It is important to recognize the roles caregivers play: nurse, messenger, manager of care, spirit booster, take on the brunt of home responsibilities such as financial/childcare, etc.
Challenges can occur when the once equal roles change and become unequal, changing to "nurse" and "patient".
The change with increased dependence can be frustrating for both sides.
Caregivers are "secondary survivors", they need caregivers too.
1. Seek creative solutions.
2. Be open with each other. Some people don't want to be open with their loved ones as they feel they need to protect themselves. However, research shows this disconnect and isolates people.
3. Practice "I" statements with each other. For example, "I feel frustrated when I can't do the things I used to", "I'd appreciate if I could get help with this by..."
4. Statements that start with "you" lead to defensiveness.
5. This process is too much for one or two people. Seek to create a village for yourself and allow people to help with chores, errands, etc. If they say "let me know", be prepared to tell them things they can do to help. This can be hard, but if we don't inform, people don't know what to do.
6. Talk to others who have gone through this.
7. Utilize online community support pages and organizations such as CaringBridge, Helping Hands Ministries, GoFundMe, etc. They are great as updating tools as well as crowdfunding.
8. Work your life as a caregiver around the needs of the patient.
9. Be a team. Consider what each person is capable of bringing to the table.
10. Go to your loved one's appointments and understand their treatment/needs.
11. Be there to cheer your loved one on.
12. Try your best to be emotionally supportive.
13. Care for yourself. Caregivers need caregivers.
14. Attempt to anticipate needs and be attentive.
15. Constantly communicate.
16. Discover the fine art of learning ow to push your loved one to do what they can to continue to develop strength but do not "cross the line" with your efforts.
17. Don't compare you and your loved one to others. Everyone is different, so you can set yourself up for frustration.
18. Hold on to stories of hope.
19. Research options available to you.
20. Make every place you have to go on this journey as comfortable as you can. (You can decorate the hospital room, bring items from home, movie nights, etc.)
21. Look for the good and positive things to see.
22. Take good notes on care and medications for your patient.
23. Schedule things to look forward to together. (Game days, pizza night - as dietary needs allow, etc.)
24. Find foods and activity that agree with them
25. Take slow walks together if able, or sit in nature together.
26. Allow for breakdowns.
27. Hold on to the happy things and make the journey as fun as possible.
28. A mindset of "adjustment and flexibility" needs to be adopted.
29. Allow time for individuals to be alone, and to have time alone together.
30. Boost your support network.
31. Consider allowing a mental health professional or a spiritual leader to be on your support team.
32. Be mindful of how you address anger/frustrations. Don't blame each other or take all your frustration out on your loved one.
33. Look for ways to show love and gratitude to each other.
34. Respect each other's thoughts and feelings. They matter.
35. Find ways to incorporate your spirituality into your relationship and healing journey.
36. An approach that can help is looking at this process as a "we" experience.
37. Develop a mantra or select a scripture that is your theme for strength, a personal motivational statement to help you get through.
38. Try journaling or finding other creative ways to let your feelings out and to mark progress.
39. There is nothing wrong with second opinions, asking for what makes you comfortable, and addressing concerns you have with the health care team.
40. Remember that everyone who loves this person or is in the family is struggling with this in some way. Don't dismiss the needs of others in the family. Doing so can cause resentment.