Caregiver can mean many things. For transplant patients, the caregiver can mean the difference between a successful transplant and a failed organ. Transplant is a complex process and when patients are sick, it’s difficult for them to navigate all their appointments, medications and self-care. The caregiver is there to assist with whatever the patient needs, sometimes daily or even hourly. Care giving can be a rewarding experience, knowing you’re helping someone you love become healthy and happy; but it can also be tiring, complicated and stressful.
In May we interviewed Steve Vorseth, a Licensed Master Social Worker in the transplant center at Mayo Clinic’s campus in Phoenix, who had great insight and advice for caregivers. In follow-up, we invited actual patients and caregivers to help us cover the topic from their perspective. We asked our support group and Facebook followers for their advice and here’s what they had to say:
Remember to care for yourself.
Caring for someone else can be all-consuming. You can become so involved in your loved one’s needs, you forget about your own. Some of our followers recommended yoga, exercise, getting outside the hospital for sunshine, and eating healthy as ways you can care for yourself while you are caring for your patient. Take the time so you can stay healthy, because you can’t be a good caregiver to someone else if you aren’t feeling well yourself.
Have a back-up person to help you (this was one of Steve’s tips too!).
Everyone needs a break – from their jobs, their families, friends and even from caregiving. Our support group suggested having someone around who can take over for you for a few hours or a day so you can get out and do what you enjoy. Take in a movie with a friend or sit in the park with a book. Do whatever you enjoy so you can be refreshed and renewed.
Don’t be afraid to ask questions.
Caregivers can only provide the best care when they know the details of their loved one’s situation. Attend medical appointments and ask questions of the care providers. Caregiving will be easier if you understand the patient’s medications, care plans and follow-up care requirements.
Even though it might be scary, know the worst case scenario.
We all hope for the best, but some of our followers say it’s a good idea to know what COULD happen in the event of a failed transplant, illness, or difficult recovery. Knowing what could happen could help you prepare for these undesirable circumstances, even though your patient may never have to face difficulty.
Know what your loved one wants.
Some patients need care around the clock. Others do very well with their surgery and recovery and only need assistance with certain aspects of their day. Knowing what your loved one wants you to help with can ease your concerns and free up some of your time. It can also make the patient happier knowing they can begin to start caring for themselves gradually, but that you are there in case they need you. Everyone enjoys at least some time alone, so make sure you understand your patient’s needs and wishes.
Join a support group.
As a blog writer, I have attended some of our patient support group meetings, and I can tell you from experience, these are wonderful groups of people. Support groups have casual conversations, presentations from experts, roundtable discussions and even some fun events and celebrations. You can participate at your comfort level or just sit back and listen. Our support groups at Mayo Clinic have patients, caregivers, family members, and professionals in attendance. You can also consider joining an online support group such as Mayo Clinic Connect. Our caregivers discussion group has many helpful tips and discussions where you can participate or just learn more about being a caregiver.
Do you have more tips about being a caregiver? Let us know those below!