‘She’s not the one with the disease, but she’s having to live with it. So, as I might be asking for special consideration from her from time to time, I need to go ahead and give that to her. We get anxious, we get frustrated and we get the tenancy to take it out on those closest to us at the time. So, I try real hard not to do that anymore — real hard. Because I want the time we have left together to be the best that it can be.’
A diagnosis of early-stage Alzheimer’s disease doesn’t just affect those with the disease — it affects everyone who loves and cares about the person affected. In the early stage of Alzheimer’s, most people are still able to function independently. He or she might still drive, take part in social activities, volunteer and even work.
As a care partner (a term many choose to use rather than “caregiver,” since a person in the early stage of dementia might not need much assistance), you might find yourself in a new and unfamiliar role. Your role as care partner is an important one: to provide support and companionship and help plan for the future.
With an early diagnosis, you and the person with dementia now have the opportunity to make decisions about the future together, including legal, financial and long-term care planning. The person living with dementia can take advantage of available treatments, participation in clinical trials and you both can benefit from local resources and support services.
One of the greatest challenges care partners face is not knowing how much assistance to give or when to give it because the person with early-stage dementia is primarily independent with dressing, bathing, walking and might still drive, volunteer or work. The most difficult tasks might involve managing a daily schedule or household budget.
As a care partner, your support with these everyday tasks can help the person with dementia develop new coping strategies that will help to maximize his or her independence. Every relationship is different, but finding balance between interdependence and independence might increase confidence for both of you.
Remember, you are still the same person you were before the diagnosis, but now, everything has changed.
As the care partner, you might be feeling overwhelmed by emotions that range from fear to hope. Emotions might be triggered by thoughts about how this diagnosis will impact your life and the anticipation of future challenges. These questions and feelings are normal.
Learning to recognize your emotions can help you move forward and help the person with dementia live the best life possible. You might be unsure of where to go for information, anxious about what to expect as the disease progresses and concerned about your ability to support the person living with dementia.
Let’s be honest — if you get sick, you’ll be of no help to your loved one. Caregiving can tax your patience and foster fatigue, frustration and guilt, becoming a grueling grind that takes a heavy toll on the caregiver’s body and mind. The effects on physical and mental health are well documented:
- Thirty-six percent of family caregivers characterize their situation as highly stressful, according to a 2020 report from AARP and the National Alliance for Caregiving.
- A 2018 study from insurance firm Genworth found that four in 10 caregivers experienced depression, mood swings and resentment as a result of their labors.
- Research cited by the American Psychological Assn. found that among people age 55-75, those who are caregivers show a 23 percent higher level of stress hormones, which can lead to high blood pressure, and a 15 percent lower level of immune response, making them more vulnerable to the flu and other infections (like Covid-19).
- Over time, that physical and psychological wear and tear can lead to caregiver burnout — a condition of feeling exhausted, listless and unable to cope. It can cause caregivers to make mistakes that could endanger a loved one, such as mismanaging medication, or lead to unhealthy behaviors such as smoking or alcohol abuse.
That’s why it’s so important to watch for signs of caregiver burnout and take proactive steps to deal with it before it spirals out of control. The following are tips to reduce caregiver stress (see www.aarp.org/caregiving, www.aarp.org/caregiving/life-balance/info-2019/caregiver-stress-burnout for a complete list):
Give yourself a break. Ask a friend or relative to fill in for you for a few hours occasionally so you can take a walk, watch a movie or go out to dinner.
Simplify your communication. Keeping extended family and friends up to date about your loved one’s situation through phone calls or individual emails can be tiring, and you might not want to broadcast that information on social media.
Join a support group. If you feel like you’re alone in your struggle, talking with other family caregivers can lift your spirits and help you think through solutions to various problems.
Nurture positive relationships. You may be overwhelmed, but take the time to talk with your closest friends and family members.
Spend an evening with someone who is a good listener. Limit your interactions with negative people who will drag down your mood and perspective.
Take care of your own health. Set a goal to establish a good sleep routine and exercise a certain number of hours every week.
Be sure to eat healthy foods and drink plenty of water. See your doctor for recommended immunizations and screenings.
Tell your physician that you’re a caregiver and bring up any concerns you might have. A daily relaxation and meditation practice can be beneficial as well.
Judd Matsunaga is the founding attorney of Elder Law Services of California, a law firm that specializes in Medi-Cal Planning, Estate Planning and Probate. He can be contacted at (310) 348-2995 or firstname.lastname@example.org. The opinions expressed in this article are the author’s own and do not necessarily reflect the view of the Pacific Citizen or constitute legal or tax advice and should not be treated as such.