Give the gift of books

When I was cleaning out my parents’ condo, I came across so many books! I’d donated many books to the local library over the years, so I couldn’t believe how many books were still left when I did the final cleanout. Most of the books belonged to my father, who had a deep interest in WWII history, as he lived through the bombing of his hometown of Belfast when he was a child.

Reading was my father’s passion. He was a voracious reader and always had a book or two on his nightstand or coffee table. He sparked my love of reading, and some of my happiest childhood memories are Saturday afternoons spent with Dad in the library. I still enjoy physical books, but I do most of my reading now via e-books. It’s just more convenient and I’m at a point in life where I want to downsize, beginning with my possessions.

With that being said, books can make wonderful gifts this time of year so I want to let you know about Smashwords 2024 End of Year Sale. I’m a participating author in this sales event so you can get e-book versions of The Reluctant Caregiver and CBD for Caregivers for half off from Dec. 12 through Jan. 1, 2025. Use the code SEW50 at checkout.

Digital books can make ideal gifts for those who live far away or for last-minute gift ideas. If you are gifting a book to a caregiver, you may wonder, do caregivers have time to read? It really depends upon the individual circumstance, but reading can be a source of respite, a way to whisk away to another world, even if one only has time to read a page or chapter at a time. A great resource for books that are curated by and for dementia caregivers can be found at AlzAuthors. Their collection includes everything from memoir to self-help to children’s books.

Speaking of children’s books, my tale about my senior rescue dog, Slow Dog, is also still available.

Murphy posing with his book.

Hope you get to enjoy the gift of a good book this holiday season.

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Dementia wandering can be life-threatening in winter

Parts of the US are already experiencing winter weather. It’s important to ensure that loved ones with dementia don’t wander when the weather turns frigid. Each winter, there are cases of those with dementia who fall victim to the elements after wandering from home or a care facility.

My father was a wanderer. His lifelong love of walking had kept him lean, but his desire to move became a liability as his dementia progressed. Dementia takes a physical toll as well, so as Dad became frailer, he was more prone to injuries from falls. While he still lived at home, my mother had to watch him like a hawk. One time, she attempted to take a brief bath, and Dad slipped away. Mom immediately called me, frantic. It was going to be dark soon, and turning colder. In my father’s case, there was a happy ending. Mom called the police who were responsive and tracked my father down not too far from my parents’ condo community. Crisis averted that time.

My father would wander a few more times while he still lived at home, including one infamous time when my mother was in the dentist’s chair. Once he moved to the memory care unit, he was behind a locked door secured by a code. He still wandered, up and down the halls, and outside in the garden area when weather permitted, but at least he was contained to the facility.

It’s such a helpless feeling when a loved one is lost. I’m grateful for first responders and others who helped locate my father when he wandered off.

There are things caregivers can do proactively to reduce the risk of wandering this winter.

  • Door locks: One of the easiest solutions is to configure your home’s door locks to one in which you lock with a key from the inside. Then keep the key on a chain around your neck or in another inaccessible place from your loved one with dementia. If you prefer a more high-tech solution, you could choose something like a fingerprint lock or one that requires a code. Consider a door chime or bell to signal when one exits the home.
  • Trackers: I bought one of the earliest renditions of GPS-powered tracking tags for my father, but the device was cumbersome to use at the time and didn’t have good reception in the mountain town where my parents lived. I’m happy to say that such devices have come a long way since then. If high-tech solutions aren’t an option, even a simple ID bracelet or necklace can be helpful. For long-distance caregivers, seek devices that allow you to monitor your loved one’s movements from your phone, which can offer some peace of mind.
  • Behavior modification: Track your loved one’s wandering episodes. Do they happen at a certain time of day? Sundowning is a common issue for those with dementia, and the longer period of darkness during the winter can exacerbate the issue. My father struggled with bedtime and sometimes would get up in the middle night, change into day clothes, and sit in his chair in the living room until morning. Consider changing up your schedule and finding enjoyable activities to do together during this time period. Talk to the doctor about medication or other therapies.

If your loved one does wander away, try not to panic. Conduct a quick search of the immediate area, and if there’s no sign of the individual, contact authorities. 911 should be able to direct you to any specific community programs for these situations, if they exist in your area, or like in my father’s case, patrol officers handled the situation. Keep a folder on your phone with a recent photo of your loved one, nearby places they may be prone to going to, a list of medical issues and medications, and the contact information for area hospitals.

Caregiver.com has additional useful tips for caregivers to keep their loved ones with dementia safe and warm this winter.

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A mountain of memories and mementos

This past week, I cleaned out my parents’ condo to prepare it for sale. It was a bittersweet experience. My parents enjoyed several happy, peaceful years there in retirement, but as their health declined, my memories of the place become more painful and complicated. That’s a reason why Thanksgiving and Christmas are tough holidays for me.

Even though I had spent time cleaning out upon each visit since my parents died, I was overwhelmed by the amount of stuff that remained. My parents weren’t hoarders; it was just an accumulation of two lifetimes, along with some of my stuff. I’m trying to downsize my own material possessions, so I had to be very disciplined on what I would bring with me. I consolidated down to two small boxes and a duffel bag. The rest would be donated.

It seemed like a lot of stuff to me as I sorted through it, but the donated items fit in one room.

It’s interesting what one chooses to keep and what one lets go in these situations. For example, I kept Polly the parrot, which brought much needed joy to my parents after my father developed dementia. I donated the beautiful kimono that my mother had received from a Navy mate. I kept my grandmother’s ice cream dishes (only 1 survived in shipping, alas) but let go my mother’s Navy footlocker. I would have loved to have kept it, but shipping it would have been too costly. I kept my mother’s makeup bag, but let go of my mother’s purse.

Heavy things like yearbooks I chose to scan selected pages instead of keep. Many yearbooks are available online now, if I should ever wish to wander down nostalgia lane. I spent a lot of time doing just that on this trip, so I think I will be good for awhile.

It was an overwhelming and exhausting experience. A myriad of emotions arose from some of these objects I hadn’t seen since my childhood. Choosing what to keep and what to let go was a challenge. Here are some tips to keep in mind if you find yourself faced with this daunting task.

  • It may be easier to start with the true junk, the items that no longer have any useful life. Consider this a warm-up task.
  • To stay organized and focused, create a plan. Maybe go room by room, or divide by type of items such as clothing, kitchenware, photos, etc.
  • Take breaks if possible. I was on a time limit but even stepping outside to get a breath of fresh air can help one reset.
  • Keep one, let the other go: When I had to sort multiples of items, I tried only to keep one. This can make it easier to make progress while maintaining items that have true meaning to you.
  • Remember, whatever you take with you, there will come a day when those items will have to be dealt with again. If you have children, be aware of the burden it can place on them to have to inherit so many items that may have limited meaning to them. Focus on the memories and heirlooms that help tell your family’s story.
  • Don’t feel like you are throwing your family’s mementos away. Many donated items can have a second life in someone else’s home or be repurposed and upcycled.
  • Finally, and this may be the most important takeaway from my experience: Don’t hide treasures away for special occasions! There were many items in my parents’ condo that had been sitting in boxes that were never used, like dishes. Don’t leave these items to collect dust in a closet. Go ahead and use the good china, wear the fancy clothing item, or display the creative project you are proud to have made. Your family treasures are meant to be enjoyed in the present.

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Making guests with dementia feel comfortable at Thanksgiving dinner

Thanksgiving was one of my family’s favorite holidays. My father loved the food and my mother enjoyed preparing our small family’s meal. If you are hosting or attending a Thanksgiving dinner with a loved one with dementia, it’s important to consider such an occasion from the perspective of someone with cognitive challenges. By planning ahead, remaining flexible, and adjusting your expectations, you increase the chances of everyone having a good time.

Here are important aspects to consider:

Group setting: How many people will be attending the gathering? Is your loved one with dementia comfortable with large groups or do they become easily overwhelmed? What about children or pets? Some people with dementia light up and become more engaged in the presence of children and pets, others may find their energy overwhelming or irritating.

Sitting at a large table can make it difficult for those with dementia to keep up with multiple conversation streams. One solution could be to have multiple smaller table settings to encourage engagement and reduce distractions.

Dietary needs: Dementia can impact a person’s palate, so don’t be surprised or insulted if old favorites are not greeted with much enthusiasm. If dietary restrictions are a consideration, making a plate instead of self-serve may be the best option. Monitor alcohol intake, especially if your loved one takes medications that may interact with alcohol.

Those in the middle to latter stages of Alzheimer’s and other dementias may begin having problems managing cutlery. Consider cutting up food into bite-sized pieces for ease in eating.

One of the more sensitive and heartbreaking aspects of dementia is when someone who loved to cook loses the ability to safely navigate the kitchen and follow recipes. For those who still want to contribute to the Thanksgiving feast, find kitchen tasks that match their ability level. Remember that it’s about the family spending quality time together even more than the food.

Meal presentation: One thing in common with Thanksgiving dinner spreads is that the table is often loaded with multiple dishes. It can be difficult to know where to start even for someone without dementia! Consider using adaptive dinnerware designed for those with dementia.

If your family is hosting and your loved one is no longer able to cook safely, keep them involved by helping set the table.

Need for quiet time: Be prepared to give your loved one a space where they can decompress if necessary. If you are at someone else’s home, perhaps a guest bedroom or if the weather cooperates, a breath of fresh air on the porch could be ideal. Sometimes, a drive around the block may help re-set one’s mood, and worse case scenario, leaving a gathering early is always an option.

Remain flexible and accept that certain beloved family traditions may need to be revamped. After such a social event, make sure your loved one has plenty of time to rest and recover.

By taking these aspects of holiday meal planning into consideration, loved ones with dementia will continue to feel involved and appreciated. Even those who have diminished verbal skills can soak up the love in the room.

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Celebrating National Family Caregivers Month

November is National Family Caregivers Month. While caregivers can use support all year long, this is a great time to step up efforts and let the caregivers in your life know that you appreciate them.

If you are looking for inspiration, don’t miss the airing of Wine, Women, & Dementia on PBS. Check with your local PBS station for more details. You can read my review of how this caregiver community grew online and in-person to foster authentic connections and provide critical emotional support.

Sometimes, caregivers who feel isolated in their specific caregivers situations have to create their own community. Dawn Shedrick did just that, and her caregiving journey is captured in this NPR article.

Real Simple has a good list of ways people can support the family caregivers in their lives. One of the tips is keep showing up. Just like caregivers keep showing up for their loved ones, we can do the same to support caregivers.

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Aging at home comes at an increasing cost

As with many other household expenses, the price of in-home care services has skyrocketed over the last few years. With so many people desiring to age in place at home, families are quickly learning the financial challenges of honoring the elder loved one’s wishes.

The Wall Street Journal reported on the increasing cost of home care, in which the national median cost of a home health care aide is $33 per hour. In 2015, the year that my mother died, the cost was $20 per hour. One woman in Nebraska that was interviewed for the article said she spends a staggering $240,000 per year for home care to tend to her husband, who has Alzheimer’s.

While the hourly rate paid to agencies who employ home health care aides has skyrocketed, the pay the aides actually receive remains low. Median pay for home health care aides is $16.12 per hour, according to figures cited in The Wall Street Journal report. The low pay means high turnover and a challenge in recruiting enough aides to meet growing demand.

The article also discusses the potential high cost of retrofitting an existing home to accommodate the medical needs of a loved one. For example, adding an accessible bathroom on the first floor of a multi-story home for a loved one who can no longer navigate stairs. It would be wise to assess the home your elder loved one resides in and think about the changes that may be necessary as they age, before a healthcare crisis occurs.

Of course, residential facility care comes with a hefty price tag as well. According to a 2023 Genworth study, the monthly median cost for a nursing home facility in the US is $8669 for a semi-private room and $9733 for a private room.

What can families do to address the growing costs of elder care? Long term care insurance may help cover some costs, but read the policy carefully to ensure it covers in-home care service. Those who own homes may explore taking a home equity line of credit or a reverse mortgage. Family members may delay retirement in order to preserve access to good health insurance benefits. As The Wall Street Journal article states, families should not count on an inheritance because that money may be needed to pay for long term care.

Family members who can’t afford to pay for long term care may have to sacrifice their careers in order to do it themselves. I experienced a disruption in my career when I had to quit my job to take care of my mother for half a year as she recovered from major surgery. I don’t regret the decision but I’m still feeling the impact in my retirement funding, which is well behind where I should be at 50 years old.

Does all of this sound depressing? Honestly, I’m glad The Wall Street Journal wrote such a sober, honest article on the topic. The astronomical cost of care in the US needs to be recognized by the general population so that we can increase advocacy efforts to address this untenable situation.

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Which songs will be on your end-of-life playlist?

What songs would you like to listen to as you depart this world. Marie Curie conducted research on this intriguing topic and compiled a list of the most popular songs for those at the end of life, The Guardian reported. Familiar favorites like Frank Sinatra’s “My Way” and “Hey Jude” by the Beatles made the top 10 list, as did a couple of perhaps more surprising selections: “Girls Just Wanna Have Fun” by Cyndi Lauper and “The Best” by Tina Turner. Check out the complete top 10 list and learn more about the study on Marie Curie’s website and listen to the playlist on Spotify.

Music therapy can have a profound and positive impact at the end of life, as well as for those with conditions like Alzheimer’s disease. The Marie Curie study found that playing music had a calming effect for the vast majority of those in end of life care.

Music is a personal passion for many people, whether they play instruments or are devoted fans to particular artists and bands. There is no right or wrong answer when it comes to selecting favorite songs for an end of life playlist. Some may choose soothing music, others may want to rock out to their favorite songs that remind them of happy times in their life. I remember having a brief hospice consultation when my father was in the hospital at the end of his life. Sadly there was no room in the inpatient hospice unit for him, but I remember the counselor asking about Dad’s favorite music. That was easy to answer. Dad’s playlist would have included Bing Crosby, Frank Sinatra, and at least one rendition of “Danny Boy.”

When my mother was dying at home, I played her favorite music. Mom had fairly eclectic tastes, but she was most fond of classic country such as Willie Nelson, Dolly Parton, Kris Kristofferson, and Glen Campbell. But when my mother took her last breath, she departed on an upbeat tune by Trini Lopez, which matched Mom’s personality quite well.

I also have eclectic tastes in music so my playlist would include selections from Eva Cassidy, the McGarrigle Sisters, Gillian Welch, a mix of classic country and 1980s-1990s alternative rock, along with bluegrass and Celtic instrumentals.

What music would you include in your end of life playlist?

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A growing number of older women are living with dementia on their own

A recent article in The Washington Post discussed a growing and concerning trend: women who live alone and have dementia. Women tend to live longer than men and have a greater chance of developing dementia, so this trend is not surprising, but raising awareness may help communities better serve this aging in place population who have specialized needs.

As someone who is kinless and divorced, with dementia on both sides of my family tree, I think about this scenario often. For now, I’m focused on maintaining good overall health while I consider for my future living arrangements a planned community that intentionally accounts for the needs of their elder population. Things like providing rides to doctor’s appointments or for grocery shopping and offering lawncare and home repair services can help support an elder in the earlier stages of dementia who is living on their own. Making professional services such as financial and legal advisors is also beneficial. One of the most important tasks is one of the most simple: checking in on neighbors with dementia who are on their own to reduce isolation and as a way to ensure someone who needs a higher level of care receives it.

For long-distance caregivers, one challenge is encouraging your elder loved ones to take advantage of resources in their community. After my father died, my mother was very lonely, yet she shunned the social groups at the community senior center. I felt helpless in trying to aid in this situation. My mother didn’t have dementia, which can create an additional layer of resistance.

Here are resources for those with dementia who live alone:

The Alzheimer’s Association: If you live alone

National Institute on Aging: Tips for Living Alone With Early-Stage Dementia

Alzheimer’s Society: Living alone as a person with dementia

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Caregivers in the election spotlight again

When younger, I was a sporadic voter and I still maintain skepticism when it comes to viable government solutions to the major issues impacting our country. As this article from The 19th points out, I’m not the only caregiver who has felt abandoned by lawmakers.

Recently, both the Democrat and Republican presidential candidates offered their plans on how to better support caregivers. As we know from past elections, candidates offer many plans that sound good, but once in office, those plans are often derailed by Congress and/or the courts. Funding for programs supporting caregivers, from childcare to eldercare, always faces an uphill battle.

If the toxic political atmosphere has you feeling down, one empowering action you can take is by helping older folks and disabled people exercise their right to vote.

I’ll also be voting in honor of my former colleague, who died last month. She so wanted to live until the election, and spent the last month of her life working on a plan to be able to vote. It’s an important reminder to not take the right to vote for granted.

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Can a light and sound show for the brain treat cognitive decline?

An article published by Nature recently caught my eye. Instead of medication, a non-invasive treatment called “gamma frequency stimulation” has shown some promise in curbing further cognitive decline in those in the early stages of Alzheimer’s disease, according to early clinical trial study results.

The method may sound dubious at first but the science behind it is interesting. Researchers have discovered that in addition to amyloid and tau protein accumulation, gamma frequency oscillations in the brain occur at a reduced rate in those with Alzheimer’s. Could gamma stimulation boost frequency, reduce amyloid and tau amounts and preserve or improve cognitive functioning?

Mouse models were promising and so are the initial findings of a randomized controlled trial, which found that the “daily use of 40Hz light and sound devices in patients with probable mild AD revealed preserved brain volume, improved memory, and stabilized sleep circadian rhythms.” A longer 30-month extension of this trial found that “patients showed surprising cognitive stability” even during the COVID-19 pandemic. Other trials both at the academic and industry level have reported similar results.

What does the patient have to do to receive such treatment? One product requires a person to wear a special headset and glasses for an hour each day which produces rhythmic clicking and flashing lights that repeat 40 times a second. Another product comes in the form of a specialized light box. Researchers are attempting to make the light flicker and clicking sounds required for the gamma stimulation treatment more tolerable to users by incorporating music into some devices.

Gamma stimulation is not without health risks, especially for those prone to seizures. More research is needed and those interested should be wary of vendors selling expensive machines to consumers that have not been approved for treatment. I’ll be following developments in this trial as I’m all for effective at-home treatments that don’t require pricey medication that can come with a host of serious side effects.

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