Caregiver to cousin testing for liver transplant: Can I get support?

@emilyw, Your cousin’s schedule of appointments should include a visit with social worker who can best direct you since you are the caregiver. My First suggestion is to bring this desire to talk to someone up to him/her at the appointment.
If the social worker appointment is later in the week, you or your cousin can inquire when signing in with the transplant dept.

And, you can always contact the chaplain office. They make themselves available. And have experience with patients, caregivers, families in all manner of stressful situations. I’ve not been to AZ, but at the Rochester Mayo there is always someone available.

Let me know how your week goes. You are doing a great thing to be a caregiver for your cousin. We can talk about caregiving whenever you want to. ❤️

Hi Emily, I have more information for you. 🙂
Generally, when patients are going through transplant evaluation the social work visit is part of the evaluation and can be scheduled at any point during the evaluation process. You can always contact the social work team by phone 480-342-1010 and ask to speak the social worker responsible for the organ group, in your case - liver. The call center will notify the social worker who will contact you directly.

Additionally, you are invited to join the Transplant Caregiver Support Group. They meet on Zoom the 1ST and 3RD Friday of every month at 11am-12pm AZ time.

The group is for caregivers, so we respectfully ask that patients not attend. This is a virtual meeting. No registration is required and feel free to come to any group you can make.

Join Zoom Meeting with this link: https://mchealth.zoom.us/j/6264429233?pwd=RG1pUy96S1lycFRNY2NLWWsvYVlvdz09
Meeting ID: 626 442 9233
Passcode: Mayo

The next meeting is on Friday, January 7, 2022

Rosemary, Got it. That is the day we’ll learn if she is a candidate. I will join the group then.
Thank you for this link.
So far, I am her support and welcome finding someone who can support me. At my home, there is frustration that I am not available to them. They want someone else to step up instead of me. This saddens me and causes me to not talk to family about what I am experiencing at the consultations for my cousin.

@emilyw, I want you to know that I have been thinking about you and your cousin. I know from my own experience how stressful the entire evaluation process can be, and I remember that the uncertainties and the difficult medical terms are just part of the process.
When you are rested and recovered from the week with your cousin in Arizona, would you let me know if your cousin will qualify as a transplant candidate? Did you have the opportunity to express your concerns about caregiving?

Emily, please know that I am here for you whenever you have questions or want someone to talk to.

Howdy, The evaluation wrapped up on Monday without a definitive diagnosis. The committee has approved her for the “inactive list”. More tests will take her back to Mayo on Monday for the week. Cancer of the bile ducts has not been “scientifically confirmed” but the tumors are growing fast. My husband had hip surgery 2 months ago and is now facing rotator cuff surgery. She may hire someone to replace me, but she is overwhelmed by the undiagnosed ailment. My heart aches that no one else is stepping up to be her primary caregiver.

Update: cousin received a new liver 4/20. Am caregiving a rapidly improving recipient. On Day 21, she’ll be released from Clinic! My constant urging that she ask for friends to fly to Phoenix to help caregive going forward has worked. I get to go home after 3 weeks & resume my old life. My cousin starts building her new life. I am exhausted. The caregiver is a man band. I learned to expect breaks and make them happen. Sympathy from supporters is the open door to asking for breaks from the constant worry, lack of sleep. Advocate for relief in caregiving!!!

@emilyw Congrats to your cousin! And congrats to you for hangin' in there! Your persistence enabled you to get some much-needed rest, and I hope this continues.
Ginger

@emilyw, you're right. Caregiving is a not a full time job, it's 24/7 overtime and includes mental exhaustion with the responsibility. Yes, when supporters offer sympathy and empathy, they are opening the door for the main caregiver to ask for help. Often people don't know what to offer and are waiting to be asked with a specific task. I try to give them something I know they can do. For example I wouldn't ask my friend who doesn't even cook for herself to cook a meal, but she can run to the drugstore with a shopping list in hand.

Have you caught up on your sleep and being back home in your surroundings?

My role as primary caregiver to a relative who never married or had children overwhelmed me when I was the only person in her life that offered to support her. At least, that is what she told me. Over the course of 6 months, from diagnosis of liver cancer to being “discharged from clinic”, my understanding and execution of that role changed. I found that “primary” caregiving had 2 additional components; 1) the patient needs to be his or her, own best primary caregiver, and 2) assuring informed care is administered to the patient by others counts.
I placed the heavy burden on my shoulders that I had to soldier on with “support” by myself. Over the months, the patient and I learned to “ask” friends and family how and when they could help. It worked. I oversaw the addition of caregivers who flew in to Phoenix and who would support the life long recovery at home from her neighbors. She feared who might be “burdened” by the request. I insisted that the truth of who would step up to help would be better than hoping that your favorite nephew might, and then, wouldn’t. If you don’t ask, you’ll never know who really will be there for you. It surprised her with tears of glee and some disappointment, but now she knows…