Friday, 16 November 2018

ADVICE FOR CAREGIVERS FROM CAREGIVERS

During this National Caregivers Month of 2018, it's important to hear directly from YOU, caregivers on the front lines of love and commitment. Here are some tips compiled by the information and support program, Embracing Carers.



THE QUESTION:
How can you provide the best possible care for an aging parent or a loved one with a serious illness, while also making sure YOUR OWN health and stress don’t fall by the wayside?   This problem is increasingly prevalent as more of America’s workforce serves double duty as caregivers for aging parents, spouses, or children with special needs. In the United States, an estimated 65.7 million unpaid family caregivers provide care for someone who is ill, disabled, or aged. These caregivers spend an average of 24 hours per week providing unpaid family care, and 1 in 4 caregivers invest over 40 hours each week.

With that kind of schedule, who has time for self-care?

As a result, many family caregivers feel stretched for time and resources, so they sacrifice their own health in order to care for those who need it. They reduce or quit their exercise regimens, eat poorly, sleep irregularly, cancel their own doctors’ appointments, bottle up their feelings, and skip the social events that help them emotionally recharge.

To help caregivers better navigate these challenges, Embracing Carers™ asked dedicated caregivers from across the U.S. for their top self-care tips. Here is some advice they shared:


Dyan Alexander (Annapolis, MD)
“Realize that you cannot be all things to all people, and acknowledge that you should reach out for help when (and even before) you need it. Most importantly, don’t let guilt take seed. You are doing the absolute best you can, which is exactly what your loved one needs.” 

Dave DiBella (Pittsburgh, PA)
“Choose your battles. Being fitness and nutrition-minded, it was very difficult to not be concerned about my mother’s daily nutrition. But early into my full-time caregiving role, I realized that I wasn’t going to save my 92-year old mother from her inevitable passing by insisting that she eat more vegetables. Once I “let go,” it was really enjoyable to just ensure that she was getting foods and treats she really enjoyed. Obviously, everyone’s circumstances are different, but my advice would be to be more discerning about what really matters most.” — Dave cared for his mother around the clock in her final months of her battle with Alzheimer’s

Kristen Lasko (Washington, D.C.)
“Accept help (which can be hard to do)! As a caregiver, you will need the help of others. Even if you think others won't do something as well as you could, or it's something that you enjoy doing, sometimes you have to let others into your home, your to-do-list, and your life to help you to stay afloat.” — Kristen cares full-time for her son Max, who has Spinal Muscular Atrophy, a life-threatening genetic disease that renders Max unable to walk, eat, breath, or speak on his own.

Jackie Schwabe (Milwaukee, MN)
"Ask for help.  You are the best caregiver for your loved one, but you are not the only caregiver.  This is a marathon, not a sprint.  Ask for help so you can continue the journey." Jackie Schwabe

Jon Strum (Los Angeles, CA) 
"My one piece of advice is very similar to what you hear every time you listen to the pre-flight safety speech on a plane. "Make sure your own mask is secured, and then help the other person. In other words: Make sure you're taking care of the caregiver, so that you'll be there for your loved one." 

Dick Akers (The Villages, FL)
“Follow through on your dreams, even if it means a little extra planning.” — Dick serves as the primary caregiver for his wife Ellen, who was diagnosed with early-onset Alzheimer’s shortly after their retirement. Dick and Ellen recently took their “trip of a lifetime” together — a cruise through Europe — with help of dozens of caring and attentive airline and cruise ship employees, tour guides, and fellow passengers.

Eboni Green (Omaha, NE)
"Fill your cup! Recently the saying “you can’t serve from an empty cup” has taken on new meaning to me in my life as a caregiver. So that rather than my goal as a caregiver being to prevent from serving from an empty cup, I consider that my cup must be overflowing so that I serve from an overflowing cup. Now this may sound a little selfish, but my advice is to make sure your cup is overflowing before taking on anything additional. This way you avoid the likelihood that you will burn out. In this analogy the full cup represents the practice of self-care while caregiving. Ways that you may fill your cup might include doing the things that you love. For example, spending time with family, reading a book, taking a hot bath, and participating in work or a career that you find meaningful might fill your cup. The final takeaway is that you mustn’t commit to taking on any additional duties or task unless you have overflow from your cup that can now be dedicated to another interest. If your cup isn’t overflowing the answer to taking on any additional tasks must be “no” as your focus should go back to making sure you are spending time to do the things that fill your cup."

Cathy Clarke (Niles, IL)
 The one thing I have learned in this journey, is that if I didn't find a way to take care of myself and get the rest and time away, I was exhausted and not only unable to properly take care of him, but my work suffered as well. Even if you do not have an outside job, caregiving touches every aspect of your life, so the above still holds true. That is the #1 priority for caregivers - getting the proper rest for themselves and time away to recharge their batteries. I found it to be a very difficult thing to arrange, especially with few monetary resources and no help from government agencies at all. This is one of the challenges for those with resources that are scant, but just enough that is can still disqualify them because they are so close to the line; many fall through the cracks, like we did, and are left to cope alone. I wish this could be addressed, as the very poor can get help, but those who aren't quite poor enough cannot get anything at all, yet they have few resources of their own.


About EMBRACING CARERS
Launched in 2017, Embracing Carers is a global initiative led by Merck KGaA, Darmstadt, Germany, in collaboration with leading caregiver organizations around the world to increase awareness and discussion about the often-overlooked needs of caregivers. It is understood that caregivers play a crucial role in the lives of patients. What is less understood are caregivers’ needs for resources and support focused on improving their own health and well-being.  And while significant progress has been made in certain areas/geographies, serious gaps remain. Embracing Carers™ addresses this by highlighting the unmet needs of caregivers’ within the US and around the world; by empowering caregivers to advocate for their own health and wellbeing, and by driving a call to action for support of caregivers including support within healthcare systems.  

About EMD Serono
EMD Serono - the biopharmaceutical business of Merck KGaA, Darmstadt, Germany, in the U.S. and Canada – is engaged in the discovery, research and development of medicines for patients with difficult to treat diseases. The business is committed to transforming lives by developing and delivering meaningful solutions that help address the therapeutic and support needs of individual patients. Building on a proven legacy and deep expertise in neurology, fertility and endocrinology, EMD Serono is developing potential new oncology and immuno-oncology medicines while continuing to explore potential therapeutic options for diseases such as psoriasis, lupus and multiple sclerosis. Today, the business has approximately 1,300 employees around the country with commercial, clinical and research operations based in the company's home state of Massachusetts.

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