Tag Archives: dementia

Dementia is a thief, but should caregivers be stripped of all joy?

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The complex emotional toll of Alzheimer’s has been in the news the past week. The Washington Post wrote an article about B. Smith, the model, restaurateur and lifestyle guru who has early-onset Alzheimer’s and how her husband has formed a relationship with another woman. B. Smith’s loyal fans were not happy about this development.

Dan Gasby tried to defend himself amidst withering criticism, saying in interviews that B. Smith told him to “go on” after her diagnosis in 2014. He says he’s a better caregiver to his wife now that he’s happier.

Gasby has at least one high-profile supporter: Patti Davis, daughter of Ronald Reagan. In her essay, titled, Alzheimer’s is a cruel thief. Don’t blame caregivers for still finding joy, she reflects upon the emotional devastation an Alzheimer’s diagnosis can bring and what that can do to a couple. She encourages the public to be more sympathetic to those in Gasby’s position.

The issue is at its heart an emotional gut-punch so the fact that it inspires heated opinions is not surprising. What I’ve learned over the years as a  family caregiver for someone with dementia is that I wouldn’t want someone to judge my choices and so I try to refrain from judging others, as long as no harm is being done. While I may not make the same choice as Gasby has made, I cannot rule it out completely either. Those who are outraged on social media would better use their energy volunteering at a memory care center or arranging respite care for a caregiver in their life.

As Patti Davis says, Alzheimer’s is a cruel thief. How much should we allow the disease to steal from caregivers?

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4 Disturbing Dementia Behaviors and How You Can Go From Frustration to Connection — The Imperfect Caregiver

This blog post by Bobbi Carducci is a good reminder on how dementia caregivers must learn a new way to connect and communicate with their loved one, as verbal skills begin to decline. She offers good tips on how you can manage some of the most difficult dementia behaviors.

Often the behavior of someone with dementia is so changeable and unpredictable it’s almost impossible to figure out what is going on, leaving the caregiver confused and frustrated. Why is your spouse confused with you and so alert when someone comes to visit? Why does your mother, who is usually calm and agreeable, suddenly become […]

via 4 Disturbing Dementia Behaviors and How You Can Go From Frustration to Connection — The Imperfect Caregiver

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January 31, 2019 · 9:19 pm

AlzAuthors releases anthology, hosting National Family Caregivers Month book sale

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November is National Family Caregivers Month. The National PACE Association says this year’s theme is “Caregiving Around the Clock.” If you’ve been a caregiver, you wholeheartedly agree with that theme!

AlzAuthors has two exciting promotions going on to mark the special month. First, the group of Alzheimer’s authors has released an anthology, Alzheimer’s and Dementia Caregiving Stories, featuring the personal stories of 58 AlzAuthors contributors. I am honored to be one of the contributors. The book will be released Nov. 7.alzauthors anthology cover

AlzAuthors is recognizing and honor family caregivers of those with dementia across the country by hosting a book sale and giveaway. The eBook sale will run from Nov. 7-Nov. 13. Books will range in price from free to $2.99, to help those on limited budgets access worthy books that can help them on their own caregiving journeys.

My book, The Reluctant Caregiver, will be on sale for just 99 cents during the promotion. The award-winning collection of personal essays offers a nontraditional view of family caregiving, and includes several essays about the challenges of caring for those with dementia.

This is the last AlzAuthors book sale of the year, so don’t miss out!

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Food And Alzheimer’s: How To Maximize Nutrition And Make Mealtimes Easier — The Diary of An Alzheimer’s Caregiver

Good tips here! While my dad retained a remarkable appetite when he was in the memory care center, when he landed in the hospital, his appetite dissipated. Caregivers should be prepared to “bend the rules” and let dessert be eaten first, etc. In the end, it doesn’t matter about the order of consumption, as long as your loved one is happy and eating.

Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! 97 more words

via Food And Alzheimer’s: How To Maximize Nutrition And Make Mealtimes Easier — The Diary of An Alzheimer’s Caregiver

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August 21, 2018 · 8:35 pm

Alzheimer’s and agitation: How caregivers can cope

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Photo by Gabriella Fabbri/Freeimages

Among the most disturbing and difficult behaviors for caregivers of those with Alzheimer’s to manage is agitation and aggression. Unfortunately, agitation and aggression are quite common symptoms, with almost half of those with Alzheimer’s exhibiting such behaviors, according to a 2008 study.

infographic-4_editedI witnessed the effects my father’s aggressive behavior had on my mother. Even though my dad was slim, when agitated he proved to be far more than my mother could handle. He still could pack a punch, literally, as when he hauled off and hit my mother in the chin with his fist. He claimed he was shadow boxing and she got in the way.

My father was eventually placed in a memory care center, in part due to his aggressive behavior.

Over the years, I’ve learned tips on how to best manage Alzheimer’s agitation and aggression. The key is that not every solution works for every patient; each case is unique. Here are some suggestions I found helpful:

  • Determine if agitation follows a pattern: For some people with Alzheimer’s, they become more agitated at dusk (sundowning) or during specific tasks, like getting a bath or taking medication. (For my dad, it was the bedtime routine.) Consider that the task may be frustrating to complete for the person with Alzheimer’s. If a certain event is a known trigger, it can be helpful in reducing agitation. Distract with an activity to reduce the effects of sundowning. Have an aide help with bathing. Try to disguise medication in food or a smoothie if possible.
  • Create a calm environment: Those with dementia tend to do best in calm environments that reduce the risk of overstimulation. Noise in particular can be overwhelming. Try soothing, familiar music and lights that are bright enough to maintain safety in the home but that don’t create a harsh glare. Limit caffeine if that is determined to increase agitation. Natural remedies, such as soothing teas and herbs may be helpful, but always check with a doctor first.
  • Stay active: For those with Alzheimer’s who are ambulatory, exercise can help reduce aggression and agitation. My dad loved to take long walks, and as his dementia progressed, he spent more time indoors, which was a source of frustration for him and increased his agitation. For those who have difficulty walking, doing simple household tasks like folding towels can be useful in preventing boredom, as can activities like simple jigsaw puzzles and coloring books.
  • Medication: While medication is not effective for some patients, it can be a useful tool when combined with the above suggestions. Consult your loved one’s physician to learn about options. Consider enrolling your loved one in a drug trial if they qualify.

One important factor to keep in mind is that agitation that appears suddenly may be related to a physical ailment your loved one is experiencing but cannot communicate their discomfort. For example, urinary tract infections are common in those with dementia, and can create very uncomfortable symptoms, which can increase agitation. A new medication can also increase aggression. Share any concerns with your loved one’s doctor.

What methods have you found to curb aggression and agitation in those with Alzheimer’s disease?

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Fireworks and Sundowning – Not a Happy Fourth of July — The Imperfect Caregiver

A good reminder that not everyone reacts well to fireworks, including people with dementia. (This can also apply to people with autism and pets, among other groups.) Have a safe and happy Fourth of July!

As if sundowning weren’t a challenge for those with dementia and their caregivers we add fireworks to the mix on July 4th each year. A person who once loved fireworks may respond differently now. For someone with dementia, the loud pops and explosions can trigger memories of wartime experiences causing a return or worsening of […]

via Fireworks and Sundowning – Not a Happy Fourth of July — The Imperfect Caregiver

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July 3, 2018 · 7:16 am

The cruel progression of Alzheimer’s

While the progression of Alzheimer’s is different for each person, there is a progression, and it’s a heartbreaking one.

On Sunday, 60 Minutes aired its latest installment following the life of Carol Daly and her journey with Alzheimer’s. This year marks 10 years since the show first made contact with Carol and her husband Mike, a former NYPD officer.

It’s gut-wrenching to watch the mental and physical decline of Carol over the years, and how much Mike suffers as a caregiver. But Carol’s story is  important to tell, to help raise awareness of this devastating disease to a mass audience. I am grateful for Mike and Carol for allowing cameras to document the cruelest aspects of Alzheimer’s.

Watch the full 60 Minutes segment

The segment touches upon important topics, such as the high cost of Alzheimer’s caregiving and the lack of financial support, along with the physical and emotional toll dementia caregivers takes on loved ones. You know Alzheimer’s is a beast when the former cop tells the CBS correspondent that caregiving is the toughest job he’s ever had.

The sad truth of course is that there are many Mikes and Carols out there, fighting their own battles with dementia. And that’s why we must do better, as a government and as a society, to help families caring for a loved one with dementia.

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