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ABOUT—My Journey

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


No one is ever "prepared" to be a caregiver. I knew it would be my main responsibility, but I was overwhelmed with how much of my time was devoted to to my parents care. My family was supportive at a distance, visiting when they could. On the whole, however, it was my life that changed substantially. My parents lived across the street, in a quiet neighborhood. This made it much, much easier to "run over" whenever they needed me, to prepare and join them for meals, take them to doctor's appointments and, in the end, monitor their home care and hospice services. This is your final time with your parent, try to make it the best time you can. Below are some of the things I learned:

  • Time is always an issue. See what tasks at YOUR home can be done by other family members or professionals. If you have spent all day cleaning your parents house, the last thing you want to do is go home and clean your house. Get help for one or the other, or, ideally, both. I also used a different pharmacy than my parents. I changed. It was one less trip.
  • Make sure your parent(s) have a health care proxy, power of attorney and wills -- all signed and notarized. My step-father designated his sons on all these documents but they lived out of town. So, they drew up a notarized document that gave me the authority to make health-care decisions that couldn't wait.
  • Make a list - carry it with you; place it a plastic bag on the refrigerator with a copy you can give to EMT's, nurses, aides, etc. You have no idea how many times you will be asked the following:
    • Patient name, address, phone number, medicare#, id for any other insurance
    • Doctors names and phone#: primary, specialists
    • Contact person (you) name, address, phone number, health care proxy (attached)
    • Pharmacy and a list of medications: medication, dose size, when dose is given
    • If the patient is at home, include a secondary list:
      • Family & phone
      • Neighbors & phone
      • Services: hairdresser, plumber, handyperson, cleaners (pick-up & delivery is best), housekeeping, etc.
      • Any other primary individuals who either you or your patient may want/need to contact.
  • Remove negativity from the equation. If a parent insists on picking on you for past issues or current issues beyond your control, GENTLY say, "I don't want to spend our time discussing that." Do this every time the subject comes up. And, if this doesn't work, stop what you are doing, immediately get-up and leave the room for a while. Be consistent and calm. The atmosphere will change.
  • Elderly patient minds are like steel traps. Once they focus on something, they can't let it go. When they ask you to do something doable, do it - right then. If you wait - "I'll do it later (when it is convenient for me)," they will ask if it is done every five minutes. Example: "Will you water the plants?" Until you say yes, they will ask "Did you water the plants." until it is done. Personally, the latter drove me crazy. So, I would stand up and go do it the first time it was brought up -- no matter what was going on."
  • Be firm. The line between parent respect and child/caregiver is a tough one. It is not always about what they want but what is going to give them a quality life.
  • Anti-depressants. I'm not sure how one can be sick for a long period of time and not be depressed. If your parent/patient show signs of depression (doesn't want to go anywhere, see anyone and/or do anything, sits or sleeps all day; doesn't show an interest in anything; diet changes; etc.), ASK the doctor to prescribe an antidepressant for them. Cooperative patients are much easier to care for and be around.
  • Complaining. If, as far as you can tell, your parent is well-cared for, all complaints should be directed to family who is NOT present. Did I not cook the dinner perfectly? Call my sister. Did I forget to get the car washed? Call my brother. And, she did because I would dial the phone for her. The result, family was involved and there was less complaining.
  • No Strangers in MY house. The first time I hired an aide, my parents were besides themselves. I had to cancel the service within four days because they made me so nuts. But, eventually, it became clear that 1) the aides were for me as much as for them and 2) I had not given the aide enough direction. The next time, and there was a next time, I did it much differently. The aides concentrated on patient care and, in down time, helped with the dishes, laundry, bed-changes and light house-keeping.
  • For me as much as my parents, I made the effort to get them out of the house every day. We went to garden centers, restaurants, parks, the malls, family gatherings. Doctor's visits didn't count.
  • Pets. I am a big believer that pets have a soothing effect in a household. After my stepfather died, my mom adopted a dog. She had company all day and night, as well as something to care for besides herself. Except for walks, Sugar, a minature white poodle, never left Mom's side. A year later, I adopted another dog, Sam, a abandoned lhasa-poo mix. He immediately joined the parade that my mother led from room to room, in and out. Mom loved watching the dogs interact with each other and with her. I realize a pet is just another something to do for a caregiver, but I found it more than worth it.
  • Communications. Initally,I set up cell phone automated dialing. Then, I set-up a large button phone with a one button call to me. This was followed by an intercom system. Finally, I added a baby-monitor so I could hear what was going on and could respond via the intercom. When it became time to stay at my mom's house overnight, I still used the baby-monitor. It was loud enough to wake me from the deepest sleep, so it allowed me to sleep.
  • Personal care. No matter how easy the care is for your parents, the responsibility is stressful. It is imperative, as caregiver, you get enough sleep and make time for de-stressing. For me it was walking the dogs and gardening. Nothing like moving seven yards of mulch to work off energy.

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