Keeping in mind the number one recommendation for caregivers-taking care of yourself-the following additional suggestions and resources are included:
• The only person you can change is yourself. However, sometimes by changing how you respond to someone’s behavior, they will start treating you, as well as the situation, differently.
• Accept help. Don’t try to go it alone. Even if you think there is no one around that can be of assistance, there are many avenues to pursue, such as community action agencies, churches, area agencies on aging etc. You’ll find little sympathy if people offer to help and you turn them down, and then complain about all you are doing.
• When someone asks what they can do, give them specific tasks. You can register for a free website “Lotsa Helping Hands” that can assist you in arranging for volunteer help. If you don’t feel you have the time or skills to maintain the site, ask someone to do it for you. It makes things a lot easier when people ask what they can do if you say “please register at Lots of Helping Hands.” That way, as you think of things that are needed, include them and people can help as they are able too.
• If there is other family, but they aren’t stepping to the plate consider the following options:
- calling a family meeting and seeing if there is a way to divide the labor; use a third party (such as social worker, case manager) to help navigate the meeting if you think there is a potential for conflict
- if they can’t donate time, which is often true since people live in so many different parts of the country, can they provide financial support for respite care, adult day care, meals or some other task that would reduce your workload. A family member, such as a student, may be the perfect person to run a Lotsa Helping Hands site.
Don’t be surprised if family doesn’t volunteer, yet complains about what you are doing. I hear this a lot from caregivers. Don’t obsess about it.
• Get training. Depending on the diagnosis and treatment, many hospitals, clinics, visiting nurses groups and condition specific organizations offer training to deal with the various behaviors and issues that arise because of the disease or its treatment. Ask the providers involved in treating the patient where such training is available in your area.
• If they are cognitively able, talk to the person about their negative behaviors. While you can assure them of your love, you can also be clear that you don’t appreciate when they do x,y or z.
• Listen to what have they have to say. A woman with a spinal cord injury that I was working with became very negative in her approach to friends and family. It turned out this was rooted in the way she felt others perceived her, “a crip in a chair.” In this situation, we talked a lot about how to change their attitude by changing her approach.
• Talk to the person’s medical provider. Could some of their behavior be a result of medications or the disease itself?
• Connect with the condition specific organization (e.g. American Cancer Society). Your issues are most likely not unique. These organization also offer support groups.
• Use the Healing the Whole Person Handout
• Use the “Getting What You Need Checklist.”
RESOURCES
• National Institute on Aging Caregiver Guide (Alzheimer’s)
• National Family Caregivers Association
• Well Spouse Association The Well SpouseTM Association, a nonprofit 501(c)(3) membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. We offer peer-to-peer support and educate health care professionals and the general public about the special challenges and unique issues "well" spouses face every day.
• National Alliance for Caregiving Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.
• American Association of Retired Persons (AARP) Resource Page Caring for Parents
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