The brochure does a pretty thorough walk through the steps that you need to take to prepare you and your loved one for a natural disaster. The major parts include:

• The Calm Before the Storm
• When to Start Planning? Long Before Disaster Strikes!
• Start with Conversations
• Then, Take Action
• A Disaster Is Imminent – What Should You Do?
• Can You Stay – or Should You Go?
• Getting Out of Harm’s Way
• Your Time Away
• The Return Home
• Planning Makes a Difference
• Checklists
• Resource

The checklist section alone is worth the trip. Check it out.

Courtesy a4gpa via Flickr

We’re always looking for the best resources on the Web that can help the busy, perhaps harried, caregiver do what they need to do with confidence and compassion, while maintaining a balance in life. Sometimes it’s not easy. One thing working in our favor is that we do have the Internet and its abundance of resources. We also have the networks of caring people with which to share information and ideas. But sorting through the huge volume of information can be challenging and time consuming.

While surely not a definitive list, we thought we’d provide our picks of some of the best caregiver resources among the embarrassment of riches. Our picks were chosen to get someone a little more thoroughly grounded in role of caregiver. If we’ve missed a great resource, let us know in the comment section below.

Family Caregiver Alliance

While there’s much to be had on the Family Caregiver Alliance site, we honed in on the “Caregiving Issues and Strategies” section of the site. This page provides links to printable pages on a good number of topics, including:

• Caregiver’s Guide to Understanding Dementia Behaviors – Includes Ten Tips for Communicating with a Person with Dementia
• Caregivers’ Guide to Medications and Aging – “Any symptom in an elderly patient should be considered a drug side effect until proved otherwise.”
• Caring for Adults with Cognitive and Memory Impairments – A very thorough over of the topic, from tips on getting started to more resources.
• Caregiving and Ambiguous Loss – Addressing the stress caused by unpredictable memory loss that, “comes and goes—one moment here, the next moment gone”.
• Dementia, Caregiving and Controlling Frustration – A great guide to dealing with the personal challenges that we have to deal with.

There’s plenty more from Family Caregiver Alliance

Alzheimer’s Association CareFinder

This area of the Alzheimer’s Association website focuses on help for a person with Alzheimer’s, or their caregiver. This part of the site is well organized and serves as a good, high-level guide to addressing needs of someone with Alzheimer’s. The major sections of this site include:

• Planning Ahead
• Care Options
• Coordinating Care
• Support and Resources

The site also include an interactive tool called, “Your Personal CareFinder” that asks a number of questions about the patient so it can then recommended care options and questions to ask when screening a caregiver or facility.

Particularly helpful are the “Topic Sheets & Forms“. Included are a number of pages and PDF files categorized as, Forms, Daily Living, Financial, Legal and Insurance Issues and Home and Residential Care. Some, of particular note, are Individual Needs Assessment, Wandering: Preparing for and Preventing, Caregiver Stress and a couple of real thorough documents on taxes and Alzheimer’s.

AARP, Navigating the World of Caregiving

As you might expect, AARP has a good area on their site that helps caregivers find the kinds of information that they’ll need while helping a senior. The major, and best, parts of this site include:

• Planning Ahead
• Providing Care at Home
• Preparing Your Home
• Housing Options
• Legal and Insurance
• End of Life

There’s a lot of good detail here. While none of them are really deep, they’re helpful in that they give a good overview of each topic area.

The site has a couple of “interactive features” that are rather unimpressive. One is a quiz to see how stressed you are. You rate yourself on a number of factors and then it scores you on how stressed you are. I like that it has a button below your score that says, “Try Again”. Will me stress go down if I keep doing the quiz? There’s also a video section on the site with a lot of short videos on a variety of topics related to caregiving. Dr. Bill Thomas stars in many of them. The AARP also has a Caregiving area that has more timely articles.

Some Quick Hits

We also have a couple of quick hits for caregivers:
10 Tips for Family Caregivers (PDF) – Good tips from the National Family Caregivers Association
Stages of Caregiving – Also from National Family Caregivers Association on their Family Caregiving 101

Did we miss your favorites, or an obvious one?

Courtesy daviddesign via Flickr

A  January 31, 2008 online article entitled, Caring for Mom and Dad from Afar on CNNHealth.com, reports that “Between 5 million and 7 million Americans care for an older relative from afar – - at least one hour away, according to Family Caregiver Alliance. ‘The need is so great, and the out-of-town kids feel so helpless,’ says Dr. Eric De Jonge, director of geriatrics at Washington Hospital Center.’”

The article provides the following tips for making the situation a bit easier.

1. Appoint one sibling and one doctor to be in charge of the care.
2. Fly into town for an in-person visit with the appointed doctor.
3. Find a doctor who is willing/able to keep in touch with you via email.  It is quick and avoids the endless string of voice mail messages.
4. Build a strong network of friends and neighbors to provide additional support.

Please visit the article online for detailed explanations to each of the tips outlined above.

gruntzooki via Flickr

If you, or a loved one, is a resident of, or is considering, assisted living, or a nursing home, a long-term care (LTC) ombudsman may be able to help. LTC ombudsman help resolve residents’ complaints, provide information and assistance, advocate for residents’ rights and quality of care, and advocates for system and legislative changes. The LTC ombudsman has the power, based on federal and state law, to protect residents’ rights.

Resolving Residents’ Complaints

The long-term care ombudsman can help residents of LTC facilities who have concerns and complaints about their care or services they receive. LTC ombudsmen have a standardized classification scheme for the types of cases that they handle. The seventeen major categories are listed below and are instructive of the kinds of issues that residents may face in LTC settings:

• Abuse, Gross Neglect, Exploitation
• Access to Information by Resident or Resident’s Representative
• Admission, Transfer, Discharge, Eviction
• Autonomy, Choice, Preference, Exercise of Rights, Privacy
• Financial, Property (Except for Financial Exploitation)
• Care
• Rehabilitation or Maintenance of Function
• Restraints – Chemical and Physical
• Activities and Social Services
• Dietary
• Environment/Safety
• Policies, Procedures, Attitudes, Resources
• Staffing
• Certification/Licensing Agency
• State Medicaid Agency
• System/Others
• Complaints About Services in Settings Other Than Long-Term Care Facilities or By Outside Provider

According to the Administration on Aging, for the most recent year available (2007), “Care” has the greatest number of complaints; about 27%. Care is a broad category that includes accidental or injury of unknown origin, falls, improper handling, failure to respond to requests for assistance, failure to follow plan or physician orders, improper administration of medicines, personal hygiene, and toileting/incontinent care among others.

Environment (air/temp, cleanliness, building, etc.) comes in second with about 11%, closely followed by Autonomy (et al.) at 10% and dietary at about 8%. Detailed statistics, both national and by state, are available from the Administration on Aging LTC Ombudsman National and State Data page.

Information and Assistance

Ombudsmen do more than handle complaints. If you have questions on alternatives to nursing home care, or about your rights in a LTC facility, or on alternatives in long-term care, an ombudsman may be able to help you. Some provide witnessing services for advance health care directives. An ombudsman may be able to attend a resident care plan meeting, or a resident or family council meeting.

Advocates for system and legislative changes

State and regional ombudsman programs work with other advocacy organizations to recommend legislation and regulatory changes that affect LTC residents. They routinely serve on boards and committees of other organizations and actively advocate for policies to promote quality of care.

The National Long Term Care Ombudsman Resource Center is a great place to get a start in understanding what an ombudsman can do for you. Probably the most important page is the ‘Ombudsman Locator‘  where you can find state and local help.

Related Links

• Detailed description of ombudsman complaint codes (MS Word)
• Senior Help Forum – State and Local Resources Page

The site provides the following warning signs:

• Feelings of anger
• Difficulty concentrating
• Unproductive worrying
• Feelings of sadness
• Frequent mood swings

The online article also provides several physical warning signs to look for:

• Stooped posture
• Sweaty palms
• Tension headaches
• Neck pain
• Chronic back pain
• Chronic fatigue
• Weight gain or loss
• Problems with sleeping

Access the article online for a list of suggestions for reducing such stress.

A December 30, 2008 post by Laura McGowan provides a list of resources for caregivers and 10 tips for family caregivers from The National Family of Caregivers Association.

Flickr image by Krikit

According to the American Association of Retired Persons (AARP), there are currently an estimated 21% of the U.S. population providing unpaid “care to friends and family 18 and older. This translated into 44.4 million caregivers in the U.S. today.”  

According to Caring.com, “every caregiver needs respite time if he or she is to last. It may be hard to think of yourself and your needs at this time, but if you don’t, your life will be consumed by your duties and you will burn out. Respite (a temporary break from responsibility) is not a luxury, it is a necessity.”

The caring.com article explains that there are a variety of respite care options:

• have a friend or family member stay with the patient
• take him/her to an adult daycare
• hire a professional sitter or caretaker to come to your home to look after the patient
• enroll the patient in a support group

The Alzheimer’s Association explains that “Respite care services are offered through community organizations, agencies or residential care facilities. The most common respite care services are in-home care and adult day centers.”  

The Department of Health & Human Services provides readers with a national eldercare locator. 

The Chapel Hill Training-Outreach Project, Inc. also provides caregivers with a national respite care locator. Do not be turned off by the fact that the site is focused on respite care for children ….  the locator is for patients and caregivers of all ages.

What is long-term care? It’s a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods of time. Long-term care isn’t just end-of-life care in a nursing home, and it’s not exclusively for the very old. Even those under 65 may need long-term care if injured, or chronically ill. Long-term care may occur in a person’s home, assisted living facility, or nursing home.

Long-term care can be very expensive, who pays for it? About half of long-term care is paid for by Medicaid. Since Medicaid is a government program for the poor, many people have to spend down their resources before they qualify for it. Other options for paying for care include long-term care insurance, reverse mortgage and self-insurance, though the latter is usually only possible for the wealthy.

Where can you learn more about long-term care? Kiplinger.com has an great feature on their site called, Long-Term Care Center. I’d recommend starting with the excellent(Aegis Award Winner) video on the subject. The U.S. Department of Health and Human Services maintains a site on the topic at www.longtermcare.gov.

Other potentially helpful links:
Medicare on Long-Term Care
National Care Planning Council