The following is a guest post by Judy Brutz :
My husband has glioblastoma multiforme, an incurable form of brain cancer. Ted Kennedy died from it. The early challenges I am experiencing as a caregiver are disbelief, feeling overwhelmed, trying to define my role as caregiver, maneuvering a change in my marital relationship, recognizing the need for financial and legal planning, and caring for myself.
Disbelief. It is difficult for me to stay focused. It is hard to grasp what is going on. There are a few facts that I hold onto. My husbands’ symptoms developed rapidly during a four week interval. From being able to speak normally, he started searching for words, and then progressing to not remembering the names of objects, substituting words and phrases which didn’t make sense, to not being able to spell. He had an emergency MRI, which showed a large mass over his left temporal lobe. A rushed appointment for brain surgery was made in the next state. I was told that he would not be expected to live more than one or two years even with the tumor removed and aggressive treatment undertaken.
Overwhelmed. Initially I felt completely overwhelmed, like I didn’t know whether I was coming or going. Ten days after surgery, I am going in and out of feeling overwhelmed. I realize that I’m not attentive to my surroundings, as though I’m zoned out somewhere. My center of my chest hurts. I know this to be a major sign of stress. Also my breathing is shallow. I must tell myself to breathe.
Caregiver Role. I’m abruptly being thrust into the role of caregiver, and I’m trying to figure out what this means practically. My husband’s expressive language limitations cause major problems in communication and in joint decision making. I need help in defining my role. Hopefully, when we go to the Cancer Center, the social worker will help educate me.
Marital Relationship. I’m having to take over decision making and financial management. My husband needs reminders and direction. We are both distressed. Both of us become frustrated and irritable with each other. He says things to push my buttons, and I react. I’m on a sharp learning curve. I need a support group and will go to a meeting this coming week. I also need personal counseling, and my appointment is made.
Financial and Legal Planning. I need to make sure that our affairs are in order. My husband had this role before his surgery. I’m discovering that our papers are in disorder. He may have allowed his life insurance, naming me as beneficiary, to lapse. I will go to a lawyer even though my husband does not want me to, nor does he want me to spend our money on legal fees. I feel conflicted in going ahead without our discussing and agreeing to a plan, but this is the new reality of our relationship and my role as caregiver.
Self Care. It is critical that I take exceptionally good care of myself. I have my own health issues and must not get run down or stressed. Otherwise, I will rapidly decline and then both of us would need caregivers.
Judy Brutz is author, spiritual director, retreat leader and speaker. She lives in Idaho with her family, and enjoys nature, knitting for peace, and volunteering. http://judybrutz.net
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We wish Judy all the best on the difficult road ahead. Do you share any of these issues? Are there any coping strategies which have helped you?