Caregiving: A life on hold?

July 29, 2021 | Caregiver Stories, Caregiver Support Initiative, Caregivers in the Workforce, Featured

Caregiving: a life on hold?

Caregiving can be rewarding and challenging.

When an individual is diagnosed with a progressive neurological disease like Alzheimer’s, Parkinson’s, or multiple sclerosis, it’s staggering, not only for the patient, but also for their family and friends. Many do not know where to start or how to move forward. Caregivers need all the extra support they can get so they can provide better care.

Recognizing the impact these impossibly difficult diseases have on families and the community, the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, NV provides no-cost educational and support programs nationwide. We believe education and awareness brings power and the ability to more readily cope. We involve the community to raise consciousness and enhance support for patients, as well as caregivers.

Most of the diseases we treat at our clinic have an eight to twenty-year trajectory. That is a long time to try and put a life on hold. We recommend patients and families stay as active as possible for as long as possible. As devastating as it can be to hear the diagnosis, it’s important to persevere and keep living to the best of one’s ability. Continue to do the things you’ve always loved individually and with your care recipient. Practice the principles of wellness at any age or state of the illness – eat a healthy diet, drink water, incorporate physical activity into your routine, visit with family and friends, minimize the risk of falls, implement a bedtime ritual to prepare for sleep, and finally, think about ways to reduce daily stress. 

After diagnosis, the first, best steps are to put one’s legal house and a financial plan in order. Consult with a lawyer. If you haven’t already, put advanced directives into place. These might include a living will, durable power of attorney for health care and financial matters, and Professional Orders for Life Sustaining Treatment (POLST). Next, learn as much about the disease you are confronting as possible. This will help you anticipate what is coming and develop a plan to pro-actively manage the obstacles ahead. Build a care team around you. Include medical professionals, physical, occupational and speech therapists, disease specific resource groups, family members, neighbors, friends, clergy and other people in your faith communities. When someone asks if they can help, let them. Have a list of things others can do to support day to day needs. If no one is asking, reach out and request help. If you are caregiving, it is vital that you are in tune with yourself. Listen to your body and your heart and make sure your needs are also being met.

Ongoing medical care is an important component of dealing with a chronic condition for the patient. However, caregivers must also be mindful to not neglect their own personal care. Make those annual check-up appointments. Follow through with recommended tests. Join a support group. Take a joy break. Sign up for respite. Get your hair done. Schedule a manicure/pedicure. Ultimately, love yourself so you can love another. Caregiving is a big responsibility. You want to make sure you are not neglecting yourself in the process.

Finally, learn about and take advantage of caregiver support services. Cleveland Clinic has several art, therapy, exercise, education and support programs available nationwide. All are free and open to the public. As is the case with most organizations, since COVID-19 reared its ugly head, our programs have migrated to virtual platforms. This has actually become beneficial as we are no longer bound by geography. We are able to provide services far and wide.

Our programs include a weekly lunch & learn livestream covering topics related to the diseases we treat, healthy aging, or community resources, featuring doctors, nurse practitioners, and therapists, as well as community leaders and other professionals. We provide three art programs. Mind in Design – an art making program where materials and supplies are sent to each household prior to meeting in a zoom room for an art making session; Conversations to Remember – an art discussion group where select art pieces drive the conversation relating back to each person’s individual story; and The Learning Arts – virtual tours to various museums, gardens, zoos and science centers across North America.

We have both an onsite library and e-library with extensive resources designed to support and inform patients and caregivers. Visit our e-library at www.keepmemoryalive.org. You will find selections under the caregiver resource tab. Email louruvolibrary@ccf.org to obtain a patron number.

Several evidenced-based caregiver support workshops are presented multiple times throughout the year. They include Powerful Tools for Caregivers, Improv for Care, Managing MS, and Dealing with Dementia.
These caregiving tools are helpful to have, especially for first-time caregivers.

Numerous support groups are available such as caring for a person with memory loss, Lewy Body Disease, FTD, PPA, Parkinson’s, PSP, Huntington’s, and multiple sclerosis.

Music Therapy is offered daily, and Rhythmic Reminiscence – a Music and Physical Therapy collaborative meets once a week, as does Yoga for Parkinson’s and Yoga for MS.

Options are numerous. We encourage you to try one or more. If you are interested in participating, or would like more specific information or to be added to our monthly newsletter, please call the education line 702.271.9563 or email louruvosocialserv@ccf.org

Caregiving and providing support to a loved one with a progressive neurological condition can be rewarding and challenging. To be successful, one must be prepared to learn new things, adapt to changes, plan for the short and long term and expect the unexpected. Trust yourself, believe in yourself and remind yourself every day that you are doing the best you can in the moment. When you feel like you’ve failed, forgive yourself and carry on. Remember to carve out time to pursue your own interests and passions. Hand the care baton to others on your care team as often as possible. And finally, let the language of love direct your thoughts, words and actions toward your care receiver, but mostly toward yourself.

For more information on Alzheimer’s Disease and Dementia, click here or call the Community Foundation at 775-333-5499.

By Verla Niebuhr

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