They're sick...now what do you do? This is the story and "how to guide" of my journey with my father beginning with his stroke, finding and moving him into an assisted living facility, and everything in between. This is not a clinical guide, but a real life manual of what to do, what not to do, and what to expect, because everything and anything can happen. Some is matter of fact, some is completely unbelievable, and all is true! After reading this book, learn two valuable lessons: 1. When the time comes, you CAN do this. 2. Keep your sense of humor along the way!

They're Sick ... Now What?

Keeping your sanity and your sense of humor while caring for your aged relativeBy Annette Marra

AuthorHouse

Copyright © 2010 Annette Marra
All right reserved.
ISBN: 978-1-4490-8940-5

Contents

Introduction.........................................................................................................ixI. They're In the Hospital ... I'm Going to Have to Kill Somebody!...................................................1II. Have the Talk ... No, Not the Sex One............................................................................9III. You'd Better Be Nice to Me, or I'll Put You Into a "Home"!......................................................13IV. "The Golden Years" My Eye - Goldtone at Best - You Know, the Kind That Turns Your Skin Green.....................17V. Location, Location, Location......................................................................................23VI. You're Gonna Need a Bigger Boat..................................................................................29VII. Fasten Your Seat Belts; it's Going to Be a Bumpy Move...........................................................33VIII. You Don't Need to Be a Superhero, You Need to Be a Delegator...................................................35IX. ... And They Lived Happily Never After...........................................................................37X. What You See, Is Not What They Get................................................................................43Some Helpful Phone Numbers and Websites..............................................................................47

Chapter One

They're In the Hospital ... I'm Going to Have to Kill Somebody!

It is imperative that your relative has a health care proxy and living will in place that makes sense. Most of our family members have their spouse or significant other listed as the decision maker. In most cases, that person is not or will not be in the best of health mentally or physically when a decision has to be made. The doctors legally do not have to talk with you. The relationship between the patient and care giver is crucial. I went through this with my father. The doctors would only speak to his wife, who by the way, is suffering from pulmonary fibrosis and is not getting enough oxygen to the brain. She is a very nice person, but her memory is not the best. I finally convinced her to have the doctors speak directly to me, and then I would relay the information back to her. There should be a law that transfers responsibility in the event of incompetence. Unfortunately, common sense on the part of the doctor is not a factor.

Each case is different, but each bears its own set of headaches. There were several doctors and each doctor had a purpose for a specific situation. Even though my father's wife told the doctors to speak to me, you might think that was sufficient - wrong again! Here's an example: one doctor in particular, I had left six messages for him to call me back, but to no avail. I later called the charge nurse, and explained that if I did not hear from that doctor by 12:00 that day, I would have my attorney attempt to contact him instead. I then let my husband know that we might very well have to get an attorney, since we did not have one. I thought he should have a 'heads up' to my threats.

And guess what? The doctor called me back. He wanted to know why I "had ants in my pants" about getting a phone call.

What should you do?

1. Tell the doctors you want a daily phone call, regardless if there has been no change. You might think you were asking them to donate a kidney by requesting this, but stay your course. You will be held responsible for making the calls; get used to voicemail, because you're going to be talking to machines, not people.

2. Write everything down. With all that is going on, your memory will become like a sieve - mine was prior to all of this.

3. Ask questions. No question is stupid - to the doctors perhaps it is - but not to you. Keep a list of every procedure and of every medication they are given. Ask why those medications are being administered.

4. When visiting them, bring a survival pack. I learned this one from the wife of the patient next to my dad. Disinfecting cloths, hand sanitizers, etc. are all worthwhile investments. The tray table alone is a breeding ground for all kinds of things. Don't forget to clean the phone and remote too.

5. Hire a nurse if needed. Yes, there are nurses; it is a hospital after all, but there is, in many cases, one nurse to 15+ patients. If your relative is in need of greater care, or you simply want eyes in the back of your head, (good to have), go online and search: "hiring a nurse or aide". You will need a registered nurse if you want their medication monitored; an aide is sufficient for overall care. Each state is different and so is care. I had to hire an aide for my sister in Florida when she went in for surgery, but that's another story.

6. "Patient Advocates" The literal definition is this: they act as a liaison between patients and health care providers to help improve or maintain a high quality of health care for patients.

That's great in theory, but the reality is that they really are a hit or miss proposition. Their services are usually offered when the patient leaves - go figure.

When my father returned to his room after having some tests done in the hospital, there was a business card from a "patient advocate" left with an offering of assistance. When I was having difficulties with my father's care: circulation socks, choking, communications with the doctors, etc., I called his patient advocate. After leaving several messages on her voicemail, she finally returned my call only to explain to me that my problems were not in her area of expertise; she then recommended that I speak to the charge nurse and doctors. The mental image: a puppy chasing his tail. When my father was discharged, there was another business card from her offering further assistance; I was still waiting on the first request. Perhaps their job is to "offer" assistance and hand out business cards - she was quite proficient at that.

7. Getting them home - Good Luck! Your wellness checklist and the hospital's wellness checklist are two different things. When I brought my father home, picture this scene: Him in a wheelchair, his wife in a wheelchair, feeding tube formula, diapers, and a half hearted "good luck" from the staff. To be fair, the nurses could not believe that the doctors were sending him home. He could kind of walk, so he was good to go in their eyes. Don't be fooled - insurance does indeed dictate care. My father should have been sent to a rehabilitation facility, but the hospital did not feel it was necessary. Try to fight this one; I did, but to no avail. It is quite costly to pay for a rehabilitation facility, let alone get them in to one. Try to find a doctor who will sign off on a Medicare covered stay in a rehabilitation facility. Currently, Medicare will cover 21 days in a facility for most cases.

8. Rehab facilities are also something that you need to "shop around" for. If the hospital or doctor recommends a facility, check it out for yourself. My friend's aunt needed a rehab center, so they went with the one the doctor suggested; logical enough. Rehabilitation centers are like motels: there are no-tell motels and 5 star plazas. There are several reasons a doctor recommends a facility; he might even have a piece of the action. My friend's aunt was admitted...