Tag Archives: dementia

Adapting to a new normal

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John Hain/Pixabay

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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“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

Alzheimer’s and Brain Awareness Month book sale

June is Alzheimer’s and Brain Awareness Month, a time to raise awareness of Alzheimer’s disease and to decrease the stigma and silence that too often accompanies an Alzheimer’s diagnosis.

To mark this important campaign, AlzAuthors hosts a book sale and giveaway each June. AlzAuthors is a global community of authors writing about Alzheimer’s and dementia from personal experience, whether as a caregiver or as a person living with these conditions.

I’m proud to be a part of this organization, and I’m excited my book, The Reluctant Caregiver, is a part of this sale. From June 15th through June 22nd you can get my book for half off and find great deals in a variety of genres, including fiction, memoir, non-fiction, and children’s and teen literature. Most are available in Kindle and e-book formats, and many are available in paperback and audio. AlzAuthors is proud to share its library of carefully vetted books to help guide you on your own dementia journey.

SHOP NOW: Alzheimer’s and Brain Awareness Month book sale and giveaway sponsored by AlzAuthors

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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

Are There Do’s and Don’ts When it Comes to Dementia? — We Are Dementia Strong

This is a great list from We Are Dementia Strong. Basically it boils down to treating your loved one with dementia like the person you’ve known, not solely by their dementia. This disease tries to strip people of their humanity and its caregivers’ duty to try and maintain dignity whenever possible.

Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.

via Are There Do’s and Don’ts When it Comes to Dementia? — We Are Dementia Strong

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May 30, 2020 · 5:31 pm

How to know it’s time to consider Memory Care? — The Diary of An Alzheimer’s Caregiver

With extra time spent at home in the midst of a pandemic, you may be in touch with your elder relatives more than ever. This is a great time to review the health status of your older relatives. When people are thrown off their routine, symptoms of dementia may become more apparent. This post from The Diary of an Alzheimer’s Caregiver offers excellent tips on when to consider memory care.

Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! Brain disorders like Alzheimer’s, Dementia, etc. are progressive conditions. In these diseases, the patient’s health tends to deteriorate with time.…

via How to know it’s time to consider Memory Care? — The Diary of An Alzheimer’s Caregiver

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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

Review the 2020 Alzheimer’s Disease Facts and Figures

The Alzheimer’s Association released their annual report around the time the coronavirus pandemic was ramping up, but I did not want to overlook the latest findings. I thought it was especially appropriate to post this today, on what would have been my father’s 88th birthday.

Here are the main takeaways from the 2020 Alzheimer’s Disease Facts and Figures report:

  • Alzheimer’s is the sixth leading cause of death in the U.S. 1 in 3 seniors die with Alzheimer’s or another dementia. The death rate from Alzheimer’s has skyrocketed. Between 2000 and 2018, the number of deaths from Alzheimer’s disease has more than doubled, increasing 146%.
  • More than 5 million Americans live with Alzheimer’s disease. Women make up two-thirds of that number; African-Americans are about twice as likely to be diagnosed with Alzheimer’s or other dementias compared to whites in the same age group; Hispanics are about 1.5 times as likely to develop Alzheimer’s or other dementias compared to whites in the same age group.
  • Unless significant medical breakthroughs are made, by 2050, the number of Americans age 65 and older with Alzheimer’s dementia may grow to a projected 13.8 million.
  • 16 million unpaid dementia caregivers provide care valued at $244 billion annually. One in three caregivers are 65 and over, and two-thirds are women. One-quarter of dementia caregivers belong to the “sandwich generation,” caring for both an aging parent and minor children.
  • The cost of Alzheimer’s care to the nation is staggering. In 2020 alone, Alzheimer’s and other dementias will cost the nation $305 billion. What’s even more sobering is that half of primary care physicians believe the American healthcare system is not prepared for the growing number of those with Alzheimer’s and other dementias.

While these reports highlight the challenges we face in providing care for our loved ones with Alzheimer’s and other dementias, the Alzheimer’s Association proposes an action plan focused on education and recruitment to build up a corps of geriatric providers who understand the unique challenges that those with dementia and their caregivers face. The Alzheimer’s Association also encourages greater funding in the areas of rural healthcare and telemedicine.

2020 alz report

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

guest post photo

Pixabay

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 

BradMacy_Headshot

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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