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Managing The Stress ~ Making The Decisions ~ Discovering The Meaning |
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Caregiving |
Solutions To Your Caregiving Situations Throughout Your Caregiving Years |
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Medical Decisions: Your Story Keeping Mom comfortable (Editor’s Note: A member of our of online support groups shared her experience in deciding not to pursue chemotherapy or radiation treatment after her mother was diagnosed with uterine cancer. We asked the family caregiver, Nancy, to share her story with you. What follows are our questions and her answers.) Caregiving: Tell us about you mom. How old is she? How long have you cared for you? How do you help her? Nancy: My mom, Edna, is 86 years old. I am in my fifth year of caring for her and her third year of living in my home. She first started getting forgetful gradually when she lived at her home after my dad died. Then she fell one day and broke her wrist. I realized then she had the symptoms of cancer. After much bargaining and traveling back and forth to her house, she finally agreed to come and stay with me. I took her from where she had lived for over fifty years to my home in the neighboring county. I work full-time and am also raising my 7-year-old granddaughter, Heather. I have a wonderful sitter/aide who looks after all her needs while I work. I work for a school so on holidays and in the summer I care for her 24/7. Mom requires assistance with all activities of daily living except for eating (she can feed herself) and help her with dressing. She requires a walker to ambulate due to weakness and arthritis. She sometimes need help with getting up and down. Caregiving: Your mother was diagnosed with uterine cancer two years ago. You made the decision that she should not have radiation or chemotherapy. How did you come to that decision? Did you involve your mother in the decision? Nancy: When her cancer was diagnosed she was already so anemic it just added to her confusion. She wasn't really able to make decisions on her own. I had a hard time getting her to the doctor much less to the hospital. After her hysterectomy, her doctors and I decided that since the cancer had not penetrated the wall of the uterus, we would not go ahead with chemotherapy or radiation. To put an already very confused then-84-year-old woman through weeks of travel and much more discomfort from chemo just was not justified, and that does not take into account the risks of radiation that could add to her discomfort. Also if the cancer returned she would have gone through all that for nothing. So I brought her home and she recovered beautifully. As far as we know the cancer has not returned and she has been pain free. Her confusion continues. Caregiving: How do other members of the family feel about this decision? Nancy: My brother rarely comes to see or call my mom so I didn't involve him in my decision. My daughters were respectful enough to support whatever I decided to do. Caregiving: We often worry about making the right decision for an aging relative, especially when it involves their medical care. Sometimes we believe we can "make it better" when often we just make it worse. You seem very comfortable in your belief that your role is to make your mother comfortable and to love her. How were you able to come to terms with this thought process? Nancy: I believe as a person ages, becomes confused and isn't experiencing quality of life for different reasons, that they shouldn't have to be put through tests, x-rays, try out new medicines or other heroic measures just to ease our conscious or satisfy other family members or just to risk not being judged. I think meeting my mom's personal needs adequately, offering nutritious foods and supplements, giving only necessary medications, and giving her as much love as possible is what will give her the best quality of life. I treat symptoms as they come. Of course I would never let her suffer pain or keep her from needed treatment. My dad had to live and die in a nursing home and I promised my mom then I would try never to put her in one. He had no quality of life there. Everyone's circumstance is different but this has worked well for me and my mom so far. Being a nurse doesn't make having to make decisions any easier when it's your own family. Caregiving: Have you spoken to your mother about her death? How she would like to die? What type of service (funeral, wake, memorial) she would like to have? Do you feel that you are both prepared for her death? Nancy: Mother and Dad planned their place of burial and paid for it a long time before my dad got sick. Her funeral will be exactly like my dad's. She always said she never wanted to die by herself. My Mom is a Christian and therefore I can face her death with the peace of knowing where her spirit will be and the knowledge that I loved and kept her as comfortable as I could until the end. Caregiving: What are your current struggles as a family caregiver? What steps are you taking to overcome them? Nancy: My physical struggle is picking her up when she falls for there is no one else here to help me. The other is loss of sleep; I am up with her and listening out for her, especially since she started having mini strokes. My biggest struggle is emotional, as I think it is with most caregivers. It hurts to see Mom this way but I also grieve for my freedom even though I don't want her anywhere else. My granddaughter is always wanting to go somewhere and I miss church and spending time with my other grandchildren terribly. I miss going out somewhere besides Wal-Mart, the drug store and grocery store. One way I am trying to overcome my feelings is to swap out Heather for another grandchild so I can spend more time with them, and I'm thinking about having some of my single friends from church over for a Bible study and fellowship. Also sending a card to other caretakers or shut-ins helps. Caregiving: As you reflect on your role as family caregiver, of what are you most proud? What inspirations, encouragement can you offer to other family caregivers to "keep the faith". Nancy: The thing that I'm most proud of as a caregiver is that I am able to have Mom in my home and not a nursing home. Having Dad in one could not have been helped but Mom won't have to unless something unforeseen happens. The best encouragement I can give anyone is to give all your hurt, anger, depression, and stress to God. Without my faith I would be lost. Also, no one understands better than God and another caregiver. I am unable to get to a local support group but I have one here at my computer at caregiving.com. I can vent all I want to and not worry about getting on their nerves. We laugh and cry together and get wonderful advice and most of all SUPPORT! |
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