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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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Caring for a step I feel satisfaction from knowing I do my best By Denise M. Brown Editor's Note: Peggy Walker helps her mother, Inez, care for Inez's second husband. Not only is Peggy a stepdaughter, but she is a stepmother to her second husband's two sons. Peggy has three daughters of her own. We asked Peggy about her experiences as a "secondary" caregiver to her stepfather; in essence, she is her mother's back-up. Here are her comments: Caregiving: How you become a "secondary" caregiver to your stepfather? How long have you been a caregiver? Did you mind taking on the role of caregiver or did you feel the decision was already made for you because no one else could do it? Has that ever made you feel trapped? Peggy: My stepfather was diagnosed with Alzheimer's and Parkinson's almost eight years ago. Prior to this time, my mother shared her fears with me about his actions and how he was handling things. His mother had dementia in her late years and she didn't even know my step-dad prior to her death. My stepfather had a fear of this happening to him, something that we all discussed. His main concern was for my mother to be taken care of. In trying to prepare ourselves for this, Mother and I worked together in many aspects of future care for him and also for her. This was particularly difficult for my mother as she had depended on him so completely. My role changed at this time to not only being a daughter but a friend and an adviser to my mother. Now it has evolved to almost being in the parent role for decision making for both my parents. This role of mine may be labeled as "behind the scenes" as I live almost two hours away from my parents and do not see them every day. But on a regular basis I do make many phone calls on their behalf. I made trips back and forth to visit as often as possible. I am often frustrated when handling their financial affairs, and talking to administrators, doctors and attorneys on their behalf--being the sounding board for them. Trying to make things run smooth is as important as checking in every day. During one visit to the nursing home with my mother, my stepdad was very upset and bothered. I began to ask him what was bothering him. He doesn't have the capability to communicate very much but at this particular time, he looked at me and told me he was afraid he was going to die. Knowing that this gentle, kind and Christian man knew he would be in a better place if he were to die, I asked him why he was afraid. After more questions, it became evident that he was afraid to leave my mother. After reassuring him that my mother would be taken care of, he relaxed and all was well. Needless to say, however, the emotions got to me. It is so hard to see your parents age. Caregiving: Do you believe the "step" relationship has impacted your ability to be a caregiver? Meaning did you feel his children or his relatives should take on more of the responsibility, not you? Peggy: My mother and stepfather were married when I was 11 years old so he raised me and my brother, who was 4 years younger than I was. This was his first marriage so there were no other children but my brother and myself. We did have many difficult strained times. It was only when I reached my adult years that I developed the loving, caring and respectful relationship I have with my stepfather. As an adult, I realized he had been the only father I would know and had always been there for me during my growing up years and in later years. He is a wonderful grandfather to my daughters and they have a deep love for him. One has named a son after him and the other (if she has a boy this year) will probably follow with one of his names. He was the only child in his family, so we are the only family he has, except for distant, aged cousins. I would fight a buzz saw for him and he knows it. The satisfaction I get is that he knows I will do what is necessary to take care of him in the proper way. I get a deep satisfaction in knowing that I am doing the "very best" I know to do. Caregiving: Have difficult emotions and situations arisen between you and your family because of your caregiving role? If so, how did you handle the situation? Were you able to resolve the situation? Peggy: One of the problems I have faced with my caregiving role (not only for my stepfather but also now for my 85-year-old mother) is my family. They want their grandparents taken care of and my husband knows I must do what I have to do for them and do it alone, but they worry that I take on more than I should and that I let things bother me too much. As one of my daughters remarked, "I want my mother, too". In the past, my caregiving had reached a "driving force" within me to make things "right and perfect" for both of them. It was an obsession for me to do so. Today, I try not to worry so much about them and try very hard not to let "the little things" bother me as much as they used to. There is no perfect solution to taking care of a loved one. We must try to handle the major problems and try not to solve every small problem. My main concern is for them to be as comfortable as possible; this is what I strive for. I also owe my children, husband and family a part of myself. I try not to feel any guilt in not being there. Mother is now in an independent living facility and I do not worry as much about her as before; she is in a good place and loves it. My stepdad is in the best facility we know of at this time and we are doing our best for him with his many problems. So I have a lot to be thankful for. Caregiving: What has been the most challenging aspect of your caregiving role? If you could, what would you change about our health care system or our communities to make caring for an aging relative easier? Peggy: I could write a book on the "lack of" health care in our society. It is unfortunate that our elderly are treated as they are. Not only in the hospitals and nursing homes but also in our society. My mother (who is very sharp mentally and young acting for her age) has no voice. People seem to turn a "deaf" ear to her because she is old. So her voice goes unnoticed so many times. This is where my role has come in. I have had to really make a stand and get on my "band box" about this. I have had to battle with so many people to take care of my loved ones. With my stepfather, there seems to be no dignity or respect in anyway. He is just an old man with no mind. People can't see his eyes "light up" when he sees a loved one. He has called me his sister, his wife, his cousin, his aunt, but he knows me and knows that I care for him. I see it in his eyes. He knows I am there for him. Our communities forget about the elderly and disabled. Our families avoid the elderly. They avoid them as they want to "remember them as they were". It is only through the grace of God that one of us is not in this unfortunate state of being. As I have said many times, one of these days it may be you and it may be me. I think education should be provided through our schools, church, and society to not only adults but also to children in helping and caring with the elderly. Something drastic needs to be done to take care of our elderly and give them some dignity in their old age. My stepfather fought in WW II for us in Germany. Don't we owe him and others something? Caregiving: What advice would you give to other "secondary" caregivers? What insights or wisdom have you gained that you would like to share with others? Peggy: First of all, when you are faced with taking care of a loved one, check into state and national resource agencies or organizations. Research what is available for your loved one before going off and spending a lot of money. These agencies are usually free and our tax dollars provide for these services. We just need to "ask for help". Someone before you has faced a similar problem and has written about it or has organized a group to help. We have found the agencies and organizations very helpful in trying to help and support. If your loved one is in a hospital, don't assume that they will be given the attention and care needed. Ask family members or friends to take turns in sitting up or checking in to make sure your loved one is cared for. Our hospitals are not what they used to be; a family member should not assume anything regarding proper care in our hospitals. Unfortunately, we must make it our responsibility to get good medical care in hospitals. If your loved one is in a nursing home, the same goes as if in a hospital. As it has been said before, visiting at unexpected times is always useful in knowing for sure what is going on. I have found that going to the "top" is sometimes the best and only way to take care of a bad situation. Unfortunately, so many of the aides do not have compassion for your loved ones. It is just a job. This does not mean that all are not caring people but there are many who have an attitude or just don't care about taking care of our loved ones. If at all possible, hire someone to help the daily caretaker in visiting, feeding, and looking in on a loved one. By the grace of God, we have found a wonderful couple who look in on my stepdad, feed him and care for him for a couple of hours a day. This has been so beneficial to my mother who cannot be out there every day. To us, this has been the best money we have had to spend on his care. We also have added a phone to my stepfather's room. He can't dial it but the couple who looks in on him will call my mother on the phone and he will talk to her. (Block long distance calls from this phone.) This has enabled him to have another form of contact and gives my mother some peace of mind that all is well. Most importantly, our couple began to keep a spiral notebook with the date of the visit and how he is, if he has been bathed and what has been discussed with the staff at the nursing home. I can go see him and read about what has been going on during the previous days. We keep the notebook in his drawer in the nursing home. I would imagine others read about him in this notebook, too, don't you? I feel a semi-private room in a hospital or nursing home is better than having your loved one in a room alone. Get acquainted with his roommate's family. They want what is best for their loved one, too. This helps to have that "extra" help when you are not there. We very much check on my stepfather's roommate and will ask for help for him when needed. We have placed poster signs on the walls of the hospital and the nursing home room above my stepfather's bed. For example, "Do Not Use Straws--He Will Aspirate"! "Please Use Electric Razor." "Keep his Bed at a 90 Angle." And so on. Many new aides are never told about their patients. This alerts them to the needs; you certainly can remind them: "Did you see or read the signs?" So many loved ones are deserted in the nursing home. Having pictures of your loved one's family, albums he can look at when he was a child, and albums of his children and grandchildren, are helpful. One Christmas, I wasn't sure what to give my father, as he is an invalid with very little recall. I took pictures at a family gathering and took individual pictures of everyone. I used a small album he could hold easily and labeled each picture with their names. He was able to show his album to others and read what I had written. He would sometimes put it under the covers with him in bed. The nursing home made an album with pictures we brought of him with his mother and dad and with pictures of him later, as an adult. The people who take care of him look at this album. It shows them that my stepfather is a very important person and a very important part of our family. |
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