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deaf elderly furosemide hearing aids. dementia hearing loss Lasix lymphedema

YOU AND ELDERLY PARENT SHOULD LINGER OVER BREAKFAST

I am now going on Year Five of caring for my father. In a few short months, he will turn 94. Looking back, I appreciate the many lessons about aging that I have learned.

The hardest lesson came when my father was treated for swelling in his legs. It was so severe, he was prescribed massive doses of Lasix, generically known as furosemide. For a long time, he was miserable, trying to keep up with the constant trips to the bathroom. It sapped all of his energy.

But he was lucky. His saving grace was his vascular nurse, who recognized that he actually had lymphedema. Once she got him the proper treatment for this, he was no longer on Lasix.

Unfortunately, by that time, the diuretic had damaged his hearing to such an extent that my father was told he needed a cochlear implant. Given all of the medical issues he has had in the last year, he confided that he just wasn’t up for more surgery. In lieu of that, he opted for more powerful hearing aids.

But here’s a little secret about hearing aids for people who don’t wear them. Just like people who have eye problems don’t always have 20/20 vision with glasses, people with hearing loss sometimes experience difficulty even with hearing aids.

What does that do for an elderly person? It creates a sense of isolation. If you can’t participate in conversations, you are cut off from your social circle. And it can also create great challenges, especially when you are in a situation where things are going on around you and you aren’t able to properly process the limited information you have at hand.

This became especially troubling for my father when he was hospitalized a few months ago with pneumonia. The medical staff often ignored him and his hearing limitations. A few young nurses called to him from the doorway of his room, to give him instructions. They assumed he heard them when he didn’t. One made the mistake of telling me that my father was “a little forgetful”. I informed her that you can’t forget what you never heard. I finally had to tell the physician in charge that the staff was not adhering to the Americans with Disabilities Act. Deaf patients are entitled to “effective communications”. They need to understand the medical procedures that are planned for them. And that means that if necessary, every doctor who wants to treat that patient must provide information in writing or have a representative make sure the patient understands his or her medical plan.

What the hospital staff didn’t know is that I have a significant hearing loss. I grew up lip-reading, so I know all of the tricks of keeping up in a hearing world without having normal hearing.

And there are tricks. First and foremost, it’s imperative that you get up close to your elderly parent and lean in, to be sure he or she actually hears what you say. In a quiet room, it’s often fairly easy to carry on a two-way conversation. But the minute the acoustics change or there is a great deal of background noise, all is lost. That is when deaf people really struggle to keep up. When the brain takes in minimal information or misinterprets it, it can cause all kinds of communication problems.

One of the most important things I have done with my father is to linger over breakfast. Why? Because that is the time we sit with the newspaper. My father often reads stories aloud to me that have caught his attention. It gives us a chance to discuss current events. There is a back-and-forth that involves him sharing his thoughts and views on a wide range of subjects, from politics to local events to sports and entertainment.

You might think this is similar to watching television together with the closed captioning on and chatting about what you experience, but it’s not always the case. If you read a story in a newspaper, it’s all there in black and white for you to see. But closed captioning doesn’t always capture dialogue accurately. It’s an assistive device that enables me to follow the gist of a show, but it’s not perfect. I am often so distracted by reading the captions that I miss the action. If I focus on the action, I miss the captions.

Hence, I don’t rely on my hearing to hear. Does that sound strange? I don’t rely on my hearing to hear. It’s true. I rely heavily on my eyesight to help me see what people are saying to me.

But what happens if your loved one cannot see well, as is the case for my father? His ophthalmologist said there was no point in getting prescription glasses because they don’t make anything clearer for him.

Yes, as our parents get older, their physical senses really can dull. They struggle to function in the world without the full range of perception.

A case in point? The other night, I was watching a television program while I was working. During the commercial, I whisked the dog outside to do his business. What my father saw was me hurrying away with the dog. When I came back, I found him in a worried state. He mistook my rush to get back to my TV show as a sure sign there was something terribly wrong with the dog. That cause him great distress until I reassured him that the dog was just fine.

That’s the trouble with growing old. The world moves faster than your senses do, and it can be very difficult to accurately interpret your surroundings.

That’s why I linger over breakfast with my father. Or whenever I am doing something that puts me in close proximity to him. I make an effort to converse as often as possible. It’s a way to connect with him on physical, mental, and emotional levels.

But it also serves another purpose. It allows me to check for signs of dementia. People with significant hearing loss often begin to lose their faculties because they are cut off from the rest of the world. By constantly engaging in discussions, even those that might be very loud to people with normal hearing, I can see how well my father is able to apply logic and reason to comprehend his world, and more importantly, his environment, especially with all of the challenges that his health presents.

When he is frustrated by his circumstances and believes nothing can change, I push him to express his frustrations. That is the only way I can figure out how to amend the situation. I can’t fix every problem for him, but I can and do regularly look for adjustments and adaptions we can utilize to keep him engaged and involved in his own life. That is what quality of life is all about.

So, if you are caring for an elderly parent, take the time to have interesting conversations with your mom or dad. Gauge how well your parent is coping with the challenges he or she faces. And above all else, recognize just how debilitating it can be to become isolated by the loss of physical senses. Work hard to keep your loved one functional, because that is the very essence we human beings rely on to feel that life is worth living.

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#BCSM advanced breast cancer Alicia Staley caregiver Dr. Deanna J. Attai elderly Jody Schoger palliative care

Advice Columnist Puts Breast Cancer Patient at Risk with Bad Advice

Problem: A 75-year-old friend has experienced a serious health decline. The elderly woman is battling breast cancer. Reader contacts nationally acclaimed advice columnist, worried that the friend has dementia.

Symptoms: The patient forgets to eat, which leads her to lose consciousness in public. She has been hospitalized for malnutrition and dehydration. She is forgetful and repetitive in her conversations and written communications. She appears to be increasingly frail and unkempt.

Patient’s support system: Never married and without children, she has one sibling, who is aware of her decline and wants her to move to a “retirement community”. Other possible support comes from the reader and associates at the company that formerly employed the elderly woman. They want to suggest that she hires home care help while she considers a “retirement home”.

Advice columnist’s view: Talk to the friend (who is having communication issues and may not comprehend). Do some research through the local office on aging and present the patient with options that will allow her to remain at home (assuming the dementia diagnosis is accurate). Try to visit frequently. Do things with the elderly friend. And if things are dire, contact the sibling (presumably to intercede).

On the surface, it all sounds like a good working plan, except for one thing. The 75-year-old woman is battling breast cancer.

In the past year, I’ve lost two family members to cancer. I’ve also been there for two cancer surgeries for another relative. And, sadly, I had a beloved relative who had advanced breast cancer that was never diagnosed, despite multiple visits to her physician and complaints. When that breast cancer spread to her bones, every bit of her body ached and she suffered enormously. She could have been helped by proper cancer care, but because she was elderly, she was treated for age-related issues. That is a lesson I will never forget, because the people who loved her were unable to help her. When the aches and pains an elderly person experiences are chalked up to arthritis, dementia, or any other age-related issue, that patient will not receive the appropriate treatment. There will be no palliative care for the pain, no treatment for bone mets, and no help with issues such as nutrition and hydration.

So, what did I do when I read the advice from the nationally recognized advice columnist? I contacted her, pointing out the very real possibility that the problems the elderly woman was experiencing were actually the result of the breast cancer. It might have invaded her brain. That’s not an unusual thing with breast cancer, is it?

There is also the very real possibility that the decline in mental function was the result of powerful chemotherapy drugs and/or other treatments. Many breast cancer patients are familiar with the annoying and debilitating effects of “chemo brain.”

Anyone familiar with cancer patients and the challenges they experience knows that the malnutrition and dehydration issues raised by the reader can be symptomatic of the breast cancer. That’s why many cancer centers have nutritionists that work with families to assist in providing nutrition to the patient that is tolerable under the circumstances.

And let us not fail to consider that this 75-year-old breast cancer patient could be depressed with her circumstances. Having breast cancer can bring the strongest of us to our knees. I have a number of friends who are breast cancer survivors, married and single. They have shared their insights in ways that are now permanently etched on my mind and in my heart. Having breast cancer can be a very lonely, isolating experience. Good support is critical in surviving the brutalities of the disease.

The response to me from this nationally acclaimed advice columnist was less than stellar. She was offended. She took umbrage at my response to her advice. She tossed in a tiny little, “could be the cancer”, which was apparently meant to make her appear to be flexible on the subject. But she stuck to her guns that her advice was appropriate. It wasn’t. Why?

By sloughing off the 75-year-old woman off as being elderly, she had actually provided harmful, not helpful, advice (which raises the question of liability should the 75-year-old breast cancer patient be involuntarily hospitalized for dementia if the cancer is causing the problems). She allowed the “dementia” label to stand. She didn’t correct the reader or open the possibility of some simple ways to help the cancer patient.

What would be MY advice? First and foremost, if a woman is battling breast cancer, recognize that’s a medical diagnosis. That means somewhere, at sometime, an oncologist has treated the disease. We also know the patient has been treated for malnutrition and dehydration in a hospital. Is she still being treated or did treatment end? A scan could reveal a brain tumor pressing on the part of the brain that involves executive decision-making, for example. That’s not a matter of guessing that the patient has dementia. That’s a medical opinion backed up by scientific testing. Has that been done?

Hospitals and medical centers who treat cancer patients normally have cancer navigators, patient advocates, social workers, and a myriad of other support services that can assist a 75-year-old woman who lives alone, but has people to care about her. There is no need to go to the local office on aging for advice on anything.

But there’s a glitch, a very big one. HIPAA laws prevent unauthorized people from getting information on a patient’s situation, and rightly so. Obviously, the reader and her associates can’t call the medical center to find out how they can help. The 75-year-old breast cancer patient’s sibling might be able to do so, however. Normally, if someone is that debilitated by illness, a relative is essential in helping to navigate medical treatments, insurances, and other related issues. What is his involvement? Does he have power of attorney? Does she have an independent conservator? Who is helping this woman get through her treatments (or is she struggling on her own)? That’s the “go to” person. Every cancer patient needs one.

Thus, the best starting point would be finding out who is the “go to” person for the elderly friend. Who accompanies this woman to her treatments? Or has she been struggling with this issue by herself? Has she stopped treatments because she’s been too debilitated to get herself there? Is she terrified she’s dying and in denial? The reader and fellow co-workers could offer to drive her to and from treatments, couldn’t they? They could volunteer to stay with her during her treatments. They could be there when the side effects sideline her. They could find some positive ways to improve the quality of life for the patient that address her real needs, not her assumed needs. But they need to know who the “go to” person is and coordinate.

The minute anyone reads that a person with a cancer diagnosis has experienced a decline, it automatically becomes a medical issue. Whether it’s the cancer, the complications, or the stress of the disease, it’s critical to properly assess the patient’s condition, setting, support system, and services. No 75-year-old woman should be assumed to have dementia based on the observations of well-meaning, but untrained lay people.

The greatest danger that this 75-year-old woman faces is that she will be placed in a skilled nursing facility by her sibling because it is assumed her mind is failing due to dementia. If the real problem is that her breast cancer has metastasized, she could suffer through what remains of her life. She could be medicated with drugs used to treat dementia and not treated with drugs that would provide comfort at the end of life.

But the one point I would make here is that we don’t know what kind of relationship this 75-year-old breast cancer patient has with her cancer team. For all we know, they have done all the tests, diagnosed the disease accurately, and treated the patient humanely. If that is the case, perhaps what this patient really needs is the love and support of family and friends. Maybe she doesn’t know how to ask for it. Maybe she doesn’t know she can get it. So often, communication is a critical tool for a cancer patient, whether it’s talking to the oncologist or explaining problems outside the hospital setting. That nationally acclaimed advice columnist should have suggested that the reader and her associates find out more about how to help a woman dealing with breast cancer. There are plenty of good resources for that, ranging from The American Cancer Society to #BCSM, better known as Breast Cancer Social Media, formed by the late (and wonderful) Jody Schoeger and her social media partners, Alicia Staley (a great cancer advocate better known as Awesome Cancer Survivor) and Dr. Deanna Attai, a well-respected surgeon on the UCLA Breast Care Team.

I mentioned Jody Shoeger because I had the pleasure of interacting with her at a cancer blogger conference out in Arizona several years ago. She was the epitome of a wise and caring counselor for breast cancer patients, often reaching out to those who felt marginalized, isolated, and alone. She taught me about making assumptions one day, by correcting me — not all breast cancer patients have adequate support. I will never forget one post from her. She let a breast cancer patient anonymously share her painful personal story of being shunned by her husband once she was diagnosed. I have never been able to let go of that tale. It follows me wherever I go. It makes me determined to speak for those who don’t have the strength or the confidence to ask for help. I owe it to Jody now to share this with you. If you know a woman who is battling breast cancer, don’t throw your money into all things pink. Reach out and help in real ways. Learn what life is like for breast cancer patients and find out what you can do to help improve quality of life for a woman who is struggling. That’s what a real friend does.