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    Life History form
ABOUT—My Journey

Carol L. Bluestein: PARENT/PATIENT CARE—3
1. Introduction Patient Personal Life History Form 5. Care Givers 7. Stroke Recovery
2. General 4. Home Care 6. Aides & Aids 8. Hospice
  • Patient Advocate: If family is not with your parent or patient, there is a good chance neither is anyone else. They can lie alone in emergency rooms after being evaluated and waiting for a room. They can have difficulties in explaining what is wrong.
    • After my mother passed out and was admitted to the emergency room, she had no idea what happened so she couldn't answer any questions. All she said was, "I feel fine. I want to go home." She had a pacemaker within the week.
    • With respect to dignity, nothing is worse than your parent having to go to the bathroom and no one being around to help. You can find help because you are mobile, and, believe it or not, eventually you learn how to help yourself.
  • Touch your parent or patient. Visiting and keeping your parent or patient company is good, Touching is better: holding hands, kissing, hugging, etc. I think that it personalizes your time and helps your parent or patient feel "normal," in that they are touchable rather than untouchable.
  • If family is not with your parent or patient, there is a good chance neither is anyone else. I know this is harsh, but there are just not enough nurses or aides to take care of your parent or patient load AND all the paperwork they have to do. Buzzers are good at alerting people at the desk, but immediate care is often for issues deemed emergencies only. For everything else, the wait can be five minutes to a half hour or longer. Intensive Care Units have a shorter response time. H,N
  • No one knows your family member like you do. Whether they can talk or not, you do know what they want or need. Be pro-active and help the staff understand their needs. Make sure there is a Patient Personal Life History Form in their folder and have extra copies to hand out as necessary. Also, leave a list of contact phone numbers with the patient and the nurses.
    • An example... When my mother had her first stroke at 82, I was by her side as was her husband, my step-dad, 91,. He was concerned and basically hysterical. My mother quickly lost her ability to speak. However, I kept talking to her and knew that she retained her ability to understand what was going on and could indicate yes and no.. I explained everything I knew to both of them and interfaced with the doctors. I told the doctors that a) my mother understood everything and b) nothing negative was to be said in front of her or my step-dad. The hope of getting better had to remain with both of them. When the neurologist came in to test my mother, I explained the situation before the exam. In spite of my information, she ask a question that required more than a shake of the head. OK, I get that. See if your parent or patient can speak. She then asked another and a third. I could see my mother getting very frustrated - she knew the answers but could talk. I invited the doctor out into the hall. The doctor said after the exam. I said, "Now. Please." I re-explained the notion of positive feedback and we went back in. The doctor continued with "yes" and "no" questions -- and when she left, my mom felt very proud of herself -- and I'm sure the doctor had all the data she needed. There is more than one way to be effective.
  • Learn the floor. Where the kitchen is and what you can bring to your parent or patient; what and when things get done; who does what; how the kitchen operates -- if your parent or patient does not eat the meal provided, there are alternatives available to you with just a phone call to the kitchen; where the supply room is; how to assist your parent or patient with toileting, eating, getting up and down; what goodies you can bring to offset the hospital fare; when the doctors are expected; what medication is being given and if you can determine if it is working correctly.
  • I learned that the rubber gloves are not just for nurses and aides. You would be astounded at how much you can help your patient if you just put the gloves on. You can virtually touch and/or clean-up anything. There are always plenty of towels and wash cloths available.
  • If your patient complains about a physical symptom that you can observe, no matter how distasteful, observe. Have a show and tell. Then, you can be a second opinion as to how the symptom is reacting to the treatment. Do not, ever, assume -- anything. You will, eventually, learn enough to be on staff yourself, and, as a result, your patient will get the best care available.H
  • If you are having problems with staff of any kind, there is a nurse or a floor manager in charge of EVERYTHING. Find that person and have a talk about your issues and document the incident(s) as best you can.. They are amazing helpful and have the authority to intervene on your behalf.
    • My mom, a stroke patient, was left alone to feed herself when she had trouble holding a fork. She needed assistance. I found her with her breakfast down the front of her and the table a foot and a half away from her -- that never happened again. After discussion, an aide was by her side until she could do it herself.
    • When I found that she had been dressed improperly and uncomfortably, I was told that she did not eat her breakfast quickly enough, so there would enough time to get her dressed so as to be ready for early therapy. Hence her hasty, improper dress was HER fault -- that never happened again. After discussion, her therapy was moved to the later session and she was given enough time to eat and the dignity of being dressed correctly and comfortably.
    • When she seemed too tired to do anything, I was told her blood pressure low -- below low average -- because that was on her chart, I knew, from the neurologist during her first hours of admission, that it had to be medium-to medium-high to get enough oxygen to her brain so she could function. After discussion, doctors were brought in to re-evaluate and make the changes to the chart. After that, I got the readings on a daily basis so I could compare her chart to her behavior and ask for adjustments as necessary -- the doctors had to come more than once.
  • Appetite. As appetite diminishes in terminal patients, I went out of my way to make favorite foods -- especially those that evoke memories: remember we always used to eat this on Sundays, etc. You will notice that portions have to be smaller so your parent or patient is not overwhelmed and can feel good about "finishing." Soon you will notice that there is a lot of chewing going on and not much swallowing. It is just part of the process.
  • Elderly patients who have to go the the hospital for more than one or two nights, experience disorientation. They can become fearful, anxious, sleep deprived and physcial. They can loose track of time, day is night and visa-versa. And, they can become difficult for the staff to handle. My step-dad would insist on calling my mother at all times of the day and night pleading for her to come. Finally, the staff called me. I took him out of his room and we sat in the hall and talked. I assured him that his confusion would pass and he would be fine. In fact, I made him repeat "I will be fine" until he believed it. Then, we talked about how funny his topsy-turvy world was. I told him I was real, held his hand and wound up spending the night, holding his hand until he fell asleep. In the morning he was still confused, but a gentle correction made him smile and relax, saying "I'll be fine."
  • Be as honest as you can so your patient can help make tough decisions.
    • My mother, who could not walk fifty feet without have to sit down, would not use a wheelchair or transport chair. I said, fine. However, if she ever wanted to go shopping again, she would have to reconsider because there was not a guaranteed place to sit. She wouldn't budge. Then, by chance, she was invited to my brother's house for the weekend, a trip that included a visit to a large outlet mall. "OK," I said. "How about you agree to the transport chair for the distance between the stores, but get out of the chair to do the actual shopping?" She agreed and had a great time. The transport chair became her life-line after that.
    • Then, she refused oxygen. She would NOT wear that nose piece in public. As it turned out, without oxygen, her muscles would give out and she would lose mental focus. I told her that I would not be able to take her out of the house because I could not manage her weight when she started to collapse. So, first we started with oxygen in the car -- only. Then, oxygen could come with us, but she would not use it until she needed it. And, finally, she would wear it all the time.
  • When your parent or patient refuses medical intervention, talk to the doctor about Hospice. Do not wait. Hospice offers a great many services to your parent or patient and the care giver as well as picks up many of the medical equipment costs.

Carol L. Bluestein CONTACT Information • • PO Box 238, Slingerlands, NY 12159 • *518-369-2866
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