The value of living in the present

Those of us who have dealt with Alzheimer’s in our families know just how particularly cruel this disease can be. Much of that has to do with the loss of the person, their personality and memories. They become a shell of the person they were and it can be difficult for family members to adjust. This thoughtful blog post below highlights the benefits of living in the present, as so many people with dementia do.

“Memories warm you up from the inside.” This was written in fancy cursive on the wall of a memory care community that had invited me to do a staff in-service. I’m not sure who decided this was a great quote to post on the wall in such a setting. I’d like to ask them about […]

via The Importance (Or Lack of Importance) of Memories in Dementialand — Welcome to Dementialand

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Lessons on life from dying children

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File image via Pixabay. (Not Dr. McAlpine.)

A Twitter thread by a pediatrician has been making the rounds lately, and for good reason. Dr. Alastair McAlpine asked some of his terminal pediatric palliative care patients what has mattered the most to them in life, and what has given their lives the most meaning. The children’s answers are both simple and profound, and something we adults should take to heart.

The things so many of us are hooked on, such as television or social media, did not make the kids’ important list. Family, pets, books and ice cream did rank high. These young souls whose lives will most likely be cut short barring a medical miracle shared a couple of values they found to be the most important. Kindness and a sense of humor made the list, not wealth or celebrity.

I encourage you to read the short thread on Twitter. At the end, Dr. McAlpine offers a takeaway for all of us.

We could all use a reminder to let go of negative thoughts and regrets and focus on the truly important people and things in our lives.

At the very least, we can commit to enjoying more ice cream.

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Self-help book giveaway

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As a caregiver, my resolution was just to survive another day. Whether you are maintaining your resolutions so far this year or are in need of some inspiration, these self-help books may be just what you need.

Almost two dozen self-help books, including my essay collection, The Reluctant Caregiver, are available for free via Instafreebie. There are books offering advice on everything from finances, health, relationships and even hair.

Book giveaway: Self-help books to jump-start the new year

If you do download and read The Reluctant Caregiver, I’d appreciate an honest review on Amazon or Goodreads. Of course, I’d love to hear your thoughts here as well. I consider family caregivers to be the best critics, because they’ve lived the life. Thanks for reading!

What is your favorite self-help book? Is there a self-help book for caregivers that you recommend?

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How can we improve doctor-family caregiver communication?

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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.

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This year’s bad flu season even worse for seniors

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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.

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Taking care of our ‘elder orphans’

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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.

 

 

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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

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