Category Archives: Awareness & Activism

Dying with dignity shouldn’t be so difficult

The last week my mom’s health has taken a steep decline. Barring some miraculous turnaround, it is fair to say she is actively dying.

Hard to believe this photo was taken just a little over a month ago.

Hard to believe this photo was taken just a little over a month ago.

While I have prepared myself for this moment, and have seen it coming for awhile, what I didn’t necessarily expect was how difficult it would be to just allow someone to die in peace and comfort.

I literally had to run all over town just to get prescription paid medicine for my mom. I know new regulations on controlled substances took effect this year, but frankly, if an addict wants narcotic pills they are going to get them no matter what. In the meantime, those who are legitimately in pain have to suffer.

The doctor made me go in person to pick up the prescription. They said they required a family member to pick it up, even the nurses at the home care agency my mom uses were forbidden from picking it up. Guess it’s good I just arrived in town! There is no way my mom could have made it to the doctor’s office.

There are plenty of pain-ridden people who live alone, what do these poor souls do?

And while I don’t necessarily want my mother to waste away in a hospital setting, I am surprised that the doctors keep sending her home from the ER. Uncontrollable pain, emaciated, can barely ambulate … I mean, geez, what does it take to be admitted to the hospital these days? The doctor told her she didn’t qualify for an inpatient stay under the new strict guidelines.

So we are starting hospice, but her overworked doctor has to sign off on it. I’m not too hopeful that it will be done quickly. While her doctor was off last week, my mom had no pain medicine and being cut off cold turkey really sent her health reeling into a death spiral.

So much red tape and regulations are getting in the way of treating people who are suffering with some form of dignity.

Family caregivers shouldn’t be left feeling helpless and devastated as they watch their loved one suffer needlessly.

I hope we can work together to advocate for better end-of-life treatment.

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Guest article: The Disease of Forgetfulness

By Jami Hede of Exploring Dementia

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In 1901, German neuropsychiatrist Dr. Alois Alzheimer took up a position at the Institution for the Mentally Ill and for Epileptics, in Frankfurt, Germany. One of the first patients he examined there was a woman named Auguste Deter, who was 51 years old. Just a few years previously, Frau Deter had been a happy wife and mother, living a normal life for the time period. But then she began showing symptoms of memory loss, trouble sleeping, delusions, temporary vegetative states, dragging sheets around the house, and screaming for hours in the middle of the night. Poor Karl Deter had no choice but to admit her to the institution, because he just couldn’t care for her any more, and also continue to work to support their daughter.

In 1996, Frau Deter’s actual medical records were discovered, written in Dr. Alzheimer’s own handwriting (and her own, at times). The neuropsychiatrist made careful and accurate transcriptions of his interviews with his patient, and a short excerpt of them is given here:

“What is your name?”
“Auguste.”
“Family name?”
“Auguste.”
“What is your husband’s name?” – she hesitates, finally answers:
“I believe … Auguste.”
“Your husband?”
“Oh, so!”
“How old are you?”
“Fifty-one.”
“Where do you live?”
“Oh, you have been to our place”
“Are you married?”
“Oh, I am so confused.”
“Where are you right now?”
“Here and everywhere, here and now, you must not think badly of me.”
“Where are you at the moment?”
“We will live there.”
“Where is your bed?”
“Where should it be?”

Dr. Alzheimer asked Frau Deter many questions, including a test of her memory, and also asked her to write her name. She attempted the latter, but repeated, “I have lost myself.” She was then put into an isolation room, and when released ran out screaming, “I do not cut myself. I will not cut myself.”

In subsequent writings, Dr. Alzheimer described his patient as having no sense of time or place, and poor recall for details of her life, made frequent irrelevant and incoherent statements, had rapid and sudden mood changes, and often “accosted” other patients (who would then assault her). He indicated that he had previously seen patients who showed similar behaviors, but they were much older than Frau Deter. He used the term “presenile dementia” to describe her, and stated that she had the “Disease of Forgetfulness.”

In 1902, Dr. Alzheimer took up a position in Munich, where he worked with another neuropsychiatrist named Dr. Emil Kraepelin. (Dr. Kraepelin is quite well-known, in his own right, for work in the area of schizophrenia and other disorders.) He continued to follow Frau Deter’s case, however, and in 1906 was notified of her death, apparently due to sepsis related to an infected bedsore. He requested that her medical records and her brain be sent to him for further study. It was upon examining her brain that he discovered the neurofibrillary tangles and plaques which are now considered characteristic of the disease.

Dr. Alzheimer gave a very significant presentation to the 37 Conference of South-West German Psychiatrists, in November of 1906, in which he discussed the case of one Auguste D. The following year, he published an article in which he described “A serious disease of the cerebral cortex.” However, the person who first coined the term “Alzheimer’s Disease” was Dr. Kraepelin, and not Alzheimer. He first did this in writings published in 1910.

And the rest is history, as they say. Now, the disease which bears Alzheimer’s name is the most common of many different forms of dementia which have been reported since his time.

Source material is from Wikipedia, “The Lancet,” and others. For more informative articles about dementia, visit Exploring Dementia.

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A simple act of kindness is often greatly appreciated

Recently, I visited my mom. It was the first time I would be meeting her personal caregiver. I’ll call her Debbie (not her real name.) Mom had raved about how wonderful Debbie was and how much she liked her.

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We’ve all heard horror stories about the other kind of caregivers, those who steal from clients or abuse them. I was relieved that Mom was happy with her caregiver. I think the service has lifted her spirits and helped take the burden off of her when it comes to housekeeping and grocery shopping. In short, personal attendants can help my mom live independently longer.

Debbie made me comfortable immediately. She is warm and kind and doesn’t let Mom get down on herself. But she also isn’t fake in her positive thinking, instead she is encouraging. She is an ideal match with my mom, who is set in her ways and finds changes in routine stressful. Debbie knows how to keep my mom on the right track.

I thought the least I could do was get Debbie a thank you card, to let her know I appreciated her taking good care of my mom. Apparently it’s a struggle to keep gas in the car on her wages, and she doesn’t get reimbursed for mileage. She was one of the few people who was almost looking forward to jury duty, because it would pay the same/better than what she earns normally!

So I gave Debbie the card and she told my mom later that she was so touched that she cried after reading it.

Caregiving is a job where you may not receive much thanks or positive feedback. Showing a bit of appreciation can go a long way.

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Determination in the face of disease

This week, Richard Glatzer, the co-director of “Still Alice,” died. He was only 63 years old. He had been courageously battling ALS since 2011, another debilitating disease that like Alzheimer’s, takes so much from a person and is devastating to watch as a family.

Glatzer saw the connection too, telling NPR that he almost didn’t want to adapt Lisa Genova’s book for the big screen, because it cut too close to the bone.

Embed from Getty Images

But it was Glatzer’s personal connection to independence-robbing illness that gave “Still Alice” a greater authenticity. The movie focused just as much or more on what the main character, dealing with early-onset Alzheimer’s, was feeling about her condition as it did about her family’s reaction to her declining mental state. This is the book’s running theme, and preserving that in the film offers a much more impactful experience than making it just another family illness drama.

But what impressed me most about Glatzer’s direction was his determination. Glatzer used a text-to-speech app on his iPad with one finger to communicate during the film’s shooting.

The next time I make excuses about not focusing upon my personal writing, I’m going to think of the fearless determination that those with devastating illnesses demonstrate, as they strive to leave their mark on the world or accomplish a personal goal before they depart.

 

 

 

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The constipation chronicles

All of those health experts weren’t kidding when they kept saying, “Eat your fiber.”

If you are caring for a senior now, carefully monitor their fiber intake. The typical American diet is woefully deficient in fiber.

My mom actually eats healthier than most people her age. Lots of vegetables, oatmeal, nuts, etc.

Slice of brown bread

But [and pardon if it is TMI] constipation has been the bane of her existence this past year.

And the bane of mine.

Last week was a very busy week, as I’m training someone new at work. I’m working late night weekend shifts at the moment, and of course, there was the time change. I knew I wasn’t going to get much sleep Sunday. I finished work after midnight (which I was already computing in my mind as 1am.) It was after 2am when I went to bed.

Then my phone started buzzing at 5:50am. Mom.

Of course, my heart started pounding as I rushed to answer the phone from a dead sleep.

Mom said her stomach hurt and was bloated. She couldn’t sleep. Yes, she may have skipped her tea (a fiber/stool softener liquid that was prescribed for her) one day.

I told her to take some Milk of Magnesia and tried to go back to sleep.

I’m still convinced there is something else besides old age causing Mom’s irregularity, but it has become a chronic health issue that must be managed aggressively.

Many medications and common health issues can cause constipation, and it can cause a great deal of suffering.

There are many ways to add fiber to the diet, from supplements to naturally high in fiber foods. The key is finding sources of fiber your loved one enjoys (or at least tolerates) on a consistent basis.

How have you dealt with this problem as a caregiver?

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Guest article: Dealing with geriatric depression

By Jesse Waugh

It is normal to experience grief when facing major life changes.

However, for older adults, drastic events can lead to extreme sadness and, ultimately, clinical depression.

Approximately 15% of the elderly suffer from this condition.

If left untreated, depression can last for months and take a toll on the immune system, making the afflicted person mentally and physically weaker.

A geriatric psychiatrist can tell if a person is depressed or experiencing bouts of loneliness and helplessness.

sad senior man

What are the warning signs of clinical depression?

If you think an elderly friend or relative suffers from depression, look for warning signs. There are several health indicators that suggest persistent feelings of sadness.

Withdrawal from society – It is common for elders who experience depression to avoid social situations, even with close friends and relatives.

Loss of self-regard – Putting off personal grooming and proper hygiene may suggest a feeling of detachment and could be a sign of the early stages of depression.

Increased irritability – Sudden drastic changes in an older adult’s mood may suggest the outset of depression.

Amplified physical pain – Contrary to popular belief, depression affects both the mind and the body. Since it weakens the immune system, it can increase physical pain.

Older adults who have suffered from a serious disease or are recovering from a surgery may also be susceptible to depression.

Studies show that around 15% of older patients experience episodes of sadness after they are discharged from the hospital.

What can you do to help?

Keep in mind that depression is an illness. It is much more serious and damaging than grief or sadness. If you suspect that someone suffers from it, keep an eye out for the symptoms or warning signs mentioned above.

Do not attempt to control their lives. If you do things for them that they can do by themselves, you might strengthen their perception that they are helpless or incapable. In fact, many aged care homes do their best to make their guests feel at home and in control of every important aspect of their lives.

Talk to them. This is a good way to alleviate depressive episodes. Just be indirect when you open up the topic of depression. Instead of saying it outright, ask them how they feel. Even if they tell you that they’re fine, they may unknowingly drop hints about how they truly feel.

Basically, you must understand the situation they’re in, and do your best to help them cope with the bouts of extreme sadness. Perhaps one of the most helpful things you can do is keep them company. Loneliness may also be connected to Alzheimer’s, so be there for them when they need you.

Many older adults have successfully recovered from depression without intervention. However, it is best for friends and family of the afflicted person to look into professional help and build a support network. Compassion, empathy and sensitivity can go a long way in the treatment of elderly depression.

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Spotlight on devastating diseases at the Oscars

I’ve heard a lot of criticism about this year’s Oscars regarding the lack of racial diversity of the top nominees. But from my perspective, there was quite a bit of diversity when it came to showcasing people living with debilitating diseases. For image-conscious Hollywood, and its obsession with being forever young and perfect, I think this was a big step in the right direction that is being overlooked.

Of course, with my main focus on Alzheimer’s, I was thrilled to see Glenn Campbell’s final song receive an Oscar nomination. I’m not a Tim McGraw fan, but he did a beautiful and sensitive rendition of the song. Gwyneth Paltrow introduced McGraw and talked about Alzheimer’s.

BSM Studio/Sony Pictures Classic

BSM Studio/Sony Pictures Classic

Julianne Moore, as expected, won best actress for her portrayal of a woman with early-onset Alzheimer’s in “Still Alice.” I was thrilled, as she is one of my favorite actresses. She researched and spent time with those who have Alzheimer’s so she could deliver an authentic performance. During her acceptance speech, Moore talked about making Alzheimer’s more visible to the general public so we can raise awareness.

But there was more than just Alzheimer’s represented at the Oscars. The equally devastating disease, ALS, was also in the spotlight. Not only did the best actor award go to Eddie Redmayne, who portrayed the famous physicist Stephen Hawking in “The Theory of Everything,” but Richard Glatzer, one of the directors of “Still Alice,” is living with ALS. In fact, Moore mentioned during her acceptance speech that his condition prevented him from being at the Oscars.

So to many, the Oscars may have been boring and lacking in diversity, but for those of who have been touched by one or both of these terrible diseases, it was a night to remember.

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Movie review: ‘Still Alice’ offers haunting, devastating look at Alzheimer’s disease

I read Lisa Genova’s fictional account of a professor diagnosed with early-onset Alzheimer’s disease quite a while ago, and was quite moved by the novel. I was excited to learn that Julianne Moore, one of my favorite actresses, was playing the lead role. It is rewarding to see the film receive so many positive reviews, and Moore collect many awards and accolades for her sensitive portrayal of the main character. The fact that one of Hollywood’s most respected actresses took on this role and is now receiving Oscar buzz will hopefully help raise awareness.

Some have questioned the focus on the familial form of early-onset Alzheimer’s disease, which is quite rare, but I think there is value in showing the general public that Alzheimer’s is not just an “old person’s” disease. The more readers and moviegoers can sense how profoundly this disease can destroy someone at the prime of their life, and the devastating impact the disease has on families, hopefully the more donations will come in for research and care funding.

BSM Studio/Sony Pictures Classic

BSM Studio/Sony Pictures Classic

It’s worth noting that one of the film’s directors, Richard Glatzer, has ALS, another disease that slowly robs one of their independence.

I went to see the movie on a Monday afternoon, and was pleasantly surprised to see about 30-40 other theater patrons. I expected only a handful. Let’s face it, the movie is not escapist, blockbuster entertainment.

I thought Julianne Moore offered a very sensitive and realistic performance. She spent a lot of time talking with those who have early-onset Alzheimer’s disease, as she was determined not to show anything in the film that was not accurate. The movie mainly follows the book, with some changes that I didn’t think hurt the story.

As for the rest of the cast, Kristen Stewart was well-cast as the youngest “black sheep” daughter. What I found most profound about the film was that Alice so wants her youngest daughter, who is an aspiring actress, to be like her other children (one’s a lawyer, the other in med school.) Before the disease, she cannot see how her own profession, as a linguistics professor, is more closely aligned to the theatre world than law or medicine. As the disease progresses, Alice and her youngest are able to bond over language, even as Alice is rapidly losing her ability to communicate.

I thought Alec Baldwin was miscast as the husband but he gave a surprisingly restrained performance (not easy for him!)

So definitely a must-see. Perhaps because I read the book and knew what was going to happen, I didn’t find it to be a total tear-jerker, but it did leave me profoundly moved.

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Interesting self-analysis of Alzheimer’s from Greg O’Brien

NPR recently featured an interview with Greg O’Brien, a journalist with early-onset Alzheimer’s.

I found O’Brien’s personal take on Alzheimer’s quite profound.

I like how visually he described the disease, saying, it is like “a plug in a loose socket” that you keep trying to plug in but eventually it stops working and the light goes out.

On Pluto by Greg O'Brien

On Pluto by Greg O’Brien

The one point that really struck home with me was when he describes how having Alzheimer’s disease forces you to find your own identity each and every day. He says the pieces of his self-identity, the who, what, when, where and how are like cards carefully arranged in a file cabinet.

“Then at night, someone comes in and they take all the files out and they throw them all over the floor. And then you wake up in the morning and say, “Oh my God, I have to put these files back before I realize my identity.”

I thought that was a very simple yet powerful way to sum up this disease.

O’Brien has written a memoir, “On Pluto: Inside the Mind of Alzheimer’s” and I plan on reading it soon.

If you have read the book, I would love to hear your thoughts.

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Guest article: Dealing with dementia: What caregivers need to know

By Jesse Waugh from Daughterly Care

Have you been given the rewarding yet challenging task of caring for a loved one with dementia?

Undoubtedly, caring for someone with the affliction can be very demanding both emotionally and physically.

An overall term to describe a dramatic decline in one’s mental ability, dementia can be severe enough to interfere with the patient’s day to day existence.

The following tips will help you care for a patient with dementia effectively, while helping them transition into another phase of their lives with less difficulty.

elderly_woman

Communication
In most cases, people with dementia will find communicating utterly demanding.

Chances are, they will find it difficult to verbalize, write and express their emotions in general.

In some instances, they have the tendency to also lose sight of conversation basics and might end up ignoring or interrupting you in the process.

Bridge the ‘communication gap’ by keeping in mind the following basics.

• Keep calm at all times and give them sufficient time to comprehend what you are trying to say and wait for them to respond to you.
• Make use of touch and other positive body language when communicating and make it a point to remain consistent in your approach.
• Always opt for simple and short sentences when trying to get your message across. Also, try not to argue and be condescending. Keep in mind that they still have emotions and feelings even if they might have difficulties understanding you.

Nutrition

Part and parcel of fitting elderly home care should involve carefully monitoring the patient’s drinking and eating habits.

There is a possibility for people with dementia to forget to eat and drink so keeping an eye on this key element should be considered vital.

Effectively manage their eating and other nutrition needs by taking the following pointers to heart.

• Ensure snacks and meals are offered on a regular basis. While not everyone has the same needs, 5-6 small meals a day is considered ideal.
• When possible, serve foods they are familiar with and patiently demonstrate chewing if the need calls for it.
• In most cases, patients tend to lose a lot of weight especially in the later stages of the disease. With this in mind, consider giving nutritional supplements. Consult a doctor or a dietitian so you will be given appropriate advice as to the supplements that might be helpful.

Aggression
While not true for all, there are instances when patients with dementia will exhibit some aggression tendencies.

Be on top of any possible outburst by practicing the following essentials.

• Inform friends, family and relevant health professionals if the patient displays any form of aggression.
• If fits happen repeatedly, try to observe so you can figure out what the triggers are. Once you identify what provokes the outbursts, it will be a lot easier for you to steer clear of those triggers.
• If the outbursts become frequent and unbearable, ask for professional advice so you will know how to manage it effectively.

While physically challenging and emotionally devastating, you can do much to help make dementia a bit more bearable for the patient. Equip yourself with all there is to know, seek the help and guidance of the right professionals, and you are on your way to managing dementia with ease.

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