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ABOUT—My Journey

Carol L. Bluestein: PARENT/PATIENT CARE—4
1. Introduction 3. Hospital/Facility Care 5. Care Givers 7. Stroke Recovery
2. General Patient Personal Life History Form 6. Aides & Aids 8. Hospice


  • Always, Always have a portable blood pressure/oxygen level machine handy as well as a thermometer. You can't imagine how often, when you call a doctor they will ask for the readings before they'll make an appointment. Eventually, you'll learn good readings vs bad and make adjustments in your care for the day.
  • 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 and who they are. Make sure there is a Patient Personal Life History Form available and have extra copies to hand out as necessary.
  • Always have a supply of rubber gloves on hand. Go with "Large" and they will fit all hands.
  • 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.
  • Someone was with my mom from mid-morning to bed-time. We made sure she was stimulated and watched her rehab so we could mirror some of the activity when we were with her; we helped her eat, dress, exercise and, yes, go to the rest room.
  • Physical response to a verbal command -- i.e. why don't you sit down -- can take your parent or patient more than a few seconds to process and another a few seconds to activate the process of sitting. This does not mean the person has gone deaf. Speaking louder does not help. And, speaking faster does not speed up the process either. If you think I'm kidding, you just haven't been there yet.
  • 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.
  • Using a walker. Often patients do not want to advertise their disability to ANYONE. Remember, safety is an issue: would they rather fall and break a hip or stay safe.
  • Using a transport chair/wheelchair - it vastly improves the quality of life for everyone.
    • 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. She could go anywhere and do anything.
  • Using oxygen. Again. No advertising of disability. Electronic monitoring equipment (home and hospital) can give you the oxygen levels.
    • When a patient does not have enough oxygen (hypoxia):
      • Mild symptoms include difficulties with complex learning tasks and reductions in short-term memory. If oxygen deprivation continues, cognitive disturbances and decreased motor control will result. The skin may also appear bluish and heart rate increases. Continued oxygen deprivation results in fainting, long term loss of consciousness, coma, seizures, cessation of brain stem reflexes, and brain death.
    • Look for symptoms in patient response, vagueness, tiredness.
    • Mom would NOT wear that nose piece in public. As it turned out, without oxygen, her body would collapse and/or 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.
  • Be consistent. As people age, they get set in their ways -- but you knew that. Most of the resistance caretakers get is because there is change in their world and they are frightened, which we see as anger and stubbornness.
    • When you have to change their daily routine, try to keep the new routine the same from day to day. Within days, they will recognize the pattern and be more responsive.
    • If possible, keep the people working with your parent or patient consistent , keeping routine consistent. New faces every day can be disorienting.
  • Toileting in the seated positiont can take up to fifteen minutes, depending on how much help you are getting from your patient. If you let your parent or patient do it themselves (with or without your coaching)- great therapy and necessary if you are trying to support their independence -- figure more like forty. And, no matter what, they will have to go to the bathroom everytime they leave the house -- and I mean on the way to the car. Elder care brings new meaning to the word"timing." Now that you know, plan accordingly and save yourself the aggravation.
  • Aides - types.
    • While there is all levels of care available, in can be fairly simply divided into four categories:
    • Nurse - able to administer medication as well as patient care;
    • aide - able to take care of patient but no medication;
    • housekeeper - keeps things tidy and light cleaning, can do laundry, makes meals and asists patients to insure safety.
    • Patient sitting - call someone if your parent or patient needs help.
  • Safety and Rehab: watch, learn and listen while your patient is getting therapy (of any kind) so you can be an effective support. Now, something I did not do: have someone video you while you are working with your patient. For example, do one for helping your parent or patient to stand and sit. Then show it to anyone who will be working with your parent or patient -- especially siblings -- so they can maintain the consistency.
  • Aides - home care. Know what kind of support you are paying for and the actual support your parent or patient is getting. Almost all aides will do light cleaning, laundry, light meal preparation, patient toileting, dressing, etc. And, if at all possible, interact with your parent or patient -- even if your parent or patient can not talk.
  • Aides are NOT supposed to be a couch potatos for 4 to 6 to 8 hours a day. Your service providers are there for you and your parent or patient. Let go and make them partners - make lists of the things you do that they may be able to do while they are on duty, with patient care being foremost. Make good use of lists as well as bells, buzzers, whistles, baby monitors, walkie-talkies and intercoms to increase awareness and communication.
    • Best use of time for aides for me was a) getting ready in the morning - showering/bathing, dressing and grooming and b) getting your parent or patient ready for bed - modified wipe down, undressing, toileting and personal care. For me, these things requir ed a lot of patience since the rule in this case was to let my mom do as much for herself as possible for as long as possible. 

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