How to stay calm...all the time...

[hbridge]

DC is home from college on medical leave. They are in constant pain and unable to do much. All they want to do is get a job. However, they are not capable of doing much right now due to pain and "brain fog" (from medications). They are angry, frustrated and in pain. They can cook. My kitchen is in constant use and the dishwasher runs 3 to 4 times a day.

DC can't drive so we are at the grocery store at least once a day. The medical appointments are almost daily.

Some of the doctors are wonderful, a few others are horrible. The "gatekeepers" are done dealing with me and I get a lot of attitudes when I call about scheduling things. The primary doctors do an okay job sharing information, but there are tons of medication side effects that are being managed by others so there is a lot of managing medical and informing the team of changes that falls on me. Medication management and care management is on me. Things are in constant flux.

DH just got a new job so he is stressed and unavailable.

DC spends a lot of time screaming in pain and expressing frustration.

I work three part time jobs. One is done from home, but I have been struggling to keep up. One is a few hours a week. The other is two days a week. The last one is mostly weekends when DH is home, but I do need to go in tomorrow (DC is not happy that they will be alone all day, the last time I left them alone, they called screaming).

I don't know how to do this and stay calm and centered ALL THE TIME. DC is feeling very guilty about all the "trouble they are causing" (NONE OF THIS IS THEIR FAULT) and DH is very tuned into others stress. He has an amazing superpower where he can detect ANY disturbance in the energy of the house and reacts if there is a disturbance.

I am done. ...but I can't be done. DC has been sick on and off for 8 years, continuously sick for a year, and it all came crashing down three months ago. We are looking towards at least 6 more months.

I need to stay calm, no matter what happens. Two primary parts of my support system both died in December.

How do I stay calm and centered?

[SnuggleBuggles]

I’m so sorry
Can you hire help even just 1 day/ week?
Can you have groceries delivered?
Did you ever look into the transportation options for dc?
Can you take time for a walk by yourself each day?
Hugs!!!


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[chlobo]

I don't have advice but I'm so sorry you are going through this. It sounds incredibly hard and frustrating. Praying for you and your family.

[Liziz]

Things sound so hard right now. Sending you all the support I can send across the internet.

I don't think you can stay calm and centered ALL the time right now and I think that's putting an unrealistic expectation on yourself that probably makes it harder to stay calm and centered the rest of the time.

I don't feel I have the expertise or experience to give a lot of good suggestions on WHAT to do (hopefully others will!), but I think if you find a time in the day or week that's just for you to acknowledge how you're feeling/all the tough stuff and allow yourself to NOT be calm and centered for that time, it may make it easier to keep your calm the rest of the time.

It also sounds like a lot of your DC's pain and frustration right now takes the form of putting it on you (unintentionally, I'm not blaming your DC for anything at all!), which even if unintentional can add a lot to your load. I wonder if you can explore other ways for your DC to deal with their pain/frustration that don't affect you so directly. I realize this is completely small potatoes in comparison, but my oldest DD has always lashed out at me whenever she's angry/frustrated/hurt/in pain/nervous - even if it has nothing to do with me (which it usually doesn't). It can be hard for me to stay calm when that much emotion is thrown at me, even if I know it's not personal at all. She also usually feels bad later, after she's calmed down or feeling better. We've learned that I can often direct her in the moments to write me a letter instead of screaming at me or even interacting with me. I can also push her out the door to our dogs outside, as she's more likely to let them cuddle and love on her vs. me in those moments. I'm wondering if some of that dynamic is going on with your DC, and it may help you if some of that can be redirected.

[jgenie]

I am so sorry your family is going through this. I find that I need to prioritize exercise and sleep when life gets overwhelming. If I can get movement every day and good sleep I’m so much better prepared to tackle life. Sending hugs and healing vibes your way.

[pinkmomagain]

So sorry your DC, you...your whole family is dealing with this.

Some random thoughts:
- If your DC is in so much pain and is screaming, could they benefit from a higher level of care?
- Could you hire an aide to be there with DC?
- Does DC go to the grocery store with you? If so, are there times when DC is in less pain? If so, can DC take an Uber to the grocery store themselves?
- Can DC do some of the medical coordinating themselves?
I ask these last two questions because I'm wondering if DC would feel more empowered taking on some of this? And it could potentially lighten your load. Maybe it's using a portal or app to track symptoms or side effects and communicate with the medical team.

There is so much going on. I think expecting yourself to be calm all the time is a tall order. A screaming loved one in pain is going to be a jolt to the nervous system. When do you get to crumble/cry/breakdown? Do you have an outlet that gives space to you expressing your feelings? It sounds like supports you've leaned on are no longer available. That's hard too. Are you in therapy yourself (I can't remember)? If not, I would strongly encourage this. Maybe a support group for parents of kids with medical conditions?

As far as things to help stay calm/grounded as much as possible, I'd say meditation, nature, physical activity, hobbies come to top of mind.

[hbridge]

Hi everyone,

Thanks. Unfortunately, hiring help is not an option. If DC is okay, they are fine on their own.

Do college kids use Uber/Lyft? DC is really concerned about being alone in a car with a stranger. They had a few issues when they were younger using a school transportation service that has created a trauma response. At this point, they are in too much pain to add any additional anxiety, but it might be something to work through later.

Grocery delivery is NOT available in our area.

We are working on getting DC to do some of the medical coordination. There are two minor issues they are coordinating themselves. The bulk of the coordination is insanely complicated and the staff is not generally kind when you call (it's a huge issue).

Pain management is the current critical piece. In short, there is none. Tylenol is the only option and it is not touching the pain.

DC's therapeutic activity is writing, but their hand joints are too swollen. They also cannot type or play the guitar. I WISH they played video games, but they hate them.

I just need the screaming to stop (everytime they move they scream in pain) and the not to be in charge all the time. When I get upset, the entire house goes into chaos that lasts hours. I need to hold it together all the time to keep everyone else from losing it. I have tried leaving the house for a walk, but when I get back, it's worse since DC feels guilty.

At the moment, I am working on meditation when the stress gets too much, but it's not really working. I haven't even had time to mourn the losses in December which I know is making everything worse, but I cannot figure out how to let those feelings through.

Friends reach out, but I can't even find a time to meet someone for coffee. Also, not too many people know that DC is home this semester, I am losing touch with friends.

[SnuggleBuggles]

You need to just take care of yourself and not worry about dc just for a few days. They have to understand. Go rent an Airbnb in a city, nature, or whatever your happy place is and go solo or with a friend. You deserve a break! Think about it- it’s what you would tell an overwhelmed new parent too. If you’re not in a good place, it’s hard to help someone else. In the scheme of life, taking 2 days out of the months you’ve been dealing with and still ahead are nothing. You deserve them. Let friends step up and help. They will!


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[echoesofspring]

Briskly walking outdoors is the absolutely best thing for me for releasing stress and tension, is there a way you could get regular walks in vs. leaving when you've hit your breaking point. Then maybe DC doesn't see it as a response to their pain, but more just part of your routine/taking care of yourself. Do you do any breathing exercises? My watch has a little thing where you can focus on your breath for 1 min. It sounds corny but I've watched my heart rate lower while I do it.

I just need the screaming to stop (everytime they move they scream in pain)

It sounds like they are in incredible pain, but can they work on not screaming so much, their own deep breathing/psychological pain management/meditation, etc. ? I'm guessing that even after this gets better it doesn't go away, at least for a while and being able turn down the screaming would probably help them in any sort of shared living situation they may find themselves in. Can they do voice to text journaling?

I'm so sorry you haven't been able to get faster answers/treatment for your DC and that you are shouldering so much. When I was dealing with a full time super stressful job and little kids and DH was either having a medical emergency or not home I felt so completely topped out so much of the time. I would get advice to make time for myself and it seemed absolutely ridiculous, I didn't have the mental capacity to plan something or even think about what would make me feel better and it felt like the ceiling would fall down if I took a hand off to think about myself or had to do one more thing. But maybe there are things that you can let slide. And please vent here as much as you need.

[crn]

I’m so sorry that things are so bad and that there doesn’t seem to be any real relief expected in the short-term. Seeing your child in pain and being unable to help is traumatic for any parent, as is seeing them lose so much due to illness. I agree with posters above that being calm all the time doesn’t seem like a realistic or fair expectation. Even if you need to stay calm most of the time, you should be allowed to have times when you can feel your feelings, break down, grieve the current change in circumstances for your child and yourself, etc.

When I was struggling while caring for a child going through a mental health crisis, I found this article on preventing caregiver burnout (geared towards mental illness, but relevant to chronic illness) and some of the suggestions actually did help. For example, breathing and thinking “My love is deeper than your pain” helped me stay calm sometimes when DC was lashing out at us. Actively trying to remember positive traits or funny childhood stories/events also sometimes helped me hold onto who my child was despite the illness.

https://childmind.org/article/preven...arent-burnout/

In terms of suggestions, could DC use a talk to type program or app to be able to “write” and express themselves? (I know it is not the same as the actual physical act of writing though.)

When friends reach out, maybe you could tell them you are overwhelmed due to DC needs and can’t hang out right now, but you could use help with x concrete thing (maybe picking up something at the store or taking DC to the store to save you a trip, cleaning the kitchen, running/folding laundry, mowing the lawn, etc.) It could be anything that would take something off your plate. I know I would be very happy to help a friend this way, but I might not know the right thing to offer.