Family Caregiving

May 2018

Dear Neighbor,

Nationally, about 40 million people provide unpaid care to an ill or disabled adult. While we do not know how many family caregivers there are in Washington, we know that their numbers are significant and increasing. This is the simple result of our community's aging.


A Day in the Life of a Caregiver

In the course of responding to Washington's emergencies, we have been privileged to meet many family caregivers, demonstrating with their hands-on care that love is indeed an action verb. We see people undertaking unfamiliar tasks, like the elderly husband who learns to prepare simple meals when his wife can no longer manage in the kitchen. We see individuals with no medical background learning to use the complex medical equipment that their partner needs.

W e also see family caregivers who are exhausted. There are limits to how much any one person can do, and we see people who are stretched beyond those limits. This newsletter sets out a general approach and specific resources that we hope will be helpful to families.

A WORD OF THANKS

Before plunging into the topic of caregiving, we want to extend our heartfelt thanks to all who contributed during the recent Give Local event. We are so grateful to the Connecticut Community Foundation (CCF) for sponsoring this incredible fundraising event, which raised $1,381,617.00 for area nonprofits in a 36-hour period.

Thanks especially to each and every one of the 115 individuals who contributed to Washington


	We are Washington Ambulance Association

Ambulance Association during this event. Your enthusiasm led to our winning two major participation prizes. On the first day of the drive, we were thrilled to win Ericson's Depot Dollar Prize of $1000, sponsored by Ericson Insurance and awarded to the Washington organization with the most individual donors between 1 and 4 p.m. When the campaign closed, we found that we had won the Ion Bank Grand Prize for Most Individual Donors to a Small Organization. That prize was a $1500 bonus!! In addition, we also won CCF's Healthy Start prize of $500, awarded to a health organization that received five or more donations between 7 and 10 a.m. on the morning of the second day.

Because of your steadfast support - because you have taken such good care of us in this and other campaigns - we have been able to focus our efforts on our mission, "to serve our town by providing professional and compassionate emergency medical services." Because of you, we are able to continue a 75+ year tradition of providing emergency medical services to our town 100% Volunteer and 100% Free of Charge. THANK YOU!!!

P.S. Thanks also to Paloma Criollo, former Washington EMT and current freelance filmmaker, for producing the short film above.

THE CAREGIVING JOURNEY: SUGGESTIONS

1. BEGIN AT THE BEGINNING

When you first embark on caregiving, you may not know what kind of help your family member needs or what kind of help you need, let alone what kind of help is available. The challenges of caring for someone with physical impairments and a clear mind are different from those of caring for someone with dementia. The challenges are different when you share a home and when you are attempting to help from a distance. The challenges that arise from an emergency leading to a hospital stay are different from those that arise when a family member experiences a gradual decline.

Family and friends can be spectacular in helping you begin to navigate, especially if they have relevant experience. Seven additional resources that may help you at every stage of your caregiving journey are:

Trusted physicians;
Town resources, particularly The Washington Senior Center. The Senior Center's on-site programs include a range of exercise classes, along with social and educational gatherings. Director Pam Collins also has a wealth of knowledge about helpful resources. When finances are a challenge, Pam works very closely with Mary Anne Greene, at Town Hall, to identify the assistance programs for which you may qualify;
Local Visiting Nurse Associations, Home Care Agencies, and private caregivers;
United Way 211;
The Western Connecticut Area Agency on Aging, whose website includes information on Caregiver Services as well as a truly useful FAMILY CAREGIVER GUIDE. Among other things, that guide provides a helpful introduction to what Medicare does and does not cover, as well as an introduction to the different kinds of in-home help options.
Books. We've provided a recommended reading list below. Diagnosis-specific books, like The 36-Hour Day (focused on Alzheimer disease and other dementias) can be enormously helpful.
Technology. Whether it's something as simple as a daily text ("Monday morning, I'm OK") or as sophisticated as a monitoring device, technology can help a person, with disabilities continue to live with greater independence. We in the ambulance are particular fans of medical alert systems that allow a person who has fallen to call for help and speak with an operator.

2. PLAN TO BE FLEXIBLE

If you're the sort of person who is used to being in control of your life, caregiving is going to present you with special challenges. Things frequently don't work out the way you plan. The best you can do is plan to be flexible. Start the day or the month or the year with Plan A, but understand that you may need to move to Plan B or C, and that you may not be able to control the timetable.

3. TAKE CARE OF YOURSELF

As you develop and adjust your caregiving plan, be sure to include a plan to take care of yourself. The adjustments needed when a parent or partner has a disabling accident or illness, or begins showing signs of Alzheimer's, come with a burden of work and fear that is lightened by love, but still can be a heavy load. The same is true for parents caring for a child with significant disabilities, or partners caring for each other in mid-life illnesses.

In an article called Caregiver stress: Tips for taking care of yourself, The Mayo Clinic offers these suggestions:

Accept help
Focus on what you are able to provide
Set realistic goals
Get connected
Join a support group
Seek social support
Set personal health goals
See your doctor

Within the Town of Washington, programs such as The Gunn Memorial Library's popular Monday Movie Matinee provide an outing and break for all, while a walk in Steep Rock is always good for the soul.

4. DEVELOP A TEAM AND A COMMUNICATION PLAN

As you reach out to ask for help, you may have many people assisting in caregiving. Within a family, people will naturally gravitate towards the roles for which they are best suited. One person may be uncomfortable with hands-on care, but very good at managing finances. Don't go it alone! Work with the goal of developing a team, drawing as you can on family members, friends, and paid caregivers.

The more people are involved, the more important it becomes to work on good communication, documentation and coordination. It helps a great deal if one person can quarterback the effort, with a focus on planning and commmunication. For instance, say that you have a patient with three significant medical conditions, two relatively minor conditions, and ten medications. Who manages and documents medication administration, so that you do not under-dose or over-dose? Who makes sure that new information from one physician is shared with all the other physicians? Who manages the calendar? Who has a master list of phone numbers?

5. PREPARE FOR EMERGENCIES

One day, you may need to call 911. There are two things that you can do NOW to help us to help you in an emergency situation:

First, make it easy for us to find your home. Mark your driveway with large, reflective house numbers.
Second, obtain and complete a "File of Life" form. This is a fill-in-the-blanks form that will guide you to answer the questions that we will ALWAYS ask, no matter what the emergency - questions about diagnoses, medications, and allergies. It's very helpful if you can keep that form up to date (using pencil so that it's easy to make changes), and handy. Current information on a patient's medical history allows the ambulance crew and the E.R. physicians to do a better job of treating a patient. For instance, there are certain drugs that the E.R. doctors might use for a stroke that are contra-indicated if the patient has been taking specific prescriptions. If you do not have a File of Life form, you can obtain it for free at Washington's Senior Center. Alternatively, send a quick email to us (info@washingtonambulance.org) and we will send you a form.

6. WHAT IF YOU'RE THE PERSON WHO NEEDS CARE, OR WHO MAY NEED CARE, OR THE ADULT CHILD OF SUCH A PERSON?

Thus far, we've directed this newsletter to caregivers. We'd like to switch gears now and address two different audiences: older adults who are living independently and their adult children.

Our first suggestion is directed to anyone over the age of 50. Protect your autonomy by getting ahead of the curve on planning. If you are living in your dream home and want to age in place, don't wait till you are 80 to make it more accessible. We have seen many situations where a debilitating injury made the second floor of a home unreachable, or where the two or three steps from front door to front walk became a challenging hurdle. By contrast, we have also seen homes that were built or renovated to make them work for people using wheelchairs or walkers. Leading the charge on this kind of planning, and talking about it with your adult children, will be helpful to all of you. It may help to establish a comfortable dialogue about aging and to nourish your connection with each other.

If you're an adult child who is worried about aging parents, and they have not initiated any discussion about aging and its challenges, consider how you can best begin such a discussion. AARP offers a helpful, interactive video on Starting the Conversation Early. Early conversations, while all parties are well and healthy, can help you to understand each other's wishes and concerns, prevent emergencies, preserve independence, and prepare for likely scenarios. This is tricky ground!

Finally, the issues of Living Wills, Advance Directives and the Appointment of a Health Care Representative are extremely important, but more than we can tackle in this newsletter. We will plan to discuss those in a future newsletter. For the moment, we will simply say this. If you are of legal age and you want your family and caregivers to respect your wishes in a situation where you are not able to speak for yourself, it is critical to put those wishes in writing, in advance, in a legally binding document.