By Kathi Niccum, EdD, Education Director of DPC Education Center
Let’s celebrate our caregivers this month! Hopefully, we will tell them often how much they mean to us and how much we appreciate their help, yet November is a time to make it “extra special.” For some, their caregiver is a spouse, a daughter or son, a sibling, or a special friend. Our informal caregivers (unpaid folks who assist with activities of daily living and/or medical tasks) help with so many tasks including transportation, medication reminders, doctor visits, coordination of health care, advocacy, and they provide personal emotional support. Caregivers make life easier for the caregivee (person who needs assistance and has healthcare needs).
In the past 12 months, 53.5 million caregivers in the United States have given unpaid care to an adult or child. More caregiving is provided for people over the age of 50 and more men are providing caregiving now but it is still mainly done by women.
The 2016 Dialysis Patient Citizens (DPC) annual survey asked patient participants about caregiving. Fifty-one percent of the 510 respondents stated they do have a spouse or partner who provides caregiving. A little over one third of them said their caregivers do too much for them while 59% said the caregivers provided just the right amount of care. Roles may change, as they did for approximately a third of the respondents, but the relationships either improved (50%) or remained the same (25%) as before the illness. The survey results suggest the importance of good communication between the couple when living with a chronic illness.
The 2016 White House Conference on Aging specifically addressed caregiving and it is a topic that is starting to get more attention at the national and state levels. For example, there is currently a bill entitled Americans giving Care to Elders (AGE) Act of 2016 (H.R. 5196) that would amend the internal Revenue Code to provide an income tax credit for eldercare expenses. This bill was introduced in May 2016 and sent to the Subcommittee on Higher Education and Workforce Training in September. There is increased awareness that caregivers are very important members of the health care team and their input and understanding is essential for quality caregiving and the health of the caregivee.
The theme for the 2016 Caregiver Month is “Take Care to Give Care.” We know that many people believe caregiving offers its own rewards and makes them better people. Yet it also can be exhausting, overwhelming and stressful. Although caregivers give good care to others, studies have found that caregivers are more likely to be nonadherent to taking their own medications than noncaregivers. Caregivers also may see a decline in their own physical health and mental health. They may feel angry, depressed, and anxious about the caregivee’s diagnosis of chronic kidney disease.
Let’s look at how caregivers can “take care to give care” and how caregivees can help their caregivers to take care of themselves.
Sometimes you need to ask for help. Are there other family members, friends, or volunteers from church or another organization who can take a turn providing dialysis transportation, do a grocery store run, or provide companionship to the caregivee so you can go out without worry for a little while? Getting help is not a sign of failure or that you do not love the person you care for. It is a way to acknowledge that you are human, that you get tired, that you also need breaks to rejuvenate yourself.
If you provide dialysis and sit in the waiting room during your loved one’s treatment, can you go out during treatment time, at least one day a week and do errands, visit a friend, go for a walk, go shopping, or do something fun just for you? Or can you have a novel that you read ‘for fun’ during the treatment time?
If you stay at the facility, have you made friends with other caregivers so that you can “visit’ together, share ideas, laugh and relax together for a little while? Ask if there is a support group for family members at your dialysis facility or at the local hospital or look for an online group. The support of others who can relate to some of your experiences will feel uplifting and help you not feel alone.
If you work full time outside the home, can you bring dinner home one day a week so that there will be no cooking and little clean up? Can you go out to lunch with colleagues and friends? Take some time on the weekend that is “just for you” – it might be 15 minutes or 2 hours, but it is your time. Most caregivees can also learn to “wait their turn” if it is not a time for medical care or an emergency.
You probably also need to decrease your stress level. It will help if you take some time for yourself, eat healthy foods and exercise. Listening to music, dancing, laughing more, watching funny movies, keeping an “attitude of gratitude journal” and finding joy in caregiving are also good for your health. Some caregivers can only see the burden of caregiving while others find they learn so much from it and it brings them closer to the other person. Find your balance.
Caregivees (Those who receive the love, support and assistance from the caregiver)
You may feel angry at times about what your caregiver spouse can still do that you can’t. But please don’t take it out on him/her. Kidney disease is a family disease and everyone is affected. It may change some of the hopes and dreams of all family members. It may add new opportunities that were never expected. You have an equal opportunity to find the positives as well as the negatives of your situation. Embracing what you learn as well as what you gain will serve you better than the potential anger and negativity. And recognize the worth of your caregiver and make sure you show it!
- Give a homemade “thank you card for all you do”
- Make a date for a night out or an afternoon out to remember that your spouse is more than your caregiver;
- Use your manners – caregivers like to hear please and thank you;
- Do something special for your caregiver
- Fix a meal for your caregiver
- Watch a movie together
- Go for a walk together
- Do a jigsaw puzzle together
- Play a computer game together
- Do something with a friend or other family member so your caregiver can have “time to go out” with a friend too
- Try not to ask your caregiver for something the minute he/she sits down to read or rest.
The DPC Education Center recognizes the importance of family caregivers. Living with chronic kidney disease as well as being a caregiver offer challenges and opportunities. People living with kidney disease need to understand the input of the caregivers. And, learning about kidney disease, understanding the physical and emotional aspects of caregiving, and receiving support are important for the caregivers.