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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Guest Article: Challenges and Ideas for Recognizing and Treating Pain, Anxiety and Agitation in Persons with Dementia

It’s an honor to be able to post this article by Brad Macy, who is a veteran hospice nurse and inventor of the Macy Catheter. If you are finding symptom management is a challenge for the loved one with dementia you care for, this article provides valuable information.

As a hospice nurse for 25 years, one of my greatest challenges was getting needed medication into patients to maintain comfort when they lost the ability to swallow. While most patients lose the ability to swallow in the last days of life, persons with dementia often experience challenges taking oral medications earlier in the disease process. In later stages of dementia, the ability to swallow becomes impaired, making oral medication administration challenging and a safety concern. In addition, due to disorientation, persons with dementia can become uncooperative or even paranoid, refusing medication altogether. 

Many medications can be stopped when patients reach a point that they have difficulty taking medications orally. But medications that control anxiety, agitation, pain or other symptoms can be extremely important to continue for quality of life for both the patient and the caregiver who suffers along with the patient. Patients and caregivers deserve to know the importance of recognizing and controlling pain, agitation and anxiety and that there is a solution to give the needed medications even when patients have difficulty taking them orally. 

Pain, Anxiety, and Agitation in Patients with Dementia 

Caregivers reporting potential symptoms of pain are sometimes told by their doctor or nurse that dementia is not painful or that persons with dementia do not experience pain. This is not true. Several studies have indicated that pain is present in at least 50% of persons with dementia. (1-4) Because of cognitive dysfunction, patients may not be able to communicate pain effectively. Caregivers need to recognize non-verbal signs of pain. For instance, if a patient winces or moans when moved it is a sign of pain and should be addressed. Crying or agitation may also be a sign of pain. If patients had a history of chronic issues with pain such as arthritis or migraines prior to dementia, it can be assumed that these issues with pain will still be present with dementia.

During the later stages of dementia, persons may have a heightened sense of pain, known as (hyperalgesia) or even have a pain response to non-painful stimuli (allodynia) where even the slightest touch can be painful. Other patients may have orthopedic injuries and need medications for pain control.  Caregivers are sometimes worried that medicating for pain will cause the patient to become too sleepy or more disoriented. On the contrary, proper medication can help the patient sleep better which leads to better functioning during the daytime. Many times, Tylenol or ibuprofen may be all that is needed, but a low dose of a stronger pain medication should not be ruled out.  If a patient is started on a stronger pain medication, they may be sleepier at first. Give it a few days, as the body adjusts to these effects within 48 to 72 hours.

Anxiety and agitation can be a common problem in dementia and many times patients are on medications over a long period to help with these symptoms.  If these medications are stopped because patients can no longer swallow, a rebound in symptoms is likely. As the disease progresses, a greater number of patients have difficulty taking medication while at the same time anxiety and agitation tend to worsen. Clinicians may shy away from medicating patients at this stage due to concern about using anti-anxiety medications, or concern that the patient may aspirate the medication or become more agitated, refusing the medication. Fortunately, options exist to ease suffering due to pain, anxiety, and agitation.

Challenges with Giving Medications

Caregivers desperate to get medication into the patient may crush medication and add it to food. This can lead to spoiling the food taste, which can negatively affect the joy of eating and interest in food. Mixing medicine with food can sometimes intensify paranoid thinking, and some patients may even believe they are being poisoned.  

When patients have difficulty swallowing, another common practice is to put drops of medication (or a quickly dissolving tablet) under the tongue.  While this works in certain instances with a few highly concentrated medications, it is rarely effective for severe symptoms and can increase the aspiration risk if medication volume is more than a few drops. Aspiration (defined as food, medication, and secretions inadvertently entering the lungs) can be a significant problem for patients with dementia and with difficulty swallowing.  Aspiration can lead to anything from an uncomfortable coughing and gagging episode, to increased agitation, unwillingness to eat or take medications, or even more serious consequences of pneumonia or bacteria in the blood stream, also known as sepsis. 

Macy-Catheter-Device

Hospi Corporation

I want patients and caregivers to know that there is a comfortable, easy and effective solution to giving medication when swallowing is difficult. The challenge of medicating patients who cannot swallow led me to develop the Macy Catheter.  It is now being used in hospices across the country and allows administration of medication discreetly into the rectum without the need for using needles or suppositories. 

Brad’s Story 

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In his 25 years practicing as a hospice nurse, Brad saw many patients and their caregivers suffer with physical symptoms of pain, agitation and other challenges when they lost the ability to swallow. This challenge of helping patients and caregivers continue providing important medications led him to create a way to easily, comfortably and safely give medication to patients who could no longer swallow. 

One night, Brad had a very agitated patient who was at home and refusing to swallow his medications. The patient’s son was at wits’ end. He had promised his father he could stay at home for his last days and not go to the hospital. While the patient had oral medication for the control of his agitation at the bedside, he was too agitated to take it.  In an effort to get the patient comfortable quickly, Brad placed the medication in a liquified form into the patient’s rectum with a small, flexible, medical tube. Within fifteen minutes Brad and the patient’s son both watched the agitation melt quickly away and the patient became calm and went to sleep. Brad rigged a way to leave the tube and attached the end of the tube to the patient’s leg where the son could squirt in the medicine without ever having to invade his father’s privacy or even move or bother him to repeat the medication doses. The son was thus empowered to keep his father completely comfortable until he died peacefully a week later. He was extremely grateful for being able to offer his father a good death. 

This was Brad’s “ah ha” moment. He started to use the same method for the myriad of different problems he encountered such as pain, infection, nausea, seizures, fever and respiratory distress and even hydration. It worked so well that the hospice he worked at asked him to train the other nurses and adopted the idea into practice. Soon nurses at other agencies began to hear about the idea and asked him to teach them the method. This was his second “ah ha” moment as he realized the great need for the solution he had stumbled upon, and that a simple, safe, easy to use, optimized device to facilitate this method was needed.  Brad co-founded Hospi Corporation and developed the Macy Catheter® which is now an FDA cleared medical device being used in hospice programs across the country. The Macy Catheter® is a small, flexible tube placed about one inch into the rectum. A small soft balloon the size of a quarter is inflated to keep it in place. When a patient has a bowel movement, the catheter is comfortably expelled and can be replaced. It is easy for caregivers to use and completely comfortable for the patient. It provides a way to continue medications at home, without the need for trips to the hospital or emergency room or the need for intravenous medications.  Learn more at www.macycatheter.com.

1. Zwakhalen SM, Koopmans RT, Geels PJ, Berger MP, Hamers JP. The prevalence of pain in nursing home residents with dementia measured using an observational pain scale. Eur J Pain. 2009;13:89–93. 
2. Van ‘t Hof CE, Zwakhalen SM, Hamers JP. Interventions after diagnosing pain in nursing home residents with dementia: the pilot implementation of an observational pain scale (PACSLAC-D) Tijdschr Gerontol Geriatr. 2011;42:67–78. 
3 Patel KV, Guralnik JM, Dansie EJ, Turk DC. Prevalence and impact of pain among older adults in the United States: findings from the 2011 National Health and Aging Trends Study. Pain. 2013;154:2649–57. doi: 10.1016/j.pain.2013.07.029. 
4. Corbett A, Husebo B, Malcangio M, Staniland A, Cohen-Mansfield J, Aarsland D, et al. Assessment and treatment of pain in people with dementia. Nat Rev Neurol. 2012;8:264–74. 

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Nursing homes on the front line of coronavirus outbreak

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Photo by Gabriella Fabbri/Freeimages

Anyone who has ever spent time in a nursing home, whether as a resident, employee or family member, know how easily communicable diseases and infections can spread in such an environment. This includes everything from the common cold to C. diff. The coronavirus is proving to be no exception.

A nursing home in Washington state is considered to be an epicenter for the coronavirus outbreak in the state and in the country. More than 20 residents have died, half of the current residents have tested positive for coronavirus and over 35 percent of staff did not report to work this week because they exhibited symptoms, The Washington Post reported. Those staff members that do come to work are risking their own health for substandard wages. Their desire to continue providing care for the residents during a national health crisis is admirable, but we must do more to support them.

While younger people may only experience mild symptoms with a coronavirus infection, our elders are most susceptible to experiencing severe symptoms that require hospitalization. As government officials and talking heads argue who is responsible for this country’s handling of the coronavirus outbreak, nursing homes across the country are facing a major challenge and the lives of our elder loved ones are at risk.

It’s no wonder why nursing homes are breeding grounds for such an outbreak. You have a community of older people, many with underlying health conditions that can lead to a weaker immune system. Some may have cognitive challenges that make such simple guidance as “wash your hands” difficult to follow. Nursing homes under normal conditions are typically understaffed. Infection control and cleaning protocols may get overlooked or shortcuts may be taken by harried staff or by the corporate office looking to maximize profit.

The coronavirus outbreak may prompt nursing homes to take actions that will help protect residents from a variety of diseases and infections. The spotlight is on them and they may finally be held accountable for deficiencies in care. (The Department of Justice recently launched a National Nursing Home Initiative that will enhance civil and criminal penalties for nursing home companies who provide substandard care.)

The CDC has prepared guidelines for nursing home staff and management to follow in preparing for coronavirus at their facilities. Some other steps nursing homes are taking to limit infection risk:

  • Barring most visitors: While this may seem cruel, it is necessary to limit the risk of infection that visitors pose to residents. Facilities are encouraging residents to use technology, such as Skype calls and the FaceTime app to stay in touch with residents. Phone calls are also encouraged.
  • Limiting or temporary canceling group activities: Limiting the infection risk associated with large gatherings is an important component of infection control.
  • Increased sanitizing of shared surfaces: Any surfaces or objects used by more than one staff member or resident should receive frequent sanitizing.
  • For facilities with confirmed coronavirus cases: Additional steps must be taken, including isolating those who test positive, have meals delivered to rooms versus serving meals in a cafeteria setting, and ensuring staff where proper protective gear when interacting with residents.

If you have a loved one in a nursing home, remain vigilant and ask about what plans the facility has in place to address the coronavirus epidemic. Don’t be afraid to speak up and contact your local health officials if you feel that a facility is not providing the level of care it needs to in order to keep residents safe.

And if you know someone who works in a care center, make sure to reach out to them to show how much you appreciate them. Do whatever you can to support them.

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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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The Memories Project receives recognition for Alzheimer’s advocacy

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Ezvid Wiki

The Memories Project blog is now in its ninth year, having started it shortly after my father’s death in 2011. Over the years, the blog has been featured on NPR and other outlets and has grown to be an advocacy platform for those with dementia and their caregivers.

The latest recognition comes in the form of a video, featured on Ezvid Wiki. The Memories Project is featured along with six other worthy organizations in a video titled, “7 Organizations Dedicated To Addressing Alzheimer’s.”

You can watch the video below:

Founded in 2011, Ezvid Wiki holds the title of world’s first video wiki. Its YouTube channel has over 500,000 subscribers, with nearly 300 million views since its founding.

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You have been diagnosed with Dementia. Now What? — Dealing with Dementia

Those of us who have cared for loved ones with Alzheimer’s can’t help but think about their chances of developing the disease or another form of dementia. In her latest Dealing with Dementia blog post, Kay Bransford shares the most important things to consider. 

I am guessing that many of you share my fear of dementia. For those of us with loved ones who have lived with it, we know how devestating it is for the individual as well as the loved ones that surround them. But it doesn’t have to be. Once diagnosed, you have so much opportunity […]

via You have been diagnosed with Dementia. Now What? — Dealing with Dementia

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February 21, 2020 · 9:27 pm

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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