• patients and their families to keep loved ones up to date on a patient’s progress
• loved ones to send a patient messages of encouragement

This morning, Richard Liechty,  a co-worker,  shared a similar site with me called CaringBridge.  In recent months, he has been staying abreast on the conditions of a couple of loved ones via CaringBridge.

According to their website, CaringBridge was started in 1997 when “founder Sona Mehring’s close friend suffered a life-threatening pregnancy.  To keep family and friends informed about the critical situation, Sona and friends created a website.

Baby Brighid was born almost three months premature.  With her mother in critical condition, the one-pound preemie was quickly rushed to the Newborn Intensive Care Unit at Children’s Hospital in St. Paul Minnesota.  The family posted daily news about mom and Brighid on the website.  An accompanying online guestbook enabled visitors to send the family messages of love and encouragement.  Sadly, Brighid’s story does not have a happy ending.  After a nine-day struggle against tremendous odds, she died in surgery.

The website allowed the family to convey the saddest of news without the painful burden of several emotional phone calls.  The parents also had a place to post a final message to honor Brighid and their supportive online community.

Brighid’s death prompted an outpouring of loving messages to the family. They immediately understood that other patients dealing with the birth of a premature baby, childhood cancer or other critical illness would benefit from the same web resources.

And CaringBridge was born.”

A special “thank you” to Richard Liechty for sharing his experience with CaringBridge.com with me.  Richard can be followed on Twitter @RichardLiechty.

However, I think many of you might enjoy reading the article entitled, “In India they Really Like Older People.” It is about a man who moved to India with his elderly parents. Both of his parents were ailing. One parent was suffering from Parkinson’s Disease and the other had Altzheimer’s Disease. The care he found for them in India was outstanding and much, much more affordable than it is here in the United States.

Special “thanks” to Barbra Wells for sharing this article with me this morning.

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?

If you can, don’t jump in with the news first thing. This may be difficult if your presence at their home, or on the phone, is out of the ordinary. Ask them how things are going and/or how they’re feeling. A few open-ended questions is a good way to start the conversation. Be sure to listen, and don’t be quick to fill the silence. Let them talk if you can.

When you feel their side of the conversation begin to dwindle, it’s your turn to talk. “Mom/Dad, I came here to tell you that…” If we’re talking about a death of a family member, or friend, don’t worry about being particularly eloquent. You can say, “I came to tell you that Tom died.” Or you can use, “passed away”. If you want, you can preface it by saying that you have ‘sad news’, or that ‘there’s no easy way to say this’. Don’t beat around the bush, but don’t rush through it either.

From here on in, your job is to convey the relevant facts, be a good listener and to provide comfort. Let them talk. Answer their questions as well as you can. Let them lead the conversation. Try to just listen and be open to a range of feelings. Let your parents express all their feelings, even if they’re hard to listen to. Talk about your own grief, feelings, and memories, and let your parent know that he’s loved and that you’ll do your best to support him throughout the process.

Keep in mind that everyone reacts differently to bad news. Some people are more emotional than others. Make sure that you’re prepared to break the news by being as in control of your emotions as possible. If they yell, remain calm and try to calm them. If they cry, comfort them. They may just remain silent, letting the news sink in. If they do that, put your arm around their shoulders and show sympathy.

On the other hand, if you don’t think you’re up to it and just can’t do it, consider asking another family member, or a minister, to do it.

You can see how doctors are taught to break bad news using Robert Buckman’s Six Step Protocol for Breaking Bad News.

If you’re a doctor, you probably already know his book: How to Break Bad News: A Guide for Health Care Professionals

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.

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.

From Halley via Flickr

There’s much said about caregivers’ need for support, but it’s often difficult to know how to help a caregiver when they need it. The tips here approach caregiver help from the perspective of the caregiver’s helper.

You may have already offered to help a caregiver, but not yet been asked. Often caregivers have many reasons for not asking for help. They may appreciate the offer, but think that it would be an imposition to ask. They may not know how to ask. Subconsciously they may feel that to ask would be to abdicate a responsibility. Or most plainly, they may think it too difficult for the person who made the offer.

One way to make it easier for a caregiver to accept your offer of help is to make it as specific as possible:

• “I made an extra big casserole so that you could have some.”
• “Do you need some laundry done? I can come over today and do it.”
• “I’m going to the store. May I pick up a few things for you?”
• “I’ve got the afternoon off tomorrow. May I fill in for you while you run some errands?”

If you’re able to bridge the acceptance gap, consider making an offer to do something on a routine basis:

• Assist with yard work, like mowing the lawn, or snow removal
• Do laundry
• Do some part of the routine housecleaning

Whatever you do, be sure not to add additional stress:

• Be on time and follow through on offers
• If you’re doing yard work, bring your own tools if you can
• Be careful not to be disruptive to the caregiving process
• If there is a group helping out, try designate one person to coordinate assistance

Caregivers can become socially isolated. Try to combine respite with a social occasion. If there is a group of friends/family that can help on a periodic basis, see if the caregiver is amenable to have everyone over for a morning of chores and a potluck lunch.

The keys in helping a caregiver are to be patient in letting them choose the time and circumstances for accepting your assistance, be sure that you’re not adding stress with your offers, and be as consistent as possible in your follow through on your help.

Photo by a.drian via Flickr

Geriatrics is the branch of medicine that focuses on health care of the elderly. A physician who specializes geriatric medicine, a geriatrician, has training and certification in addition to their regular medical training to help them care for older adults and their specific medical needs.

According the the The American Geriatrics Society, “geriatricians manage multiple disease symptoms and develop care plans that address the special health care needs of older adults and coordinate care with other medical disciplines to treat the “whole” patient. Geriatricians are generally primary care physicians who are board-certified in either family practice or internal medicine and have also acquired the additional training necessary to obtain certification.”

While it’s not necessary that a geriatrician would become a person’s primary care physician, in certain situations it might make more sense to see a geriatrician if:

• their condition causes considerable impairment and frailty,
• they are an older adult with those medical problems primarily associated with aging,
• they have growing number of prescriptions, or
• the older adult who have multiple chronic health problems such as cardiovascular disease, memory problems, depression and a history of falls.

A geriatrician will address issues like Alzheimer’s disease (and other dementia), arthritis, chronic heart & lung disease, general decline, impaired overall function, incontinence, osteoporosis, Parkinson’s disease, sensory problems like vision and hearing, and stroke. They also will look at the possible interactions and side effects that could come from the prescription and over-the-counter medications that seniors take. The geriatrician looks for mood disorders such as depression are common in older adults as well.

If you, or a loved one might need one, ask your primary care physician about recommending a geriatrician, or you can search for one:

• The AGS Foundation for Health in Aging Physician Referral Service, or call 800-563-4916
• Wellness.com Geriatrician locator

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 Senior Organizer: Personal, Medical, Legal, Financial
The title is pretty self explanatory. This is a book, largely of forms that helps organize critical information that will be important during medical emergencies, diminished mental capacity and ultimately the death of a loved one. The Senior Organizer has a place to put all the information that you’re going to need for a number of situations.

Up front, the organizer has an index to the most important information in the book for emergency situations. It simply points the reader to the most important pages, like: specific information on the senior, emergency contacts, medications and other information stored in the book that can be important to have in an emergency. Overall, the book has two major sections after that that contain “personal & medical” and “legal & financial”.

The personal and medical section includes everything from doctors, doctor visits and prescriptions, to insurance and contact information.

The legal and financial is as you would expect, including information on banks, taxes, real estate holdings, insurance, health directives and end-of-life documents like wills.

This may seem like something you could do on your own, and it is, but the value that the editors of The Senior Organizer bring is their thoroughness and that they’ve packaged it into a very usable book. A thoughtful bonus is that buying the book entitles you to free downloads of new pages if you have to revise or add anything, or if you want to create a notebook instead of keeping it in a paperback.

One caution that I would make is that the book has places for information (Social Security number, date of birth, and credit card numbers) that would be ideal for identity theft, or outright theft. It should be agreed that this kind of information be kept in a more secure location.

Family Caregiver Organizer: A Personal and Medical Journal for Care-receivers and Their Caregiver(s)
The Family Caregiver Organizer is singularly focused on health care and, I would argue, on individuals who receive a lot of health care.  The organizer is spiral bound and a little friendlier for every day use than The Senior Organizer. The bulk of the organizer is monthly logs that include: My Calendar, Questions for the Doctor, Lab Tests, Medications and daily logs among other things. There are six months of logs and you can order more pages.

Up front is, “All About the Care-receiver”, including sections called My Health Now and My Health History.

The organizer includes a Family Caregiver Answer Book, a reminder booklet for caregivers called, Caring for the Caregiver and a File of Life, covered recently here on SHF.

My take? I’ve ordered both for my parents.