Much is said about caregivers and their need for respite time away. But what if you could make your time as a caregiver more rewarding, more fulfilling…something that you looked forward to.

No one is saying that caregiving will ever be easy, but being able to look beyond the difficulties and seeing the beauty in people despite what afflicts them is exactly what Phillip Toledano and Judith Fox have done.

Phillip Toledano’s Days with My Father is an amazing site that received a lot of recognition earlier this year and will be a book by the same name that will be out June of 2010. It’s hard to look at the site and not be moved. Toledano is clearly a talented photographer and has two other gorgeous photo books in print: Phonesex and Bankrupt which remarkably wasn’t done recently, but in 2004.

I heard Judith Fox interviewed on Fresh Air the other day and was taken by her energy and compassion. Judith married her husband just three years before he was diagnosed with Alzheimer’s. As Fresh Air puts it, “In an attempt to remove the sense of isolation that so many feel, Fox attempted to capture images of the soul of the man she still loves.” Ultimately she was encouraged to publish a book with her photographs. There’s a five-minute video that talks about the thinking that went into the photos and the book called, I Still Do: Loving and Living With Alzheimer’s.

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?

The concept of ‘sharing the care’ was not specifically designed with the elderly in mind, yet it’s extremely applicable. The book was written by a couple of women who, among others, were were formed into a group at the suggestion of Dr. Sukie Miller who was treating a patient with a terminal illness. Ultimately it lead to others to ask how they could do it, then a book and ultimately a website.

I think one of the things that appeals to me about this is that when someone has terminal illness, and we’re not a primary caregiver, it’s hard to know how to help…and we often don’t. Share the care makes it easier to know what to do. Sharing the care decreases that chance of burnout and increases the chance that the person in need will get the quality of support they deserve while helping friends and family to know when and how they can help.

While managing the first group, some issues came up regularly and ultimately were turned into seven principles for caregivers.

1. Sharing responsibility is the key to not “burning out.”
2. It won’t work unless everyone gains something personally.
3. Know your limits and stick to them.
4. There’s no one right way to do it.
5. Anyone who wants to help should be encouraged.
6. Trust the group; support each other.
7. Keep your own life in good working order.

Again, the thing that I find particularly appealing about this approach is that it’s a loose and fairly unstructured, organization. The commitment can be low when need be. People can step in to fill the gaps where needed. If someone has to drop out for awhile, they can. The points that go with the first principle do a nice job of illustrating this:

• No one person has to be in charge all the time.
• No one person has to deal with every crisis.
• No one person has to be “on call” every single day.
• No one person has to make all the decisions, all the time.
• No one person has to try to run his own life plus the entire, complex life of his loved one.
• Let the others do their share. They want to. They need to.

If you, or someone you know, is faced with caring for an individual with Alzheimer’s, Parkinson, or another terminal illness, Share the Care.

The Public Broadcasting Company (PBS) provides the public with some fantastic resources for preparing yourself to begin caring for your parents.   First of which is the “Cargiver’s Handbook.”

PBS recognizes that as our population ages, more and more adult children will be “grappling with an unprecedented social, cultural, economic, and personal revolution as they transition into the primary caregiver role for their aging parents.”

“Caring for Your Parents” is a two hour program that addresses each of these realities.  The program concludes with a half hour panel discussion about how to take the first step in beginning to have the difficult discussion about parental caregiving.

The website provides you with:  a program locator tool to determine when the program will be airing in your local area, a way to buy a dvd of the program, the ability to watch the program online, and to subscribe to vodcast interviews with caregiving experts Hugh Delehanty and Elinor Ginzler.

Flickr by Per Ola Wiberg (Powi)

Being a caregiver is a tremendous responsibility. It is critical that you remember to take care of yourself when you are facing such challenges.

There are a wealth of resources on the Internet for caregivers:

Family Caregiver Alliance

Family Caregiving 101

National Alliance for Caregiving

Alzheimer’s Association CareFinder

Family Caregiving 101  is one of our favorite sites for caregivers. The site reminds caregivers that caregiving is not all up to them. There are a host of community resources available. The site contains information on: the stages of caregiving, how to manage, how to reach out for help, where to look for help, public policy and the media, how to assist a caregiver, etc.

The National Family Caregivers Association provides ten tips for family caregivers:

1. Remember that you have a life of your own. Your loved one’s illness or disability should not control your life or always remain the primary focus.
2. Be good to yourself. Making quality time for yourself is imperative.
3. Seek out professional help if you start to witness signs of depression.
4. Learn to accept help when people offer to lend a hand. Let them know specific things they can do to help.
5. Educate yourself about your loved one’s condition.
6. Allow your loved one to be as independent as possible. There is a difference between doing and caring.
7. Trust your own instincts. More times than not, your instincts are correct.
8. Allow yourself to dream your own dreams.
9. As a caregiver, you also have rights – - stand up for those rights.
10. Look to other caregivers for support. It helps to know that you are not alone.