Tag Archives: home care

October 30, 2021 · 11:11 am

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.

Leave a comment

Filed under Awareness & Activism

Tagged as , , , , ,

July 25, 2021 · 10:52 am

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.

Leave a comment

Filed under Awareness & Activism

Tagged as , , , , ,

May 28, 2017 · 11:50 am

Don’t miss “Care,” a powerful documentary about home care

care poster custom

Courtesy of Care.

A frustrated caregiver recently posted on social media: “We need more than awareness, we need action.”

I totally agree, and while raising awareness of conditions like Alzheimer’s and the sacrifices that family caregivers make is important to push these issues into the mainstream, at some point, messages of support are not enough. Action, from community involvement all the way to federal funding is essential to truly make a difference.

That’s why I’m excited about a new documentary, Care, that examines the hard, often thankless and definitely underpaid work that home-based caregivers perform and offers a call to action on how we can better support these caregivers and families. Caring Across Generations is hosting screenings across the country.  In addition to in-person screenings, the documentary will become available via streaming options later this year.

The documentary profiles caregivers from different ethnic backgrounds and from different regions of the U.S., spotlighting challenges but also providing a testament as to why some people feel called to provide care to those in need. The documentary doesn’t shy away from the harsh realities of caregiving, showing in detail the difficult physical and emotional work involved. Family members discuss the difficulties of caring for someone at home and those receiving care talk about the loss of independence that often accompanies disease and aging.

For anyone in the metro Atlanta area, I will be participating in a Care screening and panel discussion at Amy’s Place in Roswell on June 7 starting at 6:30 p.m. As I’ve mentioned before, Amy’s Place is a memory care cafe that hosts wonderful community events for those with dementia and their caregivers.

MORE INFO: CARE poster_Roswell Screening

Caring Across Generations is also looking for people just like you, current and former caregivers, who are willing to share their stories. If interested, you can reach out to me via email at joyjohnston.writer@gmail.com.

Check out the trailer below:

 

1 Comment

Filed under Awareness & Activism

Tagged as , , ,

February 7, 2015 · 10:56 am

Another heart-stopping false alarm

So I finally was able to set my mom up with a personal care service, in addition to the home nurse visits. The personal care attendant was supposed to take my mom grocery shopping yesterday afternoon. Around noon, I was at work and received a call from a number that I did not recognize but with the same area code as where my mom lives.

I answered and it was the woman who runs the personal care agency. She said the attendant going to see my mom finished up a bit early with her previous call and she headed over to my mother’s house a bit early. But she knocked on the door multiple times and there was no response.

alarm bell

So of course I go into immediate panic mode in my head. Just like in those commercials, Mom’s fallen and she can’t get up!

I told the woman I would try calling her phone number and if she didn’t respond, there is a house key in a lockbox on the property.

I could feel my heart pounding with every ring on my mom’s line. Finally, Mom picked up. She sounded a little frazzled.

Turns out Mom was getting ready in the bathroom which has a loud heat vent. She couldn’t hear the knocking.

So Mom was okay, just a bit annoyed that the attendant was early … don’t mess with elderly people’s schedule! This is true also for those with dementia, any change of plans or a schedule can really upset them. It’s something many of us caregivers have learned the hard way.

It took a while for my heart rate to return to normal, but so grateful that it turned out to be a false alarm.

What kinds of false alarms have you experienced as a caregiver?

1 Comment

Filed under Memories

Tagged as , , , ,

January 26, 2015 · 8:00 am

Guest article: Preparing for at-home care for a loved one with dementia

By Helen White, freelance writer

The decision to try at-home care for a parent or other close relative with dementia isn’t one that’s made lightly. It’s exhausting work, both mentally and physically, and it can be heart-rending for children of parents with dementia to see the changes that the disease brings. If you’ve made the decision, there’s a lot of preparation to be done, both in the home, to create a safe environment, and in the heart, to help you stay strong and able to cope with your new role as care-giver.

Simplifying the Home and Improving Safety

For someone with dementia, even the simplest everyday tasks and items can become fraught with difficulty. Simplifying the home, reducing clutter, and making spaces more accessible is hugely important to prevent over-stimulation and agitation, as well as accidents that may lead to physical harm.

  • Create “walking paths” so that there’s a direct and easy-to-follow path between each room. Remove or tack down any rugs on the floor.
  • Reduce household clutter, both to prevent accidents and to reduce the likelihood of over-stimulation caused by information overload.
  • Improve lighting to reduce dark spots and shadows, which can cause confusion and distress.
  • It may be helpful to label certain areas and items; for example a “bathroom” sign, and labels for kitchen drawers.
  • Add grab bars where applicable in bathrooms (e.g. for the bath, shower, or toilet) and add non-slip flooring or mats.
  • Consider child-proof locks for electrical devices and wall outlets.
  • Secure any rooms or items that are potentially dangerous or breakable—for example, the garage, basement, attic, or swimming pool, computer equipment, and machinery.
  • Add safety locks to any doors that lead outdoors, and install window devices to limit how far they can open.

shower chair

Preparing the home is sometimes a matter of trial and error: you don’t know how your loved one will react to certain things until they’re with you on a daily basis. Initially at least, focus your efforts on safety, and over time you may find there are additional changes you can make to the home to make things more comfortable and calming.

Setting Up a Routine

For someone with dementia, routine is incredibly important. Having a routine helps them make better sense of a world that is increasingly confusing, and it’s important that your loved one knows there are certain things they can rely on, like a mid-morning snack at the same time every day, or a favorite television program each evening. In situations where their loved one has become agitated, having an established routine can also help a care-giver get things back on track and help their loved one calm down.

  • A routine doesn’t need to be strictly regimented and fill up an entire day; it should just provide the day with structure. For example, it might include:
  • Opening bedroom curtains at the same time every morning to signal the start of a new day
  • Meals and snacks, and medications, at scheduled times.
  • Daily activity time, visitors, outings.
  • Shower or bath time before bed.
  • Playing a relaxing piece of music at bedtime.

Don’t Neglect Your Own Self-Care

Caring for a person with dementia is both physically and mentally demanding, particularly for non-professional care-givers taking care of family members. It’s a situation that can lead to exhaustion, burn-out, and even depression on the part of the carer, so it’s vital that you’re able to take breaks on a regular basis, including days and evenings off. So, as part of preparing to bring your loved one home, try and set up a schedule of some kind, to make sure each person who is acting as carer has sufficient time off.

Having a good support system in place from the start is also very helpful. For example, joining a support group for care-giving families can provide a means of expressing emotions in a safe and non-judgmental environment. This is hugely important, because it’s natural for care-givers to feel negatively-perceived emotions like frustration, fear, and sadness, and they need a safe outlet in which to express them.

References

A Place for Mom (March 2013). “Maintaining Dignity for Dementia Patients.” Accessed January 12, 2015. Caring with kindness.

Carol B. Larkin (May 2012). “A Guide to Safe-Guarding Your Home for Alzheimer’s Patients.” Accessed January 12, 2015. Simplifying home and routine.

Aging Care. “Senior Care Products.” Accessed January 12, 2015. Products for at-home senior care.

Help Guide. “Dementia and Alzheimer’s Care: Planning and Preparing for the Road Ahead.” Accessed January 12, 2015. Preparing the home.

Phillips Lifeline (May 2014). “Proper Dementia Care Can Help Patients Remain at Home Longer.” Accessed January 12, 2015. Benefits of at-home care.

Psych Guides. “Living With: A Family Member With Dementia.” Accessed January 12, 2105. At-home care.

Visiting Angels. “Preparing the Home for Senior Care with Dementia or Alzheimer’s. Accessed January 12, 2015. Home preparation.

Leave a comment

Filed under Awareness & Activism

Tagged as , ,