Tag Archives: dementia

AlzAuthors Caregiver Appreciation Month Book Sale and Giveaway

As many of you know, I am a member of the AlzAuthors group, which has grown over the years to include a diverse and impressive membership. I love how the AlzAuthors library represents so many varied genres, from memoirs to self-help to children’s books. We have non-fiction and fiction books that focus on Alzheimer’s and other dementias. We have books for those living with dementia and books for their caregivers and other family members, such as grandchildren. Much gratitude to the organization’s leadership, who have tirelessly worked to encourage the group to grow in membership and outreach.

In honor of Caregiver Appreciation Month, AlzAuthors is hosting a book sale and giveaway. The promotion runs through Nov. 17. It’s a good time to stock up on books that are heavily discounted, some even offered for free. These books can make thoughtful gift ideas for the caregiver in your life.

You can get the digital version of my award-winning collection of personal essays, The Reluctant Caregiver, for just 99 cents.

Please share the giveaway information with fellow caregivers.

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How your caregiving experience can be a gift to others

My father and Aunt Peggy on her wedding day, 1956.

I received a letter from my Uncle Jim this week, updating me on how my Aunt Peggy is doing. She is my father’s youngest sister and has dementia. My father’s side of the family has been decimated by the disease and Peggy has been living with the disease for years. Jim has been an amazing caregiver to her and patient in navigating the choppy waves the disease presents. She is doing as well as can be expected, and is able to take advantage of resources offered by Australia’s stellar healthcare system.

A few years ago, I sent Jim a copy of Chicken Soup for the Soul: Living with Alzheimer’s and other Dementias. A story of mine about my father, French Toast, is included in the collection, but I also thought Jim might appreciate the wealth of information that was shared by the dozens of dementia caregivers who contributed to the collection. In his recent letter, he mentioned the book and the information I shared about my father’s struggles with swallowing in the end stage of the disease. He thanked me for sharing the information and how it had been helpful while caring for Peggy.

Caregiving can feel very isolating. When caring for someone with dementia, that isolation can feel even greater, as friends and sometimes even other family members maintain a distance, not sure how to help or struggling to accept the diagnosis. But in those moments you might be learning something that, when shared with others, can make their caregiving lives easier.

Don’t be afraid to share the lessons you have learned on your caregiving journey. Knowledge is a precious gift and what we learn from fellow caregivers can be more meaningful than what we learn in books.

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Preserving Memories With a Loved One—Questions to Ask Before it’s Too Late — The Diary of An Alzheimer’s Caregiver

Most of us think we have more time than we actually do … So many times, after my mom passed, I wished I’d asked her about this person or that event. – Stacy Monson

So true! The Memories Project began as a way to honor my father and the further I went in documenting my father’s stories, the more I realized I was missing important details. That is why I urge everyone to ask your loved ones to recount their life stories and anything else they want to share. It’s so easy now, literally a tap on a smartphone button, and you can record these precious memories.

Read the blog post along with a great list of questions to get you started by clicking the link below:

Preserving Memories With a Loved One—Questions to Ask Before it’s Too Late — The Diary of An Alzheimer’s Caregiver

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Setting the record straight on Medicare

Expanding Medicare services is a hotly debated topic in Congress right now, as Democrats try to reach an agreement on what parts of President Biden’s Build Back Better agenda can garner enough votes to ensure passage. There is a lot of misinformation flying about that suggests many people, even legislators, don’t understand what Medicare covers. Nancy Pelosi complained in a closed door meeting that she didn’t see why she should receive $1,000 to “get her teeth fixed” and this editorial in The Washington Post bemoaned the idea that Bill Gates might be able to get a free pair of eyeglasses. There is a push by centrist and elitist Democrats to focus on childcare and maybe throw elders a bone by allowing Medicare to negotiate prescription drug prices.

These dubious examples do nothing to address the genuine, dire circumstances that many elders in the middle class and lower middle class experience on a daily basis. I know because my parents experienced it and in turn, my finances were damaged as well. Many people assume Medicare is like Medicaid for those over 65 and covers most medical services. What a rude awakening it can be for a family caregiver to discover that this is definitely not the case. The realization hits particular hard for those people who are deemed to be “too wealthy” for Medicaid, which covers much more. The amount of out-of-pocket expenses for middle-class Medicare recipients can have a crippling impact on a family’s budget.

I’ve discussed on this blog how those with dementia endure significant expenses that Medicare doesn’t cover, including memory care and home health care visits. Middle class families cannot afford to pay several thousand dollars a month for memory care or home health care for very long, especially if they are sandwich caregivers also raising children at the same time.

There is a lot of pushback from dentists about expanding Medicare to cover dental services. So far, I’ve not heard a single dentist discount the importance of dental care for the elder population. It all comes down to them making less money. Issues like gum disease increases the risk of serious health issues. Being able to properly chew food can assist with digestion that slows down as one ages and also supports proper nutrition. If your mouth hurts, you are unlikely to eat properly and eat healthier food like raw fruit and vegetables.

Vision services are more than a pair of glasses. Vision care includes glaucoma screenings and maintaining adequate vision is essential to keep elders from falling or being involved in car accidents which can lead to lengthy hospital stays. Hearing is another important health marker. Loss of hearing has been associated with a higher risk of dementia. These are not optional or cosmetic services but essential preventative care that will keep our elder population healthier at home.

My mother spent thousands of dollars out of pocket for dental care over the years she was on Medicare. This was on top of the several thousand dollars we paid for my father’s memory care. We also paid out of pocket for medical transport services, which is covered by Medicaid, but not Medicare. We burned through my father’s modest savings and then my mother’s savings. I ran up tens of thousands of dollars in credit card debt that I just finally paid off last month, thanks to my ability to refinance my home. I know my family was fortunate in many ways, and that many people have it much worse.

I will always advocate for essential preventative medical care to be covered for elders. Those who mock the importance of such care are out of touch with what middle class and lower middle class families face when trying to manage the health needs of their elder loved ones. The excuses about lack of funds and leaving future generations with debt don’t hold water because when push comes to shove, average Americans make great sacrifices to take care of their loved ones. We do it because it’s the right thing to do, even when it destroys our future financial health and our children’s opportunities. It’s long overdue for the government to have the same level of commitment to its citizens.

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Sharing our stories as family caregivers

When we are actively caregiving, it can sometimes feel as no one cares or no one understands what we are going through. As a former family caregiver, I now dedicate my time to not only telling my caregiving story, but learning about other caregiver’s journeys. This week I was blessed with two opportunities to share my story.

I’m a proud member of AlzAuthors, and this week I am the featured guest on the group’s excellent podcast series, Untangling Alzheimer’s & Dementia. If you are looking for a support as a caregiver, I encourage you to check out the podcast as well as the bookstore which offers books about dementia covering a wide range of topics and genres. I’m honored to have my book, The Reluctant Caregiver, included in this collection.

I also did an interview that is featured on Bella’s Blog, part of the Joe & Bella’s retail website. The company describes itself as “a one-stop shopping site for older adults and those who care for them.” The store sells everything from adaptive clothing to safety and mobility items and bathing supplies, all thoughtfully curated by aging and caregiving experts. The first of my two-part interview was posted this week. I discuss the details surrounding my father’s dementia journey and how it impacted the entire family. Use the discount code “Joy” to get 10% off your first purchase at Joe & Bella.

It’s important that family caregivers hear stories from others who have gone through a similar situation. It helps one feel less isolated and can help empower those who are struggling. I’m always grateful to share my caregiving story, but the most rewarding part for me is connecting with others through their own caregiving experiences. We have so much to learn from each other.

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NYT report shines light on dangerous drugging of nursing home residents

A recent New York Times investigation may be a revelation to some, but not to family caregivers who have loved ones in nursing homes, especially memory care centers. The investigation found that at least 21 percent of nursing home residents are on antipsychotic drugs. “Chemical restraints” have become a convenient method to reduce the hands-on care needed for those with dementia in nursing homes which are chronically understaffed. Savvy (and/or devious) nursing home operators and doctors have found workarounds to circumvent the weak government regulations that attempt to curb this dangerous practice.

This is an issue near and dear to my heart. I’ve written about my father’s experience in a memory care center during the last year of his life. He was given Risperidone, a drug typically given to adolescents with schizophrenia. It turned my father into a zombie and made him unsteady, causing several falls which resulted in ER visits. To add insult to injury, my family was left with owing thousands of dollars for medications used to inappropriately sedate my father.

Here is what I wrote about my dad’s experience with the drug:

I remember the indifferent attitude the doctor at the local hospital had when I questioned the use of Risperdal, which was already controversial even while my dad was still alive. The doctor just shrugged his shoulders and said they had to continue prescribing what the doctor from the nursing home had ordered. He asked me if I knew what it was for and I responded “to make patients like zombies so they’re easier for the nursing home staff to deal with” and the doctor agreed with a laugh. I did not find it funny at all.

Johnson & Johnson paid over $2 billion in fines to settle charges levied by the government that they promoted off-label use of the drug to elderly patients with dementia and even provided kickbacks to doctors and nursing home operators. The massive fine didn’t hinder the practice. The drugs of choice are now Haldol and Depakote, according to the New York Times investigation. Doctors are adding a diagnosis of schizophrenia to nursing home residents with dementia to get around government regulations. Haldol is used to treat schizophrenia and therefore doesn’t have to be included in the mandatory reporting of antipsychotic use that nursing homes must provide to the government.

The underlying problem to the overmedicating of nursing home residents with dementia is staffing shortages. If facilities were adequately staffed and had special training in how to care for those with dementia, the need to sedate residents would be alleviated. Families aren’t going bankrupt just so there loved ones can be turned into zombies through chemical restraints. Nursing home operators get access to medications that a family doctor would likely balk out if a family caregiver asked for it to manage their loved one at home. The government’s response continues to be insufficient.

My advice is that if you have a loved one in a memory care center, review their medication list on a monthly basis. If you are not comfortable with your loved one being on a particular medication or you witness alarming changes in your loved one’s physical or mental state, speak up. If you are looking to move your loved one with dementia into a memory care center, ask about their use of off-label medications. Ask that they seek your permission before prescribing such drugs. We must advocate for our loved ones to be treated humanely and not as an experiment to sedate into submission.

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Hospice Training: A Change in Perspective — The Day Between

What a fantastic exercise in developing empathy and understanding of the challenges facing those going through the end of life phase. I believe this training could also be adapted for those caring for those with dementia to better understand how one might feel like they are losing pieces of their identity to the disease.

From a fellow blogger training to be a hospice volunteer:

Yesterday, in a training for upcoming hospice volunteering, I was asked the following: Who are the 4 most important people in your life? What are your 4 most important possessions? What are your 4 top beliefs and/or aspirations in life? What are your favorite 4 activities to do? What are your 4 greatest comforts? I […]

Hospice Training: A Change in Perspective — The Day Between

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Staff shortages a growing hurdle for home care

Those of us who have utilized home health care for our loved ones are well aware of the staffing challenges in the industry. The pandemic intensified the problem and has moved the issue into the national spotlight. Will we find solutions as the demand for home health care is likely to increase in the coming years?

My father’s journey with Alzheimer’s ended a decade ago. Like the woman interviewed by the New York Times for a recent article on the shortage of home care options, my mother cared for my father at home for as long as she could. Her preference would have been to care for him at home, with adequate outside support. There were sporadic home health care visits to address physical health issues, but the bulk of the care fell on my mother. My father ended up being hospitalized for a medical condition which required surgery and was not physically well enough at the time to be released home. He was placed in a memory care center an hour-and-a-half drive away from my parents’ home. It was the closest facility with an opening. The distance put a huge strain on my mother, who didn’t have personal transportation and had to take a bus to visit my father.

My mother used home health care while she was recovering from cancer, but in her rural community, staffing shortages and high turnover meant limited visits and the bulk of daily care falling on my shoulders. I had to quit my job in order to provide that care, and while I’m grateful I was able to be there for my mother, it created a significant financial burden that I’m still trying to pay off several years after her death.

Most people’s preference is to age in place at home, but people are in for a rude awakening if we don’t adequately address the problems within the industry. While staffing has rebounded to pre-pandemic levels for the most part, demand continues to grow. According to the New York Times, “More than 800,000 older and disabled people who qualify for Medicaid are on state waiting lists for home care.”

That’s a lot of people, and the ripple effect that it causes for family members who have to drastically alter their lives to fill in the care gaps cannot be ignored. There is a lot of talk about “elevating the profession” and that is long overdue. Better pay, better benefits, a career path that offers further training or certifications would help attract and maintain staff. Adjusting our immigration policy to welcome those who want to work in the care industry is another option being discussed. At some point soon, we must move beyond just mere talk and take action.

In the meantime, families are left scrambling and our loved ones in need of care suffer.

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When nursing homes close suddenly, families suffer

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What would you do if you receiving a notice that the nursing home where your loved one resides is closing in a few days? It’s a nightmare situation and a case is unfolding right now in metro Atlanta.

In the case of Tranquil Gardens Assisted Living and Memory Care, residents and their families were given just three days’ notice that they must vacate the premises due to foreclosure on the property. The facility housed those with dementia and also provided hospice care, and families are outraged that their loved ones in fragile health are being kicked out of their homes and forced to find new accommodations with such little notice. By law, facilities are supposed to provide at least a 30-day notice.

In a statement, the owner cited the pandemic’s financial toll as a reason for the sudden shuttering of the facility. The statement did not explain why there was not an effort to provide a more reasonable notice, citing “a domino effect of things out of our control transpired at the end that led to a very heartbreaking and rapid end to the facility.”

In addition to the residents losing their homes, the employees of the facility are losing their jobs and may not even receive a final paycheck.

This terrible scenario may happen with more frequency in the months to come. A report in The 19th highlighted a recent survey by the American Health Care Association and the National Center for Assisted Living which found that only one-quarter of nursing home operators are confident they can keep their doors open for at least one year. “The cost to fight COVID-19, chronic underfunding of Medicaid and the number of patients dropping to record lows have led to the industry’s near collapse,” The 19th reported.

There are no quick fixes to the industry’s woes. It will require a mix of funding, better pay for care workers to address the workforce shortage and better transparency and accountability. In the meantime, if you have a loved one in a nursing home, you should consider putting together an action plan just in case you have to face a similar situation in which the facility suddenly closes.

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The Story You Are Living Is Bigger Than You Know — Life, Love, and Alzheimer’s

“Right now, you may only feel the weight of its burden rather than the weight of its significance, but one day you will look back and realize everything you have learned from this experience.”

So true, can’t wait to read this book!

The Story You Are Living Is Bigger Than You Know — Life, Love, and Alzheimer’s

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