How do you make your kids understand

@momica - I am so sorry, having been through caring for my Mom (with my sister's help) and having my brothers act like your kids, I get it. And I cannot imagine having to travel for care as well.

People under stress often do not know from one minute to the next what they need to do/have done. And immediate, medium term and long-term needs get all jumbled up in the mind, with no priorities assigned. This is NORMAL stress response.
Do you have a friend, a sibling, or a faith leader who can help you organize your thoughts, then meet up with your kids again?
Otherwise call Mayo, your own primary provider or your county agency on aging and get to a short term counselor to help you sort this out. Maybe they can help you prioritize what you need into:
Immediate - Give Mom a day off! And mow the lawn, do the laundry, clean house, clean & restock the refrigerator...
Short term - Set up a schedule for giving Mom time off. Get help getting to appointments, making small repairs, paying the bills, set up auto-pay where possible to make things easier...
Long term - figure out housing options and when to make changes, get all paperwork in order, update your wills...

As you say, your kids are hurting too, but they need to quit judging you. But they are adults who need to step up. Tell them you are no longer the "old mom" who could manage everyone and everything If it is important to you, or to your husband, it is important. And if they cannot do things, ask them to take the time & effort to find someone who can - you have enough just taking care of your husband and you. Often the local oncologist/oncology clinic has resources to help.

I'll be thinking of you as you work this through - this group is hear to support you.

@sueinmn thank you so much for your wonderful advice. I like the immediate, short and long term ideas. You said it exactly that everything gets jumbled up. I do have some very dear friends and a pastor who will listen. They have offered but I always feel like I bother them. But I’m learning that most people offer their help, they mean it. I just need to reach out more. But I will definitely talk to the kids about the immediate ideas. Thank you so much!!!!

@momica,

I hear your frustration and think I can understand how you feel. My husband has been dealing with esophageal cancer since 2018. In the beginning, my head was spinning and when friends and family tried to help, I pretended I could do it all by myself but to sustain that energy was nearly impossible. I knew I needed help around the house, yard work, cutting the lawn, doing little repairs around the house, things my husband always took care of. We have 2 sons in their 30s. Our oldest lives about 5 mins away and our younger son is in Boston about 90 mins from us. My oldest helps with the physical stuff with the yard and house. My youngest is more of a moral support voice on the phone, with trips here when he can. My husband is in remission now after a recurrence and is doing well but still not back to his usual self. He will not ask for help from anyone, including my son who wants to do whatever he needs.
I think making a list of what your biggest needs are (at least the most pressing ones) might be a good place to start. Tell your children you've got a list of specific things that need to get done. I'm hopeful with time, you'll be able to really take inventory of what would make your life a little easier and ask for help with those specific things that are most important to you.
And when you're feeling especially down and anxious, remember you are truly the glue holding things together. You can't do it alone.
Many good thoughts and prayers coming your way.
Lynn

@momica Lists help too!
Maybe you can sit down with a friend and make four lists:
Immediate
Short term
Long term
Comments that hurt me
Then prioritize each list, and arrange a new chat with your kids. That way, next time they come, they will know what you want done THAT DAY. After a few tasks, you can sit and talk about what is next. It is up to you how, or whether, you share the list of comments that hurt you.

Do they have an affiliated Hope House near the hospital where you and DH can stay during extended treatments? I did Thad for radiation, Mon-Fri for 6 weeks. Back home each weekend. It was truly a godsend.

Call the social work department and ask for help.

I too was going to suggest a list. When you are feeling better for a moment and come up with something you would like, write it down. Know where that list is and add to it as things come up. With a bit of practice you'll get better at identifying your needs. I would say anything from an hour to myself, weeding the garden, taking out garbage. Help decide how to tackle cleaning a room or space, company for a quiet cup of coffee, getting your nails done. I would then text it to your kids and they can pick what suits them or their skillset. If it's working, update the list. I would start with just a random list. I imagine making decisions at this time is overwhelming.

Thank you. Love your suggestion for a list and ideas to put on it. I already started one with hair appointment and a coffee break 😊.

@tullynut thank you for your suggestion. I will have to check with the social worker. But that sounds like a great idea.

Based upon my experiences while my mom had cancer and while my husband has had cancer, I think your overwhelm is expected. I don't think you should be hard on yourself if you need help with mowing and housework. I would have given anything to have help with housework when my mom was ill. Like you mentioned, there were a lot of appointments and things that I wanted to attend to. Plus, I think it was very important to have times to get out of the house or clinics and see nature and step away from all the shock of such a horrible diagnosis for a few minutes. It is a very difficult and overwhelming thing to have someone in the family with a diagnosis like that. I do recall how I felt as one of the children, back in the time when my dad had cancer and my mom was caring for him. It is really hard on the children, too. I did not know how to act to support my mom. Heck. I felt like I needed support myself. I guess my point is that I hope you don't take it too hard how your children talk or react. I wonder if you have the means to hire someone that is not so close to the situation to help you.

I see people suggesting you use lists. That is a good idea. I can offer some practical suggestions. I have found, over years of caregiving, that carrying a notebook is a nuisance. These days, you can organize everything in your phone. I take pictures of the business cards of every doctor and keep them in my phone. I write the location of the doctor like Gonda 12 South on each card before I take the picture. I made a folder in my phone to keep all of the pictures of their business cards. At Mayo Clinic, that really helps you to have the phone numbers you need handy. Be sure to get business cards everywhere you go. Also, I list all the questions my husband and I have in a list in my phone. Then, when we are in the appointment, I run down the list and check off all the ones that have been answered in the course of the appointment and bring up the ones that are left at the end of the appointment. You can also write down or use voice to make memos in the Notes app of your phone to keep information you need. If they give any handouts, say a special diet or discharge instructions, I take pictures of all the pages of that to keep in the folder in my phone, too. If you choose to use your phone to organize things like I do, it is a good idea to have a charger cable in your purse. You could even have a rechargeable power bank with you. I know it is ridiculous, but when things get overwhelmingly horrible for me in my mind I sometimes go on a "relaxing scroll" in my phone, too, while in waiting rooms (You know? When you are sitting there waiting while your husband has a scan or procedure).

I have one other idea about things that were actually helpful for me. First, allow me to reiterate that help with housework and cooking would have been HUGE for me. Anyway, I had one person that actually wanted to be helpful, and she was helpful. She would tell me, "Go buy whatever you like for dinner from/at a restaurant for you and/or your husband (sometimes he could not eat). Then tell me how much it was and I will PayPal you the money." That actually was helpful. I hate cooking and it was one less thing to worry about.

Your family would not be better off without you. I imagine that they are very sad that their father has a brain cancer diagnosis and it is probably hard for them to be at their best with you. I think most people would tell you that it is inadvisable to make huge decisions like moving when you are under such stress. Also, it is not right for your child(ren) to be telling you what is important for being supportive and what is not -- but I would cut them a break because their father is so ill. I think you should let anything your children say go in one ear and out the other. Reacting to a cancer diagnosis is usually such a shock that there is no telling what regrettable things a person may say or think. I am hoping you can find some people, outside of your children, that may be able to help support you. Actually, I hope that those of us on Mayo Clinic Connect that are trying to be helpful are at least some small support.

I imagine you know about the Cancer Education Center in the clinic? That is a place you can ask questions, too. I know I am certainly not the person that has all of the answers for you, but I want you to know I have experienced some similar things in that I have driven my husband round trip to Mayo Clinic (1400 miles round trip), 35 times.

Thank you so much for your comments. I am so sorry about your husband and mother. I know it’s very hard on my children and I wish I could give them more support. They are doing what they think is best for both of us. I need to remember that. This group is very supportive and I really value all the advice and support. Thank you again!!