Today's post from paincommunity.org (see link below) is a very useful article describing how difficult it can be to be a care giver for someone living with chronic pain. As many of you will know, neuropathy pain can reduce the quality of someone's life dramatically but not only the patient suffers. Their family and friends and the person who has had the responsibility of primary care thrust upon him or her, has to learn to adapt to a whole new relationship scenario and that can be very difficult indeed. Via the writer's own personal experiences, this article sums up the main problems and gives some hints as to how to learn to cope. Certainly worth a read if you're in that position, either as patient or carer.
Posted by Jim Stemple | March 19, 2014
As a caregiver to a very special lady for the last 20+ years I have learned it is ok to be angry and frustrated. This understanding did not come overnight.
Here is what I learned.
1: Chronic pain comes along and turns the lives of everyone involved upside down. Everything you knew is no more. Your life isn’t your life anymore, it is now a life filled with uncertain days and nights. You see the pain doesn’t only affect the person living with pain, it affects all those around them. It affects the whole household and those close to them outside the home. I may not live with chronic pain myself but I do live with someone who does and I am affected on so many different levels.
All the plans you had made for the future are put on hold or forgotten about. You find that each day life can and does throw something new at you and your loved one. It can be breakthrough pain, it can be a new health issue, insurance problems, finding a provider or just plain old frustration that threatens to blow the top of your head off.
The stress of not being able to know from day to day what the pain is going to decide to do to your loved one is over-whelming some days. As a caregiver you constantly worry what each day will bring.
2: Sometimes the one who is living with pain doesn’t realize how much it affects those around them. You see they are so consumed with trying to deal with the pain each day that sometimes they forget about the ones around them. The one living with pain will feel as if their partner/ caregiver doesn’t care enough, is angry at them or doesn’t believe that they “really have pain”.
But you know, it isn’t that at all. We, as caregivers, are pulled in so many directions that sometimes we think our heads may spin off of our necks. We do not know if we are coming or going—I know that I have felt that way.
3: For many partners/caregivers the financial stability of the family is always on your mind. For some families you lose the 2nd income that you were dependent on when your loved one is no longer able to work due to the pain. This can and does cause much discomfort and friction within the family. You don’t lay the blame on your loved one because they are unable to work but you cannot help but to feel frustrated at what the pain has done to your family and your dreams.
So what is the secret to success?
Over the years I have found that the most important thing is to communicate. It is ok for the caregiver to lose it once in a while. It is ok to be angry, sad, frustrated and overwhelmed. Share what you are feeling with your family or loved one. Let them know that you aren’t feeling all these things because of them, you are feeling all of this because of the situation—the pain and what it has done to the family and the one for whom you care so deeply.
Communicate with each other.
It is a two-way street. Share those feelings rather than holding on to the frustration, fear and anger. You are borrowing trouble that you nor your loved ones need, if you do not remain open. Holding in those nasty feelings may come back and haunt you– one day you are going to blow and it is not going to be pretty. Don’t wait until the fuse is lit because then things are said that hurt your loved one. Things that cannot be taken back no matter how much you wish you could.
I have been guilty of opening my mouth in frustration and saying some very hurtful things to her. Things that I didn’t mean and things that I wish I could take back more than anything. I am thankful because she knows that it is the anger and frustration talking and she can and does let my slips of hurtful words roll on by her and doesn’t dwell on them.
Trust me, we were not always like that but over the years we have learned to understand that the pain can make each of we say things that we truly don’t mean. We have learned that the pain is a vixen waiting for the right moment to spring forward and turn our lives in to a “he said, she said” fight of the century.
As a caregiver, I have found times where I feel torn between providing for the family and being there when I am needed. This push and pull really sucks! My job consists of taking me out of state each week. There are Mondays that I want nothing more than to stay at home and comfort her. Yet, I know that this will not happen, as I must be the provider which means leaving her and heading out to work. It doesn’t matter how much pain she is in. I have to leave her and go to work.
Yes, there are times she gets angry at me as she wants me there with her. It isn’t that I can really do anything to make the pain better. It is just knowing that she isn’t alone. I understand that but I am helpless to do anything about it. Even though she gets upset, I know she understands that if I could, I would never leave her alone.
As a caregiver, don’t you feel pulled and pushed in a hundred different directions at the same time? Do you find yourself angry, sad and frustrated because you want nothing more than to help your loved one? Would you take the pain from them in a heartbeat? I know I would. After all, I feel it was my job to protect her and help make her life a fairy tale come true.
The pain changes all that but remember even though you are angry, sad and frustrated you can make the world of difference for your loved one by just being there for them. You can make a difference by just listening, by holding their hand or giving a gentle hug when they need it the most.
Help find the humor in this world of pain and share it with them. You will be surprised how much laughter can help both of you. My special gal tells people all the time that if she had a penny for every time I have made her laugh we would be millionaires. That makes me smile.
Here is the pearl:
Remember the pain affects the whole family unit and it is up to everyone in that unit to make the best of the situation. Sure, you can choose to be miserable, depressed and find yourselves fighting all the time. A better option is to choose to communicate with each other and find the love, laughter and the ability to still see all that is good in your lives. Live the life that you want to live and refuse to let the pain destroy what means the world to you.
http://paincommunity.org/angry-sad-frustrated-unspoken-feelings-caregiver/
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