A diagnosis of dementia is life-changing, both for the individual diagnosed and their caregiver. For many caregivers, this may be the first experience they’ve had with caregiving or even seeing what dementia is like up close and personal. It can be a daunting task, and it’s natural to feel overwhelmed and unsure of where to start.
“It’s okay to not know everything about caregiving when you start out,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “The dementia journey is different for every person, so there’s no one rule book that will lay out the ‘right way’ to be a caregiver.” The most important thing, she says, is to approach your role with an open mind, a positive yet realistic attitude and a thirst for knowledge.
“Dementia is a progressive disease, and one day can be completely different from the next in terms of your challenges and your loved one’s needs,” Andrea says. “Having the right attitude is essential to your success because it allows you to face and deal with the new normal and give you the tools you need to provide the best care for your loved one and yourself – now, and in the future.”
The 5 Rules for New Dementia Caregivers
While no one can know exactly what the future holds for you and your loved one, Andrea says there are five core rules that new dementia caregivers should take to heart. “Having these rules internalized and understood will give you an element of control as a caregiver, plus keep you from being completely surprised of overwhelmed when challenges occur.”
Rule #1: Learn as much as you can about the disease.
For example, did you know that the term “dementia” is a blanket term for a variety of cognitive disorders including (but not limited to) Alzheimer’s disease, Pick’s disease, frontotemporal dementia and vascular dementia? And did you know that each form of dementia can manifest and progress differently? If this is your first time experiencing the effects of dementia, researching the type of dementia your loved one has will give you a great foundation for understanding what’s happening now, what will happen in the future and how best to provide a safe, loving and secure care environment for your loved one.
Learning as much as you can about the disease as early as possible will help you better be prepared for the changes that are to come, says Andrea. While memory loss is a hallmark symptom of dementia, there are many other symptoms that will occur, such as the loss of physical abilities, mood swings, behavioral changes and others. Understanding that these symptoms – which can seem to occur suddenly – are an effect of the disease and not a part of your loved one’s personality will help you better work through them. Finally, having knowledge about the disease will enable you to be the best advocate for your loved one with medical professionals, family members and other caregivers.
Rule #2: Plan for the future.
There are lots of unknowns when it comes to dementia. The one sure thing, however, is that your loved one’s abilities will dwindle until they go away entirely. This is a sobering fact to reckon with and can be very hard for friends and family members to accept. However, knowing that the status quo will eventually change means that you and your loved one can be proactive about planning for the future. This involves financial and legal planning (getting affairs in order, issuing powers of attorney, setting up living wills, etc.) as well as determining care options (Will your loved one be cared for at home? Do you need to hire an in-home caregiver? What will happen when the needed care becomes too great for you to handle as a caregiver)? The earlier you can begin planning for the future, the more able your loved one will be able to provide input, share information and get their preferences and desires set down on paper.
Rule #3: Accept help.
Trying to take on every aspect of caregiving may seem valiant and selfless, but we’ll be frank – you’re setting yourself up for failure. The truth of the matter is that no one person can handle everything all the time by themselves. (Remember, even professional caregivers are allowed to take a break and go home after their shift ends.) Never be afraid to ask for help, and take advantage when friends and family reach out to ask what they can do. Sit down and figure out what tasks you can delegate, and what type of support would be most helpful to you when. For example, perhaps you’re not the greatest when it comes to managing financial matters, but your sister is a whiz at it. Or you have a retired neighbor who’s been a longtime friend of your loved one who’s willing to sit with them once or twice a week while you run errands. Look for opportunities in your community as well – your local Area Agency on Aging will have contacts with caregivers, nonprofit organizations and other resources that can help ease the burden of caregiving.
Rule #4: Be realistic.
Being realistic has two parts to it. First, you need to be realistic about what you can do and the assistance you can provide as a caregiver. There will be times when you slip up, become frustrated or otherwise act like the human being you are. Keeping in mind that you can only do what you can do, accepting your imperfection and making the most of each day will help you be kind to yourself – and the best caregiver possible.
The second part of being realistic is understanding how the disease progresses and what is going to happen in the future. Your loved one will never be able to regain the abilities they lose, and eventually he or she will need more assistance than you can provide on your own. Knowing what’s ahead doesn’t mean that you’re ‘giving up’ or a bad person – it actually means you’re providing the most thoughtful, compassionate assistance possible.
Rule #5: Care for yourself as well as your loved one.
The majority of caregivers report experiencing extreme stress and anxiety due to their role. Left unchecked, this stress can lead to caregiver burnout, which is a serious condition that can cause real, severe health issues. In order to be a good caregiver, you have to first make sure you’re caring for your needs. It’s the old airplane analogy: you need to make sure your oxygen mask is in place before assisting others. Eat a healthy diet, get plenty of exercise and find ways to do nice things for yourself on a regular basis. Remember, you are a whole person outside of your role as a caregiver, and it’s important for you to nurture all aspects of your life. Staying socially connected and finding joy where you can will allow you to refocus, refresh and be ready to handle caregiving with a positive, caring attitude.
For more information about being a dementia caregiver, or to learn more about our community, mission and values, please contact us at 925-272-0261.
Premier Senior Living, Dedicated Care
The Reutlinger Community’s mission is to provide high quality health care and social support services in a life-enhancing and stimulating environment with a commitment to Jewish values.
Offering Assisted Living, Enhanced Assisted Living, Memory Care, Skilled Nursing and Rehabilitation, The Reutlinger Community provides a continuum of care that allows seniors to live a life-enhancing and stimulating environment. Located in Danville, California, The Reutlinger Community’s newly renovated, 110,000 square foot community combines the comfort and familiarity of home with seasoned senior care and skilled nursing specialists to suit any senior’s needs, allowing them to live the life they choose with freedom and security.
Because we specialize in a continuum of care, our residents never need to worry about leaving the community they call home or wonder what will happen when they need some more care. Residents and families alike can have peace of mind knowing that there are full-time licensed nurses available, along with activity coordinators, social workers, caregivers, a concierge and Rabbi who focus solely on helping each resident thrive. Even better, our services and amenities are equal to those of a state-of-the-art resort. This is the lifestyle and care that your loved one deserves.
At The Reutlinger Community, seniors have numerous opportunities to engage in award-winning programs that are designed to engage the mind, renew the spirit and provide opportunities to meet new people and learn something new. Whether residents are enjoying our art program and museum, listening to a lecture or educational program or attending spiritual programming and our wide range of activities, there’s something for each resident to love. Participate as much or as little as you like, the choice is all yours.
For more information or to schedule a personal tour, contact us today.