The role of caregiver can be the hardest and most rewarding.
It is also one for which very few of us are prepared to accept. We can only do the best we can with the knowledge we have. Therefore, it helps to know experiences of others. Here are a few to consider.
- If you are a spouse, parent or child it is difficult to separate the relationship role from the caregiver role. Besides of this conflict, there is the issue of responsibility. Taking control often manifests as being a “mother hen” and trying to anticipate every move, every need. Yet, the patient’s abilities to perform and make decisions need to be considered as long as appropriate. Balance, flexibility and strength are required from the caregiver.
- Not understanding the consequences of end of life decisions makes it difficult to draw the line between connecting the problems of the patient as part of the process and wanting treatment. Some suggestions can be found from providers, on line, friends, caregiver resources and blogs where you can ask questions.
- Information is often limited. For instance: Not knowing what to expect of the process and the providers; how to communicate to patient about the illness, safety and decreasing abilities; the contradictions between the various health care providers and what you may see and feel can cause lingering regrets. Expect to feel exhausted and defensive. Try to step back and not react with anger and frustration.
- When being on guard and aware of the patient’s condition becomes a priority, the quality time with a loved one is diminished. How do you want to remember your time together?
- Take care of yourself. Keep in contact with friends and socialize as much as possible. Monitor your mental and emotional state. Find ways to be positive, be grateful, listen to uplifting programs. Remind yourself you will get through this experience.
- You may eventually be alone. Use this time to visualize what you want if this occurs. What will your home be like? What goals will keep you moving forward? How can you use your talents and energies? You don’t have to rush into anything such as housing, money, relationships. The quantity and speed of recovery are not important. However, moving forward i
After care giving.
Remind yourself of the positives. Know you did all you could with the knowledge you had at the time. Begin calmly taking care of the tasks at hand and ask for help. Determine what you’d like to do. As you reach out, life’s opportunities will expand.
Above all, do not feel guilty for what you didn’t do or what you now feel were mistakes. One final caveat. By the grace of God, you entered this uncharted path. Know your experience has, and is making you stronger.
What would you have done differently? Probably nothing. You did what you did from where you were and the information you had or could accept. Grant yourself this consolation.
Put aside your fears and the hardships of the tasks. Think about the connection you’ve always wanted with this person. Beyond the situation, there is love. Let love be your fondest memory, your greatest gift to each other.