Tag Archives: Alzheimer’s

AlzAuthors ebook sale is now live

Caregiver App Month Canva 2017

In honor of National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month, the authors group that I belong to, AlzAuthors, is hosting an ebook sale.

From now through Nov. 21, you can choose from over a dozen books written by  AlzAuthors members. While the topics of these books focus on Alzheimer’s and dementia, there’s a wide range of genres, from nonfiction to fiction and self-help guides. Prices range from free to $2.99. The Reluctant Caregiver, my collection of nontraditional essays on caregiving, is part of this sale. I had already reduced the price in half for this special month, but for the next week, you can purchase my book for only 99 cents.

It’s a great time to stock up, just in time for those long winter months when there’s more time for reading.

You can find more information about the ebook sale on the AlzAuthors blog.

Advertisements

Leave a comment

Filed under Awareness & Activism

Capturing the power of music in the midst of Alzheimer’s

piano-keys-1514137-640x480

Photo by Jean-Pierre Ceppo/Freeimages

I read a beautiful, poignant story earlier this month about a man with Alzheimer’s who is losing the ability to play the songs he wrote for his wife. These were songs he knew by heart, so he never wrote them down. No one expects a disease like Alzheimer’s to claim what is most precious and sacred to you.

Steve Goodwin, 67, became frustrated when he was unable to play his compositions. That’s when in walked an angel named Naomi Laviolette, a family friend. She plays the piano and asked if Goodwin could help her reconstruct his compositions. She’s recording them note for note so that Goodwin’s musical legacy will be preserved forever.

Goodwin’s wife, Joni, was moved to tears when she heard Laviolette play her husband’s music that she feared was lost. The pair have been married 47 years. She told CBS, “”Losing the songs would be like losing him.”

Goodwin even managed to write a new song, with Laviolette’s help.

1 Comment

Filed under Awareness & Activism

Glen Campbell leaves behind more than a musical legacy

Embed from Getty Images

I was saddened to hear about the death of country music legend Glen Campbell, though he is now free from Alzheimer’s harrowing grip. It’s a huge loss in the music world, where Campbell was much more than just the “Rhinestone Cowboy,” he was an amazing session musician who could play a variety of instruments and his guitar work was phenomenal. He recorded some of the most influential songs of our time, and made them his own.

If you want to see Campbell performing all of his hits with a symphony, check out this YouTube video. He’s in great form here.

Of course, there was the man behind the music who struggled with a dark side that hid under his good guy public image. As Campbell hit middle-age, he became tabloid fodder, with multiple rocky marriages, kids he hardly knew and a bad cocaine and alcohol habit. He eventually got cleaned up and settled down with Kim Campbell, who would be tested when it came to the marriage vows of “in sickness and in health.”

Campbell and his family were very open with the public about his Alzheimer’s diagnosis. It was a brave decision, and if you watch the moving documentary concert film, “I’ll Be Me,” you’ll see the triumphs and challenges that presented itself as Campbell performed with Alzheimer’s on his final tour. His bravery, and his family’s openness, helped renew the dialogue on Alzheimer’s disease, raising public awareness. In turn, that interest helps advocates demand more support for research, care options and caregiver support.

As Campbell dealt with the latter stages of Alzheimer’s, his family kept the public updated, sometimes sharing painfully honest accounts that any of us who have dealt with this heartbreaking disease can relate to. I had a feeling Campbell wouldn’t be around much longer when his daughter Ashley posted this heartbreaking photo on Father’s Day.  It reminded me of my father during the last months of his life, when Alzheimer’s had taken its toll.

Campbell’s family released an album of his final studio recording in June. The title, appropriately, is “Adios.” Farewell Glen, thanks for the memories.

Leave a comment

Filed under Awareness & Activism

Breaking the news to someone with Alzheimer’s that their spouse has died

waiting-71011_1280

Photo credit: Pixabay

Of all the things families have to deal with when their loved one has Alzheimer’s, explaining that a loved one has died is one of the most heartbreaking and difficult issues to handle. Guest author Michael Longsdon of ElderFreedom offers tips on how to approach this sensitive subject, and how caregiver should prepare for the moment.

How do you tell your loved one with Alzheimer’s that their spouse has died? It’s a tricky proposition – one that people with aging parents dread. It would be a lie to say it’s a easy process, but it can be manageable. Here are some tips.

Pick the right time

This is a judgment call, but some common strategies for having this tough conversation include making sure the person is in a safe, comfortable environment, trying to pick a more lucid moment to break the news, and trying to have only one person deal with the news as to minimize possible confusion.

Be straightforward

Every surviving spouse has the right to know that their loved one has died – no matter their condition. When having the first conversation (of many, to be sure), you must be as straightforward as possible. Speak slowly and calmly and tell them that their spouse has died. Avoid euphemistic phrases like they passed away or they are going to be gone for a while. You don’t have to get into the details, and you should stick to the basics if you can. If they ask for details, however, you should be honest.

Offer to go through the deceased’s belongings with them

The practical reason for doing this is that following any death, the surviving loved ones must go through the deceased’s belongings and decide what to keep, what to pass on to loved ones, and what to throw away. For someone with Alzheimer’s this process is vital because you don’t want them to have to do it themselves, plus you don’t want them to have to stumble upon troves of their dead spouse’s belongings, triggering confusion or agitation.

But it can be even more important in the immediate aftermath of the death. Going through old clothes, photos, jewelry, and keepsakes can help ground your loved one to the situation, and in some cases this methodical sorting through possessions can be cathartic. Your loved one may want to hold onto a particular item, which may give them comfort. Let them.

Don’t mistake forgetfulness for denial

“When dementia is severe, people aren’t just in denial. They truly have not been able to form the new memory that lets them remember their beloved family member or friend has died,” says caregiver Carol Bursack.

You’re going to be faced with times that your loved one simply doesn’t seem to be on the right page about their deceased spouse. They may think they’ve gone on a trip, or that they’ve left them. They may ask where they are, even hours after you told them about the death. Don’t think of this as denial. It’s simply a product of their Alzheimer’s. When it comes to what you do in these situations, it’s up to you. Judge the situation and determine whether it’s better to reinform them, or whether you should “punt” and either work around the truth or redirect them with something else. There’s really no right answer here –  it all depends on your loved one’s state at that very moment. It can change from day to day.

You may have to “break the news” to your loved one with Alzheimer’s more than once. How you choose to handle these situations is up to you. Most professionals believe, however, that the initial conversation is a must – both for ethical and practical reasons. Try to find a good time to have the conversation, remember to be straightforward, respect their reaction, and never try to limit their grief.

 

2 Comments

Filed under Awareness & Activism

‘Fragile Storm’ a short film that delivers a powerful message

 

fragile storm

Image courtesy of Fragile Storm.

If you have not watched the short film, “Fragile Storm,” I highly encourage you to do so.

The film stars Lance Henriksen and is winning awards at film festivals.

I do not want to give anything away, other than to say push through the first half and stick it out through the ending. It’s a powerful, visceral experience.

It’s free to watch online.

If you get a chance to watch, I’d love to hear what you thought about it in the comments below.

1 Comment

Filed under Awareness & Activism

‘Senior ER’ designed to reduce stress for dementia patients

emergency room

Photo by Kenn W. Kiser

One of the most frightening calls I received when Dad was in memory care was that he had been taken to the emergency room. Unfortunately, I received several similar calls over the course of the year Dad was in residential care.

The emergency room visits were usually prompted by falls. Even if Dad seemed OK, regulations required the memory care staff to send Dad to the hospital to be checked out. The worst part was that no staff member accompanied Dad. I can’t imagine the confusion Dad must have experienced, on top of his dementia, with the chaos that accompanies an emergency room visit.

Even for a person without dementia, the emergency room is a daunting experience. I’ve only been to the ER  once as a patient, in high school, and it was an exhausting, fruitless experience. I’ve been to the ER several times with others having medical issues, and it is always a nightmarish experience. Why do medical emergencies seem to always happen in the middle of the night? Really though, it doesn’t matter if it is high noon, emergency rooms and hospitals in general seem to be caught in a time warp where it always feels like it’s 3 a.m.

There is so much hurry up and wait. People rushing in and out. Poking, prodding, medications being shoved in your face, or pumped into a vein. So many questions that have to be answered rapidly, and repeatedly. It’s enough to rattle a mentally sound person.

That’s why I am optimistic that some hospitals are reinventing the ER experience for those with dementia. Lutheran Medical Center in Denver was recently profiled for its Senior ER program. They’ve taken half of their emergency room space and retrofitted it to make it a more soothing, less chaotic experience. Everything from mattress thickness to lighting and noise level has been moderated to prevent the onset of delirium, which can hasten death.

The Senior ER has been such a success that people of all ages are asking to be admitted to that wing.

 

 

2 Comments

Filed under Awareness & Activism

Aging in America: Crisis and opportunity

old-couple-1316755-1279x849

Photo credit: Pierre Amerlynck/Freeimages

Next week, I’m headed to Chicago for the Aging in America conference.

I look forward to attending sessions and meeting other advocates who are addressing the needs of America’s rapidly aging population. My Respite Care Share concept will be presented as part of the poster sessions. I know I will come away with a lot of takeaways, which I will share here upon my return.

When I think about aging in America in the big picture sense, I see crisis and opportunity. There are multiple crisis points that must be addressed, but each of those crisis points is also an opportunity. And while grassroots efforts can’t solve all of the problems surrounding aging, they can make a real difference.

Some of the major aging issues I care about include:

  • Health care: The affordability and quality of health care for seniors must be addressed. There is much Medicare doesn’t cover, such as residential care for those with Alzheimer’s. The outrageous residential care expenses can quickly bankrupt a middle-class family. Many Medicaid programs are overwhelmed, and facilities accepting Medicaid often have long wait lists and sometimes are of substandard quality.
  • Aging in place: One way to avoid the high costs of residential care is to care for aging loved ones at home. However, that comes with its own costs, such as renovating a home to make is safer and more accessible for seniors, and adult children being forced to leave the workforce or reducing their work hours to take care of aging loved ones. This not only has an affect on the caregiver’s current income and health insurance benefits, but their family budget and retirement outlook as well. The mental and physical toll of caregiving that must be considered as well. Community programs can assist with some of these issues.
  • Professional caregiver shortage: As America’s population rapidly ages, the need for professional caregivers to fill in the gap that families cannot cover is also rapidly growing. Because these jobs pay so little, there is a shortage of quality people for these roles. While spending their days caring for others, many professional caregivers cannot afford health insurance for their own families. My mother’s personal caregiver ended up quitting the field because she couldn’t afford to put gas in her car. If we value caregivers more in the job market, we can fill the staffing shortage and reduce unemployment.
  • Alzheimer’s & other dementias research: I care about supporting the research into all major diseases that claim the lives of Americans. My mother lost her life to colon cancer. But my father’s battle with Alzheimer’s illustrated to me the cruel particulars of this condition, and how the entire family is mentally, emotionally and financially impacted. It’s important that we keep funding research efforts and participating whenever we can in trials and other studies that can help find effective treatment.
  • Family caregivers: Last, but certainly not least, I am a strong advocate for more support for family caregivers. Greater financial support is a must, but at the community level, encouraging caregivers to use respite and simply being a good listener for a caregiver who needs to vent are just as vitally important.

What aging issues are most important to you?

4 Comments

Filed under Awareness & Activism