Caring for someone you love with dementia is one of the most important and selfless jobs you will ever have. According to the Alzheimer’s Association, 16 million people provide unpaid care for a person with Alzheimer’s or other dementias. In the early stages, the responsibility may be as simple as driving your loved one to the doctor or reminding them to take medicine. As the disease progresses, so does the type of care you will need to provide.
Whether you are just starting to anticipate a need, have already started your journey as a caregiver, or are years into taking care of your loved one, mapping out a plan to help guide you will help alleviate a lot of stress. But where does one begin?
- Start with a conversation. 1 in 3 seniors dies with Alzheimer’s or other dementia. Those odds alone make it a reason to start having conversations with aging parents and spouses about their wishes for health care. By doing this, families can understand their wishes for care and details of finances, both important for all of us as we age, but especially if dementia develops. Learn their preferences today to provide the kind of care they hope for if needed in the future. If you suspect that you will be stepping into a caregiving role, make sure the conversation includes other family members and siblings, so you all understand how the future will unfold. It’s also essential to make sure you know if your loved one has long term care or supplemental insurance to their Medicare if they are 65 or older. (Medicare.gov is an excellent resource for you.)
- Develop a roadmap. At the Windward Foundation, we often refer to care plans as roadmaps of the caregiver journey. Those roadmaps should include all of the legal documents necessary to carry out parts of your plan in the future, especially if you are going to be caring for a parent and aren’t your loved one’s spouse. Your roadmap will help provide you peace of mind, so you aren’t scrambling when an emergency arises. Most importantly, when you develop roadmaps early in the caregiving journey, you can honor the wishes of your loved one. It will enable you to share the load of help you anticipate needs in the future as the caregiver.
- Gather your tribe. No one should have to care for a loved one with Alzheimer’s alone. Think about who can help you and, quite honestly, who is likely to provide the support you may need. Your tribe should include physicians, family members, friends, neighbors, colleagues, and the community. If you are an adult child who will be caring for your loved one, make sure you include the local police and emergency responders. Many with Alzheimer’s (like my Dad) like to wander, and it’s a good idea that the local law enforcement knows that someone in their community is living with dementia.
- Find support. The caregiver journey for someone with Alzheimer’s will mean that a variety of different issues will arise. While it seems like you are alone, there are many resources available to you. Community Areas for the Aging, Home Care, Home Health, Memory Cafe’s, Support Groups, Adult Day Care, and Respite Programs are just some options. Windward Foundation works with families across the country to help make sure you understand what resources are available for you in your area. We also provide virtual education and respite programs that you can participate in from the comfort of your home.
- Put your oxygen mask on. As a caregiver, it’s so important to take care of yourself. It may sound a bit cliche, but flight attendants tell you to “put your oxygen mask on first,” before helping others because if you run out of oxygen yourself, you can’t help anyone else with their oxygen mask. Self-care is essential for both your emotional and physical health. Creating a self-care plan, much like your caregiver roadmap, will help you plan for your needs as you care for your loved one. Balancing caregiving with your own needs isn’t always easy, but it will be so important!
More than 5 million Americans are living with Alzheimer’s disease, so if you are one of 16 million providing care at home, you are not alone! As you and your family prepare for what’s ahead, studies show that most caregivers experience positive emotions, such as togetherness, happiness, and accomplishment. Don’t get me wrong, it’s a hard job, but with a little planning and understanding resources available to you, caregiving can be incredibly rewarding.
Michele Darwin is co-founder and Executive Director of the Alzheimer’s Caregiver Alliance, a community of the Windward Foundation, a 501(c)3 with a mission to help ease the burden for unpaid caregivers of a loved one with Alzheimer’s disease. Join the Alzheimer’s Caregiver Alliance growing online community.