With the increase in the number of stroke survivors (800k per year), it stands to reason there would be an increase in caregivers. Fifteen million survivors have received care in the past year.
Caregiving is complex and multifaceted. Without warning, one must shift immediately into a caregiver mode.
This can present a number of complications as well as benefits such as:
Time away from work begins the cycle.
Lack of health insurance support coverage for caregivers in America.
Worstell states, “The role of caregiver can be an emotionally taxing one, as you are faced with new demands you probably were never trained to provide. Many caregivers want to do the best job possible, and set unrealistic goals for what they can provide. This can add frustration, disappointment and over time and eventually risk burnout when you cannot meet that high standard.”
Proper outlook by the caregiver is vital. By viewing this new role as:
A challenge to be mastered.
Another way to get closer to your survivor-spouse/friend/family member..
A way to reach out to helpful resources.
An opportunity to speak about your feelings. This is a huge strain on you and the survivor.
A challenge to learn to be realistic about what you can/can’t do.
An opportunity to maintain balance and take care of yourself.
He summarizes his article by stating, “Embarking on your role as a caregiver for a family member, or dear friend, can be a rewarding experience that brings you two into a closer relationship. There will be complexities along the way, but finding ways to tap into the benefits this caregiver role provides can support a new phase in your journey together.”
If you wish to read the full article by Christian Worstell, here’s the link: click here.
I’m one of the lucky ones! My partner, Jane, has been a trooper through all of this! I will expound about this in a minute. The reason I said I was one of the lucky ones is because I’ve witnessed the opposite. I’ve observed caregivers, spouses, family and friends who are impatient with the survivor, disinterested, resentful about their “new role,” or borderline-abusive, and the list goes on, sadly. Everything mentioned in the article is true. I will now add my personal thoughts and experiences.
The “New Dance”
Overnight, our relationship drastically changed, without warning, without permission - as with all stroke survivors! One of us almost died, the other almost had a wreck of a time driving from her job in Tempe to reach me at Flagstaff Medical Center once she got the unnerving call from our neighbor.
As you may have read on my About page, we live in the cool part of Arizona near Flagstaff for 6 months in the summer; and 6 months during the cooler months in Tempe. I was alone at the cabin near Flag when my stroke occurred, and Jane was working in Tempe that week.
Fast forward, once I was home, our prior life was turned upside down. Grab bars were installed, rugs were removed, furniture rearranged, assistive devices ordered, diet restrictions implemented, house duties reassigned. I’d been the partner who (now retired who) ran all the errands, worked with our wonderful housekeeper (Ofelia) to coordinate cleaning duties, and arranged our social schedule. Jane worked long hours as a financial advisor, as well as being the primary cook. We each enjoyed our “work.”
Stress and worry replaced the “smooth operation” we’d become accustomed to. How to adjust, I wondered? How could I help us adjust in the state I was in? I felt helpless, especially since I’d been fiercely independent since I was born!
Coach Caregiver or Cheerleader?
This is a hurdle that needed to be addressed within the first 6 months. Prior to her career as a financial advisor, Jane was a women’s college basketball coach for 15 years; so, “coaching” was natural for her. However, I didn’t need another coach. I had plenty - therapists, doctors, etc. I realized what I needed was a cheerleader, not a coach. I knew where I needed to improve. I had neuro-trained therapists telling me that everyday. What I needed was a support-system, a cheerleader, at home. So we had a talk and worked it through. It’s not always easy to figure out what you need and don’t need, but it’s an important endeavor to maintain a healthy relationship with your significant other.
So, how do we do this new dance?!
Well, one of the first things we did was to discuss how we would manage each day so Jane wouldn’t be overburdened with home duties and work. Not surprisingly, her company provided as much time off as she needed. What a blessing!
Of course, Jane jumped right into it all - without complaint! Her German roots, and excellent upbringing are where she learned a strong work ethic from her parents on a farm in central Kansas, and have all contributed to her hard-working, positive attitude!
Knowing the additional duties and stress Jane would assume (helping me shower, dress, walk without falling, etc), we initially talked about the food issue. Although I knew Jane would continue those duties without complaint, I didn’t want her to have to grocery shop, then come home and cook; so I contacted Kathy, our friend and neighbor and asked if she’d be willing to coordinate the retired ladies in our complex meals to cook and deliver meals to us a few days per week? She enthusiastically agreed, and scheduled home-cooked meals prepared by a half-dozen neighbors who delivered them to us for a number of weeks! Priceless! And delicious meals!
We’ve been able to experience a number of benefits from this experience, but it hasn’t always been easy. (Click here to read an article on Managing the Emotional Impact) The day-to-day challenges can wear on you at times, and that’s when you need to remember to be grateful for all you have vs what you don’t have; and, this is where attitude and sense of humor must be resurrected from deep within!
The money issues we experienced involved the lack of common sense,
compassionate, adequate healthcare in our system in American system today that chooses profits over patient care. However, once I was eligible for Medicare, the road for coverage was much easier. Not perfect since they limit the number of therapy sessions "allowed;" but it's much better than the profit-driven insurance market! For instance, the vital need of survivors to purchase expensive devices in order to simply walk without falling are denied coverage for insane reasons, like they’re “experimental, overpriced, unnecessary.” All untrue, unkind, and unfair.
My personal opinion is two-fold:
1) I believe affordable, compassionate, comprehensive healthcare is a right, not a luxury.
2) The introduction of for-profit healthcare law in 1973 by President Richard Nixon (The Health Maintenance Organization Act of 1973) was the beginning of the end of the true meaning of caring in the medical community.
Greed overtook the humane treatment of medical patients.
Until 1973, healthcare was a nonprofit industry. What I don’t know is what the actual health of Americans were like during the years of nonprofit healthcare. However, having worked in a nonprofit in the past, I’m fairly certain the intent was probably the opposite of the current for-profit industry. I’m also fairly certain the prior nonprofit industry didn’t have highly paid lobbyists pushing their agenda in Congress, and contributing exorbitant amounts of money to political campaigns. Thank goodness President Obama was able to create and pass the Affordable Care Act (Obamacare) for the 28.2 million of Americans who were denied coverage due to the barbaric "pre-existing denial-of-coverage-rule" created by the insurance industry.
In summary, I’d like to share some lessons I’ve gleaned over these 4 years about managing “the dance” of maintaining our relationships. It’s a highly stressful situation on many levels; so, paying close attention to our marriages/relationships should be a prime focus, along with everything else.
A few ideas…
Keep the lines of communication open. Each person needs to be able to discuss her/his feelings.
If you’re unable to communicate, seek out a psychotherapist. You may need to take this step if you’re committed to your relationship; and devoted to reducing the stress that’s innate in this situation. It’s certainly worth the effort!
As the survivor, take time to find out what you need/don’t need from your partner. Ask your partner to do the same. Being clear about these needs will help provide clarity and aid in the smoother-running of your “dance,”
Ensure you each take care of yourselves to reduce your stress levels and ensure a happier couple. If one partner needs social interaction, make sure that happens on a regular basis: and, vice versa, if the other partner wants/needs solitude, that needs to happen as well.
My well wishes to all!
Have a most wonderful day everybody!