My Favorite Online Tools for Caregivers

"Caregiver Support" by The Animated WomanI love this drawing by “The Animated Woman” (called “Caregiver Support,” and shared here with permission). The person in the middle is both caring for the person on the left and being supported by the person on the right. As caregivers we need this kind of support, don’t we? It’s like a chain—the beginning of what is sometimes called a “circle of care.”

Do you know someone who needs assistance because of a crisis, illness, injury or long-term condition? Do you know a caregiver who is stretched to the limit? Using free and super-easy tools on the Web, you can help them by building a circle of care.

In this post for the blog caregivers.com, I describe 3 of my favorite free tools online to help family caregivers:  Meal Train, Lotsa Helping Hands, and eCareDiary.

What I Wish I Had Done Differently as a Caregiver

Like all family caregivers, I did the best I could with the information and support I could find, but I know now that I would do a number of things differently if I had to do it all again.

Check out my blog post on caregivers.com today to read more.

Mom, age 79, and me in 2012 when she was living with the final stages of dementia, unable to speak but still able to communicate in her own way.

Adult Day Service Centers: Hidden Jewels to Relieve Caregiver Stress

Adult day service centers (also called “adult day care”) provide social stimulation for adults who need supervision due to a physical disability, frailty, or dementia, and a much-needed break for family caregivers.

My mother, Judy, had vascular dementia and Alzheimer’s disease. When she moved in with me and my young family in 2005, she could still do a lot by herself, but when I left every morning to go to work she was bored and depressed. She was also not eating. I didn’t realize until much later that Mom could not remember to look for the meals I left for her in the refrigerator, and that she could not follow my instructions to heat them in the microwave. I hired a neighbor to visit with Mom (and encourage her to eat), but that was only a few hours a week. Mom also refused to accept the invitations of other neighbors to go out for lunch or to activities such as concerts. Feeling self-conscious about her memory loss, she was isolating herself. How could I help her feel more engaged and less lonely? And how could I stop worrying about her all day long while I was at work?

At my local Office for the Aging I heard about an adult day service center at a nearby assisted living facility. Like most adult day service centers, this program provided activities such as discussion groups, reading out loud, exercise, music, and art, along with meals and snacks. Unfortunately, when I showed Mom the brochure she refused to go. If she had not moved into assisted living shortly after our conversation, I’m sure I would have suggested the program again.

Common questions about adult day service centers:

Story time with visiting children, at Millennium Day Care in ArkansasAre these programs only for people with dementia?  No, adult day service centers are open to any adult who needs supervision or assistance because of a physical disability, frailty, or cognitive impairment. Some programs, however, are more oriented toward people with Alzheimer’s disease and other dementias.

What is the cost, and how can I pay for it?
Average daily fees run from $40 to $60. About 30% of adult day center participants pay privately. People attending these programs are eligible for funding from a number of sources including Medicaid-waiver programs, Veteran's contracts, and several federal entitlement programs. Guidelines for receiving these funds vary by state. Adult day service centers are usually covered by private long-term care insurance once that insurance is triggered by the person needing help with at least two “activities of daily living” (dressing, bathing, toileting, etc.) or needing supervision for their safety because of a cognitive impairment. Your local Office for the Aging should be able to help you figure out what funds are available.

Read more (posted on caregivers.com)

Affordable Alternatives to Assisted Living and Nursing Homes

I was recently contacted by a visitor to my blog and asked an intriguing question, which some you might relate to. She wrote:

"Not everyone has children who can or are willing to take care of their parents. And some adults do want to live independently.  Much of the boomer cohort will look for smaller, more affordable homes in communities where they can meet others their age to share in planned activities, trips, etc. What kind of affordable communities are available to accommodate a working class cohort that may not be ready for an assisted living or nursing home level of care in their 60's - 70's?"

An excellent question! If you can't afford a continuing care retirement community, assisted living, or a nursing home, and don't have children, how can you find help with long-term care if you need it?

This is what I wrote in response. Feel free to leave a comment below if you have other suggestions.

Some assisted living facilities and nursing homes do accept Medicaid, if the person qualifies for that. Mom qualified for Medicaid after she spent down her savings. Unfortunately most people do pay for assisted living out-of-pocket. Private long-term care insurance, which would pay for most of assisted living or nursing home care, is a bit of a gamble (you never know if they will change their policies or increase your premiums), but it's relatively inexpensive if you start buying it in your 50s as opposed to in your 60s. Private long-term care insurance kicks in once you need help with at least two "activities of daily living" (i.e., bathing, dressing, eating, toileting) or if you have a cognitive impairment such as early-stage dementia and need supervision for your safety. It does not pay for in-home care such as shopping, cooking or cleaning if you do not have a cognitive impairment or need assistance with activities of daily living.

So, for someone with limited savings, I would recommend looking for subsidized senior housing with activities and meals where the rent is based on your income. There are several such senior housing centers in my city. Your local Office for the Aging should be able to tell you what kind of housing is available in your area, including any small homes for elders that accommodate up to 10 residents. If you want to stay in your own home, your Office for the Aging should be able to help connect you with affordable transportation services for the elderly and disabled; meal delivery services; and volunteers who might be able to come into your home and provide companionship and light housekeeping.

Also, there are more and more senior cohousing neighborhoods being built in the U.S., where people 50 and over share some meals and common spaces, and often help care for each other (shopping, rides, etc.) in an informal way, allowing people to remain in their own homes longer than they might otherwise be able to. I happen to live in a multi-generational cohousing village. I write about cohousing and other forms of "aging in community" on this webpage. You don't have to move into a new neighborhood to build this kind of community, either. You can find, or create, such networks in your own area.

Why a POLST Form is an Essential Tool for Caregivers

If you provide long-term care for a loved one with a serious illness or condition, learn more about the Physician’s Orders for Life-Sustaining Treatment (POLST) form and how it can protect your loved one—and you.

As caregivers, we are so busy tending to our loved one’s quality of life from day to day that it’s often difficult to think about end-of-life issues. That was certainly true for me when my mother was living with advanced dementia in a nursing home.  As I’ll explain shortly, I thought I had everything in place to honor her preferences for her end of life, but protecting her from unnecessary medical intervention turned out to be more complicated, and traumatic, than I expected.

If your loved one already has a Health Care Proxy and Living Will, that’s terrific. You may also have asked their doctor to sign an “Out of Hospital Do Not Resuscitate” (DNR) order. But a 4^th document, less well-known, is equally as important: the Physician’s Orders for Life- Sustaining Treatment (POLST) form (available in many, but not, all states; see below).

Why do we need POLST forms?

A neon-pink POLST formFirst of all, neither Health Care Proxies nor Living Wills are honored by EMS crews in an emergency. A DNR form should be honored by EMS crews, by law, but a POLST form is neon pink, designed to grab the attention of EMS crews in a commanding kind of way. It’s also more detailed, and updated and signed by your loved one’s physician on a regular basis, so it carries more weight than these other forms with EMS crews, hospitals, and elder care facilities.

A POLST is for patients with serious health conditions who

• Want to avoid or receive life-sustaining treatment
• Reside in a long-term care facility or require long-term care services, or
• Might die within the next year.

The POLST form details the patient’s preferences for:

• Resuscitation instructions when the patient has no pulse and/or is not breathing
• Instructions for intubation and mechanical ventilation when the patient has a pulse and the patient is breathing
• Treatment guidelines
• Future hospitalization and transfer
• Artificially administered fluids and nutrition
• Antibiotics, and
• Other instructions about treatments not listed.

Read more (posted in caregivers.com)