“It helps to remind myself that this is not the same person I knew. I have to simply accept my husband as the person he is on any given day. This isn’t easy. But I’m a nurse. Nurses are so used to caring for everyone else that we are often the last to take care of ourselves.” —Retired nurse from Newport News
Caring for someone with dementia is distinctively time-consuming and demanding. Dementia is a general term for a decline in mental ability severe enough to interfere with the basic tasks of daily life. Alzheimer’s disease accounts for 60 to 80 percent of dementia cases. While symptoms of dementia vary greatly, core cognitive functions become significantly compromised over time.
As these crucial functions deteriorate, the responsibilities of the caretaker increase exponentially, and the nature of the relationship with the affected family member undergoes drastic change. During this transition, the person they knew and loved will undergo personality and behavioral changes that can be extremely hard to bear. The division of labor that once made running a household manageable evaporates as care partners suddenly find themselves responsible for every aspect of family life: scheduling, finances, home repairs medical appointments and keeping the person who is living with Alzheimer’s entertained. Inventing workarounds becomes a way of life.
Because of how Alzheimer’s disease progresses, the caretaking process is more marathon than sprint, and the cumulative emotional and physical stress takes a serious toll on health of the primary caregiver. It’s easy for caregivers to feel isolated. So who cares for the caregiver? What survival strategies can they deploy to alleviate the stress, and how can friends and family of someone who has received a diagnosis be of greatest help?
Here are tips for caregivers and their friends and family, contributed by current caregivers from around Coastal Virginia.
Tips for Caregivers
- It’s important to feel that you’re growing as a person and staying stimulated, that you’re not putting your entire life on hold. Take a free, self-paced online class or seminar. Many museums and universities have free lectures and virtual tours. Try learning a foreign language. Use media when you’re in the car or on walks.
- Allow others to help. It’s not easy, especially when you know that the need for help will accelerate as time goes on. When friends or family ask how they can help, be specific about what you need.
- Take advantage of the many local resources offered by or supported by the Alzheimer’s Association: Peer-facilitated support groups, the ART Matters art engagement programs, a Caregiver Center and a 24/7 helpline are just a few examples. Visit ALZ.org/SeVa.
- Carve out personal time for yourself and don’t feel guilty about it.
- Realize you’ll sometimes feel angry about your situation and stressed when patience runs out. It’s a natural reaction that can make you feel guilty. Participating in a local support group gives you the opportunity to share your feelings with others.
- It is important to try and live in the moment. Utilize the time when your family member is still sleeping to meditate, pray and center yourself before your day begins.
- Stay physically active. Take long walks in the outdoors; it’s very therapeutic.
How Friends and Family Can Help
- Friends and family need to be consistent with their help as the arc of the disease is a long one and people will need ongoing support, not just in the aftermath of a diagnosis.
- When you discover a friend or loved one has been diagnosed, refrain from inundating the caregiver or family with well-meaning but unsolicited medical or health advice. People have the impulse to rush in with info on the latest ‘cure’: herbal therapy, special diet, hemp oil treatment, books that claim to ‘have the answer,’ etc. It takes up valuable time, and it can be overwhelming.
- Know that the caregiver has already been busy working with the medical community and is in tune with what help is available.
- Offer to provide a meal or entrée several times a month.
- Give the caretaker a night out on the town.
- Sit with the family member for a few hours so the care partner can run errands and have some time to themselves.
- Spend time with the individual living with Alzheimer’s. If they are in the early stages of the disease, take them out to a concert or ballgame, go out for a meal or beverage. Encourage them to share stories about their past, about growing up. Allow them to voice their feelings about what’s happening to them. Be an ear.