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ABOUT—My Journey

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

Taking care of a parent or parents takes time, more time than you can imagine: either by their side or on the phone explaining why you are not by their side. Then there are calls to care providers, including family, trips to the various stores to "just pick-up this one little thing." It is easy to become frustrated and irritable. Often this is the result of not alloting enough time for your parent(s) and not alloting enough time for you to regenerate your energy. Give Senior Services and/or Hospice a call because there is help available.

  • 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.
  • 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.
  • 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. Have plenty of towels and wash cloths available.
  • If your patient complains about a physical or psychological symptom, do not assume. Have the patient tell you what they can. See if you can "see" or "touch" or understand the problem. The patient will often talk more explicitly to you/family than with the nurse or doctor. In fact, sometimes, you can fix the problem yourself.
    • Keep a list. Everytime you or your parent/patient have a question or a complaint WRITE IT down. Keep a spiral notebook handy and record issues. Then you can bring the notebook and go over each concern with theappropriate doctor, nurse practioner, hospice care, etc. I found this to be invaluable since more than once my memory failed me.
    • Just because one doctor doesn't think the symptom/complaint is "fixable" don't stop. Many physicians only know their own specialty. So, if the neart/blood pressure doctor likes a reading of 90/110 even though the patient is always groggy, the neurologist/brain doctor may want it more like 110/120 for optimal brain function. Best if you can find a holistic approach.
  • Elderly patients can be cranky (to say the least), insistent and impossible -- we, as their family sometimes, in the heat of the moment forget THEY ARE SICK. Sometimes it is to push us away. Sometimes it is to show us how frustrated they are with their inability to solve their own problems and feelings of becoming a burden. Don't listen to their anger, have patience and be there for their real insecurity.
    • When Mom would get angry with me, I gave her the phone so she could call and complain to someone who was NOT by her side -- I did not want to hear it. She would either laugh or call one of my siblings and complain, right in front of me. I would even help her with suggestions about what to complain about. It was very funny. We would both end up laughing and then we would enjoy the rest of our time that day.
  • Older minds don't work as quickly. Answers come, but they come slower. Patients would rather leave the decisions up to their care-takers because that ability is one of the first to go. I would ask Mom to make a choice between this and that so she could feel she was participating and had some control. She would generally have an opinion but it often took many minutes before I would find out what it was.H,HC
  • 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. H,HC
  • Speak Simply. Talk too fast and/or with too many words. Older brains may be sharp as a tack but ability to sift through words quickly may diminish. While it may not be necessary to do this ALL the time, if you want your patient to follow directions on their own, be sure they not only understand what you said but can repeat it back. If memory is a problem, all bets are off.
  • Patients need to look good every day. Dressed, if possible, hair done, make-up (if female), and if your parent or patient dyes their hair, no roots. When they look in the mirror, they should look good. It is part of feeling good and happy. Also, it they are happier to have visitors.
  • Patients need a reason to get up every day. Plan something so one day does not melt into another, If you can, get your parent or patient out of the house or hospital room/floor, even if it is only for an hour or two. You know what they like to do so you can bring it to the room -- try not to make it TV every time. Or if it is TV (videos included), find and share the movies they like and remember... make it like a "special showing" -- be creative because it does matter.
  • Be somewhat creative with meals. Tasting ability can change, diminish. Add spice. Serve favorite foods; invite family, friends, neighbors to join you -- if not for a meal, for desert. People change the interior landscape. And, I would often buy flowers to add color to the room.
  • 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.
  • 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.
  • Take care of yourself. After doing for someone else for hours and hours, take some time -- every day, if possible, and do something for yourself -- if your house is a wreck because you haven't had time to clean, if you can, hire someone to clean it or ask for some help from family and friends. You would be surprised how many people want to help you and just don't know what to do. Start a project that make you happy and work on it -- a little every day. You need to do for you and you need to find something that takes your mind off illness.
    • I walked, gardened - great for digging, lugging, mulching, you name it. Over the course of six years, I redid my whole garden and expanded it; added a koi pond with a waterfall, worked on my mom's garden, put in a handicap-access porch to eliminate stairs in and out of her house, redid my front walk to eliminate a step and widened the landing so my mother could be wheeled into my house, redid the side walk so she could be wheeled into the back garden, and the list goes on. It was good for her and great therapy for me.
  • A Sense of Humor - often you will find you are part of an absurd world, where anyone and seemingly everyone can be off the charts. And while you can help keep things on a more even keel, sometimes you have to laugh and move on. Eventually your positive attitude will begin to affect everyone around you and things do get easier. Each day is a challenge.
  • Family is important. If you are the chief caretaker, the responsibility is yours. However, that doesn't mean your siblings do not have opinions -- in fact, opinions they'll share with you...often. However, they are reacting to your parent or patient as they percieve the situation, not necessarily what is actually happening. Listen, take notes, let them know you are taking notes and then use what you can, when you can and ignore the rest..
    • My mother could be gasping for breath, at death's door, but if the phone rang, she would carry on a conversation like she was 100%. My family found it hard to reconcile what I reported and what they heard on the phone.
    • Mom could be so exhausted that she couldn't stay awake for more than a few minutes at a time. When family visited, she insisted on going into the livingroom and played hostess. Again, they couldn't see the "real" issues.
    The effect of this Jeckle/Hyde behavior is that your family sees someone who is relatively "OK" and figures you are having a pretty easy time of it. They limit visits either in duration or in frequency or both. So, when my family visited, I went home. Did whatever I could for myself or, sometimes, nothing -- happy that for a few minutes the responsibility lies with someone else. I don't think my family was happy that I left, but I was happy they were here.
  • 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 same people working with your parent or patient consistent , keeping routine consistent. New faces every day can be disorienting.
  • There is no such thing as "five minutes."
    • Even today I am finding the my "five minutes" is more like fifteen. It still FEELS like five minutes but the clock says fifteen. Add a few seconds on a regular basis and you'll find that when you are eighty, five minutes to you is clocked at forty-five; a minute becomes twenty minutes and, there is no such thing as "just a sec."
    • Getting out of the house takes forever. Despite all your efforts to do and take care of things methodically and efficiently, your parent 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.
  • 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.

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