Caregiver Perspective: Finding the Will to Live

Let me start by saying that I’m not a psychiatrist nor a licensed counselor so what I say is based on my own experiences in talking to others with disabilities, my own experience with family members, and my personal beliefs. Therefore, you may or may not agree with me and that’s fine, because this is a very delicate topic and one which creates a lot of emotion in people.

When a person has a chronic health condition that cannot be cured, depression is very common. When the condition also affects the neurological center of the brain, the likelihood of depression is even greater since the natural chemical reactions that would typically help the person stay balanced, may be impaired. Therefore, for people with secondary or progressive MS, depression is common and often a struggle.

Loss of Direction or Purpose:

Though MS can affect children and teenagers, it most often affects adults. Once we reach adulthood, we have created in our minds our vision of what our life will be. We’ve thought about getting married, having children, getting a job or establishing a career. Maybe we have bought a home and have a car(s) so we have debt. We may have gone through years of school or training and “paid our dues” ready to launch into the rewards of our efforts and then something like MS hits. Maybe it’s been there lurking just under the surface with some minor annoyances like in Lynn’s case or maybe it hits with a vengeance and an immediate loss occurs that may or may not be permanent. When that happens, the breaks are put on and both the person with MS and their caregiver slam into a wall.

In addition to trying to cope with the changes that occur from the loss of a function, there is also the loss of the dream. Lynn was a musician, an awesome tenor, and an extremely talented carpenter and builder. He could do so much but most of it required physical labor and dexterity. Over the course of 2-3 years, Lynn’s MS rapidly progressed. His doctor could never quite say if he had Secondary Progressive MS (SPMS) or Relapsing Remitting (RRMS) but I think he felt it was Secondary, and we hoped for RRMS because let’s face it, there is nothing out there if you have SPMS or Primary Progressive (PPMS). Lynn was seeing the doctor every three months, and each time his abilities (other than his mind) were a little slower than before. Over 18-months, he lost his job and his ability to play musical instruments or to hold a musical note for an extended time.

He lost his identity…his purpose…his planned direction for his life. He was the man of the house, the protector who could not protect but instead needed protection. He was the builder, the fixer who suddenly needed all things done for him. He would try to explain to others what to do and became frustrated because it would have been so easy for him to do it himself…before. Over and over again, he would say, “What good am I anymore?” “What am I supposed to do now?” He was angry. He was scared. He felt bad. He could see no purpose for his life. He was depressed.

Unwelcome Changes

While he struggled with, “What am I supposed to do now?” I struggled with, “How can I do it all?” I was counting on him to build our new house, bring in a good income, help me keep up with three children, protect us, fix things, maintain the house and car and yard, and so much more that now was MY responsibility. And, I didn’t want to do it. I was angry. I was scared. I was tired. I was overwhelmed. I was depressed.

Learning to Live Differently

We set about learning to live with his disability. What worked before did not work now so we had to get creative in how we accomplished the tasks of daily living. I had so much to learn that he used to do. He had to learn patience and how to tell me what he needed. Our lives changed completely. I found new purpose in being his caregiver but he struggled to find any purpose. Fortunately, his son suggested he try to write fiction since he used to love to write when he was younger. He tried it and now has published two books, Rising Tide and Eden’s Wake. He gets up each day and “goes to work” either writing or marketing his books. It provides him with a purpose and a sense of accomplishment which is what I think is the most significant problem that needs to be fixed for most people suffering from depression. The person goes from having a purpose in life to not having one that they can identify.  Their job is gone, they can’t support their family, they cannot perform the usual roles of marriage or parenthood like they did before, roles that held significance for them before are now limited.  So they flounder in fear, sometimes self-pity, hopelessness, worthlessness, and all those other negative emotions. I think it’s that loss of purpose that makes so many think of suicide.

Pain and Suffering

In addition to the loss of purpose, there is often the pain and suffering of MS. The public doesn’t hear about the pain and suffering. They hear MS and think of difficulty walking. They don’t think about the constant fatigue that makes you want to just stop breathing due to the effort, the pain of muscle spasms and spasticity, the overall malaise and heavy feeling and something severe pain from nerve irritation. Pain and suffering that does not respond to treatment. Pain and suffering that seems never ending and which may very well be.

If this person was a prisoner of war and people heard of treatment being done to them in the same manner that someone suffers with MS, they would wonder how they go on with life. They would see suicide as a justifiable option. They might also see it as the only option.

Reason to Live

However, I hope if you have MS that you do not give up so quickly. This is the sensitive part. My faith keeps me from seeing suicide as a reasonable option. For me, committing suicide means giving up on God. It means that I don’t care about how my family would cope afterwards.

Ending the suffering…I get that. I hate hurting for a day much else months and years with no improvement…not much quality of life in that. But before giving up on life, I think it’s important to really look for a purpose. See a good counselor who can help you look at other options. Get a second opinion if your doctor can’t help reduce the suffering. Seek God’s arms to carry you when the going gets tough; to be your arms and legs, to give you purpose. Find a good doctor to help you try medication to restore the chemical balance.

Depression is horrible. It’s heavy. It takes up all your energy and breath. However, don’t just let it defeat you without a fight. Look for something new to do; search out a new interest; find something of interest to learn. Force yourself to be with others instead of shying away. Understand that depression is often a chemical imbalance that can be helped. Share your fears and concerns with others and let them help you carry your burden for a while.

Just don’t give up before you try to live.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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