Here are some useful tips from the Del Mar Caregiver Resource Center about how caregivers should prepare for what happens to a care recipient if the caregiver is delayed or injured. Suggestions below.
Safety Tips – What If You Are Delayed or Injured?
The Caregiver
Del Mar Caregiver Resource Center Newsletter
November/December 2016
Safety Tips – What If You Are Delayed or Injured?
If you are responsible for the regular care of another person, what happens if you can’t be there? An accident or medical emergency can happen to anyone, at any time. It is important that emergency personnel (police, fire department and/or emergency room professionals) know that you are a caregiver and that someone is counting on you for their health and safety.
To ensure the well-being of the person you care for, always carry an emergency ID card in your wallet that identifies you as a caregiver. On the card, list:
* the name and location of the care recipient;
* your relationship to the person;
* an alternative caregiver or family member and their phone number;
* additional information on the person’s medical condition and needs; and
* a message indicating whether the person in your care is OK to be left alone.
Place an Emergency File Card on your refrigerator with the same information. Paramedics are trained to
look at the refrigerator for information on you.
Here are some useful tips from the Del Mar Caregiver Resource Center about emergency preparedness. This is especially important if you are a caring for someone else! Store a minimum of 3 days’ worth of water, medications, food per person. And have an emergency supplies kit prepared. Details below.
Weather emergencies and natural disasters can strike anywhere. Prioritize the needs of those in your care, then take steps to provide for those needs in case of an emergency. Store a minimum of 3 days’ worth of:
Water
The average person requires at least 1 gallon of water a day for drinking, food preparation and basic hygiene. Always keep ice on hand; in the event of a power outage, ice in the freezer will keep things cool longer. You can use ice in a cooler chest to keep essentials cool for a day.
Medications
Prescription and over‐ the‐counter medications and medical sup‐ plies (syringes, catheters) should be replenished at least 3 days BEFORE they are used up. For essential maintenance meds, keep a 1‐week “buffer” supply. For medications that need to be refrigerated (like insulin), buy a small cooler chest for emergency storage.
Food
If the person in your care requires special foods (Ensure, diabetic foods), make sure you have at least a 3‐day supply of these and other nonperishable food. Use and replace them frequently to keep them fresh.
Pets and service animal supplies
Keep a 3‐day supply of pet food and water.
Emergency Supplies Kit
Lists: prescription medications, dosage, and allergies; doctors and emergency contacts; the style and serial numbers of med‐ ical devices such as pacemakers.
Copies: medical insurance, Advance Directives, Medicare cards, Social Security, ID.
• Extra eyeglasses and hearing‐aid batteries, wheelchair batteries or other special equipment.
• Flashlight, battery‐operated radio, fresh batteries, extra blankets, work gloves, sturdy shoes, a manual can opener, eating utensils and a whistle.
• Extra clothing and incontinence supplies.
• Cell phone with rechargers and extra cash.
Those With Special Needs
An elderly person or a person with disabilities may face some special challenges if an emergency strikes. Caregivers can help them learn about the challenges that they may face and help them prepare ahead of time. Then they will be better able to cope with the disaster and recover from it more quickly.
He started the blog in January 2016 with a post with this title:
The personal journal of one man’s journey of living with a rare and little known neurodegenerative disease for which there is no treatment or cure called Progressive Supranuclear Palsy or PSP for short and Frontal Temporal Dementia- FTD
It reads more like a “Dear Diary” to me. And there’s not too much here on PSP. But, in case this catches someone’s eye, I’m sharing it…
This post may be of interest to caregivers who might like to develop a “care map.”
Avenidas, the senior center in downtown Palo Alto, recently organized a caregiver conference. One of the breakout session speakers was Rajiv Mehta, director of Atlas of Caregiving, on the topic of “Technology’s Impact on Caregiving.” Though one objective of the session was to learn how technology help keep everyone in the care network in sync, that didn’t seem to be the actual content of the session.
The session focused on developing a care map, described as a “care ecosystem — who you care for, who else cares for them, and who cares for you.” The process of drawing a care map is described in this 6-minute video:
Brain Support Network uber-volunteer Denise Dagan attended the breakout session and shared her notes, which include instructions for drawing a care map. See below.
Robin
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From Denise:
By the title of this information session you would think it was going to introduce attendees to various high-tech gadgets and apps that facilitate caregiving, but no. The speaker, Rajiv Mehta, Director of Atlas of Caregiving, introduced us to a decidedly low-tech gadget made with a pencil and paper, the Care Map.
First, he asked us to think of caregiving like an iceberg. There’s a few people you can see doing the daily caregiving, but there are many more people who play important roles whom you don’t see much of, but who are crucial to the well being of the person needing care. At least, that is the way it should be, if you have all available resources in place.
Rajiv believes visualizing the demands on a primary caregiver using the Care Map is crucial because the burden of care will only increase as baby boomers age, and Medicare continues its mandate to reduce spending waste. Even when caregivers do have help, logistics can be challenging. A Care Map can help plan logistics, too.
A brief survey of attendees show most people communicate and coordinate with friends and family using 3-ring binders, phone, email, texting and WhatsApp, facebook, Skype, FaceTime, and Google Hangouts, CaringBridge and Lotsa Helping Hands community care calendar websites. Even with all these tools, resources can be underutilized or missed, altogether.
The idea of the Care Map is to get an overview of everyone involved in an individual’s caregiving community, offering a 30,000-foot-view. By looking at the big picture, one can see:
– Who is indispensable? What would happen if they suddenly became ill or injured?
– Are those involved aware of one another’s involvement? Might things run more smoothly if they were organized? The household wouldn’t have too many casseroles, and someone would be fetching the dry cleaning, perhaps.
– Can responsibilities be divided according to expertise and distance from the person needing care. Does a family member live across the country, and specialize in taxes, for instance.
– What is each person’s impact? Some people who believe they are helpful, are actually stressful to the primary caregiver and/or the person needing care. Can that be remedied?
A Care Map can also change perspective because of what you don’t see:
– Have you forgotten to include anyone important to the person needing care?
– Are you taking anyone for granted, making them feel overburdened?
– Are there family members or friends who could be involved, but may not know help is needed.
– Are there professional services that could be helpful? A geriatric care manager, grocery delivery, etc..
– What changes have occurred since last time a care map was drawn? They should be updated periodically to illuminate resources that have ben dropped, but should be restarted, for example.
Drawing a care map is useful to the people immediately involved in a caregiving situation, but it can also be a powerful method of communicating the whole situation to professionals in identifying resources that are being underutilized. Share it with your physician or nurse practitioner, a geriatric care manager, or social worker to make sure you have all the support in place that you, and the person you’re caring for, need.
Rajiv showed a sample care map. Draw your own Care Map. Simple instructions are below:
1. Draw a symbol for the person needing care and everyone living in the household with him or her (including pets).
Place a circle (or, better yet, a house) around them, and label everyone inside.
2. Do the same for the primary caregiver(s), if they live separately (as in the sample diagram). If they live with the person needing care, leave enough space between everybody for labels and arrows.
3. Add thick arrows between the primary caregiver(s) and the person needing care. Note, arrows point in the direction of care and some people care equally for each other, as in the sample diagram. Thick arrows indicate involvement in another’s care more than once, daily.
4. Begin adding other people involved in the life of the person needing care. Be sure to include day programs, doctors, support groups, religious organizations, and in-home health aids, along with friends, and family. Remember to leave space for labels, arrows and anyone you forget in the first draft.
Note: Locate people on the paper according to driving distances; nearby being 20 minutes away with the next, middle distance, being 2 hours travel time, and far away being more than 2 hours. Add circles to indicate those distance guides, when you have everyone listed.
5. Add thin arrows for those involved daily with the person needing care, dashed arrows for those involved weekly, and dotted arrows for those involved occasionally. Be sure to include any thick arrows for primary caregivers in other households, so you don’t overburden them with help requests for your person needing care.
6. If you find someone with a dotted arrow, or no arrow, consider their skills and availability, then present them with a specific help request. Starting with small favor or errand is more likely to garner their continuing assistance.
7. Use your Care Map to make sure all your caree’s needs are met by coordinating skills and availability among their friends, family, spiritual and medical community, as well as commercial services. Share your Care Map with people who may be able to spot gaps between needs and resources.
At the late October 2016 Avenidas Caregiver Conference, the keynote speaker was Lisa Krieger, reporter with the San Jose Mercury News. Her topic was the “Slow Medicine Movement.” The description was: “legislative and policy efforts to improve caregiving, palliative medicine, and our final years.”
Ms. Krieger authored a thought-provoking series in late 2012 on the “cost of dying” at the end of life in the SJMN. You can find a link to a BSN blog post about the series and Ms. Krieger’s eight “cures” to reduce suffering and the cost of dying here:
Brain Support Network volunteer Denise Dagan attended the Avenidas Caregiver Conference in late October 2016. Denise shared these notes from Ms. Krieger’s keynote address.
Robin
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Notes from Denise:
Sadly, Ms. Krieger went through the care of her father without the information and assistance available at the kind of conference at which she was speaking. She recounted how she had no awareness of palliative or hospice care, advance directives or POLST forms. Nor did she realize the exorbitant cost of the treatment options the hospital was offering her dad. Treatments she knew were not the right choice for a man with dementia, but which doctors looked disappointed with her for rejecting. Only after she had sent them all away did someone suggest hospice, in the last few days of his life. But, it was the $323,000 bill for a 10-day hospital stay that really sent her over the edge. As a journalist, she felt she had to write about it.
In her initial research she was impressed with Dennis McCullough’s concept of slow medicine in his book, “My Mother, Your Mother: Embracing ‘Slow Medicine,’ the Compassionate Approach to Caring for Your Aging Loved Ones.” He found that seniors with access to intense medical intervention did no better than those without such resources because medical technology has, “blurred the line between saving a life and prolonging a death.”
“Slow Medicine,” he says, “is shaped by common sense and kindness, it advocates for careful anticipatory “attending” to an elder’s changing needs rather than waiting for crises that force acute medical interventions—thereby improving the quality of elders’ extended late lives without bankrupting their families financially or emotionally.” Essentially, he’s talking about palliative care and hospice services, advance directives and POLST forms — the very things Ms. Krieger didn’t know about during her caregiving journey. But, she’s telling us about them, now.
The second half of Ms. Krieger’s talk was about recent updates and expansions to family caregiving support both in California and nationally. Although she did not specify, she mentioned seeing recommendations to Congress from the National Academy of Sciences on the subject. Here are a few things she did specify.
Medicare finally reimburses doctors for a single care planning meeting with seriously ill patients and their families so doctors don’t lose out financially for taking the time to provide information about treatment options, possible outcomes, and answer questions. If there’s one thing Ms. Krieger wished she’d had, it was medical data on outcomes of the treatment options being offered her father. Today, that data is available but, excepting for this one billing-approved meeting, doctors are paid for each procedure or test, not talk or explanations. There is a bill being debated in congress to further expand Medicare’s coverage of the care planning process, but it needs support to get passed.
Recent changes to the California Care Act include provisions that require hospitals to identify a caregiver upon admission to whom the hospital may disclose medical information about the patient, and train in post-hospital care during the discharge process.
California recently increased its paid leave to 60% percent of a person’s salary (capped at $1,100 per week) starting in 2018, and created a new classification for low-income workers, who make about $20,000 or less, to receive 70% of their regular pay, so more people could afford take advantage of the benefit.
The California Task Force on Family Caregiving was recently established “to examine issues relative to the challenges faced by family caregivers and opportunities to improve caregiver support, review the current network and the services and supports available to caregivers, and make policy recommendations to the Legislature.”
The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719/H.R. 3099) would require the Secretary of Health and Human Services to develop, maintain and update an integrated national strategy to recognize and support family caregivers. This also needs support to get passed.
There is a movement afoot that started in 1994 proposing to change Social Security benefits to reflect child-care years out of the paid work force, that is now being expanded to include Social Security quarters credit for those who leave work to care for a family member in the case of long term illness. Unfortunately, this is still in conceptual stages.
Finally, there is a push to educate young people about the need for compassionate caregiving and to elevate the status and pay for caregivers so that young people are more likely to consider it as a career path. After all, the young people today will be our caregivers tomorrow.
