Wow, these are great questions! I feel at the Mayo Clinic they do a very good job in preparing the caregivers for what is coming; however, there are always surprises. We stayed at the Gabriel House and saw and learned from a diverse group of patients and caregivers. My recommendations would be:
1) Be prepared for the unexpected. My husband had a lung transplant and was released after a week with no issues or side effects. A month later he had to have a hiatal hernia surgery and that seemed to set him back. In addition, I was required to blenderize his diet for two weeks, which was a challenge for him because his stomach could not take the liquid food and for me because I struggled with the lack of space and tools to make this happen. In addition to this, he fell and sprained his ankle which put him behind in his pulmonary rehab, which made us doubt that we would be released at the end of 90 days.
2) Get support from friends and familiy. When my husband had his transplant I was all by myself for 6 hours in the waiting room. Those were the longest hours of my life, but I felt that I was embraced by a virtual community as I was in permanent contact with my husband's sister and brother, our daughter, and our Pastor. After that, I found a wonderful group of friends at the Gabriel House. In particular, I had a lady friend that would walk with me and we became each other's confidants of our frustrations (which will happen).
3) Be prepared to deal with your loved one's frustrations. The Mayo Clinic reinforces the importance of the caregiver to be very involved in the patient's care. We are supposed to learn all the medications, reading lab results so that we can ask intelligent questions, cook nutritious meals and observe the patient for changes. We also have to help with other activities of daily living (i.e. showering). Although this can be overwhelming for the caregiver, it can also be overwhelming for the patient if the caregiver is smothering. The patient, who is usually independent, has to be allowed to do what they can for themselves. At the Gabriel House, they conducted a focus group with male patients who had had a transplant, and while they all appreciated the care received from their partners, they all complained that they felt smothered.
I hope this helps caregivers to be.
Denice