“Where can I learn more” and “where do I turn for help” are pleas heard from many family caregivers of loved ones with Alzheimer’s Disease. We’ve got answers to those pleas.
Family caregivers are once again the focus in this, the 4th and last (for this year) of weekly topics to mark Alzheimer’s Awareness Month on Senior Care Corner.
We hope we’ve helped you increase your knowledge of the disease, find ways to aid others who are battling the disease, especially family caregivers, and find ways to become an advocate for a cure!
This week we are discussing resources for family caregivers.
If you are a family caregiver, please know you are not alone. In 2012 there was an estimated 15.4 million caregivers providing more than 17.5 billion hours of unpaid care for someone affected by Alzheimer’s Disease in the United States alone.
We know that there are many joys and rewards that come with being a family caregiver and devoting yourself to your loved one. But with that, there are also frustrations, worries and exhaustion. There is help for you from a variety of sources and we encourage you to reach out for to assistance in meeting your needs to enable you be the best caregiver you can be for your loved ones.
What You Can Do Today!
- Learn all you can about Alzheimer’s Disease so that you are prepared for what is happening now and what will happen in the future. Understand the various stages and what that means for you as a caregiver.
- Get day to day help – don’t try to do it all yourself! Ask for help from your network: family, friends, community agencies, healthcare professionals, and church members.
- Get support! We will list the many ways you can get support below but remember sharing your questions, concerns and expertise with others will help you AND others so don’t think you are in this alone. Managing your stress will help you cope with whatever comes a bit better and hopefully prevent caregiver burnout.
- Make plans for the future – how will you continue to care for your loved one as the disease progresses? What if they require more help than you can provide? Have you completed advance directives, DNR forms, living will and a financial will yet? Plan to visit an elder care attorney to get the help you need to be sure all legal bases are covered for the requirements in your state.
Organizations That Can Help
- Alzheimer’s Association – a wealth of knowledge and resources at your fingertips. Most states have their own organization in addition to the national association. They can provide other resources in many cases such as respite care when you need a break.
- Alzheimer’s and Dementia Caregiver Center – contact them for more information and practical advice on caregiving. 24/7 Helpline 1.800.272.3900.
- Caregiver Action Network helps family caregivers with a variety of topics such as Medicare.
- Alzheimer’s Foundation of America provides care and services to individuals confronting dementia, and to their caregivers and families.
Family Caregiver Support
- Check out support groups that meet in your local area. People who care for those with Alzheimer’s and other dementia forms meet to share experiences, give emotional support, share advice and learn from guest speakers about a variety of topics of interest to family caregivers. The meetings often provide respite care for you to attend and participate without worrying about your loved one.
- Online support groups and message boards are a great way to share and learn from others over the computer when you have time. You connect at your convenience and gain support from others in the same position. There are a variety of websites that have message boards and support communities that you might find useful. One example is ALZConnected.
- Twitter and Facebook chats. If you are currently using social media, you know how easy it is to ‘meet’ people from all over the world and share information. There are also a variety of chats going on that are specific to those caring for people with Alzheimer’s Disease. You can check it out on twitter by following #alzchat or #carechat to name a few.
- Build your network. There are people all around you that are willing to help if asked, you just need to ask. Check out our post 10 Steps for Caregivers to Build a Strong and Effective Network.
- Seek spiritual guidance if you have a church affiliation. Your pastor or priest can offer you comfort in your time of need as well as the services of a spiritual outreach program.
- Online dementia caregiver training sessions are offered for caregivers to learn more and cope with day to day issues such as wandering, behaviors and eating.
- Area aging organizations, geriatric care managers, elder law attorneys, adult day programs, respite care, home care agencies, and healthcare organizations are good resources to seek out in your area to meet needs as they appear.
- The 36-Hour Day, fifth edition: The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss by Nancy Mace and Dr. Peter Rabins
- Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy
- Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste
- Creating Moments of Joy: A Journal for Caregivers, Fourth Edition By Jolene Brackey
- Chicken Soup for the Caregiver’s Soul: Stories to Inspire Caregivers in the Home, Community and the World (Chicken Soup for the Soul)By Jack Canfield, Mark Victor Hansen, LeAnn Thieman L.P.N
We want to say thank you to all the family caregivers who are doing so much to help our nation’s seniors. You are doing invaluable work and we know it is a job you would not feel is a burden but a joy!
Remember, there are ways to make your journey a smoother one and we hope that these suggestions will help you and your loved ones.