Tag Archives: dementia

Toxic Positivity Mongers in Dementialand — The Blog That Currently Has No Name

Have to say I agree with this perspective wholeheartedly. As the author of The Reluctant Caregiver, I have empathy for those of us who often find it difficult to be Miss Mary Sunshine all of the time. Sometimes life just sucks. People mean well but the best gift you can offer in such situations is simply a sympathetic ear.

I was recently introduced to the term “toxic positivity.” I instantly knew what the term referred to, and I could relate. I see it on social media….Positive vibes only…Think happy thoughts…There’s always a silver lining…It’s a great day to have a great day. And I can remember times when I was struggling and someone shot […]

via Toxic Positivity Mongers in Dementialand — The Blog That Currently Has No Name

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May 30, 2019 · 8:36 pm

Marking National Nurses Week

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The week of May 6-May 12 is National Nurses Week. Caregivers of loved ones with chronic conditions resulting in frequent hospital stays get to know the profession and its members quite well.

Being a nurse means often seeing people at their worst: in pain, with mental confusion, combative or frightened. Nurses who treat those with dementia know an extra level of care and patience is required.

Nurses sometimes get labeled as superheroes but they are human, with their own families and struggles. But when they come into work, they attempt to put their own troubles aside to make someone else feel better. It’s a true act of giving.

I am grateful for the nurses who cared for my father and mother during their hospitalizations. One particular incident that stands out in my mind were the nurses at Presbyterian Hospital in Albuquerque. When they found out that it was my parents’ 40th wedding anniversary, they brought my mother a slice of cake while we were in the ICU room with my father who was in a medically-induced coma. Those busy nurses didn’t have to take the time to make that sweet gesture, but they did. I’m forever grateful.

If you know a nurse who has touched your family’s life in a positive way, reach out this week to let them know.

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‘What They Had’ will resonate with dementia caregivers

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I saw an excellent movie recently that I wanted to share with others who are or have been dementia caregivers. The movie is called, “What They Had,” and it has a great cast, starring Blythe Danner, Hilary Swank, Robert Forster and Michael Shannon. The film has a fairly simple plot: matriarch Ruth’s dementia is getting progressively worse, and the family is drawn together to figure out the next steps.

Those of us who have been dementia caregivers know what’s coming next, to a certain extent. The family’s internal dynamics are stretched to their breaking points as they each approach the “solution” to caring for the woman they love who is losing her mind and memories of them.

What is remarkable about the film is how realistically it depicts the challenges of a family grappling with Alzheimer’s. First-time director Elizabeth Chomko, whose grandmother was diagnosed with Alzheimer’s, captures the raw and complex emotions perfectly. The movie is uncomfortable to watch in a good way, in that the plot, dialogue and acting is so realistic that you feel like you are eavesdropping into a family’s nightmare.

Watch the trailer:

I related quite a bit to the character of Nick, who is the son and brother. He’s the hands-on sibling, because he lives near the parents in Chicago, while Swank’s character Bridget is the sister who moved away to California. Nick has understandably built up some resentment and even though he comes across as pessimistic and critical, he cares deeply and understands the mother’s condition in a more realistic way than the rest of the family. I related so much to Nick’s frustration with the rest of the family who were overly optimistic or avoiding the tough decisions, as I dealt with that with my mother when making medical decisions for my father.

Bridget’s response to being thrown into a family crisis prompts her to question everything about her life, including her marriage. Danner plays the character of Ruth with heartbreaking tenderness, though there are moments of humor as well. And Forster, Ruth’s husband and primary caregiver, demonstrates a loving resilience underneath his gruff, practical exterior.

Both Danner and Swank have experienced real-life caregiving, which I think brought an extra layer of realism to their portrayals.

The film is available on video-on-demand services. (I watched it on Vudu.) It does contain a fair amount of profanity, but it seemed to be a natural fit for the characters’ personalities. If you’ve seen the movie, I’d love to know what you thought about it.

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Protect your loved one with dementia from becoming a victim of a scam

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It’s heartbreaking to hear stories where elder loved ones are scammed out of thousands of dollars. These criminals can be found all over the world, only needing a list of phone numbers or email addresses to find their next victim.

A new study has found that those who are more prone to becoming scam victims may be at greater risk of dementia. In today’s world, it’s not just phone scams that one has to worry about, but online scams as well.

My father was not a phone person, but he did send money to a variety of religious organizations. They were supposed to be representing Catholic churches or charities, and he would get a small token or prayer request in exchange for whatever he sent. It may have been totally legitimate, but after he was gone, I found hundreds of pieces of correspondence from these groups. I wonder if he gave more as his dementia progressed.

My mother was the phone person in our family. She didn’t have dementia but she did have a quality that made her potentially susceptible to scammers: loneliness. She loved to talk on the phone to people, whether she knew them or not! They would be her friend by the end of the conversation. I remember getting upset with my mother when she told a telemarketer that she had won the lottery. Why would you share personal financial information with a stranger? My mom’s response was that the telemarketer had said she was a “nice lady.” Sigh. Fortunately, nothing came of the incident, and to be fair to my mother, she was aware of the scams that were going around targeting seniors.

Credit.com has a nice resource which breaks down the  most common online scams and offers tips to help seniors avoid becoming a victim. Monitoring your elder loved one’s financial statements is key. If your older relatives enjoy going online, there are a set of simple steps you can take to provide them a secure experience. Staying vigilant is the best way to combat such criminal activity.

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Latest Alzheimer’s report demands action

The Alzheimer’s Association released its 2019 Alzheimer’s Disease Facts and Figures report, and the statistics are sobering. Almost 6 million Americans are living with Alzheimer’s disease, and it is the sixth-leading cause of death in the U.S.

On the caregiving front, more than 16 million Americans are providing unpaid care for people with Alzheimer’s and other dementias. The value of their work is approximately $234 billion.

While the numbers are grim, the 2019 report makes crystal clear that we need bipartisan support at the federal level in addressing what is a health care crisis. Alzheimer’s disease is so costly, yet lags in research funds. Alzheimer’s caregivers need far greater support, both financially and in respite care.

Read the full report on the Alzheimer’s Association website.

alz assoc 2019 report

(Infographic courtesy of the Alzheimer’s Association)

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Tips on how to communicate with those who have dementia

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One of the things I struggled with the most when spending time with my dad who had Alzheimer’s was communication. I didn’t know how to act, or what to say. Should I talk slower, use simpler words or should I speak normally? And when Dad spoke what sounded like gibberish to me, how was I to respond?

It’s a common struggle for dementia caregivers. You see the person in front of you, who looks just like the person you’ve known all your life, and then they open their mouth and say something inappropriate or bizarre. You freeze, your gut twists and you find yourself in a new world, one in which you’ve had no training or preparation.

This Communicating with Alzheimer’s guide offers helpful tips on how to connect with your loved ones with dementia. Here are some of the tips that I found particularly helpful:

  • Maintain eye contact: This can offer reassurance and be a sign of sincerity and thoughtfulness. Focusing fully on a person struggling to communicate can help with understanding as well. The person may use body language to compensate for fading verbal skills.
  • Don’t argue or correct: Those with dementia will often say things that aren’t true or ask for loved ones who are long dead. Some dementia caregivers struggle with the concept of white lies, but it truly is the right thing to do. My mother often tried to correct my father when he said something that wasn’t true, and it didn’t do any good. It only frustrated my father and my mother. If a person with dementia think it’s Wednesday and it’s Monday, so be it. If they want to know where their mother who has been dead for 20 years is, you can simply say they are well and on a vacation.
  • Maintain a quiet, calm environment: I remember the time my parents came to see me at the hotel I was staying at, which was connected to a casino. The minute my father entered the noisy, chaotic lobby, I realized how stupid it was to bring him into that kind of environment. I chronicle that moment in my book, The Reluctant Caregiver. Those with dementia can become overstimulated quite easily and this can negatively effect their ability to communicate.
  • Use humor whenever possible: I used to cringe at some of the silly things my father would say, but in retrospect, it would have been better to just laugh and engage him in whatever train of thought he was having at the moment. Humor is a stress reliever and can lift the mood, which are important for both the person with dementia and their caregiver.

What communication tips do you find work best?

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Patients in Dementialand by Welcome to Dementialand

I totally agree with this! It serves as a good reminder to all of us, and especially those of us who work in the media world, to use person-centered language and not associate someone solely with their disease. Alzheimer’s and other forms of dementia take enough from a person without us contributing to the problem.

Let’s talk about patients. You probably think that’s a typo. I know that it’s not rare to see a typo in my blog. You probably think I meant patience–but I didn’t. I want to talk about dementia “patients.” First, an analogy… My husband, Bill, has had terrible acid reflux since adolescence. He takes medication everyday. […]

Read the full post via Patients in Dementialand — Welcome to Dementialand

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February 28, 2019 · 5:06 pm