Tag Archives: caregivers

2022 Alzheimer’s disease facts and figures

The Alzheimer’s Association has released its 2022 Alzheimer’s Disease Facts and Figures report.

This year, the Alzheimer’s Association is taking a closer look at Mild Cognitive Impairment (MCI) and encouraging greater awareness and understanding of this condition and its relation to Alzheimer’s disease.

Here are some of the top takeaways:

  • More than 6 million Americans are living with Alzheimer’s
  • 1 in 3 seniors dies with Alzheimer’s or another dementia
  • In 2020, COVID-19 contributed to a 17% increase in Alzheimer’s and dementia deaths
  • More than 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias and in 2021, these caregivers provided more than 16 billion hours of care valued at nearly $272 billion.
  • Fewer than 1 in 5 Americans are familiar with mild cognitive impairment (MCI), which can be an early stage of Alzheimer’s
  • About one-third of people with MCI due to Alzheimer’s disease develop dementia within 5 years of diagnosis

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Reflections on death being more about the journey than the destination

Photo by Greg Rakozy on Unsplash

I recently had the privilege of writing a blog post for The Conversation Project. My father died 10 years ago and in May, I will be marking seven years since my mother’s death. I’ve had a lot of time to think about end of life issues in the years since their passing and I’ve shared my perspectives here on The Memories Project blog and in my book, The Reluctant Caregiver.

In my post for The Conversation Project, A Good Death Is More about the Journey than the Destination, I discuss my family’s reluctance to talk about death and end of life issues, and how that impacted their end of life journeys, albeit in very different ways. My father’s death impacted how I cared for my mother, when just several months later, she was diagnosed with cancer.

Neither of my parents experienced the kind of death that I would want for myself, and that is why it has become such an important advocacy issue to me. Please talk to your loved ones, discuss your end-of-life wishes and document it all so that you can have some peace of mind when that phase of life is reached. What I wish for everyone is that you can find the time to simply be with your loved ones who are nearing the end of life, and not overly preoccupied with medical care duties. Just like at the beginning of life, it’s important we have those bonding moments at the end of life as well.

Visit The Conversation Project for tips and guides on how to start these important conversations with your own family.

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Nutritional options important part of palliative care

I came across an interesting discussion recently about whether Ensure and other nutritional beverages marketed towards older people are really the best option.

The discussion that followed the geriatrician’s perspective included interesting pros and cons. It made me think about my parents’ experience with the beverages. My father had never been a fan of milkshakes or similar beverages, but he seemed to enjoy the Ensure drinks, so I would ship cases of them to the memory care center where he spent the last year of his life. My mother existed on Ensure for the last month or so of her life. I have regrets about that, wishing I had taken time to make her something that she would have enjoyed more.

This is why I’m such a strong believer in expanding inpatient hospice and providing more robust home hospice care. As the sole caregiver for my mother at the end of her life, things like whipping up something delicious for her to eat didn’t cross my mind because I was so busy focusing on the “important” things, like her pain medication, treating her bedsores, etc. While I managed to mainly keep her suffering to a minimum, there was no joy in her final weeks.

Those with dementia may struggle with solid food as they enter the final stages of the disease, so liquid forms of nutrition may become a necessity. Homemade smoothies, puddings and milkshakes may interest those who have grown tired of the commercial products. If you can, consult with a nutrition specialist or dietitian about tasty, safe options for your loved one. Bringing loved ones small moments of joy can also lift the spirits of family caregivers.

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Being less active during pandemic may have health consequences

The pandemic’s impact on health goes beyond those who contracted the coronavirus. Even those who managed to avoid the infection may have suffered consequences to their health, and in an area that many take for granted.

In December, I fell while walking my dog. I slipped going down a moderate slope in the park and landed straight on my rump. The fall knocked the wind out of me for a minute, but I was fortunate not to break or sprain anything. My back was very sore and remained so for about a week. I treated it using over-the-counter pain medication and homeopathic balms. My mobility was limited and I was forced to slow down and take it easy, but fortunately I fully recovered and don’t have any lingering issues.

I’m in my late 40s and in decent health. This was a minor fall, but it reminds me that as I get older, recovery from such incidents takes longer. We often take our mobility for granted, but the pandemic may have a lingering impact on our physical conditioning, making us more prone to falls. Studies suggest that some older adults have experienced a decrease in mobility during the pandemic, The New York Times reported.

Those who now work from home full-time may be moving less than when they went into the office, even if they drove to work. Pandemic restrictions may have shut parks, gyms, malls, and other outlets that older people used to exercise. Depression and anxiety can dampen the desire to exercise. Those who did contract COVID-19 may have battled lingering symptoms that made exercise difficult. And those who received benefits from physical and occupational therapy may have not been able to receive those services during the pandemic.

What geriatric health experts are concerned about is that decreased activity levels may result in worse physical functioning, which is key to older adults’ ability to live independently. A fall can lead to a lengthy recovery and trigger a fear of falling again, creating a vicious cycle with significant health consequences. The good news is that we can engage in simple activities that will help us reverse the impacts of our sedentary lifestyle and regain our mobility. Walking, yoga, and tai chi are all great ways to get moving and improve physical functioning.

Take inventory of your mobility and your elder loved ones and make an action plan if you desire to increase your mobility. Taking small steps now can make all the difference in keeping ourselves and our elder loved ones living independently.

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Nursing home evictions: Understanding your rights

As difficult as it can be to find a good nursing home and secure space for your loved one, the challenge doesn’t end there. Dementia caregivers in particular must be aware and be prepared to take action if the nursing home tries to evict your loved one.

So many people are not aware of the amount of nursing home evictions that take place each year in the US and the chaos and stress it causes families. I experienced a form of this when the skilled nursing facility where my father was placed after being discharged by the hospital said it could no longer care for him because they didn’t have staff that could provide dementia care. My father was not able to return home because he could no longer walk and my parents’ condo had stairs. My father was stranded and eventually was placed over an hour-and-a-half away from my parents’ home in the closest facility with a memory care wing.

In some cases, residents are evicted with very little notice and without a legal reason. ‘I Want to Go Home’ published in The Progressive Magazine offers firsthand accounts of how nursing home evictions can throw families into chaos. One way to protect your loved ones is to be aware of the possibility of eviction and an action plan to implement if it occurs.

I hope this is an issue your loved one never has to face but Justice in Aging offers good resources to learn more.

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Vision for the new year

I hope you had a peaceful holiday season. Mine was spent mourning my beloved cat Rosalie, but the holiday break allowed me time to honor her memory in various ways. Her urn arrived this week, and Katie Patton of Blocks from the Heart has done such a magnificent job in capturing Rosalie’s spirit.

And to usher in the new year, I took the plunge and adopted a pair of tuxedo cats named Dorian and Serena. They are young, just a year and a half. I do feel like Rosalie’s untimely passing was a signal from the universe that an opportunity was presenting itself to welcome a new energy into my home and my life. It was a rude awakening, but one that I hope will inspire new endeavors into my caregiving advocacy work. Adopting young cats is also a good lesson in letting go of routines and looking at things from a new perspective … like when a kitty climbs to the top of the kitchen cabinets!

Serena and Dorian

As for vision … I attend a monthly women’s healing circle that involves a variety of spiritual disciplines and meditations. It’s been a virtual respite during the isolation of the pandemic. Each year, the teacher draws a spirit word for each participant, and mine for 2022 is vision. I’m interested in exploring that concept.

To kick off the year, I’m taking a course in children’s book writing. I have an idea for a children’s book that would feature my rescue dog Murphy’s story and connect it to children who have also experienced trauma. I don’t know what will come of it, but I think it is good to flex the writing muscles in a new direction.

On the legislative front, I hope some of the caregiving initiatives can be salvaged from the BBB plan. I know I sound like a broken record, but caregiving issues deserves bipartisan support because it’s something that touches all of our lives, regardless of political beliefs. Caregivers, from frontline hospital and nursing home workers to family members tending to loved ones at home, have sacrificed so much and it’s well past time that we as a society support better funding so that they get the support they need.

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What’s really scary this Halloween

For those who celebrate, I hope Halloween festivities offer you a bit of respite from what has been another challenging year. I have many fond memories of Halloween, and appreciate my mother’s efforts in making it special for me as a child. If your health permits, indulge in a piece of candy or sweet treat. It’s amazing what a simple gesture can do for the spirit.

But I cannot let this weekend go by without mentioning how disappointed I am that paid leave has not made the cut so far in the painfully negotiated Build Back Better bill that has paralyzed Congress over the last couple of months. While I’m relieved that home care will receive new funding, America is one of the only countries in the world that does not have some form of paid leave. It’s popular according to surveys, yet moderates are more concerned about the effect on small businesses and the country’s debt, instead of the major sacrifices of individual citizens. In my book, The Reluctant Caregiver, I outline the devastating financial costs that I suffered when as an only child, I found myself being a caregiver for my parents. Six years after my mother’s death, I’ve finally paid off my credit card debt, but I’m hopelessly behind in retirement savings.

The truth is that caregivers who end up in massive personal debt have a negative impact upon the country’s financial stability. Bankruptcies, foreclosures, and credit default can lead to higher interest rates for all, along with tightening mortgage eligibility. Either way, we’re going to have to pay. And that is just the financial cost. Those who do not have access to paid leave often suffer from more health issues, placing a burden on our healthcare system. Being proactive makes more sense than just shrugging one’s shoulders and shirking one’s responsibility to provide practical solutions for fellow citizens.

I am heartened to see so many caregivers sharing their personal caregiving stories. We are no longer an invisible workforce, and we must hold those accountable who continue to ignore the issue.

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How to address elder abuse of family caregivers

While elder abuse is an important issue we must better address as a society, there is less open discussion about elders who abuse their family caregivers. But it is a real issue, with potentially devastating physical, mental, and emotional consequences for the caregiver. A mix of embarrassment, shame, and reluctance allows this issue to be kept hidden. But it is important for caregivers to share their stories and seek help when necessary.

I cam across a helpful article on this topic written by Carol Bradley Bursack of Minding Our Elders. She tells of a time when she faced nasty treatment from her mother when Bursack visited her at the nursing home where she resided. A nurse offered sage advice: skip a day of visitation. A day of respite offered Bursack the break she didn’t even realize she needed and helped clear the air with her mother, who was very pleasant on her next visit.

This made me think of a similar example from my own caregiving experience and how I handled it. As I write about extensively in my book, The Reluctant Caregiver, my mother and I were like oil and water together. We had opposite personalities and our differences only magnified as my mother dealt with a grueling recovery from cancer surgery and I became her live-in caregiver. I became responsible for managing her colostomy, which always involved some trial and error. When she developed a hernia, my mother’s discomfort yet decision to delay the necessary surgery only made her mood more foul. In the middle of the night she called out to me, letting me know her ostomy bag was leaking. This was an occasional occurrence and usually my mother was apologetic and grateful for my assistance. But not that night. She berated me, telling me I didn’t know what I was doing over and over. This despite the fact that she would not learn how to change the bag herself, which was the main reason I remained her live-in caregiver. I got the bag changed, walked away as she continued to yell at me, and went to my bedroom. I was angrier than I had ever been in my life. Rage shook my body. I knew I needed a break, and soon.

Respite care in a rural community is hard to come by, but fortunately, there was a resort hotel within short walking distance of my mother’s condo. I made a reservation online for the next night. The next morning, I was polite but cool to my mother, who tried to pretend nothing had happened. I told her I was spending the night at a hotel, and that it was the best thing for both of us. She put up a bit of fight but I could tell she knew she had crossed a line. I walked out that afternoon with zero regrets. If my mother had a medical need, she could call me and I would’ve been there in 10 minutes, so she was in no danger. My emotional well-being was in danger. I so enjoyed that night in the hotel. I got a good night’s sleep for the first time in months and felt refreshed and in a better state of mind upon returning to my mother’s place. While we still had our disagreements, she never again treated me the way she did that night. There are regrets I have about my mother’s care, but the decision I made that night to care for myself—I have no regrets at all.

Here are some tips on what to do if you are facing an abusive situation involving an elder relative:

  • Confide in a trusted source: Talk to someone about what you are facing. Ideally, it will be someone outside of your family unit, such as a friend, support group member, therapist, or pastor. Online forums can provide instant feedback. Sometimes we become so deeply involved in caregiving we get tunnel vision and have a hard time acknowledging the realities of the situation. We often want to make excuses for our loved ones who are abusive, but having a trusted sounding board can help you identify if you are in an abusive situation that needs outside assistance.
  • Set boundaries: It is easy to allow yourself to be taken advantage of by those you care for, out of guilt or sense of duty. But it is important to carve out time for your needs, otherwise you will suffer caregiver burnout. Elders who desire to age in place will need to understand that you will not be able to wait on them 24/7, and outside help may be necessary to attend to their needs. For elders in nursing homes, they should be encouraged to develop social relationships with fellow residents and staff instead of relying upon daily visits from a relative, which may be a burden for those juggling a job and childcare duties. If the abuse becomes overwhelming, it may require an extended separation.
  • Use respite care: If respite care is offered in your area, take advantage of those services! If not, seek options for informal respite care. This could be a friend, relative, church member, etc. who is willing and capable to spend time with your loved one while you take the afternoon or evening off to tend to your own needs. Even a few hours of respite, if taken regularly, can make a big difference.

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Caregiver concerns regarding the delta variant

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Those who have been following the coronavirus pandemic closely are likely not surprised that a concerning variant has emerged. This was one of the scenarios that worried infectious disease experts. Here is what caregivers should know about the delta variant:

What is different about the delta variant: It’s more transmissible, and is running rampant through America’s large swaths of unvaccinated populations. The debate is ongoing on whether it causes more severe disease. Hospitals across the US are seeing younger people fill up beds, which is different than earlier iterations of the pandemic.

How to protect elder loved ones: The good news is that roughly 80 percent of Americans over the age of 65 have been vaccinated, according to the CDC. If you have an elder in your life who has been reluctant to get vaccinated, now is the time for them to seriously reconsider. For those who cannot or will not get vaccinated, extreme caution when interacting with others, especially in public, is critical. That includes masking and limiting contact with unvaccinated people.

But what about the breakthrough cases in fully vaccinated people? Vaccines have never been full-proof. The influenza vaccine in particular is a roll of the dice each year when it comes to effectiveness. The COVID-19 vaccines face the same challenges, especially when it comes to variants. While the studies showing that vaccinated people can carry a similar viral load to the vaccinated, it’s important to focus on the bottom line. The overwhelming amount of people who are being hospitalized due to the delta variant are unvaccinated. The vaccinated breakthrough cases typically result in asymptomatic or mild symptoms. Down the road, booster vaccine shots may be necessary to address variants.

What about nursing homes? According to the government, 81 percent of nursing home residents and 58 percent of staff have been vaccinated. A concerning study found that aides working in nursing home have lower vaccination rates. These are the staff members who interact with residents the most, so for the well-being of residents and staff, more facilities may consider vaccine requirements. If you have concerns about unvaccinated staff members at a facility where your loved one resides, talk to management. It’s also possible that facilities will reimpose visitation restrictions to reduce the risk of outbreaks of the delta variant.

Will this ever end? I wish I had a crystal ball. Everyone is exhausted. It is particularly disheartening for those of us who followed the guidelines and got vaccinated, and now find that a variant is threatening to upend the cautious reopening phase. Some experts approach the future of coronavirus like seasonal influenza, where as a society we take precautions as we can, but accept that there will be cases, hospitalizations and even deaths in vulnerable populations. Former FDA commissioner Scott Gottlieb estimates that we are further along with the delta variant than we may think, and that while brutal, the variant will sweep through the country fairly quickly. Other variants may follow, so stay vigilant when caring for anyone who is older or in a vulnerable population. If it is safe for you and your loved ones to do so, try to stay engaged in activities that you enjoy, whether it’s being out in nature or in low-risk social situations. It’s important not to overlook our mental and emotional health while we address COVID-19 variants.

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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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