Advocating for a Loved One in the Hospital or a Nursing Home

by BrendaReeves

Most of us at some point in our lives must advocate for a loved ones' medical care. The job requires two important tools: vigilance and common sense.

Doctors are next to God in the American status hierarchy. Most Americans take their word as gospel. I found out in recent years that not only can that practice be dangerous, but it can also be deadly. Over the last several years I have been caretaker for my elderly aunt and mother. What I learned through trial and error I consider priceless, but I'm offering it to you at no charge. You can use this information for your own medical advocacy and that of your children as well. It works no matter the age of the patient.

Firstly, I'll present you with some harrowing real-life scenarios and show you how to conduct yourself in the situations. Lastly, I'll tell you what to look for in a nursing home and show you how to conduct yourself when dealing with nursing home staff. I think you'll find it enlightening.

Hospitals

Dealing with Medical Staff

I cared for my Aunt Naomi until she passed away five years ago. She was in and out of the hospital and nursing home before she left this world. If you're ill and in the hospital, it's best to have someone who can advocate for you. Here's a perfect example of what I'm talking about:

Aunt Naomi had been in the hospital for a few days. On the third day, the nurse told me they were discharging her to go home. Naomi insisted that she didn't feel well. I informed the nurse that she needed to go to a nursing home in her condition. We couldn't take care of her at home. Here's what the nurse had to say:

Nurse: I'm not letting her go to a nursing home. She will go downhill in a nursing home. Sometimes family just has to step up to the plate.

Me: I'd like to speak to the doctor.

The nurse goes to the nurses station and calls the doctor. I'm watching from the hallway as she's speaking to him.

Nurse: Blah, blah, blah, blah.

She comes and tells me the doctor wants to speak to me.

Doctor: I can't approve the nursing home for Naomi.

Aunt Naomi is sent home by ambulance. As I got her into bed, she said she felt really sick. An hour later, I sent her back to the emergency hospital via the paramedics.

After some tests were run, the doctor informs me that she has pneumonia and a blocked bowl. They had to run a tube down her nose into her stomach to pump out the green bile that had backed up. It was not a pretty sight.

Lesson Learned: My Aunt Naomi would have died a very unpleasant death at home if I had not acted decisively. There were other relatives in the house, and I asked them what they thought we should do. All I got was "I don't know." Take action when you know something is wrong. Don't let medical personnel intimidate you. Take control when you see other family members are being passive or apathetic.

Nursing Homes

Dealing with the Staff

Naomi did eventually go to a nursing home. She needed assistance going to the bathroom. One day she called for someone to help her. An aide got her out of bed, but instead of physically helping her to the bathroom, she walked ahead of her expecting her to follow; Naomi fell. The 35 year old patient in the next bed witnessed it all. I'll get back to her later.

After the fall, Naomi complained that her back hurt for I don't know how many days. Her power of attorney was a first cousin of her's. I witnessed him telling the staff that she complained of pain in her back. They brushed him off. All he said to them was, "well something needs to be done," and he walked away. This wasn't the first time he informed them of the situation.

One evening, while I was visiting Naomi, she started crying due to the pain in her back. I told the nursing staff that she needed to go to the hospital to get it checked out. They told me that she just wanted to go home. She had told the physical therapist that earlier in the week.

The nurse told me that when we are in pain, our blood pressure drops. Naomi's blood pressure didn't drop. Therefore, in her mind she wasn't in pain. I told her I wanted to talk to the doctor. She called the doctor, but I wasn't allowed to speak to him. She came back and said the doctor wouldn't approve calling an ambulance, and if the doctor didn't approve it, medicare wouldn't pay for.

To make a long story short, I told her to call the ambulance, and I would pay for it. Naomi went to the hospital and a fracture vertebrae showed up on her xrays. She remained in the hospital for three days.

Lessons Learned

  • Medical professionals don't look outside the box
  • When you are the most vunerable in life, you may languish in pain because nobody believes you.

Medicare did pay for the trip to the hospital.

 

 

The Elderly Deserve to be Treated with Dignity

Make Sure They Are

Over the last year, my 90 year-old mother has been in and out of the hospital and nursing home a few times. She is now in a nursing home permanently and doing much better than she was at home. I visit her about three times a week and talk to her on the phone five times a day. If the nursing home was closer to my house, I'd be there twice a day like I was with my Aunt Naomi. Although Mom was diagnosed with Alzheimer's by a neurologist, after a mental breakdown, her mind is back and sharp as ever. She was obviously misdiagnosed.

I'm very happy with the staff in this nursing home. They're friendly and very approachable. But still, there have been a few incidents that I've had to intervene on: She was placed in a private room when she first arrived until she was dismissed from rehab. From there she went to what they call semi-private, which is a misnomer since the room is shared with another person.

The lady who roomed with her has Alzheimer's, but she is still verbal and understands a lot. The only problem is that she blasts her TV day and night. She leaves the room at 7:30 in the morning and doesn't return until after dinner. I brought up to the head nurse that my mother couldn't sleep with that TV blasting all the time. She said the staff had been told to turn it down, and she'd talk to them again. Nothing happened and one day she called me and said that she had to call someone in to turn the TV off at 1 A.M. Hold that thought for a moment.

The next incident occurred on the same morning when her room mate asked where her pants were. Mom told her, "They're right there on your bed." All of a sudden, one of the staff popped into the room and lit into Mom. "Don't you talk to her like that! I had better never hear you talk to her like that again." She popped out of the room as quickly as she came in. Obviously, the woman misunderstood or thought she heard something else. Mom wasn't too happy about being spoken to so rudely and that put her in a fighting mood. The next time the woman came in the room, Mom tore into her like a hungry lion. Then she walked down to the nurses station, in her wheel chair and tore into everyone there. Later, the offender visited Mom and apologized to her profusely.

These two incidents weighed heavily on me after I learned of them. The next day I called the social worker assigned to Mom and let her know that I was not happy. I told her that I couldn't sleep with the TV blasting all night, and I knew she wouldn't be able to either. The social worker said she would go speak to my mother right away, and she'd bring these incidents up in a staff meeting. About an hour later, I got a call to say that Mom had been moved to a different room.

Mom is very happy where she's at now. Her roommate is very quiet and not even in the room most of the time. Whenever anyone asks her how she likes her room, she replies, "Its heaven."

Things You Might not Think About

Your Parent Does

If my mother did have Alzheimer's and didn't know what was going on, this wouldn't bother me so much, and obviously it wouldn't bother Mom either. My mother is a 90 year-old Southern lady. I have yet to meet anyone in my life who is as uptight about sex as Mom. I doubt if Queen Victoria was this uptight.

Mom can no longer bathe herself, or at least, she needs assistance. The first time Mom had a shower, she called me up and told me a man had bathed her. I had two problems with this:

  1. I hear in the news quite frequently that people young and old have been sexually assaulted in institutions. Sorry guys, but it's always a man.
  2. My mother was not treated with the dignity she deserves. She should have been asked if this would bother her.

I made a phone call, and now a female bathes her. I told her that should a man ever show up to do the job again to tell him to go away and give me a call.

I discussed this with a friend of mine, and she said, "Well, there were women showering my father in the nursing home." I don't know where his mind was at the time. He lived to 102 years old. I also feel our father's deserve to be treated with dignity as well.

I asked my friend if she would want a man bathing her. Her answer was no.

I repeat: The elderly deserve to be treated with dignity like everyone else.

Treat Nursing Home Staff with Dignity

They Deserve It Too

It's important to give the staff the recognition they deserve. Changing adult diapers is not my idea of a fullfilling career. Nursing homes are often understaffed, and the pay is low. When you see that your parent is getting great care, let the caregiver know it. Treat them with respect and try not to be unreasonable.

When I mention some of the problems I've encountered with my aunt and my mother, my two best friends jump on me. They've gone through having their parents in a nursing home. I'll get a lecture from both of them something like this:

"Oh, I tell them what a great job they're doing all the time. That way they'll give mom special attention."

"I take them special treats all the time, because they'll appreciate it and take better care of mom."

Well, I do the same thing folks when it's deserved. But when something isn't going right, that is the time to assertively confront them and get the problem taken care of. Don't be shy. Go to the head person. I've learned that that's the only way to get things done. It doesn't mean you have to be nasty and rude. Just be assertive, and let them know you're watching them.

Protect Your Loved Ones Safety

Watch for Red Flags

The first home that my aunt was in had a sign on the wall saying that if they received too many complaints, the resident would be moved to another nursing facility. They did it too! Red flag! This nursing home has the lowest rating in the entire city. Red flag! I met a nurse at a class I was taking. She happened to be the supervising nurse at another nursing home. She told me that she had never heard anything good about the home my aunt was in. Red flag! Here are some cautionary tips to follow:

  • Research and visit nursing homes before you choose one.
  • Ask if they hire staff with criminal records. Many of them do.
  • Don't let them bully you. If you feel that your parent needs to go to the hospital, don't back down. Get it done.
  • Pay attention to the environment when you visit. Is there a strong urine smell? Is it dark inside with very few lights. Find out about the food they serve. Is it tasty? A very good home that my aunt was in had the worst food on earth. I mean it was bad.
  • Find out who is going to be taking care of your parent's personal needs such as help dressing, showering, etc. If it's someone of the opposite sex, and you know he/she will be uncomfortable with this, insist on having a person of the same sex help them. (Remember there may be people with criminal records working in the facility.)

The most important thing is this: Visit the nursing home frequently and at different times of the day. This let's the staff know you are watching they're every move. Get to know the people with the most authority. Social worker, nurses, aides, etc.

This past year the state of California passed a law banning people with criminal records from working in nursing homes. The same law was up for consideration in Kentucky. Kentucky turned it down.

Your parent's belongings will get stolen. Hearing aids, glasses, cell phones, clothing, etc. All of these items with either my mother or my aunt disappeared. Inform the person in charge if this happens. My mother is missing items of clothing. We've tried tracing them, but they're nowhere to be found. In the meantime, Mom is driving me crazy about getting these items back. She won't drop it.

 

Updated: 03/19/2013, BrendaReeves
 
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BrendaReeves on 12/12/2013

Thanks for the comment. Yes, I am right!

ologsinquito on 12/07/2013

My grandmother used to go visit relatives in nursing homes who had no one else left, because she was convinced if the staff saw some family member present, they'd be more careful. You are so right about thinking doctors are like gods. Once we do, we're in dangerous terrain.

katiem2 on 03/20/2013

It is heart breaking and yet all to common.

BrendaReeves on 03/20/2013

You are so right. It's sad to see the ones who put there parent in a nursing home and never go to see them again.

katiem2 on 03/20/2013

Yes she had a difficult time. I did get involved from the beginning, called to speak to her nurse when I couldn't be there and in general let the staff know I loved and cared about my Mom and would be a constant source of support with full involvement. I believe this makes a difference in the care of anyone in a nursing facility. It helps the staff connect and bond with both the parent and the family a win win for everyone. :)K

BrendaReeves on 03/19/2013

Thank you Georgette. What I have discovered with doctors is that they make there diagnosis based on text book cases.

BrendaReeves on 03/19/2013

I didn't realize your mom also had Parkinson's, Katie. It will take some time to heal from your loss, but it will come. Thanks for reading.

BrendaReeves on 03/19/2013

Thank you so much Robin. With all of us baby boomers in this position now. Maybe you're right. I was driving home from a class tonight and got to thinking about other things I should have included. Although it is easier on me with her in the nursing home, my job as caretaker isn't over, because I have to keep an eye on her to make sure all her needs are met and she's not being abused. That's an article in itself. I might get started on it tomorrow.

frugalrvers on 03/19/2013

Brenda,
This is such a necessary article - a topic that is so often not discussed, yet is more important than the majority of articles any of us could write. So many families are torn apart emotionally when it is time to advocate for a loved one in a hospital or nursing home...and the "doctors are gods" makes it almost taboo to talk about...what rubbish! Maybe you could do a series on the topic...so many families are accepting they may have to move a loved one into a nursing home and have no idea where to begin, what to look for, how to help the loved one. You've been there, done that, from home to nursing home. I see a great series (or blog) that takes this gigantic transition and breaks it down into tiny thoughts/experiences to help people cope and learn what to expect and how to do it! Great article, Brenda....

georgettejohn on 03/19/2013

Katiem, I am glad you were able to be with your mom in her final hours on earth...My thoughts and prayers are with you. I pray that your happy thoughts and memories help you during your most difficult times with your recent loss.
Brenda, I too stopped in at the nursing home to see my grandfather at a variety of times, numerous times every day. I believe "not knowing" when your expected does make a bit of difference in the care your family member receives or at the least, in the amount of time they wait for assistance.
I do NOT take the word of Doctors as gospel ( article: accident & lessons learned, tramatic brain injury). The one article I didn't write yet involved the same accident....it took 8 days for my daughters C2,C4 and C6 fractures to be diagnosed properly....had she coughed or sneezed during the time she would have either died or been paralized. The doctors kept telling me I was overreacting "whiplash is painful". FINALLY someone listened and redid the cat scans and then there was utter panic as they prepared her to be transferred to a hospital with a trauma unit in another state. I do not understand why people put so much faith in Doctors without trusting their own instincts! Great Article!


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