How to Be an Advocate for Your Elderly Parents

After spending 5 years driving 200 miles every third weekend to see about my elderly parents who were ill, I learned how to meet many challenges on the way. This article will teach you what you might expect and how to start looking for solutions to your particular challenges.

Instructions

Difficulty: Challenging

Things You’ll Need:

• Fortitude
• Determination
• Love
• Lots and lots of Love

1. Home: First of all, if you live in the same area as your ailing parents, consider yourself fortunate. If, however, like me you live some distance away, try to find a way that your parents can move closer to you. Unfortunately, most elderly people are incredibly dedicated to remaining in their homes. If this is the case, you may find yourself very frustrated even to the point of obsessiveness about getting your parents to move from their home into a better environment whether it is closer to you or not. I spent 5 years going through this with each of my parents who were divorced. After everything my brothers and sisters tried, it is clear now that what we believed would be best for our ailing parents, wasn't necessarily true and the energy and emotional costs of trying to get them to change their minds could have been spent focused on other challenges we faced.
2. Travel: If you have to travel a distance to see about your ailing parent often, keep a small suitcase with essentials in it ready at all times. You will want the basics, shampoo, toothbrush, travel clothing, etc. You will know best what you need. Keep this small suitcase ready because there will be times when you will have to leave suddenly.
3. Doctor's Visits: If it is at all possible, go with your ailing parent to doctors' appointments whenever you can. Go into the doctor's examining room with your parent to make sure that the doctor is aware of the facts. Your ailing parent is likely to downplay what is really wrong or focus on one thing and not the whole picture. Take a list with you of your concerns so you can remember what you want to ask the physician or clinician. Also take a list of the medicines your parent is taking and if you have any concerns about the medicines, don't be afraid to ask.
4. Resistance is Futile: It is inevitable that at some point in your parents' end years journey that you will meet with a physician, clinician or other care-giving person who isn't as responsive as you would like. You will meet people who are resistant to your output, your questions and concerns. You will even meet people who are incompetent. This is when it is time to forget your manners. You may not like confrontation, you may hate to feel like you are coming across like a "bitch" but the truth is, your parent's life is at stake.
5. Be Vocal: The squeaky wheel gets the grease. This is as true today as it ever was. The more you ask for what you need for your parent, the more likely you are to get what you want. If you can't get what you want from one care-giver or physician, find another one. Be strong. Be vocal.
6. Emotions: When you are at the end of a long exhausting day dealing with doctors, nurses, receptionists, radiologists and health insurance representatives, and feel like crying, go ahead. Cry your eyes out. Then call your spouse, your sibling, your friend and talk about it for a while but then also listen to what is going on with them. This will remind you that the rest of the world is still going on like it always has and that you will get through this. If things get too bad, go online and look for care-givers support groups. You are not alone. There are millions of us out there and we're all going through the same types of things.
7. Health Insurance: Go over your parents health insurance benefits very carefully. Sometimes health insurance companies that work through Medicare/Medicaid are not as good as the government's program. If you are unclear on something, call the insurance company and talk to someone there until you understand. Here is an example of why this is so important:
   
   My father's Medicare insurance gave him a list of doctors to choose from. He chose his doctor based on the locality (it was close to where my father lived). His insurance, however, only allowed him to be admitted to two area hospitals. The physician he chose from the list provided by the insurance carrier was not allowed to practice at either of area hospitals my father could be admitted to.
   When my father broke his hip, he had to be taken to one of those hospitals. The doctor assigned to him was a stranger to him and to us. When my brother and I asked the doctor if he would take an x-ray of my father's swollen and bruised leg and hip, the assigned doctor didn't think that was necessary. We explained to the physician that my father had been ambulatory (able to walk) before the fall. The physician refused to have my father's hip and leg x-rayed. A hospital is only as good as the doctor who is treating your parent. After a couple of weeks of hospital stay, my father was moved to a rehabilitation facility. After he had been having physical therapy for a week, we were finally able to get him into see an outside independent orthopedist. I took my dad out of the hospital's rehabilitation facility so he could get his hip x-rayed. Yes, he had a broken hip. It had been broken for 3 weeks by then. My father had had excruciating physical therapy with a broken hip before he was treated properly. His hip never healed properly but almost certainly would have had he been treated in a timely manner.
   So, if someone tells you no and you don't agree, don't just take it. I wish we had taken my dad out of the hospital sooner for a hip x-ray. This is what it means to be an advocate. In this case, the insurance program failed my father. If my father's physician had been able to see him in the hospital, I feel this wouldn't have happened. This is why it's so important to understand how your ailing parent or parents insurance program. Most doctors do their best for patients but remember, they are overworked and can't remember all the details about every patient.
8. Hospitalization: If your parents immune system is weak due to years of smoking or some other reason, and has to be admitted to the hospital as an in-patient or as an out-patient, be ready to stay with him or her around the clock. When a nurse, technician, physician, etc., comes into the room, watch to make sure they wash their hands. This may seem like a no-brainer. You may feel uncomfortable asking a professional care-giver to wash their hands. But your parent's life may depend on it. My mother went into the hospital for a routine breathing treatment (a long time smoker with emphysema and COPD). Someone who treated her that day, forgot to wash their hands. She contracted MRSA, a resistant strain of staph pneumonia infection. And she didn't survive. My mother's physician told us that "someone forgot to wash their hands." My mother's death was preventable. Hospitals are dangerous places for immuno-suppressed people especially. If at all possible make sure that you or another trusted person is with your elderly parent at all times in the hospital. There is a shortage of nurses and they are often overworked. Your elderly parent needs someone with him or her at all times.
9. Doctor Visits Revisited: I can't stress enough how important it is that you or one of your family members or other responsible advocate attend your ailing parents' visits to see doctors. Keep your eyes open and be alert. At one doctor visit, my father was sitting in his wheel chair with his foot on the floor. A technician started to push his wheelchair without thinking and my father's already broken hip was distressed when his foot stayed where it was on the floor but his wheelchair and the rest of his body moved forward. We spent another night in the emergency room.
10. Special Needs: If your parent needs a wheel chair or other such device and you can't afford to buy one for them, there are resources available that may provide you with what you need. I was able to contact a veterans organization who found a free wheel chair for my father in another city in the state in which my father lived. Be prepared to ask for things from such groups and organizations. You will be amazed at how many people will be willing and not just willing, but actually glad to help out. If you don't know where to begin, get on the internet. This is what I did night after night while at my dad's house. I would get him to bed then I would get on the internet and put in a search for something like, "free wheel chair Tennessee". If your ailing parent was a member of a sorority or fraternity, ever served in the military, or belonged to some other large organization, look for services and help through those organizations. I was, after a great deal of paper-work and telephone calls, able to get my father into the Veteran's Administration insurance program. My father felt more comfortable with the VA setting anyway and the people working there seemed to be more eager to help. While the VA doesn't have the sparkling new facilities we have become used to today, in many cases, what they have to offer is much much more important.
11. Food: When you live out of town and worry about what your parent is eating, there are some steps you can take to assure he or she is eating properly. First, call the church your parent or parents belong to. Or if you live in the same area, call your own church. Members of the congregation are often willing to call on your ailing parent with a meal and a chat. See if you can get different individuals to bring a meal or two per week. If this isn't possible, see if there is a Meal on Wheels Program in your parent or parents' area. Be warned however, that some of those programs are better than others. The one in my father's city provided meals that were less than optimal in tastiness. Call the local grocery stores and ask if they deliver. Find out what the fees are. Find out how it works. Many grocery stores will let you order a list of items and they will deliver them to your parent. In my case, I paid the grocery store myself and my father got frozen meals that he liked and could heat in the microwave delivered to him.
12. Medicines: When it comes to medication, many elderly people will continue to take medication given to them by their doctors long after they really need to. Check all the prescription bottles and if there are several prescriptions from different doctors, call either the physician you trust most, or call a pharmacist and ask if they have time to counsel you. Take the medicines in with you to the pharmacy or to the doctor's office and ask questions. Some of the medicines may be redundant. Some may not react well together.
    Buy a pill box that has easy to read days of the week or even times for each day of the week and put all of your parents' medicines in the appropriate boxes and instruct them when to take the medicines. And then check each time to make sure your parent is actually taking the medicine properly.
    Be aware that elderly people respond differently to medicines than they did in their earlier years. My father had an extreme reaction to morphine in the emergency room. He was literally out of his mind for three days as a result. We were afraid he had irrevocable dementia. Luckily that was not the case and he came out of the psychosis like reaction after several days. Elderly people do not do well with any type of central nervous system depressants. Keep that in mind. Know the drugs your parent is taking.
    If your parent is put on a new medicine be prepared to stay the night with them to make sure they don't have an unfortunate reaction.
13. Home Care Givers: If you have people who give care to your elderly parent when you are not there, try to meet and get to know the person who will be seeing about your parent. If you don't feel good about a person, don't be afraid to send them packing and find someone else. Would you rather be polite to a stranger or save your elderly parent from being taken advantage of or even abused?
    If your parent has a large network of church friends, it is helpful to let them know your parent is ailing or talk to the preacher or priest and let them know your parent is alone and needs visitors. Whether you are religious or not, church is community and friends, not just religion.
    If you are religious, your parent's church and your own church community will be absolutely invaluable to you and your ailing parent. Don't forget this community of caring people. And remember to reciprocate.
14. Take Care of Yourself: Don't forget to take care of yourself. Your body will be affected by the stress. Be sure to eat properly even when you don't feel like it. Take your vitamins and try to get a little exercise, even if it is just walking around the block. You will feel better. Talk to your own network of supporters whether they are family, friends or acquaintances. Just talking about it helps. Schedule times to do something you enjoy and don't skip out on those occasions unless it's absolutely an emergency. You need to stay strong in order to help your ailing parents through these years. You mustn't be afraid to ask for support from friends, co-workers, family and church.

Tips & Warnings

• Talk to everyone, you never know who might have help to offer.
• Don't be afraid to stand up to care-givers, physicians and other clinicians.
• Be courteous when you can but if you have to be confrontational, do so in a calm and assertive manner.
• If another family member, a sibling isn't helping as much, don't be afraid to tell them how you feel.