family Archives - Pedal for Alzheimer's

Regan Craig and Carl White, Grandaddy during the Holidays

Why I Ride: Ambassador Regan Craig

While I’m not sure he ever owned one himself, my grandfather bought every bike I owned as a child. He grew up in the Great Depression and had neither finances nor the time for a bicycle, but that didn’t stop him from wanting to ride.

He was one of those guys who exemplify the Greatest Generation. He had to leave school at age 12 to take over the family farm, then served in Europe during the Second World War. He took advantage of the opportunities military service provided including earning his high school equivalency.

Grandaddy was able to build a successful construction business and start a family. Grandaddy either lived next door or across the cotton patch all the years we shared on this Earth. I often rode the bike he gave me down a field road to get from my home to his.

We lost Grandaddy to Alzheimer’s in 2001. I started cycling a few years later. When Kyle Dortch shared about Pedal for Alzheimer’s in late 2022, I knew I had to be involved.

I’ve lost many other family members to Alzheimer’s, but my grandfather, Carl White, is the reason I ride. He comes to mind on lots of solo rides, especially passing a field road on the edge of a cotton patch.

WRITTEN BY:

Regan Craig

Reagan Craig is a Pedal for Alzheimer’s Ambassador from Jackson Tennessee.

Self-Care for Spouses Caring for a Partner with Alzheimer’s Disease

A caregiver can be anyone who helps an individual with various tasks of daily living, transportation to and from health appointments, and assisting someone with financial decisions.

While the most common type of caregiver people think about are paid healthcare professionals, friends, family members, and spouses can also be caregivers.

Being a caregiver for your spouse with Alzheimer’s disease can feel like the most appropriate decision and the only one you can think of because who can take better care of your partner than you?

The problem is when you, acting as a caregiver, experience caregiver burnout. When a person experiences this caregiver burnout, they start to live in a state of physical and mental exhaustion. Caregiver burnout is critical to avoid because you may start to develop changes in your own health and perception of your relationship with your partner.

This article will help you develop better-coping strategies and provides tips for caring for a loved one with Alzheimer’s disease.

How to cope when your spouse has Alzheimer’s disease

When it comes to having a spouse or partner that has Alzheimer’s disease, it is normal to feel like if you stop to take time for yourself, you are being selfish. Remembering to take time for yourself is also critical because you can’t expect to properly assist anyone if you are not in a good mindset.

Often, when you are acting as a caregiver for someone else, your own health gets placed on the back burner. When you can’t stop for yourself, you may find that your health conditions worsen, and you are suddenly physically unable to care for your spouse.

Consider the following Alzheimer’s disease caregiver tips to help you prepare for being a caregiver as well as help to better care for yourself so that you can care for your spouse.

Increase your physical activity. Find an activity that you will find enjoyable, such as walking or yoga. Start in little increments and gradually increase the amount of time and how many days you perform this activity. Physical activity will help relieve stress and comes packed with health benefits when done consistently.
Take up other people’s offers to help. Accepting other people’s offer to help can be difficult because you might feel like you don’t want to burden them; however, they are probably asking because they want to help! If someone asks how they can help, assign them a task and relieve yourself of that burden.
Connect with others. Find a community, either online or in-person, of others in similar situations to yours. Hearing others express frustrations you have as well can be a big reliever in knowing you are not alone.
Implement techniques to encourage relaxation. Learning relaxation techniques is incredibly beneficial to help you deal with those times when frustration is high. Relaxation techniques use skills like visualization and meditation, for example.
Empower yourself by staying knowledgeable about the disease. Remain current on all the latest information in the progression and treatment of Alzheimer’s disease. Follow your favorite organization on social media or join their mailing list to ensure you get the latest news.
Remember to plan for the future. Planning includes not only your future but your spouse with Alzheimer’s future as well. It can be difficult to think about, though it’s essential to prepare for the chance of you not being around to care for your spouse. Think about who and how you would want care provided to your partner. Start and even keep planning for your financial future. Remember to budget for unexpected bills.
Try to remain flexible. The person with Alzheimer’s disease needs will change over time. Sometimes a task they could do a couple of days ago has changed, and they can’t perform that same task. Remember to be fluid and not let frustration turn a situation into a bad one.
Take a break. Prevent yourself from getting overwhelmed. Stop when you must, and remember it’s ok if your house isn’t perfectly clean. What’s important is that you stop to care for yourself as well.

Different stages of Alzheimer’s disease can affect you as a spouse differently. So knowing and understanding your role as a caregiver in these stages is helpful to anticipate the amount of help you will need to provide to your spouse and the kind of help you may need yourself.

Care during the early stages

In the early stages, most people can function independently, and your role should be that of support. Your spouse will need you to be there as a companion and to help them make decisions that involve their (and your) future.

During this time, you and your partner can start planning for the future financially. Consider the costs that may occur in treatment, from medications to therapies. You and your partner can discuss care measures that will happen later on as the disease progresses. Consider whether you and your partner can afford an in-home caretaker or if it is more financially reasonable to consider more of an assisted living type facility.

Care during the middle stages

You may notice more behavior changes beginning to occur during the middle stages of Alzheimer’s disease. The person with Alzheimer’s disease will start to have difficulties with activities of daily living like bathing and dressing during the middle stages.

Your spouse may need a more structured routine to help cope with these new changes. It’s also important to stay flexible during this time because you might need to change that routine as the disease progresses and your spouse’s needs increase.

During this time, you have to remember to take time for yourself. The caregiver role you are now in can be very demanding and a considerable change from before.

Caregiving during the late stages

When a person is in the late stages of Alzheimer’s disease, their need for care is often high. They might have problems with eating and need meals cut up for them or even a specialized diet.

The person going through the late stages of Alzheimer’s disease will often need extensive care. Your partner may need full-time care, meaning they might need to be in a facility with healthcare professionals responding to their needs around the clock.

Signs of caregiver stress

Being a caregiver can have its burdens, and knowing what caregiver stress might look like is helpful. When you are focusing on someone else’s needs, it’s common not to notice your own, and unfortunately, when you go long enough and do not realize you’ve reached your limits, your health can become affected.

When you start to notice any of the following, it may be a sign that you are experiencing caregiver stress:

Difficulty concentrating
Frequent moments of sadness
The increased need for alcohol
You start to get irritated easily and quickly
Feeling tired even after a decent night’s sleep
Gaining weight quickly or even losing weight rapidly
Anger towards your spouse with Alzheimer’s disease
You haven’t connected with friends and family recently

When you start to notice any signs that you are experiencing caregiver stress, then you should reach out for help. This is the time to talk with other family members and enlist them in some of the care for your partner.

Respite care is something to consider. Respite care is when the caregiver will take some time off from their responsibilities in being a caregiver. Services are often offered from care either in the home or adult day care and sometimes can be provided by short-term nursing home care when needed.

While caring for a spouse with Alzheimer’s disease can be stressful, it is important to know that you are not alone. Ask family and friends for help when you need it. Reach out to community programs and resources for help when you need it. Take care of yourself so that you can better care for your loved one.

Key Takeaways

Caregivers can develop caregiver burnout and experience physical and mental exhaustion.
It is important to ask for help when you start developing signs of caregiver stress so your health doesn’t suffer.
Accept help from others when they offer it, and remember to take time out for yourself.
During the early stages of Alzheimer’s disease, plan for the future with your spouse to make arrangements.
Keep in mind that during the late stages of Alzheimer’s disease, the care needed by your spouse will be high and often around the clock.

Resources

Alzheimer’s Association. (n.d.). Early stage caregiving. https://www.alz.org/help-support/caregiving/stages-behaviors/early-stage

Eldercare Locator. (n.d.). Community Resource Finder. Administration for Community Living. https://www.communityresourcefinder.org/

MedlinePlus. (n.d.). Caregiver health. U.S. National Library of Medicine. https://medlineplus.gov/caregiverhealth.html

Mayo Clinic Staff. (2021, January 6). Caregiver stress: Tips for taking care of yourself. Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

WRITTEN BY:

Courtney Battaglia BSN, RN

Courtney Battaglia is a registered nurse with a bachelor’s degree from the University of Texas at Arlington. She has over 12 years of experience working directly with patients, many of whom experienced the effects of Alzheimer’s and dementia. Courtney is dedicated to providing resources for families and patients who are experiencing this diagnosis and continues to advocate daily for this population.

By combining her nursing knowledge with her passion for writing, Courtney strives to arm the public with the most accurate information for their health-related questions. While maintaining an active presence in delivering exceptional patient care, Courtney continues to promote and foster education to the public by breaking down recent research and news trends into easy-to-understand information.

Connecting to Those Who Have Dementia. It’s Simple.

Caregivers of those with dementia experience a wide range of emotions during their caregiving journey, including a sense of loss that they can no longer connect to that person, like they could before. Or, for those who are new to caregiving for that individual, they just can’t feel successful in aligning with them. With many frustrating interactions, they find themselves saying things like “This isn’t who my mom is” or “I just can’t seem to do anything right for her” or “Why does this keep happening?”, leaving the caregiver feeling hopeless.

What would make that individual with dementia happy again, to feel safe and secure, and calm? Although this can seem impossible to imagine, it can be quite simple. For their own sanity and peace, the caregiver needs to lower their expectations of the person they are caring for. There is a level of acceptance needed that the person they are caring for does not have all the skill-abilities as a fully-functioning adult, yet the developmental level of a young adolescent, according to Dr. Barry Reisberg’s research and his theory of retrogenesis. Therefore, their chronological age does not match their developmental age. As the disease progresses, the person’s skill abilities go in the reverse order in which they learned them (i.e., their skills are reversing towards infancy), including mobility, communication and language, coping, independent activities of daily living (IADL’s) (like managing money, prescriptions, etc.), and then ADL’s (like dressing, grooming, etc.). This also includes how the person learns and navigates their world – adapting to a new world they now live in – as it mimics very similarly to the world a young child lives in between ages 7 years old to 4 weeks old, indicated by Dr. Reisberg. In this new world, the person with dementia is using their senses to understand what is happening around them, and these stimuli influence the person’s mood and memories all the time, very similarly to an adolescent’s experience before the first 5 years of life. This does not mean we treat those with dementia like children, but better yet we put ourselves in that person’s shoes to understand clearer what they are capable of. This leads to acceptance.

When a person with dementia is stimulated using their senses, that information is processed either directly or indirectly in the limbic system of their brain that houses the amygdala (feelings) and hippocampus (memories). Therefore, positive stimuli should be used to promote positive feelings and memories (i.e., sensory stimulation). And when the caregiver is the one providing these positive experiences, the person with dementia will either connect or re-connect with them because they like how they feel with that person. The key to this connection is to consistently (i.e., structured, daily) provide these positive experiences in order to reinforce the connection and skills to maintain their highest level of independence for as long as possible (also called habilitation).

This framework I described above is called the Dementia Connection Model©, utilizing Dr. Reisberg’s theory of retrogenesis (the WHO & WHY), the act of habilitation (reinforcing skills consistently, over and over) (the HOW & WHEN), and intervening using sensory stimulation (the WHAT). With over 10 years of research and hands-on work with individuals with dementia, caregivers and staff, I created this model to provide an avenue of acceptance and a better understanding of the progression, as well as to put tangible tools in caregivers’ hands, so that there is a strong, harmonious connection between the person with dementia and their care partner.

Multi-sensory based tools have been clinically proven to enhance the life of those living with dementia. Tools include preferred music (auditory stimulation), aromatherapy (olfactory stimulation), pet and infant-doll therapy (tactile stimulation amongst others), using colors to one’s advantage (visual stimulation), and many more.

When the caregiver is better educated and prepared, this sets them up to feel confident and competent. In turn, they provide better quality care and engagement. Then, the person with dementia benefits because they can freely be themselves as they are now, without judgements, controls, and expectations. Their world is and should be filled with ‘sunshine and roses’; it’s that simple.

For more information, stay informed about the newly opened Dementia Connection Institute by NeuroEssence, LLC. And read more about the Dementia Connection Model© in my newly released workbook-style guide called The Busy Caregiver’s Guide to Advanced Alzheimer Disease, published by Johns Hopkins Press, available at Amazon, Barnes and Noble and Johns Hopkins Press Bookstore.

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PURCHASE BOOK

WRITTEN BY:

Dr. Jennifer Stelter

Dr. Jennifer Stelter, also known as The Oil Doctor, Psy.D., is a Clinical Psychologist and Johns Hopkins Press author, who specializes in dementia care. She has 20 years experience in the healthcare field and over a dozen in the senior living industry. She is a Certified Dementia Practitioner and Certified Alzheimer’s Disease and Dementia Care Trainer through the National Council for Certified Dementia Practitioners.

Additionally, she is the CEO of NeuroEssence, LLC at the Dementia Connection Institute and the creator of the Dementia Connection Model(c). Also, she is the author of The Busy Caregiver’s Guide to Advanced Alzheimer Disease. At the Dementia Connection Institute, we provide training and education on dementia care to professionals and family caregivers with a heavy focus on ‘prescribing’ with non-pharmacological interventions and engagement and empowering care providers to do the same. The vision is that those living with dementia will be able to experience and navigate their new world freely because caregivers and professionals feel better educated, prepared, and empowered in how to provide quality dementia care. We are now open! Visit us at DementiaConnectionInstitute.org.

Jessica Ryan

Jessica Ryan is a university educated Biologist and Educator, a Certified Dementia Practitioner (CDP) through the National Council of Certified Dementia Practitioners (NCCDP), an AromaTouch® Technique Trainer certified by Dr. Hill, a top doTERRA Wellness Advocate, and a founder and co-creator of AromaTechniques an aromatherapy and hand massage technique specific to the “vintage” population. She is the CEO of The Oil Mama, LLC, and co-founder and co-owner of NeuroEssence, LLC. She has 25+ years of experience in education and the sciences from high school to university and professional level. Over the last 10 years she has committed to staying on the forefront of evidence- based essential oil uses and educating individuals and families on reducing toxic load and increasing cellular nourishment as the key to healthy mind and body at any age. She has pioneered a specialization in working with the “vintage” population, healthcare professionals, and caregivers to educate them on the usage of therapeutic essential oils for longevity and quality of life as it relates to the Alzheimer’s, Dementia, and brain health.

Jessica regularly leads workshops and offers valuable and continued support through her various resources and one-on-one consultations. She also offers additional services to healthcare and residential facilities as related to the “vintage” population including caregiver and continuing education, hospice tools, and customized community wellness plans.