What happens when a person with a chronic illness becomes caregiver to someone with a chronic illness?
It's tough to live with a chronic illness. It's tough to be the caregiver for someone who lives with a chronic illness. Imagine the complications which can arise from the dual role of being both a patient and caregiver. It happens more than you think. Situations exist where both spouses have chronic illnesses. Chronically ill adults take on the responsibility of caring for a parent or other elderly relative, or even for their own children who are saddled with illness or disability. Make no mistake however. Just because it is difficult, the fact that it is clearly a labor of love is never overshadowed or diminished.
Even as we acknowledge that it is done out of love, the dual role will introduce extra stress and fatigue into ones life. How could it not? Emotional issues and coping skills are tested too, as they seemingly become compounded.
There are myriad positive aspects to the dual role. The positive aspects must remain the focus. To succeed in both roles, as patient and as caregiver, do a reality check on your specific situation and follow the advice offered herein. The buzz words which should not be forgotten are reasonableness and balanced.
You have your loved one in your home, the most loving setting possible, and can offer the best care within your capabilities. Celebrate the victories together. As medical conditions improve, take pride in the work you have done to make that happen. Every task of the caregiver, no matter how small it seems, is actually an incremental step toward promoting steady progress and recovery. Now for the reality check.
- Not everything will go right.
- Not everything will go perfectly or as it was intended.
It truly takes a unique perspective to understand that, and not lose sight of the bigger picture - the positive aspects.
What can help make each day go as smoothly as possible? As the person who has the dual role, consider the following:
Anticipate and plan for your needs. Develop a routine which allows you to have necessities available at all times, including:
- clean clothes/bedding
Plan ahead so you don't need to expend energy on making special trips.
Anticipate that your dual role will without doubt cause you extra fatigue. Anticipate that you will need extra rest for yourself. Not only will the additional physical activity required of you cause extra fatigue, but the emotional drain caused by watching someone you love have setbacks or suffer can be exhausting to a level you never experienced before. This level of fatigue can affect your concentration, memory, and ability to relax without being consumed by worry.
You're not superman or superwoman. You cannot do it all, or be everything to all people. If you stretch yourself too thin the irritability and frustration factors will soar. If you learn to expect some frustration, you will likely learn how to deal with it by adapting and making the adjustments necessary to avoid some of that frustration in the future. The key to success for the dual role is for the patient and the caregiver to have reasonable expectations of each other, strike a balance between fulfilling each other's needs, do the reality check to assess what truly is causing the frustration. Work on solutions.
Your physical and emotional strength are required. It's your job to recognize that and do what it takes to remain strong. If it means taking some time for yourself, then that's what you need to do. Perhaps taking naps is what will help rebuild or maintain strength. Allow for fun times between yourself (the caregiver) and the person you care for. Not every minute of every day can be focused on problem solving. Become energized by the mere fact that you are sharing your lives together. That's what will pump up emotional strength.
No matter what setbacks have occurred, nor how life-altering your circumstance has become, you must continue to set goals. It is likely that short-term goals would be better, in keeping with the prevailing theme of keeping life reasonable and balanced. As you attain each goal, reach for another. But don't set yourself up for failure and frustration by setting unattainable goals.
Be prepared to forgive yourself - often. In the dual role, mistakes will be made, things will be inevitably forgotten, harsh words occasionally said, and the house will never be satisfactorily clean in your eyes. This is clearly a two-way street, so realize the person you care for will also make mistakes and forget and speak harshly and get frustrated by those things they cannot yet do for themselves. Be prepared to forgive them too.