Hello, gentle reader! I'm sorry for the silence but I have been checking out websites that were referred to me. I will start with the websites that I found helpful so you can build your own Internet toolbox without having to spend your time wading through websites that are not applicable for C.T.E.
The most helpful website I have found is the Alzheimer's Association at www.alz.org. There are many resources for dealing with dementia from educational materials, to planning helps, to on-line forums, to connections with the local Alzheimer's Association chapter which can give you information on local resources and support groups. All of this is available free of charge.
The Caregivers Action Network (formerly known as the National Family Caregiver Alliance) and be found at www.thefamilycaregiver.org. This website offers education, peer support and resources to family caregivers across the county. For all caregivers, those with children, those caring for senior, really anyone that is a caregiver for someone with a chronic or terminal illness. There are many resources and a forum. All of this is available free of charge.
The Well Spouse Association is for spousal caregivers and is a lifeline and a safe place for spousal caregivers of person with chronic illness and/or disability. There is a newsletter, magazine, forums, blogs and events. The annual cost for access to this website is $30.00 per year.
Lotsa Helping Hands www.lotsahelpinghands.com is a website you can use to coordinate meals and help for friends in need. I have signed onto it for assistance with meals. So far, I haven't had any hits, it seems to be dependent on people that are members of site. The jury is still out on how helpful this website will be.
The ARCH National Respite Resource Center (www.archrespite.org) and the Family Caregiver Alliance (www.caregiver.org) are resource centers for finding in-home care and respite care when caregivers need a break.
The Eldercare Locator (www.eldercare.gov) website is run by the Administration on Aging which is under the Health and Human Services Administration (HHS). This website is mostly for seniors 60 and over and addresses basic needs and offers a benefits check. The website is a federal website clearinghouse and may be helpful if the one you care for is over 60. If they have a low income, check out the Supplemental Nutrition Assistance Program (SNAP) to see if they are eligible for food assistance ("food stamps"). The website address is www.snapforseniors.com.
The Foundation for Health in Aging (www.healthinaging.org) is for people age 60 and over. It was created by the American Geriatrics Society and is a clearing house for geriatrics, caregiving, medication information, advanced directives information and care options such as nursing homes, assisted living facilities, etc.
Need prescription help? Try Needy Meds at www.needymeds.org. They offer a discount card for prescriptions not covered by your insurance plan, over the counter (OTC) medicines and medical supplies with a prescription, vitamins and supplements with a prescription and it even covers pet medications,
You can also reach out to your local United Way, Council on Aging, religious charities such as Catholic Charities or Lutheran Social Services as well as your local poor relief through your local townships (if you are at 135% of poverty and below).
Websites that were not helpful at all but were recommended to me are:
Healthwell Foundation (www.healthwellfoundation.org) Financial assistance to pay prescriptions, deductables and health insurance premiums for those with certain diseases. C.T.E. and Alzheimer's are not on their list to cover.
National Organizations for Rare Disorders (NORD) is a professional level organization and not for the average individual. Also, C.T.E. is not a rare disorder.
I know this is a long post but I hope that I have given you some tools for your toolbox labeled "Caring for my loved one with C.T.E.).
May you have many good days with your loved one.
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