Category Archives: Caregiving

The ABCs of Caregiving

by Maryanne Curran

New Caregiver

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 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.

Today’s Caregiver Newsletter

PA Link Lebanon County Partner Meeting 2-3-23 at 8:30 am

Join our “Spotlight presenters” from The Arc of Lancaster Lebanon Maureen Westcott, Executive Director and Amy Fisher, Advocacy and Family Support

Via zoom on Feb. 3, 2023 at 8:30.

We will be inviting partners from Lebanon and Lancaster to participate.
They will provide an overview on The Arc of Lancaster Lebanon and a presentation for Life Course Tools.The Arc’s Facing Forward Program works with families of transition aged students (14-21) using the Charting the LifeCourse Framework to develop a vision for what a good life looks like and identify the path to get there by discussing goal setting, employment, independent living, waiver funding, natural and paid supports, social security, guardianship, financial planning, safety and security, and discussions among families about their successes and challenges. 
Nicki Habecker is inviting you to a scheduled Zoom meeting.

Topic: PA Link ADRC Lebanon County Monthly Partner Meeting

Time: Feb 3, 2023 08:30 AM Eastern Time (US and Canada)    

Every month on the First Fri, until Feb 3, 2023, 1 occurrence(s)    Feb 3, 2023 08:30 AMPlease download and import the following iCalendar (.ics) files to your calendar system.Monthly:

Join Zoom Meeting

Meeting ID: 848 9026 5815

Passcode: LINK

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Making A Difference of Lebanon County

Developing a Strong IEP Training

Abilities in Motion Announces New Location

  Abilities in Motion Announces New Location in Northeast Reading

  Abilities in Motion (AIM) is thrilled to announce the purchase of a new headquarters located at 755 Hiesters Lane in Northeast Reading, Pennsylvania. On the company’s future home, AIM’s Executive Director, Stephanie Quigley said, “We are thrilled to be moving to an area of the city where we can expand operations and bring new, innovative resources to the community. Our focus will be on making cutting-edge technology available to people with disabilities.” The new building will allow us to expand our services in new and innovative ways. Our new, fully accessible building will feature substantially greater space for onsite programming, future expansion, and exciting community partnerships. Construction is planned to start next month with the goal of moving to the new facility in 2023.   This new location will also include a 2400-square-foot technology space for persons with disabilities to engage and experiment with computers, smart home devices, adaptive technology, home gaming consoles, virtual reality systems, STEM opportunities and more. Our new building will also offer a café space to showcase state-of-the-art accessible technology options in the kitchen.     Our aspirations for this next chapter at AIM are rooted in our continuous commitment and service to the disability community. We will continue to provide more information about our plans for expansion and relocation throughout the transition.   For more information, please stay tuned to our social channels!    

Comment on the National Strategy to Support Family Caregivers

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

Consumer Voice – quality long term care

View this message on our website.The Voice logoSHARE:  November 1, 2022

In this Issue:Staffing in Nursing Homes and How It Affects Residents
See the Agenda for the Virtual Consumer Voice Conference
Save the Date: Virtual Office Hour on Visitation During the Holidays

Inadequate Staffing in Nursing Homes and How It Affects Residents

Chronic understaffing has been a serious problem in nursing homes for decades and has been exacerbated by the COVID-19 pandemic. While there are numerous factors contributing to this problem, one major cause is the lack of adequate minimum staffing standards at both the state and federal levels.  Consumer Voice has continued to focus on staffing in nursing homes as an advocacy priority.Report: High Staff Turnover: A Job Quality Crisis in Nursing Homes – Our report sheds light on how nursing homes with higher staff turnover perform poorly in a variety of measures. It examines how staff turnover harms residents, the causes of high turnover, and offers solutions to this endemic problem.Last Spring, the Centers for Medicare & Medicaid Services (CMS) published a Notice of Proposed Rule Making (NPRM) that included requests for information regarding the implementation of a minimum staffing standard in nursing homes. Minimum standards ensure that staffing will not fall to a level that would be harmful to residents. Consumer Voice submitted comments to CMS strongly supporting the proposal for a minimum staffing standard.  CMS stated it planned to propose a minimum staffing standard within one year.Report: Staffing Matters – Our report looked at federal data regarding nursing home staffing levels and how it affects outcomes for residents. It found that nursing homes with higher staffing levels have higher overall, health inspection, and staffing ratings. Plus, the data also revealed that as staffing levels decrease in nursing homes, the instances of resident abuse rise.
Learn more about our work around staffing in nursing homes on our website.

See the Agenda for the Virtual Consumer Voice Conference

Join us online December 8-9, 2022 for the virtual portion of the Consumer Voice Conference!Listen to key experts discuss the latest policy updates; Hear the voice of long-term care consumers; Connect with advocates nationwide and learn about best practices;Gain skills relevant to your work; and Get revitalized and equipped with new tools to put your systems and individual advocacy into action!2022 Virtual Conference AgendaPlus, view select recorded sessions from the in-person conference. Register for the virtual conference to participate in the live event and to have access to session recordings and materials for 60 days.

Save the Date: Virtual Office Hour on Visitation During the Holidays

The National Ombudsman Resource Center (NORC) is hosting a virtual open office hour the last Wednesday of each month at 2:00 pm ET for long-term care Ombudsmen representatives. The next call is Wednesday, November 30th. This is an opportunity to ask questions, share information, and have open conversations with your peers and NORC staff.

The focus of the November call will be visitation in nursing homes during the holidays. These Zoom calls do not include a structured presentation and are open to all State Ombudsmen and their program representatives. These calls will not be recorded and do not require registration. Use this link to join:

Berks County: Win a Stairlift!

Penn Cares Upcoming Webinar