Category Archives: Awareness & Activism

March 14, 2015 · 10:08 am

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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March 9, 2015 · 7:31 am

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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March 4, 2015 · 8:00 am

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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February 23, 2015 · 3:04 pm

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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February 11, 2015 · 8:00 am

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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February 2, 2015 · 3:48 pm

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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January 28, 2015 · 7:29 am

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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January 26, 2015 · 8:00 am

Guest article: Preparing for at-home care for a loved one with dementia

By Helen White, freelance writer

The decision to try at-home care for a parent or other close relative with dementia isn’t one that’s made lightly. It’s exhausting work, both mentally and physically, and it can be heart-rending for children of parents with dementia to see the changes that the disease brings. If you’ve made the decision, there’s a lot of preparation to be done, both in the home, to create a safe environment, and in the heart, to help you stay strong and able to cope with your new role as care-giver.

Simplifying the Home and Improving Safety

For someone with dementia, even the simplest everyday tasks and items can become fraught with difficulty. Simplifying the home, reducing clutter, and making spaces more accessible is hugely important to prevent over-stimulation and agitation, as well as accidents that may lead to physical harm.

  • Create “walking paths” so that there’s a direct and easy-to-follow path between each room. Remove or tack down any rugs on the floor.
  • Reduce household clutter, both to prevent accidents and to reduce the likelihood of over-stimulation caused by information overload.
  • Improve lighting to reduce dark spots and shadows, which can cause confusion and distress.
  • It may be helpful to label certain areas and items; for example a “bathroom” sign, and labels for kitchen drawers.
  • Add grab bars where applicable in bathrooms (e.g. for the bath, shower, or toilet) and add non-slip flooring or mats.
  • Consider child-proof locks for electrical devices and wall outlets.
  • Secure any rooms or items that are potentially dangerous or breakable—for example, the garage, basement, attic, or swimming pool, computer equipment, and machinery.
  • Add safety locks to any doors that lead outdoors, and install window devices to limit how far they can open.

shower chair

Preparing the home is sometimes a matter of trial and error: you don’t know how your loved one will react to certain things until they’re with you on a daily basis. Initially at least, focus your efforts on safety, and over time you may find there are additional changes you can make to the home to make things more comfortable and calming.

Setting Up a Routine

For someone with dementia, routine is incredibly important. Having a routine helps them make better sense of a world that is increasingly confusing, and it’s important that your loved one knows there are certain things they can rely on, like a mid-morning snack at the same time every day, or a favorite television program each evening. In situations where their loved one has become agitated, having an established routine can also help a care-giver get things back on track and help their loved one calm down.

  • A routine doesn’t need to be strictly regimented and fill up an entire day; it should just provide the day with structure. For example, it might include:
  • Opening bedroom curtains at the same time every morning to signal the start of a new day
  • Meals and snacks, and medications, at scheduled times.
  • Daily activity time, visitors, outings.
  • Shower or bath time before bed.
  • Playing a relaxing piece of music at bedtime.

Don’t Neglect Your Own Self-Care

Caring for a person with dementia is both physically and mentally demanding, particularly for non-professional care-givers taking care of family members. It’s a situation that can lead to exhaustion, burn-out, and even depression on the part of the carer, so it’s vital that you’re able to take breaks on a regular basis, including days and evenings off. So, as part of preparing to bring your loved one home, try and set up a schedule of some kind, to make sure each person who is acting as carer has sufficient time off.

Having a good support system in place from the start is also very helpful. For example, joining a support group for care-giving families can provide a means of expressing emotions in a safe and non-judgmental environment. This is hugely important, because it’s natural for care-givers to feel negatively-perceived emotions like frustration, fear, and sadness, and they need a safe outlet in which to express them.

References

A Place for Mom (March 2013). “Maintaining Dignity for Dementia Patients.” Accessed January 12, 2015. Caring with kindness.

Carol B. Larkin (May 2012). “A Guide to Safe-Guarding Your Home for Alzheimer’s Patients.” Accessed January 12, 2015. Simplifying home and routine.

Aging Care. “Senior Care Products.” Accessed January 12, 2015. Products for at-home senior care.

Help Guide. “Dementia and Alzheimer’s Care: Planning and Preparing for the Road Ahead.” Accessed January 12, 2015. Preparing the home.

Phillips Lifeline (May 2014). “Proper Dementia Care Can Help Patients Remain at Home Longer.” Accessed January 12, 2015. Benefits of at-home care.

Psych Guides. “Living With: A Family Member With Dementia.” Accessed January 12, 2105. At-home care.

Visiting Angels. “Preparing the Home for Senior Care with Dementia or Alzheimer’s. Accessed January 12, 2015. Home preparation.

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January 21, 2015 · 8:00 am

Book review: ‘Slow Dancing with a Stranger’

You know you are a caregiver or an Alzheimer’s awareness advocate when books like this appear on your Christmas wish list.

I had read positive reviews of the book, “Slow Dancing with a Stranger” by Meryl Comer, a former television journalist.

Courtesy: MerylComer.com

Courtesy: MerylComer.com

In this raw and honest memoir, Comer attempts to illustrate the “unvarnished reality” of Alzheimer’s while describing her life as the primary caregiver for her husband, a former esteemed NIH scientist who was diagnosed with early-onset Alzheimer’s in his late 50’s. He is still alive, 20 years later. Comer’s mother, who she’s always had a difficult relationship with, also has dementia and is still alive at age 94. The three live together, and a small group of dedicated caregivers work daily shifts to help with the care.

Comer tries placing her loved ones in facilities, but it is important for people to understand that not all Alzheimer’s patients are suitable for facility care, and that in fact, can be essentially “thrown out” if they are deemed a risk to themselves, staff, or other residents. Yet home care brings its own set of challenges, and neither road is an easy one to navigate.

I also think Comer does a good job of demonstrating that some people with Alzheimer’s don’t respond to the more positive therapy methods that are popular nowadays, such as music therapy, exercise, etc. Comer tries everything imaginable to reduce her husband’s anger and anxiety, but nothing seems to work. Comer’s husband has a form of Alzheimer’s that causes violent, physical outbursts, and both Comer’s husband and her mother were extremely manipulative, with her mother calling the police to claim she had been abandoned by her daughter.

I found beauty and awe in Comer’s resilience to take care of her loved ones in spite of all of the setbacks they faced together. Comer has given up her career and essentially her life to take care of her husband and mother. It’s a sacrifice that not everyone could make. To say this is a depressing book would be an understatement, but I hope it will help raise awareness of the debilitating emotional, physical and financial impact of this disease.

100 percent of the proceeds of the book will go towards Alzheimer’s research.

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January 11, 2015 · 2:58 pm

The beautiful and ugly world of Alzheimer’s

I read a lot of personal essays written by those who have been impacted by Alzheimer’s, but this one really moved me emotionally. It was published on Huffington Post and titled, “I Never Expected My Mother to Be Diagnosed with Alzheimer’s When I was 26.” Not only does the essay give us a glimpse into how the younger generations are being touched by this disease, it is beautifully written.

mirror person

In the essay, Rebecca Emily Darling discusses some of the upsides of her mother’s Alzheimer’s, such as a greater appreciation of ordinary things, and a nicer demeanor. Yet even these “benefits” are tinged with sadness, because they only illuminate how much the disease has changed the personality of her flawed but beloved mother.

The essay by Darling sums up the good and the bad of this disease so eloquently. If you have a chance to read it, let me know what you think.

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