Approaching a New Year

Today is the last day of 2012. Christmas has come and gone for another year, and we are again approaching a new year. Perhaps this year has been a good year for you, dear caregiver. Perhaps, however, this past year has not been a good one for you. Perhaps you have seen a severe decline in your loved one’s health; and you are grieving the fact that outside of a miracle your loved one will never be the person he or she once was.

Two years ago at this time my husband’s health had taken some severe nose dives downward. As I mentioned on a previous blog post we were able to all celebrate Christmas two years ago with our entire family. All three of our sons and their wives and all of our grandchildren were together that year for Christmas.

On Saturday, Jan 1, 2011 about a week later my husband, Wayne, turned 65. We spent a quiet day at home. I fixed him his favorite meal. Also he received phone calls from his sons who live far away and his grandchildren sang “Happy Birthday” to him on the phone. Later our local son’s family came briefly and those grandchildren sang “Happy Birthday” to him. I put him to bed like normal that evening. But sadly, on Sunday morning, January 2, 2011 my son and I discovered my husband had passed away during the night when we went to get him out of bed for the day.

Even though my husband’s health had declined significantly, I had no clue that I would find on that Sunday morning that my husband had passed away during the night. The process of the disease was supposed to take 6-10 years after diagnosis. Wayne lived only 4 ½ years after diagnosis. I knew that he would pass away some day, however; and I anticipated that the his eventual death would be somewhat easier because of the grieving I had already done. I had been slowly losing him for a long time. I found out, however, that certainly was not true. Death is so final on this earth. He was the love of my life for so many years.

My body reacted to the shock with chills, nausea, by feeling tired and wired at the same time, and by feelings of operating on auto pilot. I also found, however, that now I was beginning to release some tears which I could not release during all those years of having to remain strong in my role as caregiver.

I was so happy for my husband. He was released from a body which trapped him, and he was now in heaven. I was sad for myself and my family, as we would miss him. I also wondered what next? As difficult as caregiving truly was, it was my purpose for being on this earth for so long. I would have to rediscover a new purpose in the days ahead.

Dear caregiver, you may find this post more discouraging than helpful. If so I apologize. Death, however, may come some day for your loved one. Know, however, that your loved one as well as you, dear Christian caregiver, are in the hands of the Lord. God says all the days that we and our loved ones are meant to live on this earth are ordained by the Lord God. (Psalm 139:16) Hence, I plead with you to not engage in caregiver false guilt during your caregiving days or in the possible eventual death of your loved one. It is the devil’s trick to discourage you. Also caregiving for a family member can be all consuming. Hence, when it ends a caregiver can have a sense of loss of purpose. I know I did. Be assured that God will use even that to refine you and mature you. Eventually the Lord will slowly reveal His new purpose for your life, begin to heal you, and begin to add new joy to your life. What will this new year bring for you, dear Christian caregiver? No matter what is brings trust that the Lord will be with you each step of the way.

Treasure the Moments

In 2009 my son, Brian, his wife and little girl flew home from London. Although Brian has been home in between he had not been home for Christmas for about 7 years. That was a wonderful blessing. Our middle son, Troy, and his family live near by. That year we had hoped our oldest son, Derrick, and his family from Iowa could be here Christmas weekend, but they could not come because of the heavy snow and ice that bombarded their area and actually was pretty widespread. However, we had a fun Christmas party with Troy and Brian’s families that Christmas Eve.

In December of 2010 my son, Brian, his wife, and my little granddaughter again flew in from London. That year I guess I had mixed emotions about their upcoming arrival. I was glad to see my son and his wife, and I was excited about getting to interact with my little granddaughter. Their anticipated stay of two weeks was a long time, however. I was very busy taking care of my husband, Wayne, at the time and having people around so much (even family) would be emotionally tiring even when it was a good time.

It turned out that there were joyful moments, blessed moments, and chaotic moments that year. My son from London, his wife, and their two-year-old little girl were here from December 13 to December 27. My son, from IA who hadn’t been able to come the year before, his wife, and their two daughters were also here from the Wed. night before Christmas to Sunday the 26th. Our local son, his wife, and their four children were here part of that time especially on Christmas Eve and Christmas Day.

It was wonderful having them all here for Christmas at one time. It had been a long time since that happened. My husband, Wayne, had an exceptionally good day on that Christmas Day. I consider that one of our blessed moments. That truly was a gift from above.

It was a joyful moment when I saw all of my grandchildren sitting around the table eating a snack or playing together downstairs. It was a blessed and joyful moment when all the grandkids would come in and crawl on bed and give their grandpa a kiss and hug after he was tucked in bed for the night. The blessed moments also came when everyone was considerate of Wayne’s schedule and the way things needed to be with him and even helped me with caring for him.

The overwhelming and chaotic moments came when they were all cooking in the kitchen at the same time and asking me where things were. The overwhelming moments came when the clutter starting piling up with having so many people around so much. The overwhelming moments came when I felt as if I needed and wanted to be there for everyone especially my grandkids, and I still needed to meet my husband’s needs. The overwhelming moments also came when it felt as if I was crowded out of my own space, so to speak.

Those moments were the last Christmas my husband spent with us, however. They are moments we can look back at and treasure as a family. Treasure all the moments with your loved one this Christmas, dear Christian caregiver.

Will You Rejoice?

The Christmas season is often associated with the word rejoice. At first glance it would seem ridiculous to associate rejoicing with family caregiving. The four and one half years from my husband’s diagnosis of his neurological disease to his death on January 2, 2011 were very difficult years for my husband and I. In that time my husband, Wayne, went from still working, to walking with a cane, to a walker, and then to a wheelchair and a sit to stand lift. Wayne’s disease affected everything. It affected his mobility, his balance, his speech, his eating habits, and even his personality.

Yet when I look back there was so much for which to be thankful even then. There was so much for which I could rejoice. What about you dear Christian caregiver, can you rejoice this Christmas in spite of the heartaches of caregiving?

The emotional feelings that surface with caregiving can be intense at times. I missed the way things used to be. Every change downward in my husband’s health was emotionally draining and scary. Also the physical demands of caregiving were heavy, and most of the decisions fell on me those last years.

So what was there to rejoice about in this situation? For one thing I knew that I was becoming a much stronger person through all those caregiving experiences. I was having to do things which I had never done before. This was good, as it strengthened my character and confidence.

More importantly it strengthened my faith and my love for my God. Over and over I saw things fall into place when I felt I could no longer hold up. Right when I was at my lowest point of despair in the last months of my husband’s disease, my prayers were answered by the ability of my son to step up and help. Also I was able to procure a sit to stand lift. I saw over and over again this kind of answer to prayer. So I was sad about my husband’s illness. It was the heartbreak of my life. But I rejoiced in God’s provisions from above.

I also rejoiced in my three sons and their wives. I rejoiced in my then seven wonderful grandchildren. I rejoiced in their beautiful and sweet spirits and in their love for their Grandpa and I. I rejoiced that I was a breast cancer survivor. I rejoiced in the daily blessings such as the sun shining. I rejoiced in my salvation through Jesus Christ. My prayer at the time was “Lord, help me to remember these blessings when I become sad or overwhelmed with the challenges of caregiving.”

Dear Christian caregiver, the challenges of family caregiving are often discouraging and overwhelming, but the Lord is with you today and every day. His blessings are with you every day also. In what will you rejoice this Christmas season, dear caregiver?
　
　

Walk in Peace

Family caregiving is often a very long uphill walk. It is fatiguing emotionally and physically. It is essential that you cling very tightly to the hand of the Lord, dear caregiver. Be aware of His presence with you each step of the way. This is the way to not only survival in your caregiving walk but also to peace.

Trust God enough to not strive to control or predict the future, dear caregiver. When you try to project your and your loved one’s life too far into the future you are trying to do this on your own. You are seeking to be self-sufficient. This will not work. Instead daily refresh yourself in God’s Holy Word, the Bible. Spend time in prayer. Take time to be still in His presence. We all desperately need His help.

Seek to live in the present, dear caregiver, depending on the Lord alone for each moment. I remember as a caregiver feeling so inadequate. That was actually a true assessment. The other fact we must remember, however, is that God has abundantly promised to be our strength. He has abundantly promised to supply all our needs.

Caregiving is so overwhelming that there is no way that I could have handled it without the Lord’s strength and presence in my life. You cannot either, dear caregiver. The truth of the matter, however, is that we need the Lord’s help with everything. Don’t divide your life, dear caregiver, into things you feel you can handle yourself and things for which you need the Lord’s help. You and I need His help for every single area of our lives. If we give all our needs to Him, we can walk through life with confidence and peace.

Be Conscious of His Presence

Dear Christian caregiver, it is vitally important that you stay conscious of the Lord’s presence step by step throughout your day. The Lord’s presence with you is both a protection and a promise. He will always be with you, and He will never leave you. Go gently through each day keeping your eyes on the Lord. He will open up the path He has planned for you step by step. Just trust Him along the way.

Life as a family caregiver is overwhelming at times. The challenges and difficulties are numerous. The promise of the Lord’s constant presence is a protection against the pitfalls of despair and self-pity. It is also a protection against worry about the future. When you think about your future and the future of your loved one envision the Lord in that future, because the Lord has promised to always be with you. Keep your eyes focused on the Lord.

Look to the Lord continually for help in the challenges of family caregiving. You are the God appointed comforter and help for your loved one. Often you need comfort yourself, however. When you need comfort, the Lord wants to enfold you in His arms. As you receive His comfort you will be a better channel of comfort to your loved one for whom you are caring and also perhaps for other people.

Waves

I journeled the following words in late November of 2010 while caring for my husband. Perhaps you can relate, dear caregiver.
　
“Yesterday I was awestruck by the beautiful sunrise. First, there were the beautiful pinks coming forth all across the sky and then the gradual yellows; as the early morning sun rose into view. Waves of joy and gratitude for God’s faithfulness surfaced in my heart.

Other kinds of waves hit me at times also, however. These are waves of sadness. I really believe my caregiving life has meaning, and I believe there is a purpose and a definite plan for my life through the struggles of caregiving. There are also definite blessings that have come as a direct result of the whole caregiving experience. This does not erase the fact, however, that I am slowly losing the life I once had with my husband. I am slowly losing my best friend. Also there are so many physical challenges and other emotional challenges with the whole caregiving experience.

Hence, I sometimes have these waves of sadness that hit me. Sometimes it is right in the middle of joyful or pleasant moments and experiences. Recently it hit me when I was ready to enter a church service. I think that may be because I miss the fact that we used to be able to attend church together. Today though my son volunteered to give me some time away while he took care of my husband’s needs. I enjoyed that very much, but there was a moment or so even then that I felt this wave of sadness come over me. Sometimes I feel it when I first wake up in the morning.  I am really struggling for acceptance and gratitude. I believe I have grown some in this area. It is a strange thing, however, this coexistence of waves of joy with waves of sadness.”

Know dear Christian caregiver, that the Lord is with you in the waves of joy and in the waves of sadness. He has promised to never leave you or forsake you. Rest in that dear caregiver.
　
　
　
　
　
　
　　
　

Thanksgiving

Thanksgiving day is nearly upon us in the United States. Dear caregiver, perhaps you are not feeling very thankful this year. Perhaps the discouragement and overwhelming circumstances of your loved one’s illness is sinking you into a pit of despair.

Never forget, however, dear Christian caregiver, that the Lord has promised to always be with you and never forsake you. He is with you every step of the way. Also He is giving you blessings every day in spite of the trials and heartaches. When I was a caregiver I was challenged at one point to write down three things each day for which I was thankful. That exercise alone helped me realize that God was indeed with me. It also helped to lift my spirits during the disheartening days of caregiving.

I challenge you, dear caregiver, to also list a few of your blessings each day. Do this until Thanksgiving day and into December and into the new year. May God bless your Thanksgiving day!

You Have Done Well

November is National Family Caregivers Month. If you are reading this post you are most likely a family caregiver. As my faithful readers know I was a caregiver for my husband for four and a half years. In honor of National Family Caregiver’s Month you will find a “Prayer for the Caregiver” poem below. During my caregiving days this poem was given to me. I now share it with you, dear caregiver. May it be a blessing to you, as it was to me. I have posted this poem here before on my Christian Caregiving blog site. I hope this poem will prove a blessing to you, as you read it again. God bless you as you do this work which God has assigned you, dear caregiver!

Prayer for the Caregiver
by Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.

You hold shaking hands and provide the ultimate care:
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.

You are resilient, amazing, and beauty unexcelled,
You are the caregiver and you have done well!

“Never Been This Way Before."

Dear caregiver, do you weary of the constant changes in your loved one’s health? If one’s loved ones faces a disease from which there is a possible cure one continues to hope for their recovery. It is difficult going through those days, but there is hope for better days ahead. When one’s loved one’s disease is incurable and the declines are persistent one enters an even more difficult sphere. As a caregiver I so remember dreading and sometimes fearing the next decline in my husband‘s health. Would I be able to handle his next decline physically and emotionally?

In the book of Joshua in the Old Testament God's Old Testament people, the Israelites, were about to enter the land that God had promised them many years ago before. To be able to enter this new land, however, they needed to cross the Jordan River. The Jordan River was at flood stage at this time. A huge assembly of God's people had to cross the Jordan River. It would take a miracle for God's people to safely cross the Jordan River, but our Lord God specializes in the impossible.

The officers of God's people told them, "When you see the ark of the covenant of the Lord your God, and the priests, who are Levites, carrying it, you are to move out from your positions and follow it. Then you will know which way to go, since you have never been this way before." (Joshua 3:b-4a) The ark of the covenant was a symbol of the Lord's presence among them. Only if God's people did this would they "know which way to go," for this was new and foreign territory to them.

As a caregiver I too had “never been this way before." It was a scary place to be. So I also had to keep my eyes focused on the Lord, and I had to follow His leading. Each new day is a new day given to us by the hand of the Lord. When we awaken in the morning we do not know what new experiences or circumstances we may face that day. This is especially true for family caregivers. They too “have never been this way before."

Every day and moment of our lives is known and planned by the Lord, however. He knows and understands the joys and heartaches caregivers face today and in all the tomorrows which may lie ahead. Caregivers must trust that the Lord will safely lead them each and every day, as they keep their eyes focused on Him and follow Him. Before they crossed the Jordan River their leader Joshua told God’s Old Testament people, "Consecrate yourselves, for tomorrow the Lord will do amazing things among you." (Joshua 3:5)

The Lord will do "amazing things" in our lives also, if we trust and follow Him. In Joshua 3 the waters did not divide while God's people were still in camp or even as they were marching towards the Jordan River. (Joshua 3:15b-16a) Only when the leaders and people stepped out into the water in faith were God's people able to safely cross the Jordan River! (Joshua 3:15b-16a)

As a caregiver I sometimes faced seemingly hopeless situations. Dear Caregiver, you too may sometimes feel hopeless and even desperate in your caregivng experience. At times like these commit your needs and desperate situations to the Lord. Like God’s Old Testament people step out in faith. Trust that the Lord will see you through the seemingly impossible Jordan Rivers of your life. The Lord has our lives in His control, and we can trust and follow His leading!

　

　

The Lord Will Provide

One of the most discouraging aspects of caregiving for family members with a terminal illness is witnessing the continual deterioration of their bodies. When my husband was first diagnosed with his neurological disease (multiple systems atrophy type c) in 2006 he was still able to work for awhile. After he quit working he gradually moved from a cane to a walker to a wheelchair, and then finally I had to use a lift with him the last months of his life.

The last months and perhaps weeks of my husband’s life the progression in his disease seemed to take more rapid dives downward. One good thing at that time was that I was able to rent a sit to stand lift. Someone from the office of aging and disability told me about this possibility, and so I pursued this. So in late October of 2010, my son and I went to take a look at this sit to stand lift at the HomeCare Resources store in a local town. A few days later the lift was delivered.

It took me a couple weeks and a couple demonstrations to begin to feel comfortable using this product. After I had all my questions answered about the proper use of the product and I had practiced using it for awhile, I felt fairly comfortable using it. With the lift I could get my husband transported from one of his chairs to the toilet, to bed etc. right on target. It was awkward using this lift and it involved some heavy pushing. It was doable, however.

Those days were difficult, but when I look back I am amazed at God’s provision step by step. I am amazed that God provided this lift so that I could keep Wayne out of the nursing home. I am amazed that I learned to use this device by God’s grace. I am amazed that God provided my C N A lady who helped some evenings and my son to help me during those last months. My house at that time began to look like a nursing home with all the disability equipment standing around, but the Lord provided.

God never promises us a life free from trials. He does promise to be with us each step of the way, however. I have a picture in my kitchen which says, “The Lord Provides.” He surely does provide. Whatever heartaches and challenges you are undergoing, dear Christian caregiver, know that the Lord is indeed with you step by step. He will provide.
　

Keeping Your Eyes on the Lord

As we discussed in our last post, life is like a race. It is often a difficult race filled with obstacles and challenges. It is a race of faith. It is important that we keep our eyes on the Lord Jesus. This is especially true of the caregiving race.

Dear Christian caregiver, keep you eyes on Jesus and not on others as you run with faith the caregiving race. If you look around at others it will discourage and distract you. If you concentrate on another’s race, it may seem to you that their life is much easier. First of all you do not know the struggles they may be facing. Secondly, it may cause envy in your heart. God has assigned you the race that is meant for you, and that is the caregiving race.

Or perhaps if you concentrate on others you may see others who seem to be “holding it together” better than you are. Again you do not know their struggles. Concentrating on others will only distract and discourage. It will hinder you. Concentrate on the Lord instead.

Also dear caregiver, do not look inward. If you focus on your limited resources and strength and your own issues you will become very discouraged. You may even want to give up. The truth is that we are very weak in ourselves. We are totally dependent on the Lord.

I remember those days during my caregiving years when I felt, as if I could not go on one more day. That was a good place to be in a way, because it made me realize that I was totally dependent on the Lord. Do not look inward, dear caregiver. Look to the Lord.

Finally, dear caregiver, do not look back. It is tempting during caregiving days to look back with longing to the way things used to be. As I saw my husband deteriorate before my eyes step by step, I grieved each step backwards. I also sometimes longed for days past. That really serves no useful purpose, however, except to discourage and impede.

Dear caregiver, God has assigned you the difficult but vitally significant job of family caregiving. Trust Him to give you the strength to run your caregiving race, and run that race with your eyes focused on the Lord. Don’t look back. Focus on Him.

　

The Caregiver's Race

Living life on this earth in many ways is like running a race. In fact, the Bible refers to our lives as a race which must be run with perseverance. I think this is especially true for caregivers. Caregving for a family member with a terminal or long term illness involves a determination and perseverance not found in many other of life’s experiences.

Running the caregiving race requires energy. It is demanding, emotionally and sometimes physically exhausting, and something which is never ending. To run this race successfully caregivers needs to rely on God Himself to supply them with the energy and strength to carry on day after day. Caregivers often feel low in energy, but God has promised to supply the strength to continue. It is also so important for caregivers to feed on God’s Word, so that they will have the spiritual nutrients to continue the exhausting caregiving race in which they are participating.

As we mentioned before running the caregiving race also requires perseverance. It requires a consistent determination to keep going even when tired or when uncertain where the road ahead will lead. This race can also feel very lonely to caregivers. As a caregiver for my husband with a long term terminal illness I so remember those feelings of fatigue. I also remember those feelings of fear and uncertainty about the future and the loneliness.

The Lord has promised to always be with us, however, in all of life’s challenges. As He was with me, He will be with you also, dear Christian caregiver. He will never forsake you. He will help you run your caregiving race with perseverance! Dear Christian caregiver, run the caregiving race keeping your eyes upon the Lord. Do this, for He alone is your source of strength. He also will keep you from quitting the race.

Everybody has a race to run in this life. The caregiver’s race is different than other people’s races. It is the race you have been assigned, however, dear caregiver. Run it in confidence trusting that you will be given the strength and energy to persevere.

Life’s Unexpected Twists and Turns

 By early October of 2010 a few months before my husband’s death my stress level was often extremely high. Things seemed to be getting more and more difficult in caring for my husband, Wayne. We would have some really good days, and then we would have some really difficult days when transfers were very difficult if not impossible.

I would become so weary of these constant highs and lows. I knew God was guiding me. I had seen that over and over, but it was still difficult. In early October of 2010 I wrote, “Frankly, there are days when I am not sure how much longer I can do this. It seems like every time I am at the end of my rope some other help falls into place, however. I will have to keep trusting. I realistically need to also at least look into all the options including possible nursing home in the future. I hope to avoid nursing home if at all possible, but I may not have a choice.”

Then by middle October 2010 life had taken some fairly rapidly developing unplanned twists and turns in just a weeks time. My husband’s motor and processing skills became increasing more limited at a much faster rate. Also my husband’s transfers had become increasingly difficult. Even the CNA lady that I had coming in at that time three times a week had noticed the difference. I had become increasingly concerned, and I had been feeling that I could not do this anymore. In the mix of all this my son who lives near by had lost his job. So in a way we had two families in crisis.

After somebody talked with me at church on a particular Sunday morning around that time showing concern for my well-being in all this, I decided to have a talk with my son and his wife. I told them that I was getting to the end of my strength in physically handling my husband and that I needed to at least check out nursing homes as a undesired but possible option. My son had already started helping me on nights when my CNA lady did not come. I felt that even that was not enough, however, as I still was handling the days alone at that time.

The upshot of all this was that my son decided since he was not working he would come four times a day most days to help me with transfers to the bathroom etc. of my husband. We now had a scheduled plan for this. The idea was that this would buy me time to at least check out other options.

This was definitely God’s timing. A few months after Wayne’s passing on to heaven my son found a new job (another story of God’s mercy and grace). In the meantime God provided me with the help I needed as Wayne’s caregiver. It was such a spirit lifter. My son and I were able to care for my husband’s needs until the day of his death, and my heart’s desire of avoiding putting Wayne in a nursing home was fulfilled.

I would not want to relive those difficult caregiving days especially the last few months. In fact even remembering those days is difficult. God was with me through it all, however. He always provided. He will provide for you also, dear caregiver.
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　　

　
　
　　　　
　
　
　　
　
　
　　
　　　
　　
　
　
　
　
　
　
　
　
　
　
　
　
　
　
　　　
　
　
　　
　
　　
　
　
　
　

Finding an Oasis in the Caregivng Experience

Because caregiving for a family member can be so intense it is important to take little breaks or an occasional oasis from caregiving. Both in October of 2010 and 2011 my husband and I went away for a few days to the WI Dells with my son’s family. My son’s family went to get lengths including taking out the back seat of their van to accommodate my husband’s mobility equipment or a special chair.

We also always enjoyed our Thursday nights suppers at my son’s family’s home. As long as I was able with my husband’s deteriorating health I also took occasional substitute teaching days, and I helped my daughter-in-law with home schooling our local granddaughters on Wed. mornings. I also sang in church choir and attended woman’s Sunday school.

I further attended some concerts with a group of ladies. About a half a year before my husband died I hired a C N A to help me a few nights a week, so I could attend these occasional concerts. I found when I had these little breaks from caregiving, I was better able to keep things in perspective and keep my spirits up.

Dear caregiver, caregiving for a loved one is so intense and stressful that it is important that you find an occasional oasis from your caregiving. If you can not leave your loved one alone at all, bring in someone else to stay with your loved one from time to time. Also plan and make a little oasis or spot in your home where you can retreat and regroup for awhile. Finally, I found I needed to rise earlier than my husband every morning to spend time with the Lord in prayer and Scripture reading. Finding these moments of oasis are essential to your emotional and spiritual well being, dear caregiver.

Hope Not Panic #

By late September of 2010 a few months before his death things were definitely changing with my husband, Wayne. Transfers for my husband to the bathroom, back to the chair etc. were getting more difficult, and I found myself becoming increasingly stressed. I found myself dreading and consumed with thinking about the next transfer. I also kept wondering what my next step needed to be. Keep doing it myself? Try to hire more in home help? Pursue nursing home options?

Then one night my son came over. He was all stressed out because of a serious job issue. He was basically in panic mode. It was a serious situation, as his job might be on the line. My first reaction was to think, “I do not need this. I have enough stress of my own.”

Then, however, I found I could relate to him and thus calm him down. I told him about my heavy stress level and how we just needed to trust. I told him that nothing happens by chance, and we are being guided. I also told him that what will be will be, and that we will be okay. I asked him if he had prayed about it, and he said “Yes.” He then asked me to pray for him. I did that, and we both felt better. I do not think I could have helped him as much, if I was not as stressed as he was. I could relate to him, and therefore what I said to him had validity. It helped both of us.

This whole incident reminded me that everything has a purpose even the difficulties of caregiving. Because of the stress I was experiencing with caregiving I could help my son. We also shared a prayer and a hug together. That was a special blessing in spite of the situation we both were in. What could be more beautiful than that?

Hope reminded me that I really did not have to be in a state of panic. I would be guided step by step. Hope told me that caregiving would never be easy, but there was an eternal purpose to it all. God’s purpose would be fulfilled in me, and His love was with me. Hope told me that what I did in caregiving was important, and it had eternal consequences. Hope told me that the trials of caregiving was forming my character to become stronger. It reminded me to not focus on what I saw but on what would be and on what was good in my life right then. Hope I realized focuses on seeing the small miracles of each day and knowing and trusting they will continue.
　　　

Caregiver Prayer

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.”

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.
　

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.
　

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

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.
　
　

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.
　　

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.
　
　

Other Life Lessons Taught by Caregiving

In my last post we talked about some of the life lessons taught by caregiving. There are so many lessons a caregiver can learn through his or her experience with caregiving that it can not be contained in just one entry. I am sure we could fill many posts talking about life lessons learned while being a caregiver.

Caregiving by its nature teaches what is important and what is not important. It teaches that frivolous material things are NOT important. Family and relationships ARE important. As a caregiver I also was reminded that my treasures did not lie in earthly things but it heavenly things. My faith in my Lord God and my relationship with Him was and is alone of supreme value. Caregiving because of its challenges and sometimes heartaches further often tested my beliefs between what I said I believed and what I really believed in regards to my faith in my Lord.

Caregiving also teaches us that knowing the “why” of why our loved ones became ill would not take away the emotional pain of watching our loved ones suffer through the effects of their illnesses. Some things are just too difficult for our human minds to understand, and some things just have to be left in God’s hands.

Another important truth learned from caregiving is that God is good. Circumstances may be bad, but God is good. God is the very definition and essence of goodness. He proved that by sending His son on the cross. Thus He can help and guide caregivers who are struggling to make their way through the maze of making impossible and confusing decisions about their loves one’s care. He can help caregivers who are struggling to keep emotional and spiritual equilibrium in the midst of the heartaches of seeing their loved ones decline in their health.

Caregiving further teaches that joy can coexist in the midst of the heartaches and grief that often accompany caregiving. This is because joy is not based on circumstances which are favorable or perfect. Rather it is based on a relationship with the Lord.

Finally caregiving teaches that God is sovereign and in control. Nothing happens to a Christian caregiver or his or her loved one that is not filtered through His love. This is true even in the heartbreaking events which often accompany caregiving. This is a hard truth to accept. When this truth is accepted, however, it a soft place to land when overwhelmed with caregiving difficulties or life’s difficulties in general.

Today, July 30, 2012 would have been my husband’s and my 41rst wedding anniversary. Caregiving and watching my husband decline in his health and then his death in January of 2011 has been one of my life’s most difficult tests. Knowing I could trust that God loved me and was in control in the midst of the confusion and grief of it all made and continues to make all the difference in the world. Dear Christian Caregiver, never forget that the Lord loves you, and He is good. He is in control.
　　

Valuable Life Lessons Taught by Caregiving

Caregiving by its very nature tends to teach valuable life lessons. In many ways caregiving is a grief process for caregivers, as they see their loved ones continue to decline. Caregiving is a difficult process and experience. As a caregiver for my husband for over four and one half years I also found the caregiving experience to be a great teacher, however.

I think caregiving and its challenges teaches us that God uses even the difficulties and heartbreak of caregiving for ultimate good. Caregiving and life in general is often difficult. That comes from living on this earth. Yet we know that God does not waste our sorrows. When we think of Jesus dieing on the cross we know that eternal life came from that death on the cross. From something so awful as Christ’s crucifixion came the best thing that could possible happen namely our salvation. So very good things come from very bad things. The cross illustrates that to us. In the same way God brings ultimate good out of the heartbreak of caregiving. He uses caregiving to build our characters, draw us closer to Himself, and in a host of other ways. God never wastes our sorrows.

I think caregiving also teaches us that life is always out of our control. We live in a fallen world. Hence, seeking self-sufficiency is a terrible place to be. Delusions of strength and self-sufficiency will in fact hurt us. Caregivers are often great organizers and great advocates for the loved ones under their care, but they also soon realize that they are not sufficient in themselves. The job of caregiving is too big for them in their own strength. Realizing their need for their dependence on the Lord is essential. I know when I was a caregiver if I had not known that the Lord was with me, I would have folded under the pressure. Acknowledging one’s weakness and dependence on the Lord is a good thing. It is a valuable lesson to learn. Caregiving often teaches that lesson.

In the whole caregiving scenario it is good whenever possible to accept and enlist the help of other people also. This help could be emotional encouragement or physical help in the care of the caregiver’s loved one. Accepting or asking for help never comes naturally, but we must be humble enough to accept it. Hence, humility is often a lesson taught by the caregiving experience.

For a variety of reasons, however, sometimes others will let us down and not be there when we need them. That was surely my experience as a caregiver. The Lord, however, will never let us down or betray us. He really is the only One who can get into the caregiver’s head and understand all the emotions and heartaches that he or she is feeling. He alone is the One to whom we can go and pour out our hearts, and also allow Him to speak to us. The Christian caregiver can speak to the Lord all through the day at any moment. Caregiving and it’s difficulties allows the caregiver an opportunity to pray like never before. As I said before, I do not know what I would have done without the presence of the Lord in my life during those difficult caregiving years.

Finally, caregiving teaches the need for the promises of the Bible to sustain us. As a caregiver I found that it was essential to try to begin every day in God’s Word. God’s Word contains so many awesome promises of His care, guidance, and presence. Hence, I found the promises of the Bible comforting and necessary in my duties as a caregiver. Caregiving is so very emotionally, physically, and spiritually draining. Without the promises of God’s Word I do not think I could have survived my caregiving days. Dear Christian Caregiver, read God’s Word, study it, meditate on it, memorize it, and internalize it.

So dear Christian Caregiver, lean on the Lord and on His promises in the Bible, and trust that He will bring good out of the chaos of caregiving.
　

Too Much For Me?

Dear family caregiver, have you ever said to yourself, “This is too much for me! I can not handle the stress and emotional burdens of caregiving one more day!” I know I thought those thoughts when I was a caregiver.

One day in the middle of July of 2010 I was feeling pretty discouraged. I was seeing some more serious declines in my husband’s health. The life expectancy after diagnosis of his rare neurological disease (multiple systems atrophy type c) I had been led to believe was six to ten years. Wayne’s declines were coming so fast, however, that I felt as if I was always a step behind in keeping up with them As it turned out Wayne only lived about four and a half years after diagnosis and about five and half months after that discouraging day in July of 2010.

On that day in mid July I found myself having a good cry. At that time I hardly ever cried, because I felt I had to stay so strong all the time. So this was a bit rare for me then. First of all Wayne had been spending a lot of his time sleeping away his days. Then we had experienced some rather difficult transfers from his wheelchair to the bathroom and back to his wheelchair the day before. I also had recently received some other discouraging news. I was feeling like I could not do this anymore. I was feeling as if it was all too much for me.

How different one day can make. The next day or so I received a card in the mail from my son from IA family. The front of the card read like this, “Nothing that comes your way is too much for you. No matter what it is, God is more than equal to it—you’re not, but He is and He lives in you.” Wow! Talk about a message from God just when I really needed it. Inside the card was written a personal message thanking me for all that I did for Wayne, my son’s Dad.

Earlier in that same week I had placed an ad in our local village ad paper for caregiving help for an hour once or twice a week in the evenings to get my husband to the bathroom and into bed. I thought I would be doing good if I received just one reply. Well, that ad paper came out that same day, and I received 5 replies. I was able to set up with one of these woman who responded to come in twice a week and later three times a week for an hour each at bedtime. The rates also were very reasonable. So that was another spirit lifter that day. This lady helped me the last months of my husband’s life. Also at the very end my local son was also able to step up and help me.

Those caregiving years especially the last months were very difficult and emotionally and physically challenging, but God was with me each step of the way. He paved the way. He will pave the way for you also, dear Christian caregiver.

　
　
　
　

Replace

The emotional burdens that accompany caring for loved one can be heavy at times. This is especially true, if the loved one has a terminal illness. Turning to the Lord is really the only resource for these kind of emotional burdens. On July 12, 2010 in the midst of my days caring for my husband I wrote the following:

“I am seeking this month to replace carrying around my emotional burdens with consciously seeking to release them to God in prayer. Every time a negative emotion comes up and they have continued to come up, I have resolved to take a deep breath and release it or give it to God. Like one releases a balloon I want to continually release these feelings to God.

I am serious enough about this that I have even made a visual of this with my computer print program. My picture is of a kite floating in the air and also of a hot air balloon. I also have the names of emotionally negative feelings I want released from my life. So how well am I doing? I think it is helpful to have this resolve and word picture in my mind. I am consciously trying to release the negative emotions as they come up. I also realize, however that this will be a continual battle, because the negative emotions come up so easily and without warning.

When I think too hard about how far down my husband has declined in the last four years it is still easy to become sad. When I think about his latest transition downward, so that he requires my help every time he needs to use the bathroom and all the ramifications of that, it is easy to feel discouraged. When my husband’s spends many hours some days sleeping it is easy to feel lonely, trapped, and frustrated. When I wonder how long I can take care of him before he needs to go to a nursing home, I feel frightened and a host of other emotions. Caregiving is demanding enough, however, without carrying around the extra negative emotions. Moreover my God wants me to release them to Him. He wants me to trust Him

When I think about my picture I wonder if the kite or the hot air balloon is a better picture. It would seem the hot air balloon is a better word picture. With the kite I am still hanging on to the string trying to maintain control. Perhaps both are good word pictures. There are things I can and must do as an instrument in God’s hands in regards to my husband’s health care. Negative emotions and things beyond my control have to be completely released, however. In that instance, the hot air balloon is a better illustration.

So again, how am I doing? There are still many negative emotions and sad moments, but I am fighting the fight. I am seeking to release. I call that victory moment by moment. I call that falling down and then getting up again. I call that being a weak human with supernatural help from above, if I just avail myself of it.

Matthew 11:28-30 in the Bible has become a favorite of mine. It says, ‘Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.'  I have been given the burden of my husband’s disease, but my burden of the negative emotions that accompany that can become light. All I have to do is release them.”

Dear Christian Caregiver, What emotional burden can you release today? With what can you replace that emotion? Give it to the Lord, dear caregiver.

Fiery Arrows

As a caregiver do you ever feel as if you are being bombarded by the “fiery arrows” of negative emotions? (Ephesians 6:16) Negative emotions can so easily spring up in the midst of caregiving chaos and heartache.

On June 9, 2009 while caring for my husband, Wayne, I wrote the following words:
“Sunday in church was just what I needed for encouragement this week. It is so easy to allow myself to get bogged down with discouragement, impatience, and sometimes anger. I realize I need to fight those “fiery arrows.” There is still so much for which to be thankful. I need to concentrate on that.”

Then on June 23, 2009 I journaled the following words:
“Wed. night I was able to go to my first in a series of 7 weeks of Bible study with a group of woman. The series is called Walking by Faith Lessons Learned in the Dark. These lessons so apply to my situation. The future is unknown and feels scary for Wayne and I, but I do know the Lord who holds the future. I need to focus on that and on the fact that I know my Lord will always be with me.”

So how does a caregiver fight the “fiery arrows” of negative emotions? One way I think one can do this is my remembering the good things that still are present in one’s life. Caregiving can be physically, emotionally, and spiritually draining. There always are blessings in one’s life, however. We need to look for them and be grateful for them. We also need to look for the wonders of God’s working and guidance in our lives. If we look for these things we will find them. If we look for these things it will also help to soothe the negative emotions.

Caring for someone with a terminal or serious disease can be frightening at times. This is because the future is so uncertain. Hence, fear and other negative emotions can quickly surface. It is wise to take it one day at a time and one step at a time. It is also wise to leave the future in the hands of the Lord. Caregivers tend to be great advocates for their loved ones. In the end, however, caregivers need to remember that they are not in control. God alone holds their futures and the futures of their loved ones. In the measure caregivers can rest in the Lord’s care the negative emotions will be soothed.

As a caregiver for my husband I found that fighting the “fiery arrows” of negative emotions was a constant struggle. If it were not for my faith I would have not been able to persevere. My faith and knowing that God was in control made all the difference. The promises of God’s Word that He would always be with me soothed my fears and other negative emotions. Finally the weapon of prayer and looking for God’s working in my life was a big help in fighting those “fiery arrows.“

Dear Christian Caregiver, remember that emotions negative or otherwise are just feelings. Feelings are not necessarily based on truth. Only God’s Word and resting on your faith in God is the source of truth. Look for the blessings in your life, and rest in His truth.

(I will be gone on vacation next week Lord willing.  I will try to publish my next post on or around July 9.  Have a blessed Independence Day!)

　　
　
　
　

Words of Affirmation

Family caregiving demands huge sacrifices emotionally, spiritually, and physically from the caregiver. At the same time it is not often affirmed and recognized by society. Sometimes even the caregiver’s loved ones do not affirm or acknowledge the love sacrifices which are being made for them. They sometimes can not or do not do this, because they themselves are so overwhelmed with their disease. In the spring of 2009 in the midst of my husband’s neurological disease I wrote the following words:

“The other day I took one of those Facebook quizzes. I am never big on these quizzes, because they appear to be a bit of a hoax. The quiz I took this time, however, seemed to match my reality pretty closely. The name of the quiz was “What is Your Love Language?” It said my love language was words of affirmation.

Before my husband’s illness he would tell me I was beautiful, and he would often call me ‘his favorite wife.’ It became a standing source of teasing between us, because my reply would always be, ‘How many wives do you have?’ My husband was always good about giving loving cards on special occasions also. So much of that verbal affirmation is gone now. My husband’s speech is so poor that basic communication between us is difficult. I miss also the basic bouncing of ideas between us.

Yesterday at my husband’s suggestion we went out to eat. He so seldom wants to go anywhere let along suggest it, so I readily agreed. It was very windy, however, and so we took the wheelchair. By the time I had wrestled the wheelchair in and out of the trunk of the car, gone through the buffet line for my husband and then for myself, and then basically carried on a conversation with myself during lunch; I began to wonder if it was worth it. As I said, I miss the verbal exchange.

A day or so ago I read a devotional in my caregiving devotional book about the importance of God’s affirmation of His love for and delight in His children. Knowing this is a source of comfort to me more than knowing what I do in my caregiving role has a purpose and meaning. I need to feel affirmed as me not as my role as a caregiver.  Just this morning I received a card from a younger woman in our church. In this card were some affirming and encouraging words to me. That was just what I needed to hear today.”

Dear Christian caregiver, the world may not recognize what you do. Your loved one for whom you care may not always be able to recognize and acknowledge what you do. God, however, does see what you do for your loved one. You are doing noble work, dear caregiver. God also delights in you and loves you just as you are! (Check out Zephaniah 3:17 in the Old Testament of the Bible!)
　

Conflicting Emotions and Blessings

I journaled the following words in early June of 2010 about seven months before my husband’s death:

“My heart is filled with so many conflicting emotions tonight. I still feel burdened by the fact that I know we have taken another step backwards in my husband’s disease. Just the fact that I have to help him every time he goes to the bathroom so we don’t endanger him of falling and that I am now helping him into bed means we are taking another step backwards.

It also means I have to get up in the middle of the night, if he has to use the bathroom. It means more fatigue for me. It further means I can’t leave him for as long of time during the daytime. This is discouraging to me. I so tire of the adjustments to new changes and seeking new solutions. Sometimes I wonder how long it will be before I can no longer take care of him-Years? Months?

I also have so many blessings all around me, however. As I am writing this I can hear the twitter of birds outside my window. I am blessed each day by the perennials around our new home which have been coming out one at a time. Since I don’t know the names of a lot of the flowers, it has been a joy seeing new beautiful flowers popping out. It is like little gifts from God assuring me of His love. He also assures me in the Bible that He will always be with me.

I was blessed the other day with my sister-in-law taking my husband out for a drive and giving me some alone time at home. I was blessed today in church. I am blessed with the fact that we will be getting some in-home therapy for my husband scheduled to start tomorrow.

Lord, help me just to trust, just to rest, just to release. Help me not to worry so much about the ending of the story, for it ultimately will be good. Help me to enjoy and revel in the daily blessings even in the midst of hard times.”

Dear caregiver, the challenges of caregiving for a loved one can be so very emotionally, physically, and even spiritually challenging. The heartaches of the declines in their health over which you have no ultimate control is so discouraging. (The last few months of my husband’s life before his death his health deteriorated even further so that we had to use a lift to get him to the bathroom and into bed.)

Remember, however, dear caregiver, that the Lord is with you each step of the way. Also in the midst of the heartaches look for the wonders and blessings. They are always there, and it will help you get through the pain of the tough times.

　

　

A Helpful Caregiving DVD

A few months after my husband’s death I began volunteering at a place called “the Gathering Place” which is a social program for people with beginning to moderate Alzheimer’s disease. My husband had a neurological disease also, but it was of an entirely different nature than Alzheimer’s disease. My husband’s disease caused eventual total physical disability whereas Alzheimer’s disease leads to memory loss and dementia.

In spite of this fact, working at the Gathering Place has given me a connection with my past. It has been said that once one has been a caregiver he or she is always a caregiver. Perhaps that is true at least in my case.
　
In any event recently at one of our volunteer meetings before the participants arrived at the Gathering Place an excellent DV was mentioned called “The Senior Gems.” This is put out by a group called Senior Helpers. I ordered this DVD and watched it.

This DVD is a guide for family members in supporting their loved ones with Alzheimer’s and other forms of dementia. Teepa Snow, an expert on this subject, is the speaker. The DVD explores what the various part of our brain do, and the effects of them no longer functioning properly. She also talks about stages of dementia and the behaviors associated with these stages. Finally, she talks about techniques that make a difference when working with someone who has dementia. Through this all she says we need to think of people with dementia as gems which need a special environment.

Anyone who wants one of these can have ONE few complimentary DVD. It can be ordered at
http://www.seniorhelpers.com/SeniorGems  It is an excellent DVD. It can be easily listened to in one sitting, but also can be broken up into chapters. If you are a family caregiver who takes care of a loved one with dementia, perhaps you would like to order this DVD and watch it. I think you will find it very helpful. http://www.seniorhelpers.com/SeniorGems

Adjusting to New “Normals”

As I have mentioned several times in previous blog posts, my husband had a devastating neurological disease called Multiple Systems Atrophy type c. He was initially diagnosed with this in April of 2006, and a more definite diagnosis was given of this in the summer/fall of 2006 at Mayo Clinic.

For awhile my husband continued to work. In fact, he probably continued to work longer than was really safe. The declines continued to come, however. After quitting work he gradually went from a cane to a walker and finally to a wheel chair. I was looking over some of my journal posts in May of 2009 and May of 2010. In May of 2009 I was lamenting the fact that he needed to graduate to a wheelchair. In May of 2010 I was lamenting the fact that he needed to begin to have assistance getting into bed. Just a few months later I needed to use a lift to make transfers with him.

When my husband began needing assistance into bed at night I wrote the following: “We are adjusting to working together to get him in bed in the evening. That is not the most difficult part. The most difficult part is adjusting to a new “normal.” It is realizing that we are taking another step back.” It was also difficult having to prompt my husband each step of the way when making transfers. It seemed as if the brain was having a problem conveying the message to his body to take the next action.

Each step backwards was so difficult emotionally. Sometimes I felt emotionally at the end of my rope. I hated what the future likely held for my husband and I in regards to the progression of his disease. I hated the adjusting to new norms which were rapidly and constantly downward. Sometimes I feared what the future held. We were dealing with a terrible disease. When I was afraid or angry or discouraged, however, I tried to remember that the Lord held my future. I know I was guided step by step.

My husband entered his eternal home on January 2, 2011. He is free from his disease. I miss him so much, but I know who still holds my future. Dear Christian caregiver, trust that God holds the future of you and your loved one also. The way ahead may be difficult, but He will be with you step by step.

Simply an Instrument

This is going to be a bit of an unusual blog post today. Today a friend of mine who lives in another state is burying her husband. My friend’s husband had the same illness as my husband, Wayne. My husband passed away from this disease on January 2, 2011. The disease is a rare and devastating neurological disease called multiple systems atrophy.

My heart is hurting for my friend today. Will you please pray for her today and not only today but in the many days and months ahead? She is not only a friend whose husband had the same disease as my husband, but she also often came to this blog site for encouragement. Hence, she was a fellow caregiver with all of you other caregivers who come to this site.

If my friend is like me, she may go through a period of dwelling on the “if onlys.” If only I had been more patient, or if only I had you fill in the blank. She also may dwell on the “should haves.” It is easy to feel like you were not enough after the death of a loved one. This is especially true if you were his or her caregiver. My friend needs to reject these feelings, however, even though they are often a normal part of the grief process. These feelings are not based on truth.

Caregivers while they are still caregivers will also often tend to have these feelings. I know I did. Yes, if there is medical help available that can help your loved one; you need to pursue it. In the end, however, God is in control. He determines whether your loved one will get well again, or whether He takes them home to heaven.

As a caregiver you are less than perfect. You may experience moments of weakness and impatience. Know, however, dear Christian caregiver, that you are enough. You are enough because the Lord lives in you. You are simply an instrument in the hands of God in caring for your loved one. He is in control.
　
　

　
　　　
　
　　

Pruning

In recognition of Mother’s day I received two dozen roses of multiple colors from my son who lives in London. When we receive cut flowers we are told to cut an inch or so off the bottom of the stems and then put it in water with some plant food added. It is also a good idea to take off the outer petals.

The flowers I received were shipped to me from a city and state that is over 2,000 miles away from where I live. They were packed well, but when they arrived they were a little less than fresh looking. After being in water all night they looked better the next day. Sunday morning a lady in my church told me, however, to cut the stems off on the end once again and to also put fresh plant food in the vase. They look very beautiful now.

This process of cutting the stems off the ends of cut flowers has never logically made sense to me. Neither has it ever made sense to me to cut vines and other plants way back. Pruning of vines is an even more drastic cutting back process than just cutting off the ends of the stems of cut flowers. In fact, when completed the vine branch can appear to be dead. This pruning is a necessary and a good thing to do, however. In fact, because the branch is attached to the vine; it can grow to be productive, new, and beautiful once again.

This is true also about the cutting or hurtful aspects and experiences of life. Caregiving can often become very challenging and overwhelming. It can be discouraging and hurt us emotionally at times, as we see our loved ones deteriorate in their health. Just as we may wonder why it is necessary for a plant to be cut way back, it often is puzzling to understand why we have to undergo the painfully cutting experiences of life.

Yet during my very difficult caregiving years and during my grief since my husband’s death a little over 16 months ago I know the Lord has been shaping my character and drawing me closer to him. He is also cutting away attitudes and fears that are not appropriate and making me more dependent on Him. Like the roses and like a branch on a vine which has been cut back, I can grow into something beautiful and productive because of this pruning in my life.  Just as my roses needed plant food I also have to feed on God's Word, however, for this to take place in my life.

The branch on the vine cannot grow into something beautiful again, however, unless it is attached to the vine. So also I cannot grow into something beautiful unless I am attached to the Vine, the Lord Jesus. This is spoken of in John 15 in the Bible.

Dear Christian caregiver, the pruning that takes place in the difficult moments of caregiving and in life in general hurts. It is okay to acknowledge that it hurts. You are not alone, however, if you are attached to the Living Vine, Jesus Christ. You will be okay. Not only will you be okay, but you will flourish. Remind yourself of this when the dark moments sometimes come.
　


　
　
　
　
　　
　
　　
　
　

The Folly of Worry and Trying to Control

As a caregiver I remember sometimes thinking about the future and worrying about the progression of my husband’s terminal disease. I remember worrying about how I would take care of my husband after he became completely disabled. As it turned out the last months of my husband’s life especially did become very difficult, but the Lord also provided for those circumstances.

During the course of my husband’s disease in addition to worrying I felt very much that what I did or did not do would influence the speed with which the disease would progress. I think I subconsciously felt as if I had some control in my husband’s disease.

God, however wants us to trust Him enough to let life’s events unfold without striving to control or predict them. He wants us to relax in His unfailing love. When we try to predict or control the future in any way we are trying to be self-sufficient. God wants us to rely on Him alone.

Caregivers are loving and strong advocates for their loved ones. They often have to be. They also need to be responsible in providing any medical help possible for their loved ones. One thing caregivers must remember, however, is that in the end they cannot control the progression of their loved one’s disease. Only God can control this. Caregivers anxiously wringing their hands trying to control the uncontrollable can result in a losing out on the time they do have with their loved ones.

The better alternative to worrying about the future and trying to control the future is to live in the present moment depending fully on the Lord God. When I think back on my caregiving days I remember this was so difficult to do. Worrying and trying to control, however, leaves us fearing our own inadequacy. I remember those feelings also, dear caregiver. Instead in all of life’s struggles we need to rejoice in God’s abundant supply of strength which He gives us for each difficult situation as it arises.

Dear Christian caregiver, do not divide your life into things you think you can handle by yourself and things for which you need God’s help. The truth is you need help for it all. Rely on Him for every caregiving situation. Doing so will help you face each caregiving day with confidence.

He Will Equip You

Dear caregiver, have you ever said to yourself, “I can not do this any longer! Why has God laid on me the task of caregiving? Who am to be asked to do this job? I am not equipped to do this job.” As a former caregiver for my husband with a terminal disease I remember thinking these things from time to time during my caregiving days.

In an Old Testament book in the Bible God assigned a man named Moses an important task. It was an important task, but it was also an overwhelmingly daunting task and would be a huge undertaking for Moses. Hence, Moses was understandably afraid. (Read about it in Exodus chapter three in the Bible.)

Moses begin to make excuses for not being able to do the job which God had given him to do. The first question that Moses asked God when God gave him his new assignment was "Who am I, that I should do this job?”

But Moses was asking the Lord the wrong question. Moses should not have asked, "Who am I?" The real question should have been "Who is God?" Moses should not have been focusing on his own inadequacies, but he should have been focusing on the power of the Lord to help him. Moses should have been focusing on the faithfulness of the great God who had been faithful to His people in the past and who had promised to be with them in the future. Even though Moses continued to make excuses for awhile ultimately Moses obeyed God, and God used him in mighty ways

Caregiving has to be one of life’s most challenging tasks. Dear Caregiver, know, however that God is a faithful and dependable God. Completely trust in Him to always be with you and strengthen you. God is not just a God of glory and power. He is a faithful God who completely gives Himself to you. As God was with Moses in the past in the frightening and overwhelming task He assigned him, He will continue to be with you also in the sometimes overwhelming challenges of caregiving.

God has assigned you the task of caregiving, dear Christian caregiver. Because He has assigned you this task, He will also equip you. He will give you His strength as long as you need it. Our strength has nothing to do with ourselves. Our strength is wholly dependent on the Lord and His faithfulness. We must learn the secret of bringing our burdens to the Lord and leaving them there. God says that He will be with us wherever He asks us to go and in whatever He asks us to do. Trust Him and lean heavily on Him, dear caregiver!

　

The Longing for Past Days

Dear caregiver, do you ever long for your life as you experienced it before your current caregiving days? Do you wish you could go back to those days? In April of 2009 I journaled the following words:

“I went to a musical program with a friend last night. It was very enjoyable with lots of nice variety. There had been some frustrating moments at our house on Friday and Saturday, so it was so nice to get away with a friend. I also love music. So that was an extra treat.

I enjoyed the program last night very much, but it did bring back memories of going to musical programs with my husband at this same building in the past. Now because of his disease my husband is too tired to go to many places, or he is too unmotivated. Sometimes the logistics are too difficult. Even though I enjoyed going with a friend, I do miss those days when my husband and I enjoyed doing those things together. Sometimes I go places like church alone too. There is a certain loneliness in that. It makes me feel a bit like a widow already especially when I see couples together seemingly happy and healthy. This is my path now, however, and there is a divine purpose in it all.”

There were many lonely moments as a caregiver. My loneliness has increased since the death of my husband. Dear Christian Caregiver, you may have experienced similar feelings of loneliness. Know with certainty, however, that the Lord will always be with you. He will guide you through the challenges and heartaches of caregiving. His presence also will be your joy and peace in the loneliness. Even on days when you can not feel His presence know that He is there.
　
　

　

Waiting

Recently a caregiver on a caregiving site online wrote about her frustrations with always feeling that she had to wait. She talked about waiting for a doctor’s office to call her back and waiting for lab results concerning her loved one. She talked about waiting for the next step. She talked about waiting for her loved one to get sicker and her eventual death. She also talked about waiting for a cure for her loved one’s illness and wanting to wait for something good to happen but seeming to only think of the reality of her loved one’s illness and not the miraculous.

She further talked about waiting for appreciation for all the things she does in her caregiving role and waiting for life to be normal again when she knows it never will be.

She said she feels like she is always waiting for something but doesn’t know what. She also talked about her life consisting of waiting, potentially life and death decisions, and the pressure of knowing that she holds somebody’s life in her hands by the decisions that she makes. Finally, she talked about waiting on God to show her how to fulfill her purpose.

Looking back on my caregiving days I can so identify with many of her emotions.
We all would like to get better at waiting, because we do not feel that we do a very good job of waiting.

Recently I read a devotional on waiting which I thought was so applicable. The devotional pointed out that productive waiting involves waiting on God and directing our attention to Him in anticipation of what He will do. It involves trusting Him with every fiber of our being. It involves staying conscious of Him, as we go about our daily activities. It involves total dependence on Him realizing we cannot do it on our own.

I too so remember those stressful caregiving days when I was caring for my husband. I so remember the heartache of all the declines and the dread of how I was going to handle the future declines. The truth is that God was with me every step of the way. I see that in an even more focused way, as I look back on those days.

I think all the struggles (and waiting is part of those struggles) makes us stronger people. It helps to shape our characters. But this kind of character building is so painful, isn’t it? In the struggles of my personal life the last few years I have often thought, “I can do with a little less character building now, Lord.” You may have thought the same thing, dear caregiver, but there is a purpose in all this. It will also shape your future life.

Dear Christian caregiver, as my recent devotional went on to say God does give blessings to those who wait on Him in the measure that they wait on Him. He gives renewed strength, hope, and an awareness of His continual presence. I fell so far short of resting in Him during my caregiving years. I often let stress and anxiety come to the surface. Knowing He was in control, however, helped me through those days. Rest in Him, dear caregiver. Wait on Him.

The Caregiver and God’s Presence

When I was in the midst of caregiving for my husband I found great comfort in getting up early in the morning before my husband awakened and spending time in reading the Bible, reading caregiver devotionals, and spending time in prayer.

This time in the morning helped to remind me that my Lord was with me and present with me in my life each step of the way. Even now I find my morning devotional time so important to my emotional and spiritual well-being.

As I encountered the challenges of caring for my husband sometimes it was easy to get bogged down emotionally, however. This was especially true near the end of his disease when my husband could no longer help with transfers. It was easy in such moments to forget that God had promised in His Word to always be with me. It was easy to forget about His presence right beside me.

There is a story in the Bible in Luke 24 about two men who were walking along the road. Jesus had just risen from the grave, but these men did not believe that the happy resurrection event had occurred. As they were walking Jesus came along beside them and started talking with them. Later they sat down to a meal and began to eat with this “stranger” that they had met on the road. The Lord was right with them, but they did not recognize Him or His presence. Only later did their spiritual eyes open, and they recognized Jesus.

The same is true for us. The Lord God is right there with us, and so often we do not recognize His presence. As a caregiver the Lord was with me each step of the way. I can look back and see that with absolute certainty. Yet in the moment of caregiving there were times when it was difficult to see that.

Sometimes we are disappointed and feel overwhelmed when life does not go the way we hoped it would. I very much would have liked to have spent many years in happy retirement with my husband. Instead my husband was diagnosed with a terrible disease, and I was thrust into the difficult role as his caregiver. It is easy at times like these to forget the Lord God’s presence is right with us all the time. Sometimes we are so sad that we do not feel His presence or see His presence with our spiritual eyes.

That does not negate the truth that the Lord is always with us. I believe the Lord is especially with the caregiver who turns to Him and relies on Him. Dear Caregiver, don’t miss the Lord’s presence right beside you. Pray that God will open your spiritual eyes so you can see and feel His presence.