Tag Archives: caregivers

Adapting to a new normal

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I recently was interviewed for a new caregiving project called Open Caregiving. The website serves as a collection for caregivers to share their experiences and offer advice to other caregivers. I was happy to participate.

If you would like to share your caregiving story, fill out this form.

One of the pieces of advice I offered that proved to be a key for me in thinking about my father’s dementia was to learn how to accept the “new normal.” While it is natural to lament what your life was like before, who your loved one with dementia was before the disease changed them, it is not helpful to be consumed with the past. Cherish those memories and try to focus on the present.

This was very hard for my mother and I to do as my father’s Alzheimer’s disease progressed further. My mother couldn’t help but correct all of the mistaken memories or gibberish that came out of my father’s mouth and I felt shame and embarrassment for my father’s state of mind. I knew how mortified he would be if he could see himself in that state of mental decline. I discuss this further in my book, The Reluctant Caregiver.

But what helped once my father was in the memory care center was simply to visit him and enjoy his company in that moment. If that meant getting him a cup of coffee or navigating him around the outdoor area for a stroll, then that was enough. I would no longer be able to discuss politics or sports with my father but I could still hold his hand and tell him I loved him.

I hope you are finding ways to adjust to the new normal as you wind your way through your own journey as a dementia caregiver.

 

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New study on family caregiving yields suprising finding

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As a journalist, I am inundated with dozens of reports on new medical studies weekly. The number has only increased during the coronavirus pandemic. One caught my eye this week, because I saw outlets running cheery headlines that set off my BS detector.

One headline example: “Long thought to be damagingly stressful, family caregiving does no harm”

That is quite a proclamation! It is certainly news to the thousands of us who have been family caregivers and experienced mental, emotional, and physical side effects. As with most such overly optimistic headlines, I go to the originating source. In this case, it’s a Johns Hopkins study, Transition to Family Caregiving, which found that “caregivers didn’t have significantly greater inflammation over a nine-year period.”

Certainly this is a significant finding, and it is good news that family caregiving may not have long-term physical effects. My concern is the way such studies are promoted across social media, which could cause family caregivers who are struggling to doubt their own experiences.

Let me be clear that caregivers should always listen to their own body, no matter what a study proclaims. Family caregivers may experience a range of emotional, mental and physical side effects attributed to caregiving. This can include anxiety, anger, depression, burnout, insomnia and appetite issues, just to name several common ailments. While these periods of stress may not trigger a response that show up in an inflammation study, it doesn’t mean that your symptoms are not real.

Bottom line, studies are useful but you know your own body better than any researcher. Don’t let rosy headlines discourage you from seeking help if you are feeling overwhelmed by the duties of family caregiving.

That being said, for those who are anxious about the long-lasting impact of family caregiving on their health, this study may help ease worries. I have found that being a family caregiver can strengthen one’s resiliency, which is a positive in these challenging times.

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“Solo” Walks (aka I Walk Alone But It’s Fine You’re There) — When Dementia Knocks

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I connected with this post on many levels. I am an only child as the author is and I often think about how various diseases, especially dementia, would challenge my fierce independent streak. There is such a valuable lesson here for those who are encountering the early stages of dementia and dementia caregivers.

When I was in my 20’s, I spent a lot of time volunteering for hospice. One of my first hospice patients was a woman in her 60’s who had dementia. Her son lived with her, but he needed a weekly respite. I was told she was active and liked to go for walks. In fact, […]

via “Solo” Walks (aka I Walk Alone But It’s Fine You’re There) — When Dementia Knocks

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July 11, 2020 · 7:13 pm

Why Dementia Means Letting Go (and Why My 2020 Theme is “Let Go”) — When Dementia Knocks

This blog post written by Elaine M. Eshbaugh, PhD, has such a good message for all of us right now, especially caregivers. It is so true that you must learn to “let go” when dealing with dementia. Those of us who have been dementia caregivers have navigated our ways through “new normals” before. Stay safe and don’t be too hard on yourself.

So what’s your personal 2020 theme? (Can you answer this question without using a four-letter word that would’ve gotten you in trouble at recess?) You’ve got your personal and family challenges, which likely include dementia since you are reading my blog. You’ve got whatever chaos is happening in your community. Maybe people are arguing about […]

via Why Dementia Means Letting Go (and Why My 2020 Theme is “Let Go”) — When Dementia Knocks

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June 12, 2020 · 9:57 pm

Honoring caregivers during difficult times

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I’d like to take this moment to express my gratitude to all of the caregivers who have gone above and beyond the call of duty to care for their clients during the coronavirus pandemic. If there is anything positive to come out of this difficult period in our history, it is that the duties of care workers are absolutely essential and have been undervalued by society.

As Ai-Jen Poo writes in the article, Bringing Dignity Back to Essential Work, “I think we have a moment where we’re all taking a step back and seeing just how many people are powering our economy that we just never saw before, that we never valued appropriately, and who keep us safe but we haven’t kept them safe.” Think about the essential workers who have made our lives easier during lockdown, including caregivers, grocery store workers, and delivery drivers. These are roles many have taken for granted, but no more. “Once you see the value of what somebody brings to your life, your safety, your community, your economy, it’s hard to unsee that,” Poo writes. I couldn’t agree more.

Immigrants, women and people of color make up a large part of the caregiver workforce, including those who provided care to my parents. As we take stock during these challenging times, we have the opportunity to address past mistakes, such as underpaying care workers and not providing them with the benefits and the community support they need and deserve. This is not an idealistic, but realistic endeavor. As Poo points out, care workers allow the rest of us to go do our jobs, increasing productivity across the board.

I’m donating to Caring Across Generations to support their work in elevating the dignity and rights of caregivers. I encourage you to support your local caregivers in whatever way you can.

 

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Finding healthy coping strategies as a caregiver

 

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A caregiver’s job was stressful enough before the coronavirus pandemic struck the world. But now, social isolation and anxiety, along with financial concerns, may feel overwhelming.

Over the last few years, I’ve spent time looking for ways caregivers can find a bit of respite, even if it’s just for an hour or an afternoon. What I learned from my work on Respite Care Share was that many caregivers aren’t seeking traditional respite care, which involves taking a longer physical break away from their loved one. While they would love a caregiving break, they worry about placing their loved one, especially those with dementia, in the care of a stranger while they’re away.

Based upon that feedback, I started focusing more on self-care, and finding realistic ways a caregiver can find some solace even in the midst of caregiving. It may be a cup of tea in the morning before everyone else is awake; it may be sitting in the garden while your loved one naps. Reading a chapter of a book after your loved one goes to bed. Listening to a favorite song while your loved one is occupied with an activity. It may not seem like much, but it can make a positive difference.

These are all things that can also be done during times of self-isolation. Supplements and herbal remedies may be helpful (but check with your doctor first.) On CBD for Caregivers, I published a post about relaxing beverages which are either non-alcoholic or lower in alcohol. The good news is that there are a variety such beverages available now, and many are quite tasty! One of my new favorites is Hella Cocktail Co.’s Bitters & Soda. It’s a nice beverage to sip while sitting outside in the area of the yard I’ve transformed into my respite corner.

Challenging times like these can find us slipping into bad habits like excessive drinking, smoking, overeating, etc. I hope you have or can find a healthier way to navigate these stressful times while keeping you and your family safe.

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Stay at Home with a Good Book – AlzAuthors Anthology Two is Now Available in Paperback — AlzAuthors: Alzheimer’s and Dementia Books, Blogs, Stories

Honored to have been able to share my caregiving experience that inspired The Reluctant Caregiver included in this collection.

Life these days is turned upside down for most of us, due to the COVID-19 pandemic. There is so much uncertainty, fear, and loss. Those of us caring for loved ones with Alzheimer’s and other dementias find ourselves stressed, not only from our usual pressures but the new ones the virus has delivered: stay-at-home orders…

via Stay at Home with a Good Book – AlzAuthors Anthology Two is Now Available in Paperback — AlzAuthors: Alzheimer’s and Dementia Books, Blogs, Stories

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April 17, 2020 · 4:49 pm

Guest post: How to Help Your Senior Loved One Stay Healthy from Afar

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I’ve been blessed recently to have two guest authors submit pieces to share on The Memories Project. Today’s post is written by Claire Wentz of Caring from Afar. It is an especially appropriate topic to discuss as we practice social distancing due to the coronavirus.

When you have a senior loved one who lives far away, it can be stressful to ensure they are well taken care of at all times. Travel may not always be feasible, especially if you work outside the home or have family obligations, and it can be expensive. Fortunately, there are some things you can do to ensure that your loved one is safe, healthy, and comfortable no matter how far away you are. Using technology to your advantage is always a good idea; here are some tips on how you can utilize it as well as some ideas on how to help the senior in your life stay safe and happy.

Take Advantage of Smartphones

Smartphones are a useful tool for seniors since they provide a way to contact friends and loved ones as well as a way to stream content and play games and puzzles via apps that will help keep their cognitive skills sharp. You can also download a location-tracking app to their phone so that you can locate your loved one in case of emergencies. If your loved one is unsure of how to use a smart device, look for a class near them (or online) that will help them learn the ins and outs of phones and tablets.

Help Them Invest in Smart Tech

These days, there are several different kinds of smart tech available for the home, and it’s a great way for seniors to be more independent and safe. From home security systems to voice-activated virtual assistants and smart appliances, there are so many ways seniors can utilize technology in their everyday lives and make it a seamless transition. Talk to your loved one about their specific needs, such as whether they could use a virtual assistant that will give them voice control over everything from making phone calls to turning on the oven.

Help Them Find a Hobby

Hobbies are wonderful things; not only do they help us stay happy and boost our mental health, but they can also affect our physical wellness. From playing a sport to woodworking and gardening, there are many different kinds of hobbies out there that are perfect for seniors of any age. So, talk to your loved one about their favorite things to do and help them find a group in their area to join or an online group where they can feel like they’re a part of something and remain social. If the hobby involves physical activity, all the better, as seniors need daily exercise in order to prevent many health issues and falls.

Talk to Their Neighbors

Whether your loved one owns their home or rents an apartment, it’s a good idea to talk to their neighbors and get to know them a little. Creating a rapport with the people closest to your loved one will help to give you peace of mind when you live far away, as they may be able to help out when you’re not there. Exchange information so you can stay in touch with one another, especially if your loved one lives alone or is aging in place.

Helping a loved one stay healthy and safe when you live far away can be challenging, but with the aid of technology and a few lifestyle changes, the senior in your life can ensure that they are safe and comfortable throughout the years.

Learn more caregiver tips at Caring from Afar.

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What dementia caregivers need to know about the coronavirus

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Managing the health of our loved ones with dementia is difficult enough even when we are dealing with the annual flu season. This year has ushered in a new coronavirus, which is causing an outbreak of serious respiratory disease that began in China and has now spread across the globe, including in the U.S. While 24/7 news coverage has caused some to panic and others to go into denial, caregivers should be concerned about the coronavirus, as they would with any virus which is highly contagious and has a higher mortality rate in older populations and those with compromised immune systems.

Here are some tips for caregivers of those with dementia as they encounter a world which has been disrupted by the coronavirus. (Disclaimer: I am not a medical professional. If you have any questions surrounding the coronavirus, please consult a physician.)

  • Symptoms: Those with dementia often can’t clearly express how they are feeling. Their caregivers must be vigilant in tracking any changes in their physical health. According to the CDC, there are 3  main symptoms associated with coronavirus: fever, cough, and shortness of breath. Emergency symptoms include difficulty breathing, chest pain, new confusion separate from dementia, and bluish lips or face.
  • How it spreads: The CDC believes that the coronavirus spreads easily, primarily by person-to-person contact. The CDC recommends not touching your face, covering your mouth when sneezing or coughing, frequent hand washing, and frequent disinfecting of commonly used surfaces and objects. Caregivers will want to pay special attention to their own health, and make contingency plans now for who will take care of your loved one if you contract the coronavirus.
  • For those with dementia who are diagnosed with coronavirus: If they have a mild case that does not require hospitalization, you will want to keep them isolated at home, separate from other family members. Those with dementia are often sensitive to any changes in their routine, so you may need to get creative in explaining these changes to your loved one. Use your best judgment, but it may  be best to avoid potentially frightening words like “quarantine.” Try to involve your loved one in tasks they enjoy, such as puzzles, crafts, or listening to music or watching TV. Keep your loved one comfortable and monitor for any spikes in symptoms; unless it’s an emergency, call ahead if you need to visit the doctor.
  • Keep public outings to a minimum: You may want to keep public outings to a minimum until the coronavirus outbreak is under control in your community. It can be a challenge to manage the movements of those with dementia in public settings and they may not comprehend or forget instructions such as hand washing.
  • What about facemasks? The CDC does not recommend facemasks for those who are healthy. For those with coronavirus and their caregivers, facemasks are recommended. It may be a challenge to keep a facemask on a person with dementia, which is why it’s so important for caregivers to wear masks and to isolate those who are ill so they cannot spread the disease.
  • What can caregivers do to prepare? Plan now for a potential outbreak in your community. Stock up on supplies, including food, hygiene, and basic medical supplies. Make sure prescriptions are filled. If your loved one is used to attending activities such as adult day care, create alternative activities at home. Make a contingency plan in case you become sick. Contact your support network and develop a specific coronavirus plan. Reach out to public health agencies in your area for further aid.

It is too early to know how much of an outbreak of coronavirus we will experience in the U.S. I do think it’s going to get worse before it gets better. And if history is any indicator, there may be additional outbreaks that arise in future seasons, so caregivers should remain vigilant even if there is a lull in the summer. Take proper precautions for your loved one with dementia and yourself, and we should be able to weather this storm.

Next week, I’ll discuss the challenges that nursing homes are facing in trying to prevent coronavirus outbreaks in their communities.

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How technology can be an ally to caregivers

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Google’s Super Bowl commercial, “Loretta,” touched a nerve. I was very moved by the love story the commercial told, inspired by the grandfather of a Google employee. The ad shows how technology (in this case, Google Assistant) can be put to good use, allowing a man to fondly remember his late wife through images and sound. Many people felt the same way I did about the commercial, but a vocal minority expressed their reservations.

While I can understand people’s concerns about privacy rights and the automation of our lives, we can’t let our fears trump the benefits that technology can offer. For example, in this commercial from Google, a simple tool offered many benefits, especially to older generations and their caregivers.

  • Digital photo album: While those of us of a certain age may treasure our physical photos, we have to understand that for younger generations, digital photographs are the norm. I love looking at old photos in physical form, but I also love having access to those same images online. It also makes sharing from afar so simple. In this day and age, when family members often don’t live near one another, this can be a major benefit.
  • Using reminders to prompt memories: While critics found this feature creepy, those of us who have dealt with dementia in our families know how precious memories can be. I know of a family caregiver who writes out cards with explanations to the daily questions she receives from her mother who has dementia. The cards are a great source of comfort to her mother (and sanity-saving for the family!) A smart assistant could recite the recorded answers.
  • Combatting loneliness: This point is controversial, as I read one commenter who interpreted the Google commercial to mean that we have permission to leave old lonely people on their own with a smart device as a substitute to visiting them. I don’t interpret the ad like that at all. But loneliness among the elder population, especially in rural areas, is a real concern. Anything we can do to alleviate that isolation can be beneficial both mentally and physically. My mother had a talking parrot toy she talked to when Dad moved to the memory care center. The need is there for such interactive devices.

I strongly feel it is in our best interest to embrace technology while holding companies accountable when they violate privacy rights and engage in other nefarious activities. Bottom line, technology is not going away. I prefer to educate myself and others on the benefits and be a responsible user versus burying my head in the doomsday bunker.

 

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