Your typical day as a caregiver probably is something like mine. My normal day consisted of juggling routine chores for Dad, family, work, and home. Then I added additional tasks whenever I found the time. For me, a typical day never had a moment to spare.

A typical day for a care receiver is very different. The pace of Dad’s normal day was much slower. The challenges just as great, maybe greater, than mine. His challenges spread throughout the day at a pace he could handle. These challenges are familiar to many caregivers and involved things we take for granted – bathing, dressing, meals, medication and medical treatments, helping out where he could. And filling in the time in between.

Tracking a typical day for the care receiver

I knew Dad’s basic schedule well. But I wondered if I might be missing something important. I decided to step out of my day and look closely at how he spent his day. It was easy to do. A simple hour by hour list starting at 6:00 am with his first medication. Then on through the day noting what he did each hour. Noting normal activities – dressing, eating, medications, symptom checking. Also finding what times he felt best and when he was tired. The things he seemed to get the most enjoyment from.

The benefits to the caregiver

I’m very glad I took the time to do this little exercise. I learned a lot about Dad that day. I saw his feeling of accomplishment in doing little things. His determination to do as much as possible for himself shone through his efforts. His acceptance of his limitations as well as the frustration they could bring became clearer. The times he grew tired, the lonely times, the eagerness to help, the slow pace he needed to keep. His frustration at the much faster pace I tried to keep.

This new perspective on Dad’s day helped me adjust my caregiving. Looking at things from Dad’s perspective encouraged me to change my pace when I was with him. I learned the best times to add in new things he needed to do. I also learned what things he found stressful. Scheduling visits from support staff, the best time for his grandchildren and great grandchildren to visit – all became easier. We made some changes to the routine that made the day go easier for both of us.

The benefits for the respite caregiver

That simple list turned out to be an invaluable resource in another way. Now other people were able to understand Dad’s day. Most helpful, was that now I could leave Dad confident that his interim caregiver would know how to maintain a normal day for him. What an easy to way make the day more comfortable for everyone.

Creating the daily routine schedule

All you need to create a daily routine schedule is some note paper. Note each hour of the day. Then list what happens during that time. Some hours are very busy and some are quiet. The important thing is to be descriptive enough so that someone else can follow your notes. Then be sure to share your schedule with anyone that it will help.

What is your loved one’s typical day like?

Nearly everyone is familiar with 911 – the three-digit number you call for emergency help. Also familiar is 411. That’s the local and long distance telephone directory service number for the United States and Canada. When you need a phone number, you can call 411 for help.

Not as familiar is 211. “211″ is an easy to remember telephone number that connects callers to information about critical health and human services available in their community. This service started in 2000 when the Federal Communications Commission set this number aside as an easy-to-remember and universally recognizable number that would help individuals and families in need connect with the appropriate help organizations and government agencies in their local communities.

How 211 works

211 works somewhat like 911. The local telephone company routes calls to 211 to a local or regional calling center. The 211 center is staffed by trained referral specialists. When you call 211, a specialist will ask you questions to learn your specific needs. The specialist then checks databases that list resources available from private and public health and human service agencies. They match your needs to available resources close to where you live, and will link or refer you directly to an agency or organization that can help.

Types of Referrals Offered by 211

The Federal Trade Commission offers the following list of information services available through 211:

• Basic Human Needs Resources – including food and clothing banks, shelters, rent assistance, and utility assistance.
• Physical and Mental Health Resources – including health insurance programs, Medicaid and Medicare, maternal health resources, health insurance programs for children, medical information lines, crisis intervention services, support groups, counseling, and drug and alcohol intervention and rehabilitation.
• Work Support – including financial assistance, job training, transportation assistance, and education programs.
• Support for Older Americans and Persons with Disabilities – including adult day care, community meals, respite care, home health care, transportation, caregiver support groups, and homemaker services.
• Children, Youth, and Family Support – including child care, after school programs, educational programs for low-income families, family resource centers, summer camps and recreation programs, mentoring, tutoring, and protective services.
• Emergency Suicide Prevention – referral to suicide prevention help organizations. Callers can also dial the following National Suicide Prevention Hotline numbers operated by the Substance Abuse and Mental Health Services Administration of the Department of Health and Human Services:
  • 1-800-SUICIDE (1-800-784-2433)
  • 1-888-SUICIDE (1-888-784-2433)
  • 1-877-SUICIDA (1-877-784-2432) (Spanish).

While services that are offered through 211 vary from community to community, 21-1 provides callers with information about, and referrals to, human services for every day needs and in times of crisis. Currently, active 211 systems cover all or part of 39 states, Washington, D.C., and Puerto Rico. You can learn if 211 services are offered in your area and obtain more information, by visiting www.211.org.

Finding local sources of help can be a real challenge for caregivers. A good first place to start is to call 211. By simply dialing 211, you can be referred, and sometimes connected, to appropriate agencies and community organizations.

I recently learned that April 16th is NHDD. NHDD is National Healthcare Decisions Day. The goal of NHDD is to encourage individuals and families to discuss healthcare decision-making and advance planning. It is an opportunity to explore how your loved one feels about end of life care. It is a reminder to us caregivers to talk with our loved ones about their treatment wishes. And it is a timely reminder that we need to ensure their wishes are followed by creating an advanced directive and having someone appointed to speak for them when they cannot.

What are advanced directives?

Advanced directives are written documents that have two important purposes:

• The first purpose is to let health care professionals know what kind of treatments your loved one wants. Some of the questions advanced directive can answer are:
• Would you want to be put on a mechanical ventilator for a long time or is that not acceptable?
• Would you want to prevent being placed on a feeding tube indefinitely?
• Would you want to have CPR attempted regardless of the outcome or would you prefer a natural death?
• The second purpose is to name someone specific to make decisions for your loved one when they cannot make them for yourself. This is called naming a healthcare representative or healthcare proxy. The advantage for you, the caregiver, of being the healthcare representative is that you can get information about your loved one’s medical condition and treatment. Without this important document, you might be denied information under healthcare privacy laws.

Advanced directives make a difference

I am very grateful that Dad had advanced directives – a living will and healthcare proxy. He had these documents drawn up when he created his will. Dad’s living will gave his doctors instructions on how he wanted to be cared for when he could not make decisions for himself. During those times he was too ill to direct his care, it guided the treatment he received. Dad and I discussed his wishes on a number of occasions. Still, I relied on his living will to help me during times of critical illness. And I relied on Dad’s healthcare proxy constantly. That document allowed me to get all his medical information and ensured that I was a pivotal member of his care team.

Making choices

There are resources available to help you understand your options and create an advanced directive. You’ll find all the resources listed below at The National Healthcare Decisions Day website along with many others as well.

Resources for making decisions

There are resources available to help you discuss future healthcare wishes and make decisions:

• AARP: End-of-Life Planning
• Advance Care Planning Day Initiative: Advance Care Planning
• Aging with Dignity: Five Wishes
• American Bar Association: Tool kit for Health Care Advance Planning
• American Health Lawyers Association:Loving Conversations (video) on Advance Care Planning
• American Hospital Association: Put It In Writing

Creating an advanced directive

There are a numbers of ways to create an advanced directive. Certainly, an attorney can draw one up for you. But it isn’t necessary to have an attorney created the advanced directive. You can create one yourself. Here a few options to consider:

• Aging with Dignity
  An excellent resource and one that makes it easy to create an advanced directive is Five Wishes. The Five Wishes document helps individuals express care options and preferences. The advance directive meets the legal requirements in most states and is available in 20 languages for a nominal fee. Order online or call 850.681.2010.
• Caring Connections
  Each state has created specific advanced directives that meet the state’s specific legal requirements. Caring Connections offers free, state-specific advance directives for all 50 states and DC that meet the legal requirements for each state. Download individual copies for free or call 800.658.8898 to have a copy mailed to you.
• Center for Practical Bioethics

  Caring Conversations is a workbook to help individuals and families communicate with each other about their healthcare preferences and contains advance directive documents. These forms are valid in every state when they are notarized and signed by two witnesses. Download for free or call 800.344.3829 to order.

If your loved one is hospitalized, the hospital may be able to help you. Many hospitals have programs that have a trained social worker or other professional available to discuss living wills and help you create a valid document.

Using an advanced directive

Advanced directives aren’t meant to be hidden away in a safety deposit box. They are living, working documents. Sharing copies with your loved one’s doctors, especially their primary care doctor, can help the doctor understand and follow your loved one’s choices. The person or persons named as healthcare representatives should have copies so that they care share them when necessary.

It’s important to have the advanced directive readily available so that you can find it quickly in an emergency. I recommend keeping copies as part of your emergency information kit.

Thoughts for the caregiver

As your loved one’s caregiver, do you understand their wishes about treatment? Even though they may have an advanced directive, it helps to talk to your loved one about these issues. The advanced directive will tell you what they wish. But it won’t tell you why they made these choices and what their true feelings are. You will be truly grateful to have these conversations as your guide during times of crisis.

Remember, this is not about what you think is best for the person. You need to base decisions that you make for your loved one’s well being on what your loved one wants, not what you would want for yourself. It may be the hardest thing you ever have to do for your loved one. Yet it’s the greatest act of love and fulfillment of trust you can make.

Dad had a way of tracking phone numbers. He would make a list on the computer and print it out. Then he would put the list by each phone in the house. Whenever he needed a number, he just checked his list. It worked well for him. He took special delight when I would mention I needed a particular number. Put it on the list he would say.

This was a bit old fashioned. But then, Dad never got the knack of loading phone numbers into his cell phone. Today, we keep all our important numbers in our cell phone. I don’t know about you, but for me, having a number on speed dial means that I don’t have to remember it. When someone asks for a particular number, though, I fumble around with my phone until I locate it. It works, but Dad would say, it is easier to find the phone number on the list.

When it comes to having emergency numbers at your fingertips when you need them, a cell phone can a lifesaver. A simple speed dial and you reach your emergency contact immediately. So, I wonder, does my cell phone make that printed list obsolete?

Keeping a paper list

It’s possible to keep all your emergency numbers on your cell phone. You will be able to get help quickly, especially if you have the numbers on speed dial. However, Dad was right too. It is a good idea to have your emergency phone number list written out. Emergencies seem to happen at the most inconvenient times. You may not be home and someone else will need the information. Your phone may not work. You may need to delegate making an emergency call to someone else so that you can help your loved one. So what numbers should be on my emergency list?

Numbers for the emergency phone number list

Here’s a list of numbers to put on your emergency phone number list:

• 911 – This is the number for medical emergency services in most areas. However, some areas use a different number. Start your list with this number.
• Poison Control Center – 800- 222-1222 A medical professional trained to answer questions about poisons will answer a call to this number. As of now, this service is still in service.
• Numbers for emergency responders – The number for all emergency responders in your area may be 911. It is still a good idea to list these numbers separately. That way, you won’t be confused about the number to call when time is critical.
• Ambulance
• Fire Department
• Police Department
• Hospital name and phone number – Having the name and number of the hospital you use will give you quick contact information when a loved one is in the hospital.
• Doctor name and phone number – Have the name and number of the primary doctor for each family member
• Hospice – If your love one is on hospice, this number should be where you can find it immediately.
• Gas Company and Electric Company – Keeping the electric company’s number on your list as well as the gas company’s number can be lifesaving during an emergency. You may need to add you account number to the list to get emergency service.
• Emergency contact information and phone number – You should have the names and phone numbers of people who can help in case of emergency. Also include information about the emergency contact’s relationship to you or your loved one.
• Additional important numbers – Include any other important numbers that might be needed in an emergency. Be sure to identify whom the number is for.

Creating your emergency list is easy. You’ll find a free form that you can fill out on your computer here on the At My Fingertips website.

Putting a copy of the list by each phone in your home is a great idea. Since most folks keep phone numbers on the refrigerator, having a phone number there makes sense as well. Additionally, first responders are trained to look on the refrigerator for helpful information.

Have you found other ways to manage emergency phone numbers? Please let me know what works best for you.