by Maryanne Curran

Throughout our lives, we each perform a variety of different roles.  For me, I have been a daughter, sister, student, sales clerk, secretary, coach, and a writer.  The one role I thought I would never assume is now the main focus of my life – caregiver

My journey as a caregiver began in 2003.  My mother was diagnosed with a rare neurological disease.  Her health slowly deteriorated.  As it did, I learned more and more about how to properly and lovingly care for her.

When she passed away in 2008, I thought my caregiving duties were over.  But the Universe said, “No.” My 83-year-old father got hit with one health issue after another and again I donned my caregiver hat.  Because of this hands-on experience, I feel confident in claiming the title of Professional Family Caregiver.

If you’re facing the new role of caregiver, here are some tips to help you succeed in your new position.  While many of these tips pertain to caring for a senior citizen, they can be used for other family members as well.

Ask.  Admitting that you need help caring for your parent is hard.  If you are the primary caregiver, ask other family members to contribute some time.  Don’t take “No” for an answer.  Everyone is busy.  But being a caregiver for an ill person is more than one person can handle.  All family members need to pitch in where they can.

Banking.   Visit the bank where your parent does his or her banking.  Have your name added to their bank accounts so you may access funds if they are not able to.  Be sure to check with a financial advisor about any tax consequences for you.

Community.  There are many resources in your community.  Identify them and use them.  Neighbors, friends, and church members are often eager to help, but don’t know what’s needed.  In many towns, Meals on Wheels is available to deliver a nutritional meal for your parent.

Delegate.  As a caregiver, you may think that you have to do everything.  Delegate activities of lesser importance to others.  It will give you more free time to deal with the important healthcare issues.

Emotions.  Caregiving is an emotional ride. There will be days of anger, depression, loneliness, anxiety, and more.  These feelings are normal given the circumstances.  To balance the darker days, there will also be days of laughter, love, and joy.  Relish these days.

Forgiveness.  In the daily stress of caregiving, you’ll have your share of difficult days.  Forgive yourself when you’re having a bad day.  No one is perfect.  Every sunrise marks a new day.  Wipe the slate clean and start your day anew.

Government.  There are a multitude of agencies that can be a great resource for caregivers.  Check http://www.eldercare.gov to find an agency near you.  If your town has a senior center, that’s also a great place to start.  Some states participate in programs that provide a monetary stipend to a family member who is caring for a senior who is ill.

Home Health Aides.  A good home health aide can be a blessing.  If using an agency, make sure they do a background check on new aides.  Make a list of things you want the aides to do.  You may have many different aides who cover different shifts.  Writing a list of their duties will make it easier to transition from one aide to the next.

Insurance.  Understand what medical insurance your parent has.  Find out what benefits he/she is entitled to and what will be the out-of-pocket expenses.Join.  A support group is a place where you can share and vent.  If you can’t drive to one, there are many online groups.  The group members know what you’re going through and can be a great sounding board.

Knowledge.  They say that knowledge is power.  This is never truer then when dealing with a health crisis.  Learn as much as you can about the disease your loved one is facing.  It will prepare you and teach you what symptoms to watch for.  If it’s a progressive illness, you can learn to identify the stages of the illness to assist with your caregiving.

Legal.  Make sure all your parent’s legal documents are up-to-date.  A will, power of attorney, and health care proxy are a must.  Consult an attorney to prepare these documents.

Medications.  You will need to become an expert about the various medications your parent is prescribed.  Ask for a 90-day supply of medication.  It’s often more cost-effective and will save you some trips to the pharmacy. Check with the pharmacist to ensure that any new prescriptions will not affect existing medications.

Nutrition.  Illness can often change the eating habits of both the person who is ill and his or her caregiver.  Make sure you both have healthy, nutritional meals during this journey.

Organize.  If you were never an organized person, it’s a skill you’ll need to master quickly. As a caregiver, you’ll multitask more than you ever thought you could.  The caregiving tasks may seem overwhelming.  Just take one at a time and you’ll succeed.

Patience.  They say that patience is a virtue.  As a caregiver, this is a necessary attribute to your skill set.  Everything you want to do will take more time than you think.  Be patient.

Question.  There are no dumb questions.  Don’t be afraid to ask doctors, nurses, and other medical personnel any question you have about the health of your parent.  Remember, they work for you.

Respite.  If your family member is sick, they become the center of your family’s world.  It’s vital that you find time for yourself and get a break from your role as a caregiver.  No one works 24 hours a day.  Make sure to schedule some time to take a walk, get a massage, or even go to a movie.

Spirituality.  Connect to your spiritual side.  Maintaining your faith or finding the faith that you lost is a significant coping mechanism on this caregiving journey.  Spiritual leaders will often make visits to your home to provide spiritual guidance to both you and your loved one.

Talk.  Talk about your feelings about being a caregiver to someone you trust.  Talk to your loved one about their feelings about their health.  Talking makes any relationship a closer and more loving one.

Understanding.  As a caregiver, you’ll be called upon to provide a deep level of understanding to your loved one.  You’ll need to evaluate each situation to determine what your parent needs.  Are they looking for a shoulder to cry on?  Are they in pain?  Are they lonely?  Is it something more?  You’ll need to learn to understand the cues so you can help.

Visiting Nurses.  Visiting nurses are the unsung heroes of the healthcare industry.  They save you trips to the emergency room. They can treat and help diagnose a myriad of health problems.  They can get through to a doctor immediately. If needed, they are a link to hospice.

Wishes.  If your loved one is terminal, you must have “the talk” with them.  It’s not easy, but it’s absolutely necessary.  You must talk about what their final wishes are including funeral arrangements, do not resuscitate instructions or quality of life issues.

eXercise.  Yes, we’re cheating with the spelling here, but it is the best example.  We all know the benefits of exercise.  As a caregiver, exercise is even more important.  You need to maintain your own health as well.  Exercise manages stress.

You.  While this is near the end of our list, YOU should be at the top.  You, as a caregiver, will be facing a whole new world of challenges.  That makes you a special and loving person.  You are providing help to someone who desperately needs it.  You rock!

Zeal.  Like anything done well, it requires a commitment to the project.  Caregiving is no different. Address your role as a caregiver with zeal.  Be an advocate for your loved one.

Comment period closes November 30.

The public comment period for the 2022 National Strategy to Support Family Caregivers will close at 11:59 PM on November 30, 2022. The Strategy, which was released on September 21, 2022, was developed jointly by the advisory councils established by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act, with extensive input from family caregivers, the people they support, and other stakeholders. 

The Strategy is intended to serve as a national roadmap to better recognize and support family and kinship caregivers of all ages, backgrounds, and caregiving situations. It includes nearly 350 actions the federal government will take to support family caregivers in the coming year and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers.

ACL leads implementation of the RAISE and SGRG Acts and facilitates the work of both advisory councils. ACL is requesting comments on: 

1. The most important topics/issues for the advisory councils to focus on moving forward; and 
2. Issues that were not covered by the initial strategy that should be addressed in future updates.

Comments can be submitted via an online form. Respondents have the option to comment on each individual component of the Strategy or provide comments about the Strategy as a whole.

For additional information on the Strategy, contact Greg Link.