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.