Monthly Archives: September 2021

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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20 years after 9/11

It’s hard to believe that it has been 20 years since the 9/11 terrorist attacks.

I remember my father being particularly saddened by the scenes of destruction in New York City, the first place he called home when he arrived in America. My father had a passion for global affairs, especially those where repressed people were uprising. He wrote many letters to the editor over the years, discussing political affairs not only in his homeland of Northern Ireland but in Africa and the Middle East. He was an avid reader of large tomes on military policy and strategy. I wish I’d had deeper discussions with my father about world events. One of the worst aspects of dementia for my father was losing the ability to read, his favorite hobby.

I hope you’ll have time today to reflect and spend time with loved ones.

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Home sharing: Learn more about this elder housing option

You are never too old to have a roommate, or in the concept of home sharing, a housemate. It’s not a new concept. Popular TV shows like “The Golden Girls” put home sharing in the national spotlight and the arrangement continues to spark interest among elders looking for alternative housing options. With more single elders wanting to age in place while on fixed budgets, home sharing could be a viable solution.

Home sharing comes in many different forms. In some cases, an elder opens up their privately-owned home to another elder who is seeking housing. In some cases, home sharing could involve a tiny home on the property or a part of the main house which has been retrofitted into an apartment or separate dwelling. This is a good solution for those who want to maintain a higher level of privacy. In other cases, home sharing may involve larger multi-resident dwellings, where each person had their own room but share common areas. Home sharing organizations can help applicants find the right housing situation for them along with a vetted, compatible housemate match.

It’s important to remember that home sharing is not a substitute for those who require daily medical care. Housemates are not allowed to perform medical care for liability reasons, but can help with household tasks such as cooking and cleaning for a reduction in rent. Home sharing organizations draw up contracts that outline housemate expectations in great detail to support a successful arrangement.

Annamarie Pluhar, author of “Sharing Housing, A Guidebook for Finding and Keeping Good Housemates,” identified five essential benefits to sharing a home, especially for older people:

  • Cost
  • Companionship
  • Help and security
  • Health and well-being
  • Sustainability

Some people in home sharing arrangements have said that the mental and emotional benefits of companionship ended up outweighing the financial benefits. For independent older adults who are not interested in traditional retirement communities, home sharing is a an option worth exploring.

Learn more at StayorMove.org and SharingHousing, Inc.

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