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.

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.

Caregiver

First, as a caregiver, you must be cognizant of your own physical and mental health, and realize that for you to effectively perform your role in reducing anxiety in someone who have dementia, your emotional house must be in order. That means getting rest, nutrition, exercise and time away will keep you prepared to attend to another’s needs.

As for those suffering from dementia, don’t get caught up in whether something, makes sense or not. A person with dementia may not be able to piece everything together, but their emotions are still valid. Their anxiety can be heightened when they aren’t being understood. Accept that their emotions have more validity than the logic that leads to them.

At Home

For those who are caring for someone with dementia at home, consider some of these tips:

• Use memory aids – They reduce stress and can help someone with dementia remain independent longer.
• Provide structure – A stable home environment with clear routines can help.
• Establish a nighttime ritual – Symptoms can often be worse in the evening. Try to provide a ritual in a serene environment that is away from noises and distractions.
• Enhance communication – Use simple sentences and speak slowly.
• Create a safe environment – Minimize clutter and keep the furniture consistently in the same place.
• Encourage exercise – Among other things, it can help with mood and attitude.

Visiting

If the dementia sufferer is receiving continuous care, consider these tips from Toronto Long-Term Care Homes and Services:

• Visit when you want to visit, not when you think you should visit.
• Find out the best time to visit with your loved one. Generally, people with dementia tend to be more alert during the late mornings and early afternoons.
• Watch for fatigue.
• Enjoy the silence.
• Live “in the moment.”
• Try “tidying the house.” Meaningful and familiar activities, such as folding clothes, make people feel useful.
• Be flexible. If your family member begins to wander, walk with them.
• Use distraction. If your family member gets upset, bring attention to something else.
• Give one instruction at a time and use physical cues.
• Most of all have fun!

There are more tips in, “When you come to visit…Tips on making your visits more meaningful” (PDF)

Interacting

For many caregiving tasks, Clinical Tools recommends using the following approach will help your loved ones better understand what is going on and reduce anxiety, especially in middle to late stages of dementia.

• Approach from the front: This will help loved ones with dementia be aware that you are coming. Approaching from the back can produce anxiety.
• Walk slowly: Allow time for loved ones with dementia to take in that you are approaching.
• Stand to their sides: This is a supportive stance, whereas standing right in front of them may feel confrontational.
• Call them by name: Use their names just to get their attention. As dementia progresses they may respond best to their first names, because they often remember them the best.
• Crouch low: Crouching down if they are seated or lying down helps them feel less threatened.
• Offer your hand: Their responses to this gesture will give you an idea of whether they would welcome further touch such as hugs.

They have a video on their site that demonstrates this approach.

There’s evidence that music and aromatherapy may reduce anxiety and improve mood.

Finally, don’t do it without help. All people change, especially those with dementia. Consulting experts regularly will help you understand your situation and better prepare you to help someone with dementia.

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 National Parkinson Foundation website contains a good number of resources that includes publications, links to related sites and NPF Programs. It’s a great resource, but as we’ve said before, we like our resources local because they’re much more likely to meet our specific needs, and the National Parkinson Foundation doesn’t disappoint. The NPF maintains two pages for finding help in your community.

The ‘Find a Support Group‘ function on the site actually gives a choice of finding an affiliated chapter, a NPF center, or a support group. You can search by country, state, or within a specified number of miles of a U.S. zip code. Try the zip search first.

NPF also offers a search for a physician, using their ‘Decide-PD‘ search. This appears to be a fairly new feature and maybe not as well thought out as the support group search. The most effective approach seems to be to select your state and then find the physician within the resulting list.

Also, while your at it, check our state and local resources page for other regional support.

The program’s initial airing is Tuesday, February 3, 2009 (the date of this post), but they usually post the video on their site after its broadcast window has closed.

Dave Iverson, was also interviewed by Terry Gross, on NPR’s Fresh Air program.