Category Archives: Awareness & Activism

January 22, 2018 · 3:23 pm

How can we improve doctor-family caregiver communication?

doctor-563428_640

Pixabay

I am a member of several caregiver Facebook groups and one common thread I read about is the frustration family members experience trying to communicate with doctors. From hospital discharge plans to changes in medication, family caregivers often feel like they are left in the dark by physicians, which makes caregiving even more of a challenge.

Doctors typically respond that they don’t have time to have such discussions with caregivers, leaving that task to nurses or other hospital staff members. Some doctors also exhibit a reflexive reluctance to establish communication with a patient’s family members.

It’s clear that there are tangible benefits in making sure a patient’s family has the necessary resources to manage a loved one’s care at home. The ultimate goal is to reduce the amount of repeat hospitalizations. Empowering family caregivers with information on medication, at-home treatments and home health services can make a major difference in a patient’s recovery.

I felt the communication involving my father’s care was handled poorly. So many decisions seemed to be made with little input from family because we weren’t present at the moment of crisis. With my mother, I accompanied her through hospital stays and was there to advocate for her, so the communication was better.  There were plenty of times when I had to extract information out of an inpatient, reluctant doctor, but I learned to push until I got the answers I needed.

It shouldn’t be so difficult for family members to obtain information on their loved one’s medical status and future care plan. This should be an automatic discussion, whether it’s done with a doctor or other health care professional. The CARE Act, passed in many states, directly addresses this issue and makes sure family members are involved in hospital discharge plans. The RAISE Family Caregivers Act, if signed into law by the president, could also address this issue and offer a national recommendation.

My heart goes out to those caregivers who are dealing with the frustrating process of communicating with medical professionals. I hope legislation along with continuing caregiver advocacy helps improve the frequency and quality of doctor and family caregiver communication.

1 Comment

Filed under Awareness & Activism

Tagged as , , ,

January 15, 2018 · 2:11 pm

This year’s bad flu season even worse for seniors

tissue-box-1420439-639x491

Photo: David Lat/Freeimages

It’s the time of year when you can expect to hear a lot of coughing, sniffling and sneezing in public spaces. I just came back from the dentist and the receptionist sounded like she had flu symptoms. As my parents aged and developed health issues, I became more aware of the flu being a serious concern and not just a pesky ailment.

I’ve been reading a lot about how bad this year’s flu season is in the U.S. The flu deaths of children as well as young adults who were otherwise healthy have captured news headlines. While older people are more susceptible to experiencing severe symptoms when it comes to the flu, this year’s dominant strain is particularly of concern.

The H3N2 flu strain has reared its ugly head this season, STAT reported. Referring to H3N2 as the “problem child of seasonal flu,” this strain tends to strike seniors particularly hard, and usually leads to a spike in flu-related deaths. While it hasn’t been proven that H3N2 is actually more virulent than other strains, its ability to mutate has made it difficult to create a successful vaccine. Researchers also pose a theory of imprinting, in which a person’s ability to fight off the flu is associated with the person’s earliest experiences with the flu. Since H3N2 first emerged in 1968, our elder population would not have been exposed to the strain during childhood.

Another vulnerable population when it comes to the flu is people with dementia. It can be hard to enforce preventative measures such as washing hands when someone has memory issues. Those in the mid-stages of Alzheimer’s may wander and pick up objects, or put things in their mouth.

In the last year of his life, my father was only partially verbal. If he was experiencing pain or any other symptom, I’m not certain he could have expressed it. Family caregivers are forced to look for secondary symptoms and related behaviors, such as a person’s appetite wanes because they don’t feel well. Certainly things like a cough or runny nose are obvious, but other symptoms may be more difficult to spot. Their throat hurts so they don’t want to consume food. Their nose is stuffy and they can’t smell food, impacting their appetite. They feel exhausted so they don’t want to get out of bed.

Treating flu symptoms of those with dementia can also be difficult. Anything that disrupts the routine can be a challenge for those with Alzheimer’s. My father was paranoid about taking pills or any kind of medication. Caregivers have to be creative when it comes to treatment. Don’t hesitate to take your loved one to the doctor if you are having difficulty managing symptoms. For those of you with loved ones in facility care, be extra vigilant in observing for flu symptoms when visiting, and make sure issues are addressed promptly by staff.

Here’s to hoping we can all stay healthy and avoid the flu this season.

Leave a comment

Filed under Awareness & Activism

Tagged as , , , ,

January 8, 2018 · 7:00 am

Taking care of our ‘elder orphans’

human-511848_640

Photo: Pixabay

Now solidly middle-age and reflecting more upon my own mortality after the deaths of my parents, aging well is a top concern of mine.

Aging well means something different to everyone, but living independently with as little assistance as possible is a priority for me.  I read an article about “elder orphans,” a term used to describe older people who live alone without a support network. As our society has moved away from the nuclear family model, and more people are deciding not to have children, the number of elder orphans will likely grow dramatically over the next several decades. The author of the article believes that baby boomers will also experience an uptick of elder orphans.

Not only are modern families smaller, but members are more likely to be spread out geographically, which can complicate caregiving situations. Women, traditionally the caregivers in the family unit, have demanding careers that limit their ability to be caregivers. (Though we know there are plenty of family caregivers who work full-time and care for a loved one, which can lead to burnout.)

Some people, like my mother, become an unwilling elder orphan after their spouse dies. My mother was able to take care of herself until the last few months of her life, but she did not enjoy living alone. She missed the daily companionship and experienced loneliness living in a rural community without friends or family nearby. Yet even when she was still in good health, I couldn’t convince her to visit the community senior center.

So how can we better take care of our elder orphans? I’ve written before about aging in place and how some communities are being proactive in addressing the needs of their aging population. Infrastructure needs like housing and transportation is integral, but so are communities with residents who have an awareness and dedication to helping their elders age safely. Programs like Meals on Wheels isn’t just about receiving food, but serves as the only regular safety check that many older people living alone receive. The frigid winter weather has encouraged people to check in on their elder neighbors, and that’s something we should be doing all year long.

While we can’t predict how our own health issues will impact our hopes of aging well, we can plant the seeds now to create a safe and welcoming environment for elder orphans.

 

 

2 Comments

Filed under Awareness & Activism

Tagged as , , ,

January 1, 2018 · 6:50 pm

Challenges Facing Alzheimer’s Caregivers

Let’s start 2018 with getting back to basics. I come across so many family caregivers who have received no education or training about their loved one’s condition. If the medical community doesn’t have time to address this, then we will have to teach each other.

Here’s a good overview of Alzheimer’s disease from The Diary of an Alzheimer’s Caregiver blog. I especially like the infographic from GeriatricNursing.org that offers dementia caregivers alternative, healthier responses when they are faced with challenging behaviors.

via Challenges Facing Alzheimer’s Caregivers — The Diary of An Alzheimer’s Caregiver

Leave a comment

Filed under Awareness & Activism

Tagged as , , ,

December 26, 2017 · 10:00 am

Caregiver wishes for 2018

design-2711676_640

Pixabay

Now that we have moved into post-Christmas, it’s time to think about 2017’s wins and losses and what we hope to accomplish in the new year.

Despite 2017 being a difficult year for many, it was not without successes when it comes to caregivers. In Hawaii, the Kupuna Caregivers Act was passed, making it the first state to compensate family caregivers who also work full-time. In 2018, as the law is fully implemented in the state, all eyes will be on the success or challenges the legislation generates.

Earlier this month, the RAISE Family Caregivers Act was passed. The bipartisan legislation will create a national strategy to support family caregivers, by providing training and better access to services. It remains to be seen how the act is implemented, once President Trump signs the bill into law. Caregiver advocates are hopeful it’s a step in the right direction.

Even with the threat of looming funding cuts under the new administration, Alzheimer’s research received a $400 million increase in funding as part of the National Institutes of Health budget.

As for challenges, Alzheimer’s research had a disappointing year overall, as admitted by those in the field. Major Alzheimer’s research studies failed to bring about the results and answers experts hoped. But scientists have many areas of Alzheimer’s to still explore, and hopefully the additional research funding will help with this cause in 2018.

The threat of cuts in health care loom large in 2018, though it’s all still up for debate. However one may feel about entitlement programs, cuts to Medicare and Medicaid will hurt caregivers. The uncertain status of the Affordable Care Act also is a concern for caregiver advocates. Health care should be a bipartisan issue, but it is sadly the opposite in the current political climate.

Speaking of controversial issues, immigration also has a direct impact on caregiving. With the current administration’s immigration crackdown, there will be an even greater shortage of paid caregivers than expected over the coming decade. There was already a predicted shortage because of our rapidly aging population, but couple that with a decrease in the immigrant population, and you have the recipe for a disaster. Again, however one may feel about the issue, immigrants provide a great amount of underpaid care to our nation’s elder population. Most Americans will not work for the pitifully low wages caregivers earn.

In 2018, I will be following legislation and programs supporting caregivers that are implemented at the state level. Universal Family Care is being discussed in some states, and I hope the conversation around how to best support family caregivers continues to grow next year.

What do you hope to happen in your state in 2018 to support paid and family caregivers?

Leave a comment

Filed under Awareness & Activism

Tagged as , , ,

November 27, 2017 · 8:00 am

Caregiver centers offer resources, respite

hand-2906458_1920

Photo: Pixabay

I’m always interested in seeing how local communities are addressing the needs of caregivers. While it might be more convenient if such programs we’re centralized, there is quite a bit of innovation taking place at the community level that probably wouldn’t be possible with the red tape associated with federal government projects.

I was reading about the first caregivers center on Long Island, which is set to launch next year. The Family Caregiving Center will open at the Peconic Bay Medical Center in early 2018, providing caregivers with information on local resources, education seminars and counseling from care coaches.

Long Island, like other communities that are spread out geographically and lack efficient transportation options, faces challenges in serving its caregiver community. The caregiver center’s dedicated space will offer a respite for weary caregivers, while their loved ones are receiving hospital services.

The program’s director said while the hospital has been offering a family caregiver support group for the past few years, it’s become apparent that caregivers need more support. The director said it was a poignant conversation with a patient that really drove that point home. When she was sitting at a patient’s bedside in the ICU, she asked the patient if there was anything she could do to help. The man said his daughter could use support. He said that while he was receiving great support as a patient, his daughter wasn’t receiving any help as a caregiver.

That man’s selfless request helped spark the creation of the Family Caregiving Center. It will no doubt help many families for years to come.

1 Comment

Filed under Awareness & Activism

Tagged as , , ,

November 21, 2017 · 9:20 am

Touching wish from woman with Alzheimer’s

As National Caregiver Appreciation Month winds down, I came across this touching video from a women with Alzheimer’s. Pam Montana is in the early stages of Alzheimer’s, and knows what lies ahead. But she is not as concerned about herself as she is about her husband. Watch below as she explains her wish to family and friends.

Pam’s heartfelt message is a touching reminder for all of us to not forget about the caregivers of those with Alzheimer’s and dementia. As Pam says, Alzheimer’s caregivers often feel isolation and suffer from depression. Don’t abandon them. Offer a sympathetic ear, check in on them to see how they’re doing, or offer to stay with their loved one so they can escape the house for a bit.

As Pam poignantly states, there will come a time when she will likely forget who her husband is. She doesn’t want their family and friends to do the same.

How do you stay in touch with caregivers in your life?

Leave a comment

Filed under Awareness & Activism

Tagged as , , ,

November 15, 2017 · 10:00 am

AlzAuthors ebook sale is now live

Caregiver App Month Canva 2017

In honor of National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month, the authors group that I belong to, AlzAuthors, is hosting an ebook sale.

From now through Nov. 21, you can choose from over a dozen books written by  AlzAuthors members. While the topics of these books focus on Alzheimer’s and dementia, there’s a wide range of genres, from nonfiction to fiction and self-help guides. Prices range from free to $2.99. The Reluctant Caregiver, my collection of nontraditional essays on caregiving, is part of this sale. I had already reduced the price in half for this special month, but for the next week, you can purchase my book for only 99 cents.

It’s a great time to stock up, just in time for those long winter months when there’s more time for reading.

You can find more information about the ebook sale on the AlzAuthors blog.

Leave a comment

Filed under Awareness & Activism

Tagged as , , , , ,

November 11, 2017 · 5:10 pm

‘The Weight of Honor’ sheds light on family caregivers of veterans

On this Veterans Day weekend, I can’t think of a better topic to discuss than the new documentary, “The Weight of Honor.”

I have been following the making of this important documentary for awhile. I donated a very nominal amount (wish it could have been more) and received a lovely thanks in the film’s credits. It’s an honor to help support this documentary, which depicts those who often remain invisible: the family caregivers of military veterans. The filmmakers followed a group of female caregivers of catastrophically wounded veterans for five years, charting their triumphs and struggles.

Caring for wounded warriors is a unique experience, as debilitating physical wounds are often accompanied by equally brutal psychic wounds. PTSD can make recovery a challenge, which means the burden on caregivers is even greater. Along with that, many military wives are young and tending to children when their wounded husband returns home, requiring constant care. The documentary doesn’t shy away from the consequences of stress and caregiver burnout, and how it can end up straining relationships.

Overall, “The Weight of Honor” displays the tremendous resiliency that these caregivers exhibit every day of their lives. A life forever changed by the violence of war, but a life that they are determined to make the best of for their families. I’m thankful that the filmmakers chose to tell their stories in such compassionate detail.

I hope you get a chance to see this film. It is available for streaming on Amazon, YouTube and other major platforms. I’d love to hear what you think about it.

 

Leave a comment

Filed under Awareness & Activism

Tagged as , , ,

November 8, 2017 · 8:00 am

Understanding the importance of self-care for Alzheimer’s disease caregivers

holding hands

Image courtesy of Pixabay.

Here is a guest post from Lydia Chan of Alzheimer’s Caregiver. Her post covers a topic I strongly support: self-care for caregivers.

November is National Family Caregivers Month and National Alzheimer’s Disease Awareness Month.  It’s important to understand the implications of caring for Alzheimer’s patients.  The disease is far-reaching, and being a caregiver is taxing physically and mentally.  If you’re a caregiver for someone with Alzheimer’s, here are some ways to offset the stress you may be experiencing.

If you care for someone with Alzheimer’s Disease, you are not alone.  There are almost 15 million dementia and Alzheimer’s caregivers in America.  At this time, there is no cure for Alzheimer’s, and there is limited relief for symptoms.  This leaves caregivers with what experts at HelpGuide describe as “a series of grief experiences as you watch your loved one’s memories disappear and skills erode. The person with Alzheimer’s will change and behave in different, sometimes disturbing or upsetting ways. For both caretakers and their patients, these changes can produce an emotional wallop of confusion, anger, and sadness.”

Potential burnout.  Caring for a loved one struggling with this disease can lead to burnout.  The chronic stress of the situation is emotionally and physically exhausting, and can leave you with no energy or interest to care for yourself or anyone else.  Here are signs some experts say indicate you may be reaching the breaking point:

  • Abuse of alcohol or medications
  • Unhealthy changes in appetite – overeating or undereating
  • Depression, hopelessness, loss of energy
  • Feeling alienated
  • Lack of self-control physically or emotionally
  • Rough treatment or neglect of the patient
  • Inability to sleep
  • Inability to concentrate
  • Not keeping appointments

Self-care for the caregiver.  Because you are traveling this difficult road, it’s essential that you take care of yourself.  Experts at the National Institute on Aging recommend the following:

Connect.  Participate in a caregivers’ support groups and spend time with friends.

Recreate.  Spend time doing your favorite hobbies and activities.

Maintain your physical health.  Eat right, exercise, and get enough sleep.  Keep up routine medical exams.

Get help.  Don’t try to do everything all the time.  Take breaks daily and ask family members and friends to assist with some caregiving duties. Be specific when you ask for help from other family members and friends.  For instance, ask for someone to prepare supper or take your loved one shopping.  If you are having trouble finding help, you can pay someone to help for a couple hours per day.  If that isn’t possible, even a couple hours per week can provide relief.  If you aren’t sure how to find services, check out the Eldercare Locator.

Spend time with Fido.  Part of your self-care routine can include time with your four-legged family member.  According to some experts, dogs are a terrific relief for anxiety and depression.  Here are some of the ways your pooch can improve your well-being:

  • Lowers your blood pressure.
  • Offers a soothing presence.
  • Reduces cortisol.
  • Helps you forget negative emotions such as anger and frustration.
  • Offers unconditional support, love and companionship.
  • Encourages exercise.
  • Gets you outside to enjoy fresh air and sunshine.
  • Increases social interaction.

Make sure your time with your dog is a stress-reducer and not a stress-inducer.  If you have trouble getting to your dog’s needs at times, hire a dog walker to reduce stress associated with getting your pup exercised when you can’t be at home.

Your needs as a caregiver.  As someone who cares for an Alzheimer’s patient, you are under a fair amount of pressure.  Without proper care of yourself, you risk burnout.  Embrace a healthy, balanced lifestyle with good self-care. You will have more to offer yourself and the loved one you’re caring for.

For more respite care resources, visit Respite Care Share.

2 Comments

Filed under Awareness & Activism

Tagged as , , , ,