For the last two weeks I have tried to give you a different perspective of a caregiver. The first was through the eyes of an ill spouse as he spoke of his wife who was his caregiver. The second was through the eyes of a daughter growing up with a chronically ill father. She related how she perceived her mother through her formative years. Both shared their feelings and insights through nominations for a caregiver award. This last testimonial is by a well spouse herself, as she accepts a care-giving award. She said, “Before my surgery, I walked through the hospital and ran into two clergymen I knew. Clergymen, pastors. They stopped me and asked if my husband was in the hospital again. ‘No’ I said. ‘ I am here for me.’ ‘Oh. Thank G-d!’ they said. Invisible. “A family of four attended Sabbath services at the same well-populated house of worship for many weeks. One Sabbath, the wheelchair bound father/husband decided not to go with the family. The wife and children attended without him. They were welcome as new visitors. Invisible. “Recently my husband and I attended a celebration. The host greeted us at the door. He took my husband’s coat and left me standing there with mine. Invisible. “Well spouses, the husbands and wives of the chronically ill, are a large group. Conservative estimates place their number at over ten-million. That is an awfully large number of people to be invisible. “Well spouses, it seems, have much in common. This makes them a unique and defined group. They have similar experiences and concerns; they exhibit common symptoms and fears. They share broken dreams and pain. They deal with the same worries and problems. Most of all they share a non-existence in relation to the world at large. “I am grateful to the society for my nomination for this award because it gives recognition to spouses. It says, we do exist. It helps to take away the sense of invisibility which surrounds us. We are a group in great need of support, and before one can get support, one’s existence must be acknowledged. “When I received notice of my nomination for this award, I had very mixed feelings. I am not a ‘traditional’ caregiver. I believe in making my spouse as independent as is physically possible. I also aim to have our family function as normally (whatever we can understand that to mean) as possible. My goal is for us to be able to learn and rely on each other. We must be able to depend on and demand access to each other’s strengths. “Caregivers, as individuals, face difficult choices. Some of us stay in a marriage and do all we can for our spouse’s comfort and assistance. Some choose to stay and do a limited amount or as little as is absolutely necessary, feeling that the best course is fostering independence. Some choose to leave their spouses, feeling a need to do so based on their own unique circumstances. Some, at one point or another, choose a care facility as their way of coping with the situation. “Whatever the choice, it is taken with immense caring, pain, love and concern for the welfare of all the loved ones involved. The choices are not easily made. They are also not for anyone else to judge. “The …Society has considered people for this award who have chosen different paths. The choice of those considered indicates and reinforces a non-judgmental attitude towards our very complex and onerous choices. For that I am most grateful. “I’d also like to thank the society for helping give birth to our well-spouse support group. The understanding, warm, caring and sensitive support of my fellow caregivers have helped me through many difficult and trying times. “Lastly, I want to thank my husband who has pushed himself the extra mile and learned over our 27 years together to be my caregiver.” Several things struck me by this powerful speech. I felt I was listening to a woman who had been judged and damned by those around her who knew nothing of her life or experiences. She confirmed this when I spoke to her. She felt that if she could get one message across it would be not to judge that which you do not understand. Whether caregivers stay or leave or do something in the middle, no one has a right to judge them. What they need is support for however they decide to cope with this challenge they face. Support and help, not judgement and invisibility.
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