“What are your goals?” This is a question we ask all patients who are in our care. What can we do for them? What do they want to achieve? For our patient Fanny, her goal seemed impossible. But at JourneyCare, we never turn a patient away and we always strive to find a way to make their goals happen - even if it takes some creative thinking.
Often-ignored but totally necessary, self-care is any action or behavior that helps us avoid triggering health problems and benefits us by improving our mental and physical health through better self-esteem, less stress and overall well-being. These behaviors help provide balance in an increasingly over-stimulating world. Self-care makes up an essential part of a healthy lifestyle that keeps us healthy, happy, and more in-tune with our minds and bodies.
Experts suggest we neglect self-care because it can be tough to make healthy changes and manage stress in better ways. Self-care is also sometimes associated with selfishness and lazy, over-indulgent behavior. This might make us feel guilty for thinking we need to take a break from our lives to do something that, simply put, makes us feel better.
I first met Robin, a 53-year-old ALS (amyotrophic lateral sclerosis) patient, when JourneyCare began caring for her about two years ago. I was welcomed in Robin’s home to make weekly visits. I instantly hit it off with Robin and always look forward to my weekly visits with her.
One of the highlights of my career as a Massage Therapist and member of JourneyCare's Integrative Therapies team was also the most challenging of all. My husband and love of my life, Peter, was the patient, unfortunately, at the young age of 64. It tested all my strength, boundaries, love and belief in God and this world.
Peter inspired me to become a massage therapist and always supported and loved therapeutic massages, which he always insisted I do to practice on him (in the beginning) and then after that because it helped him so much.
"When we are no longer able to change a situation, we are challenged to change ourselves." - Viktor Frankel
My husband Victor Morris and I have years of experience working in special education, community mental health, and wellness. However, most of our experience on the topic of understanding caregiver stress comes from personal experiences. Early in life, we both witnessed loved ones in caregiver roles as Vic's mother was seriously ill when he was in grade school, and my sister was born with medical issues and developmental disabilities. Those early experiences were profound and made us who we are today. But our caregiver experiences didn't end there, and we both pursued professions which sometimes could tax us and deplete our energies.
We understand very well that parenting (especially children with special needs), taking care of ailing loved ones or working in care giving professions can sometimes cause us to forget our own self-care.
I’ve been employed as a Certified Nursing Assistant (CNA) for the past 25 years. I never thought I would work as a CNA for this long, but when you have passion for what you do, it’s easy to find comfort in your work. It gives me great pleasure to serve the people within my community. If I can put a smile on someone’s face each day, that makes my life worth living.
But at times, there are occasions when being a caregiver can be stressful. To reduce stress when caring for others, I first take the time to take care of my own well-being.
Caregiving in itself can be difficult. Ones desire to help, nurture and support a loved one at end of life is daunting. Most of the time, caregivers have made a decision to care either by desire, or necessity. In any case, unless they care for themselves, there is little they can do for their loved one.
While the death of a loved one is one of life’s most difficult times, the holidays can compound our sense of loss and isolation. When we're experiencing the pain of grief, the last thing we want to do is participate in any kind of holiday celebration. We want the pain to end, and we can’t imagine being around others at a time that is supposed to be full of joy when we are so burdened with sorrow.
This is a normal way to feel, but since we can’t cut out the calendar from late October through early Januaryof the next year, it might be helpful to modify our plans, and most especially to take good care of ourselves.
Consider the following suggestions:
When I began home hospice with JourneyCare a year ago, I did not expect I had much time left due to my end-stage COPD. One of my top concerns was my pitbull, Coal. I rescued her from a shelter as a six-month-old puppy, and she has been my constant companion for the last eight years. I hated the idea of having to give her up due to my illness, so I hired a dog walker. (Luckily the dog walker fell in love with Coal and agreed to adopt her when I am no longer here.)
In my family of origin, I saw illness from an early age. My sister is developmentally challenged and she also has severe epilepsy. My father was diagnosed with Parkinson’s disease when I was in my early 20s. This was a prolonged illness that took its toll over the last 20 years of his life. My whole life I witnessed my mother as the caregiver for my sister, and then later for my father. After my father passed, my husband and I found an excellent group home for my sister. We did this in hopes to give my mother a much-needed break from the role of caregiver, and to allow my sister to live as independently as she possibly could. Finally, I would have my mother back as her relaxed and fun-loving self. Finally, she would be free to have more enjoyment and freedom in her life!
Something unexpected occurred, however.