hours, hurting, until the next morning. Having my Dear Hubby in bed moaning and hurting, has been difficult for me to watch these past few days.
As he has called my name, I have felt true compassion for him. I know he is hurting and I want to make him comfortable. While there may be nothing to ease his pain at that moment, I can know that I am meeting a need as best as I can.
We may not be able to take away their pain and discomfort. We may not be able to adjust them in the hospital bed and get it just right. We may walk away from them, knowing that they have not had their need met just perfectly, but we can rest assured that if we have done our best, then that is all that really matters.
I remember as a child, coming home with my report card. In elementary school and most of Jr. High, I really didn't do well in school. I don't know what the reason was, maybe I was just a late bloomer. I was discouraged by one particular report card, and was really dreading showing it to my mom. As I handed it to her, I hung my head. She read over it and asked me what had happened. Like most kids, I just kind of shrugged my shoulders and said, "I don't know." She asked me if I had done my best at school. I thought it over and while I did think of some work that I could have done better, overall, I really had tried and had done my best.
She looked me in the eyes and said, "All I expect from you is that you do your best. If this is the best you can do, then I am proud of you." What gives a mother wisdom like that? An intuition and direction from the Lord? I felt a renewed sense of pride. While that may sound a bit naive.....I was satisfied with my best. I would never be as smart as my brother, but I had learned to try. And I had learned to accept my limitations.
You must understand what happened to me during that next semester. I tried really hard. My mom expected my best. She would be satisfied with my best, regardless of how I compared to others. I did bring my grades up just a bit, but I never did have a report card with mostly A's and some B's until high school.
I've thought about this same idea when it comes to my life of serving my husband in his time of chronic illness. Am I doing my best? I mean, what are my goals in caregiving? Is it that my husband will always be comfortable? That I will run when he calls my name? That I will meet each challenge with a smile on my face?
No, my goal will be to do my best. If I look back over my caregiving, I see times where I felt like such a looser. I had a bad attitude, I grumbled and complained, and whined a bit. Was I the perfect caregiver? Did I have a great attitude? Did I do my best?
Well, maybe it's kinda like me and the report card.....maybe there were some areas where I could have tried harder and done a better job, but honestly, at the time, I really did do my best. It's hard to be giving when you are drained emotionally, physically and mentally.
I can't go back and change those report cards, but I can know this: My heavenly Father looks at me with eyes of understanding, deeper than any mother could possibly have. He made me. He knows me.
Psalm 103:13 and 14 says, "Like as a father pitieth his children, so the LORD pitieth them that fear him. For he knoweth our frame; he remembereth that we are dust."
Paula's Paraphrase: But as a father loves deeply, has tender affection and compassion on his child, so our Father in Heaven loves, has tender affection and compassion on His children...those who reverence Him. He knows and perceives our purpose, our form, who we are; He remembers that we are just dry earth, dust and ashes. He understands my weaknesses and limitations.
If I could have done better at the time, I probably would have. That's what I remind myself of. As a caregiver we are growing and changing. We are learning and adjusting. There have been times when I have thrown my hands up in the air in frustration, but I'm not going to go back there and relive those times. I'm going to go back to my role as caregiver and do the best that I can today.
I'm so grateful that it is the Lord I must answer to. I've been bought by the blood of Christ and that is what my Father sees. Sure, I have to deal with my shortcomings, my anger, my hurt feelings for what they really are: sin. But the past can be forgiven, it already is....it's under the blood. And, today, I can face my Father in Heaven and say, "Here is my report card on caregiving. I've done the best I can. And by your grace, tomorrow, I will trust You to work in my life and help me to do a bit better."
In the classroom of caregiving, there is no comparing. We can't look around and say, "He or she is doing so much better than I am." Our Father sees us individually and deals with us individually. Rest in His hands, and remember, He is your Father who loves deeply and has compassions that do not fail.
Friday, November 21, 2008
What Lies Around the Corner?
No one really knows.....
We are up really late most nights. Dear Hubby likes to watch Fox News and old black and white movies. He has a difficult time getting to sleep at times. Wednesday night, while trying to get comfortable in bed, he pulled a muscle in his back. Yep. He did.
He has trouble with spasticity (definition below) because of his Multiple Sclerosis. Needing to bend his legs, but having them refuse, he has to pull hard on the leg lifters I made for him. He is so sweet to try not to wake me at night and do this himself. But, sometimes he can't. Well, Wednesday night, while trying to pull those legs up, he injured his back.
It hurt all day Thursday, but he just dealt with it. He's always had a very high tolerance for pain, but since his diagnosis, he has a much lessened ability to tolerate pain and discomfort. We were up really late last night, but he was so uncomfortable he woke me very early this morning to rub his back with BioFreeze and then we went back to sleep for few hours.
By mid morning he was really suffering. Taking a deep breath hurt his back and he even felt it in his stomach. After calling the Dr. this morning and waiting for her to return the call after lunch, we decided to just make an appt. this afternoon and try to get in before the weekend hit. Trouble worsens at night and on weekends, have you noticed???? And anything left untreated usually doesn't heal itself.
I am so grateful that Dear Older Daughter and Dear Younger Son were still home before leaving to go to a friend's birthday celebration. Dear Older Son went with us to the Dr. and packed up the LARGE power chair and lifted his dad in and out of the van. Whew!! What would we do without him???
So now, we have discussed pain medication and Dear Hubby has relented and is taking some. And the Dr. has prescribed Baclofen to help with the spasms and rigidity. So, maybe if he continues taking it as prescribed, he can prevent more pulled muscles. Even I have had a sore muscle or two at times when trying to move those stubborn legs!
Like all caregivers, I'm learning to roll with the punches and just go with it. I'm always amazed at the way things seem to fall into place. Normally, this is my week to be gone quilting all day....and the two older kids were planning on leaving a bit earlier, but didn't. Hm.....maybe the Lord was working???? LOL
From Wikipedia: Spasticity or muscular hypertonicity is a disorder of the central nervous system (CNS) in which certain muscles continually receive a message to tighten and contract. The nerves leading to those muscles, being damaged and unable to regulate themselves (which would provide for normal muscle tone), permanently and continually "over-fire" these commands to tighten and contract. This causes stiffness or tightness of the muscles and may interfere with gait, movement, and speech. Spasticity is most common in spastic diplegia and in other forms of spastic cerebral palsy, but it also presents extensively in multiple sclerosis and to different degrees in most other neuromuscular diseases and conditions as well, both progressive and not.
Tis the Set of the Sail
by Ella Wheeler Wilcox 1916
But to every mind there openeth,
A way, and way, and away,
A high soul climbs the highway,
And the low soul gropes the low,
And in between on the misty flats,
The rest drift to and fro.
But to every man there openeth,
A high way and a low,
And every mind decideth,
The way his soul shall go.
One ship sails East,
And another West,
By the self-same winds that blow,
'Tis the set of the sails
And not the gales,
That tells the way we go.
Like the winds of the sea
Are the waves of time,
As we journey along through life,
'Tis the set of the soul,
That determines the goal,
And not the calm or the strife.
But to every mind there openeth,
A way, and way, and away,
A high soul climbs the highway,
And the low soul gropes the low,
And in between on the misty flats,
The rest drift to and fro.
But to every man there openeth,
A high way and a low,
And every mind decideth,
The way his soul shall go.
One ship sails East,
And another West,
By the self-same winds that blow,
'Tis the set of the sails
And not the gales,
That tells the way we go.
Like the winds of the sea
Are the waves of time,
As we journey along through life,
'Tis the set of the soul,
That determines the goal,
And not the calm or the strife.
The Job I Never Applied For
If you are a family caregiver, it’s probably not a job you applied for. Many of us find ourselves thrust into this job after a diagnosis or an accident. Maybe we were first choice and maybe we were the last resort. Nevertheless, here we are.
Were we prepared? Probably not. Do we feel qualified? Most of us don’t.
I’ve been a full time spousal caregiver since March 2003. And, honestly, it was a job I never dreamed I’d have at age 38. I really thought I’d being doing something else with my life. Seeing my kids into their teenage years. Completing our homeschooling of the older children and participating in school activities. Taking family vacations. Enjoying hobbies...but caring for my spouse full time? No way.
As I found my role as caregiver increasing and other roles shrinking (because of lack of time and energy), I admit it, I panicked. I didn’t know what I was doing. I was lifting, transferring, doing stretching exercises with my husband, bathing, and a lot of cleaning up after accidents….of all sorts. And, I had no clue if I was “doing it right”. I was burning out. I was tired and every day I battled feeling inadequate. I didn’t always like my job. I got frustrated. I worried, I cried. I fell apart in front of friends. I shared my heart with some and then regretted that I couldn’t just “get it together and handle things myself”.
As I entered my fourth year, I realized that something had to give. Sure, my kids were a great help. They picked up the slack in areas like laundry, housework, trips to the grocery store, etc. But overseeing everything was my job. Being in charge of the house and taking care of my husband was my job. My role was changing. The job I once had, wife and mother, seemed simple. This new one? Overwhelming.
Finally, one day, after many tears and weeks of self doubt, I did it. I cried out for help. I talked with my husband and told him I didn’t think I would make it to the end if I didn’t do something. I had some ideas, but honestly, in my world…..there weren’t a lot of options.
You see, I thought that if something came into my life, I should be able to handle it. The Lord never gives more than you can bear. Scripture tells us in I Corinthians 10:13, “There hath no temptation (trial or proving) taken you but such as is common to man: but God is faithful (trustworthy and can be relied on), who will not suffer (allow) you to be tempted (tested and tried) above that ye are able; but will with the temptation (trial) also make a way to escape, that ye may be able to bear (to bear patiently and endure) it.” As we have trials, our strength increases. And yet, I wasn’t feeling it. And I wasn’t coping well. I was a failure, not only as a caregiver, but as a Christian woman.
I felt like I had lost my compass. I still read the scriptures…periodically. I prayed, often…almost continually, crying out to the Lord for help and even relief from my burden. But, instead, I felt just more and more pressure heaped upon me. So, I sought help.
First, I met with a counselor. I found a woman who understood and agreed with my Biblical World View. I sat down and explained all I had been through, a recent miscarriage, changes in my role as wife and the burden of caring for my chronically ill husband, as well as other extended family issues that were burdening me down. As she listened, I could tell she understood.
As I opened my heart and shared where I was, and the things I was dealing with, I told her that I could no longer see truth. You see, being under the burden of my responsibilities, I could no longer see what truth was and what was a lie. I had expectations of myself, and I was falling short. I was mad at myself for not handling things right. I was struggling with what Ideal Me would do in this situation and what Real Me was actually doing.
You know, Ideal Me was patient. Real Me got frustrated easily. Ideal Me could handle anything thrown at me, Real Me had limited resources of time, money and energy. Ideal Me walked in peace, Real Me couldn’t find a moment’s peace. The counselor was able to help me work through some things in my life and helped put my life back into proper perspective. She helped me to see that I could not do this alone. She showed me that Ideal Me was just an ideal and that I could never reach the expectations I set upon my own life. Real Me is the person that my family and friends knew and even loved.
Secondly, the day came when I had to talk with my husband. I shared my heart and told him that I needed help. We worked through it and I called our family Dr. We set up an appointment to have a Home Health Care company come out and give me some instruction in caring for a chronically ill/disabled person. We were given a hospital bed, a lift, a new beside commode, and some other helps. I was amazed at how just a few changes made such an enormous difference. Contrary to popular belief, Medicare does not cover long term care of chronic illness. This was to be a time of training and help would be very short term.
As my husband and I discussed his care, I realized that there were some jobs I just couldn’t stand doing. I also found that some of my methods were time consuming and energy zappers. No wonder I was so exhausted. I was wearing myself out needlessly. There were easier, better ways to do the things that had to be done. And watching the “professionals” work made me realize that I did need help. We decided that there were a few jobs that I could delegate and even pay someone else to do.
The Lord doesn’t give us more than we can bear, but why do we think that means we must bear those burdens alone? Galatians 6:2 tells us to “Bear ye one another's burdens, and so fulfil the law of Christ.” We are to help those around us who find their burdens too large to carry on their own. I believed those scriptures, but I always thought my responsibility would be to help bear a burden of a fellow Christian. Instead, at this time in my life, I found myself on the receiving end. I was the one who needed help in bearing my burden. I just had to ask for the help I needed.
So, maybe we weren’t prepared for this job. Maybe we’re in over our heads. Maybe the job is too big. But, we have options. We just have to be creative and look outside of ourselves to find it.
If I were to talk with a caregiver face to face, this is what I would say. It’s a tough job that few of us applied for. We don’t have the all the skills, experience, and training needed to do our jobs. So what are we going to do? Crater? Cry? Give up? If we do, who will care for our loved ones? I did that for several years. Let me tell you right now, it doesn’t accomplish anything….you’ll still find yourself right where you are. Instead, don’t be afraid to ask for the help you need.
I guess I see it this way. Laundry is a big task. But, imagine how much bigger a task it would be if you had to do it alone, without a washing machine and dryer, without an iron. The task would be almost unbearable. But, we have help. We have washing machines that pour water over our clothes, agitate, wash, rinse and remove excess water. We have dryers that tumble our clothes while heating them causing the water to evaporate. And when those tasks are done, we can iron our clothes, getting them nice and smooth, ready to be used. Are you cheating by having these items to make your life easier? Are you less of a woman or housekeeper? Or are you working smarter? Are you saving yourself time and energy so that you can focus on the important things in life?
Let’s get the help we need to do the job we never applied for. Sure, the task is difficult, sometimes overwhelming, but with the help of equipment, aides, friends and family, we can get the job done, and still have some energy left to love the one we care for. What can be more important? And maybe, just maybe, we’ll find a little time for ourselves in the process.
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