In the middle of September of 2010 and in the midst of the last months of my caregiving days I wrote the following prayer. Perhaps you can relate, dear caregiver:
“Lord, help me today to count my blessings and not dwell on the difficult moments. Help me not give into fear about the future, but rather trust that You will guide step by step. I don’t know for certain the turns that this caregiving road will take in the future, but You do, Lord. Grant me the ability to rest in You in peace, and at the same time grant me the ability to make wise decisions. Grant me strength to go on each day. I am tired today, Lord, but you have promised that You are with me and that I can have victory in all circumstances.”
Monday, September 17, 2012
Monday, September 10, 2012
Emotional Roller Coaster
September of 2010 proved to be emotionally draining in many ways for me as a caregiver. It was the beginning of many exceptionally stressful days and the prelude to my husband’s death on January 2, 2011.
On September 2, 2010 my mother-in-law passed away in the early morning. She was 88 years old, and except for her last two years of her life when she was fighting ovarian cancer, she lived a healthy life. It was difficult to say good-by to her, but we knew she was now free of all sadness and sickness and was experiencing only pure joy with her Lord. We were happy for her.
During the week of my mother-in-law’s funeral there were the joyful highs of having all three of our sons home together for the first time in three years. One son from London flew into the States. My son from IA and his family drove in from IA that same day, and my local son and his family were also close at hand . It was sweet to all be together for a few days. My husband, Wayne, also had a great day on the Sunday we were altogether. I hadn’t seem him smile that much in a long time.
What was sad was the occasion for our being together. There were also the stresses and lows of Wayne having a very difficult day both on Monday, the day before his mother’s funeral, and again on Wed., the day after the funeral. On those days he did not function at all well and transfers were very difficult. There was also the stress of wondering if Wayne would be able to function well on Tuesday, the day of the funeral. (He did function well on Tuesday, and so was able to attend the funeral.)
Also as great as it is to have family around there was a lot of stress in having a household of people along with taking care of my husband’s needs. My daughter-in-law did bring in a couple meals which helped immensely.
In the days and weeks after my mother-in-law’s funeral and our children’s families returned home there continued to be a whirlwind of emotions swirling around in my heart. My mother-in-law’s decline and death and its accompanying grief tended to blend with my grief connected with my husband’s illness and decline.
There had been good and precious moments with family in between, but the constant ups and downs of my husband’s disease really became wearing. So often Wayne would have one or two relatively good days followed by a “crash” day where he slept most of the day. These “crash” days sometimes also involved it being difficult to manage his transfers to the bathroom etc., because his brain had difficulty processing making the moves he needed to make until it had recharged itself with a huge amount of sleep again.
Sometimes Wayne would act out in his sleep also. One day he was sleeping in his chair, and he was really agitated. He was acting very angry, and even though he was sleeping it appeared to be directed at me. He also said some cruel things to me in his sleep. It was really freaky, as he would open his eyes. Yet I knew he was asleep. It was difficult not to personalize some of that.
So those weeks in September of 2010 consisted of emotions swinging from one extreme to another. Those weeks I felt grief due to my mother-in-law’s death and because of my husband’s disease. I felt joy because of my family being there and because of my faith. I felt stress because of all the emotions and all that had occurred. I do not know how I would have gotten through those days without the Lord. Dear Christian caregiver, lean on the Lord in those emotional roller coaster days.
On September 2, 2010 my mother-in-law passed away in the early morning. She was 88 years old, and except for her last two years of her life when she was fighting ovarian cancer, she lived a healthy life. It was difficult to say good-by to her, but we knew she was now free of all sadness and sickness and was experiencing only pure joy with her Lord. We were happy for her.
During the week of my mother-in-law’s funeral there were the joyful highs of having all three of our sons home together for the first time in three years. One son from London flew into the States. My son from IA and his family drove in from IA that same day, and my local son and his family were also close at hand . It was sweet to all be together for a few days. My husband, Wayne, also had a great day on the Sunday we were altogether. I hadn’t seem him smile that much in a long time.
What was sad was the occasion for our being together. There were also the stresses and lows of Wayne having a very difficult day both on Monday, the day before his mother’s funeral, and again on Wed., the day after the funeral. On those days he did not function at all well and transfers were very difficult. There was also the stress of wondering if Wayne would be able to function well on Tuesday, the day of the funeral. (He did function well on Tuesday, and so was able to attend the funeral.)
Also as great as it is to have family around there was a lot of stress in having a household of people along with taking care of my husband’s needs. My daughter-in-law did bring in a couple meals which helped immensely.
In the days and weeks after my mother-in-law’s funeral and our children’s families returned home there continued to be a whirlwind of emotions swirling around in my heart. My mother-in-law’s decline and death and its accompanying grief tended to blend with my grief connected with my husband’s illness and decline.
There had been good and precious moments with family in between, but the constant ups and downs of my husband’s disease really became wearing. So often Wayne would have one or two relatively good days followed by a “crash” day where he slept most of the day. These “crash” days sometimes also involved it being difficult to manage his transfers to the bathroom etc., because his brain had difficulty processing making the moves he needed to make until it had recharged itself with a huge amount of sleep again.
Sometimes Wayne would act out in his sleep also. One day he was sleeping in his chair, and he was really agitated. He was acting very angry, and even though he was sleeping it appeared to be directed at me. He also said some cruel things to me in his sleep. It was really freaky, as he would open his eyes. Yet I knew he was asleep. It was difficult not to personalize some of that.
So those weeks in September of 2010 consisted of emotions swinging from one extreme to another. Those weeks I felt grief due to my mother-in-law’s death and because of my husband’s disease. I felt joy because of my family being there and because of my faith. I felt stress because of all the emotions and all that had occurred. I do not know how I would have gotten through those days without the Lord. Dear Christian caregiver, lean on the Lord in those emotional roller coaster days.
Monday, September 3, 2012
Mixture of Joys and Sorrows
Life can be such a mixture of joys and sorrows. Even in our most difficult moments there is always something for which we can be thankful. Caregiving for a family member with a terminal illness can be overwhelming. It helps to also remember the blessings in one’s life, however. On September 12, 2009 in the midst of my caregiving days I journaled some of my thoughts on this subject. Perhaps you can relate, dear caregiver. I wrote the following words on that day:
“Caregiving like the weather always has its ups and downs. Some days feel stormy, and on those days I feel I can’t do it anymore. On other days life tends to take on a certain rhythm and pattern and is workable. Life always tends to be a mixture of joys and sorrows. I am joyful in my faith and in my relationship with my Lord. I am thankful that I know He is always with me. It is difficult living with the reality of my husband’s disease, however. I am happy that the struggles of life are making me stronger in my character, in my faith, and as a person. I struggle with the fact, however, that it sometimes has to be so emotionally exhausting, and I wonder why life has to be so difficult.
I am happy with the fact that my husband seems to be gaining much more physical strength through his therapy. I mourn the fact, however, that his balance issues remain and that he is beginning to hang to the side more when sitting in his wheelchair. I find joy in the times we spend with our grandchildren and our enjoyable times with family. My joys are definitely better because of the sorrows.
I do weary of being responsible for so many decisions, however. When we bought a different vehicle this summer, I did all the talking and dealing. When there are telephone calls to be made or problems to be solved it is I who has to take charge. Soon we will have some major insurance issues to consider. That will be mainly my responsibility. We may have a chance to move from our apartment to a condo. There is a condo maybe in our price range available, but all the things to think about in regard to such a possibility are a bit overwhelming.
I love the good times my husband and I still have together, but I miss the way things used to be. I miss the times when my husband took more responsibility for these type things and decisions. I miss the person my husband used to be. Lord, help me choose joy and gratitude today. Continue to direct my path, as You have in the past.”
Dear Christian caregiver, never forget that the Lord is always with you each step of the way. Let Him be your source of strength, comfort, and joy; as you deal with the heartaches and sorrows of caregiving.
“Caregiving like the weather always has its ups and downs. Some days feel stormy, and on those days I feel I can’t do it anymore. On other days life tends to take on a certain rhythm and pattern and is workable. Life always tends to be a mixture of joys and sorrows. I am joyful in my faith and in my relationship with my Lord. I am thankful that I know He is always with me. It is difficult living with the reality of my husband’s disease, however. I am happy that the struggles of life are making me stronger in my character, in my faith, and as a person. I struggle with the fact, however, that it sometimes has to be so emotionally exhausting, and I wonder why life has to be so difficult.
I am happy with the fact that my husband seems to be gaining much more physical strength through his therapy. I mourn the fact, however, that his balance issues remain and that he is beginning to hang to the side more when sitting in his wheelchair. I find joy in the times we spend with our grandchildren and our enjoyable times with family. My joys are definitely better because of the sorrows.
I do weary of being responsible for so many decisions, however. When we bought a different vehicle this summer, I did all the talking and dealing. When there are telephone calls to be made or problems to be solved it is I who has to take charge. Soon we will have some major insurance issues to consider. That will be mainly my responsibility. We may have a chance to move from our apartment to a condo. There is a condo maybe in our price range available, but all the things to think about in regard to such a possibility are a bit overwhelming.
I love the good times my husband and I still have together, but I miss the way things used to be. I miss the times when my husband took more responsibility for these type things and decisions. I miss the person my husband used to be. Lord, help me choose joy and gratitude today. Continue to direct my path, as You have in the past.”
Dear Christian caregiver, never forget that the Lord is always with you each step of the way. Let Him be your source of strength, comfort, and joy; as you deal with the heartaches and sorrows of caregiving.
Monday, August 27, 2012
He’s Never Failed Me Yet
In out last post we talked about the faithfulness of God. Sometimes the path of a family caregiver of a terminally ill loved one can be so discouraging. As a caregiver for my husband I found myself often discouraged and stressed.
Through it all, however, I found the Lord to be my faithful source of strength. Looking back I know He was with me each step of the way. Through my caregiving experience the Lord wanted me to learn reliance on Him alone. He wanted me to grow in my love for Him. He also wanted me to learn that I needed to trust Him, because He would never ever fail me. I could then and can now lean on the Lord because of His promises in His Holy Word and because He has never failed me in the past. Yes, He has never failed me yet!
The song “He’s Never Failed Me Yet” is a blessing to me. Click on the link below, and listen to the woman singing this song. It will be a blessing to you. Remember dear Christian caregiver, no matter how stressed you may feel God has never failed you yet. God will also never leave you in the days ahead.
http://www.youtube.com/watch?v=eVhXKGicP4c&feature=related
Through it all, however, I found the Lord to be my faithful source of strength. Looking back I know He was with me each step of the way. Through my caregiving experience the Lord wanted me to learn reliance on Him alone. He wanted me to grow in my love for Him. He also wanted me to learn that I needed to trust Him, because He would never ever fail me. I could then and can now lean on the Lord because of His promises in His Holy Word and because He has never failed me in the past. Yes, He has never failed me yet!
The song “He’s Never Failed Me Yet” is a blessing to me. Click on the link below, and listen to the woman singing this song. It will be a blessing to you. Remember dear Christian caregiver, no matter how stressed you may feel God has never failed you yet. God will also never leave you in the days ahead.
http://www.youtube.com/watch?v=eVhXKGicP4c&feature=related
Monday, August 20, 2012
His Faithfulness
It was August 24, 2010. It was my birthday. Family was over to celebrate that night. Earlier in the day we had received a mobility chair for Wayne, my husband. It was perhaps a sign of things to come. Wayne’s declines came fast and furious in the next four months, and the emotional anguish and stress proved heavy during that time.
Something else happened on the memorable day in August, however. One of my family members called to me to come outside to look at a beautiful rainbow that had appeared in the sky. That rainbow was indeed awesome! I had not ever remembered seeing such a beautiful and full rainbow across the whole sky like that rainbow.
That rainbow that day felt like a special birthday present to me from God Himself. It was a reminder to me of the faithfulness of my God, a God who said to me and continues to say to me, “Never will I leave you never will I forsake you.” (Hebrews 13:5b in the Bible)
God has indeed proven Himself faithful in those months since that August day in 2010. The next few months in 2010 as I have alluded to before were very stressful and discouraging as my husband’s health deteriorated at an alarming rate. God provided strength and resources all along the way, however. Wayne entered heaven on January 2, 2011. He was free from the body in which he had been trapped and could now enjoy the Lord’s presence forever. For me it was the beginning of a difficult grief journey. Through it all, however, the Lord has taught me so much about His faithfulness and my need to be dependent on Him. It has also deepened my relationship with Him and made me a more compassionate person. I do not know if there will be another rainbow on my birthday this year, but I do know that my Lord will always be faithful to me.
Dear Christian caregiver, God never promises to give us a life without problems and trials. Caregiving for someone with a serious illness is one of life’s deepest trials. I know this is true, because I walked that path. God, however, has promised to walk with us through life’s heartaches. He has promised to be faithful. Look for His wonders, dear caregiver. Rest in His faithfulness.
Something else happened on the memorable day in August, however. One of my family members called to me to come outside to look at a beautiful rainbow that had appeared in the sky. That rainbow was indeed awesome! I had not ever remembered seeing such a beautiful and full rainbow across the whole sky like that rainbow.
That rainbow that day felt like a special birthday present to me from God Himself. It was a reminder to me of the faithfulness of my God, a God who said to me and continues to say to me, “Never will I leave you never will I forsake you.” (Hebrews 13:5b in the Bible)
God has indeed proven Himself faithful in those months since that August day in 2010. The next few months in 2010 as I have alluded to before were very stressful and discouraging as my husband’s health deteriorated at an alarming rate. God provided strength and resources all along the way, however. Wayne entered heaven on January 2, 2011. He was free from the body in which he had been trapped and could now enjoy the Lord’s presence forever. For me it was the beginning of a difficult grief journey. Through it all, however, the Lord has taught me so much about His faithfulness and my need to be dependent on Him. It has also deepened my relationship with Him and made me a more compassionate person. I do not know if there will be another rainbow on my birthday this year, but I do know that my Lord will always be faithful to me.
Dear Christian caregiver, God never promises to give us a life without problems and trials. Caregiving for someone with a serious illness is one of life’s deepest trials. I know this is true, because I walked that path. God, however, has promised to walk with us through life’s heartaches. He has promised to be faithful. Look for His wonders, dear caregiver. Rest in His faithfulness.
Monday, August 13, 2012
Remember the Love
One day in August of 2010 a few months before my husband’s death and in the midst of the chaos of caregiving I was having a good day. The weather was beautiful and free of all the heat and humidity we had been experiencing. Secondly, my husband was having a good day, and he had experienced a good therapy session. Finally, I had just finished reading some letters that my husband, Wayne, and I had written to each other in 1970 and 1971 before we were married.
Wayne and I met and dated from April of 1970 to the end of the school year, and then we dated again in the next school year until our marriage on July 30, 1971 (I was a teacher then). I went home to my parent’s house during the summers. He also went to summer camp for the Army Reserves both summers. The first summer I also spent 6 weeks involved in a summer mission program, and the second summer I was at my parent’s home preparing for our wedding in my home town and state while he was getting things squared away in WI for our first home.
On that particular August day I was inspired to read our love letters which we had written to each other those two summers when we were separated while dating. It proved a real joy to me to reread those letters that day, and I found myself smiling often.
Those letters reminded me that the first summer Wayne was more sure of his feelings for me than I was for him. I knew I liked him, but I needed to be sure about love and marriage. The next summer when we were corresponding we were engaged, and both of us were sure of our love for each other. It was fun to reread about our young love.
I thought that rereading these old letters might make me feel a little sad thinking back to those days and comparing it with the life we were now living dealing with Wayne’s neurological condition. I guess it did a little. We had matured so much since those early days, however, and I was glad for that growth in maturity. I actually probably felt more sad about no longer being able to do some of the fun things we had done together during our “empty nest” years.
So reading those letters put a smile on my face that day. It reminded me of what was, and it reminded me of the beginning of our love. I love reading inspirational romance books (Christian romance books) as a way to relax. Reading these letters was a little like that except it was my story. That day I had a smile on my face.
Dear Christian caregiver, terminal disease can change a relationship with a caregiver and his or loved ones who are ill. Take time often to remember the love that was and still exists. It will lighten the load.
Wayne and I met and dated from April of 1970 to the end of the school year, and then we dated again in the next school year until our marriage on July 30, 1971 (I was a teacher then). I went home to my parent’s house during the summers. He also went to summer camp for the Army Reserves both summers. The first summer I also spent 6 weeks involved in a summer mission program, and the second summer I was at my parent’s home preparing for our wedding in my home town and state while he was getting things squared away in WI for our first home.
On that particular August day I was inspired to read our love letters which we had written to each other those two summers when we were separated while dating. It proved a real joy to me to reread those letters that day, and I found myself smiling often.
Those letters reminded me that the first summer Wayne was more sure of his feelings for me than I was for him. I knew I liked him, but I needed to be sure about love and marriage. The next summer when we were corresponding we were engaged, and both of us were sure of our love for each other. It was fun to reread about our young love.
I thought that rereading these old letters might make me feel a little sad thinking back to those days and comparing it with the life we were now living dealing with Wayne’s neurological condition. I guess it did a little. We had matured so much since those early days, however, and I was glad for that growth in maturity. I actually probably felt more sad about no longer being able to do some of the fun things we had done together during our “empty nest” years.
So reading those letters put a smile on my face that day. It reminded me of what was, and it reminded me of the beginning of our love. I love reading inspirational romance books (Christian romance books) as a way to relax. Reading these letters was a little like that except it was my story. That day I had a smile on my face.
Dear Christian caregiver, terminal disease can change a relationship with a caregiver and his or loved ones who are ill. Take time often to remember the love that was and still exists. It will lighten the load.
Monday, August 6, 2012
Heartaches and Hope
I was a caregiver for my husband, Wayne, for four and a half years. As I have mentioned before he had a devastating and fast moving rare neurological disease called multiple systems atrophy type c. The last couple years of his life in particular were very difficult.
Through various points in his illness we tried physical therapy. This would seem to help for awhile on a limited basis, but the illness was so powerful that it finally won the battle. Also often while we would be doing therapy Wayne would seem to perk up initially that day, but then he would be so wiped out that all he would do the next day was sleep . Often the transfers were also especially difficult the next day.
In August of 2010 I wrote the following: “So has our life been reduced to therapy three time a week and sleep days in between to recover? It gets a little discouraging. I am trying to remember the blessings tonight, and there are many. I can’t help but feel a little discouraged tonight, however. I don’t think I could handle this, if I did not have my Lord on my side and holding my future. I know there is purpose in all this even though it is sometimes hard to see”
Transfers were also often difficult on other days. He might have a relatively good day one day and a very difficult day the next. One day in August of 2010 I also wrote the following: “I tried to get him to transfer to his recliner chair which is much safer, as it goes way back. Well, that was an ordeal! When he gets really tired, he does not respond to gentle prompts, and I basically had to drag him into the recliner chair. I was afraid he might slip on to the floor. After I got him into the recliner he slept a couple hours plus and was a little better tonight, but he was still spacey.”
About a year and a half before Wayne’s death I also had to begin to thicken Wayne’s liquids. We discovered that Wayne now had to have all of his liquids thickened to nectar consistency to help prevent things from slipping down too fast and getting into his wind pipe and/or lungs. Wayne’s problem was not that he couldn’t swallow, but that liquids sometimes went down too quickly before the flap closed to his wind pipe.
My husband at one time loved to work on the computer. Hoping it would help him I bought a big keys keyboard, but even that did not help him. The disease slowly robbed him of everything he had loved in the past.
When one has a disability and disease like my husband had it changes everything. This was especially clear to me on our last wedding anniversary together. Past years we would have tried to go somewhere special to eat for our anniversary. That year I ordered at a fast food place, and we ate in the car. Because of my husband’s issues and so I can get some sleep, we also each went to our separate beds that night. So our anniversary seemed somewhat symbolic of what was now so different in our relationship. We both loved each other, but it seemed so different from the husband-wife relationship we had once enjoyed.
Yes, there were moments of enjoyment yet during those years. We enjoyed spending time with our children and our grandchildren. We also enjoyed a couple long weekend trips with my siblings, but even those moments were overshadowed to some extent with his disability. These experiences were a wonderful reprieve, but when one returned home reality set in again with full force. There were so many issues with Wayne’s disease that made life a constant struggle.
Living those caregiving years was very difficult. Remembering them also is difficult. Through all the heartache, however, I learned that my hope and help could only be found in the Lord. He was and is a faithful God. Whatever your heartaches turn to the Lord, dear caregiver.
Through various points in his illness we tried physical therapy. This would seem to help for awhile on a limited basis, but the illness was so powerful that it finally won the battle. Also often while we would be doing therapy Wayne would seem to perk up initially that day, but then he would be so wiped out that all he would do the next day was sleep . Often the transfers were also especially difficult the next day.
In August of 2010 I wrote the following: “So has our life been reduced to therapy three time a week and sleep days in between to recover? It gets a little discouraging. I am trying to remember the blessings tonight, and there are many. I can’t help but feel a little discouraged tonight, however. I don’t think I could handle this, if I did not have my Lord on my side and holding my future. I know there is purpose in all this even though it is sometimes hard to see”
Transfers were also often difficult on other days. He might have a relatively good day one day and a very difficult day the next. One day in August of 2010 I also wrote the following: “I tried to get him to transfer to his recliner chair which is much safer, as it goes way back. Well, that was an ordeal! When he gets really tired, he does not respond to gentle prompts, and I basically had to drag him into the recliner chair. I was afraid he might slip on to the floor. After I got him into the recliner he slept a couple hours plus and was a little better tonight, but he was still spacey.”
About a year and a half before Wayne’s death I also had to begin to thicken Wayne’s liquids. We discovered that Wayne now had to have all of his liquids thickened to nectar consistency to help prevent things from slipping down too fast and getting into his wind pipe and/or lungs. Wayne’s problem was not that he couldn’t swallow, but that liquids sometimes went down too quickly before the flap closed to his wind pipe.
My husband at one time loved to work on the computer. Hoping it would help him I bought a big keys keyboard, but even that did not help him. The disease slowly robbed him of everything he had loved in the past.
When one has a disability and disease like my husband had it changes everything. This was especially clear to me on our last wedding anniversary together. Past years we would have tried to go somewhere special to eat for our anniversary. That year I ordered at a fast food place, and we ate in the car. Because of my husband’s issues and so I can get some sleep, we also each went to our separate beds that night. So our anniversary seemed somewhat symbolic of what was now so different in our relationship. We both loved each other, but it seemed so different from the husband-wife relationship we had once enjoyed.
Yes, there were moments of enjoyment yet during those years. We enjoyed spending time with our children and our grandchildren. We also enjoyed a couple long weekend trips with my siblings, but even those moments were overshadowed to some extent with his disability. These experiences were a wonderful reprieve, but when one returned home reality set in again with full force. There were so many issues with Wayne’s disease that made life a constant struggle.
Living those caregiving years was very difficult. Remembering them also is difficult. Through all the heartache, however, I learned that my hope and help could only be found in the Lord. He was and is a faithful God. Whatever your heartaches turn to the Lord, dear caregiver.
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