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.

No matter how you cut it, helping a senior transition from one home to another will take a lot of your time. If you’re working, you’ll need to take vacation time during and after the move. If you can enlist other family members to help in a tag-team approach, it’ll take stress off of a single individual.

Before the Move

If you can help remember all of the things that need to be done in advance of the move, you’ll minimize the stress that comes from discovering the forgotten detail. Make sure all of the “turn offs” and “turn ons” are scheduled. File a change-of-address form with the post office. They should notify everyone they have an account with, utility, including credit cards, insurance, and so on, as the statements come in the month before. The post office has a “Movers Guide” here. Check out our seniors moving post here for ways to notify Medicare, the IRS and more. The more things that you can have go like clockwork, the better. After that, don’t sweat the small stuff.

During the Move

Of course you and the movers, be they professional or family, will want to be as efficient as possible. But, if you’re all business, you’ll be missing an opportunity to attend to needs of the person moving. Take time for conversation. Reminisce about family events. Talk about friends and family, or what’s going on in the world. Good breaks for food and conversation will be good breaks from the uncertainty that goes along with moving to a new location.

Moving In

It would be easy to be all business while moving it. It’s a lot of work. Moving-in time is an opportunity to help your senior to get to know their neighbors. There’s a lot of time spent in public places–in the halls and in front of the building–that gives you the opportunity to introduce your senior to their new neighbors. This is where you have to be a little more gregarious than normal. Get their name. Ask them about the neighborhood. Ask them a question that your senior genuinely wants to know, because they’ve been in the same situation before and most people will recognize how disorienting things can be at first and will want to help. Get the lowdown on how things work, or what we like at SHF are some good tips to make life a little better.

After the Move

Now that you’ve showered them with attention before and during the move, you have to go back to work. Suddenly there’s a big void. Assuming that they’ve moved to a location near you, consider setting aside certain evenings and weekend days for the next few months where you can run errands, stop by to help out, or just go out to eat. Don’t focus all of your time on the chores.

If there are other family members in the area, enlist their aid. Assisted living communities have activities coordinator. Talk to her and see what she suggests that your parent may like to do to get involve in their new neighborhood. But don’t push it. It takes time to become comfortable in the new surroundings.

After all this advice, the final tip is to keep an eye on your own mental health. Clearly removing the stress from a loved one can put it on your own shoulders. You may be better prepared to take it than a senior, but you have your limits too. Don’t be afraid to ask for help and find some time for yourself.

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?

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 article provides readers with 10 signs of altzheimer’s:

1. Memory Loss
2. Difficulty performing familiar tasks
3. Problems with language
4. Disorientation to time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
8. Changes in mood or behavior
9. Changes in personality
10. Loss of initiative

Although many of us do experience some memory changes with age, people with Alzheimer’s disease suffer memory loss beyond slight forgetfulness.

This same Alzheimer’s Association article provides a nice chart illustrating the differences between the symptoms of Altzheimer’s and the symptoms of someone with normal age-related memory problems.  For example:

• Someone with Altzheimer’s will forget an entire experience.  Whereas, someone with age related memory loss will forget parts of the experience.
• Someone with Altzheimer’s will gradually be unable to use notes as reminders.  Whereas, someone with normal age-related memory changes is usually able to use notes as reminders.

Access the article for additional examples.

Coach Broyles’ Playbook for Alzheimer’s Caregivers

Coach Frank Broyles, Athletic Director for the University of Arkansas, wanted to share what he had learned about Alzheimer’s caregiving because it had been difficult to find good information when he needed it. It’s the same sentiment that gave momentum to Senior Help Forum.

The Playbook is available for free as a PDF file from www.alzheimersplaybook.com, or you can call 800.272.3900 to request a copy. The book is 112 pages and extremely well laid out. It’s broken into four major, color-coded sections:

• Early Stage AD – may last 2-4 years
• Middle Stage AD – may last 2-10 years
• Late Stage AD – may last 1-3 years
• Resources Guide

Each of the first three sections are further broken into the following parts:

• Pre-Game Planning – Largely focused on knowing what you’re up against in this stage
• Coaches and Special Teams – Mostly addressing doctors and ‘special teams’ that might include anything from support groups to Hospice
• Playing Offense – Making sure that you have a plan in place, both daily and long-term, and being prepared to adjust the plans
• Playing Defense – Preparing for the likely behaviors that come with Alzheimer’s
• The Training Table – Special attention to nutrition for both the patient and the caregiver

What can we say? It’s the most thoughtfully presented guide to Alzheimer’s on the net.

Bonus: The Alzheimer’s Playbook site has a download page with the Playbook in numerous languages, a pocket tip sheet and Playbook audio book.

Mayo Clinic on Alzheimer’s

While the Mayo Clinic site has a few small quirks, it’s a nice site within the overall MC site. Quirks? It was a little off-putting that it started with the definition of Alzheimer’s. It gave the appearance that there wasn’t any depth to the site, which there is. There’s also a link to their “new blog” which links to the first post in 2006. Have no fear, they’ve posted as recently as March 19.

The site has a number of major areas for Alzheimer’s on tabs at the top of the page. The tabs include:

• Basics – Includes a number of subtopics like Definition, Symptoms, Causes, Risk factors, Complications, Preparing for your appointment
• In Depth – Is a deeper look at some of the topics in the Basics area
• Multimedia – Includes images, slide shows and podcasts
• Expert Answers – Coverage of AD related topics like, “Antipsychotic drugs: Can they help people with Alzheimer’s?”
• Expert Blog – With posts once, or twice, a month including topics like, “Should you tell someone about his or her Alzheimer’s diagnosis?”
• Resources – Links to a number of key Alzheimer’s sites
• What’s new – A page that points you to new content on the site

Alzheimer’s Association Publication Page

Finally, a single page from the Alzheimer’s Association site that is of particular merit is the publications page. Acrobat PDF files are often a place to find well crafted and focused reports on a particular topic. The Alzheimer’s association has pulled together a good number of documents and categorized them under the following groups:

• Basics
• Caregiving
• If You Have Dementia
• Quality Care
• Safety
• Financial/Legal
• Reports
• Alzheimer’s Association

There are 90+ files in this area, so we’ll only highlight a few.

• Alzheimer’s Disease: The Basics – A great 32-page introduction to Alzheimer’s.
• Respite Care Guide – A nice overview of getting a break if you’re a caregiver.
• Staying Safe – A brochure on safety at home, while traveling or in an emergency.
• Money Matters – A brochure on identifying the cost of care and how to pay for them.

Former Supreme Court Justice Sandra Day O’Connor, former Speaker of the House Newt Gingrich and former Surgeon General David Satcher are on a task force studying the disease, which may overwhelm the U.S. health care system as baby boomers age, and talk about it on NPR’s Talk of the Nation.

You can try to download the MP3 here, but there’s no telling how long it will be available.

Speaking of Faith, an excellent American Public Media program, in their characteristically thorough fashion covers Alzheimer’s in their minisite called, Alzheimer’s, Memory, and Being.

Alzheimer’s disease has been described as “the great unlearning,” a “disease of memory,” a “demise of consciousness.” But what does it reveal about the nature of human identity? What remains when memory unravels? And how might such insights help Alzheimer’s sufferers themselves?

One of the most poignant moments was when psychologist Dr. Alan Dienstag talks about a woman who, upon visiting her husband who had Alzheimer’s, would always ask if he remembered her and was distressed when he didn’t. Dr. Dienstag suggested that she look for other signs of recognition. Yet, she persisted in asking. One day her husband responded in a most direct way by saying that he didn’t, but that he knew he loved her.

ABC’s Nightline talks about the statistics (1 in 7 will get Alzheimer’s by 65, and 1 in 2 by 85) and encourages people to get tested. The lead reporter, Terry Moran and Alzheimer’s activist, Meryl Comer, get’s their DNA test results on the show.

Dr. Steven Dekosky notes, “As we speak, there are some drugs, the drugs developed several years ago that are symptomatic drugs for the disorder, and probably 100 medications in various stages of development that are targeted specifically at the disease itself.”

You can watch the video here, or read the transcript here.

Related Links:

• Alzheimer’s Disease Facts and Figures – A new report (PDF)
• Caregivers Struggle with Needs of Alzheimer’s Patients – with Meryl Comer – PBS audio & video

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.