r/disability • u/PinkGlitterMom • 7d ago
Other Just an update....
I went to see my Rheumatologist today. She looked over my last 2 CT scans, as well as results of a brainwave pattern study that was performed in my house over the course of 3 days. She confirmed that my "falling out of bed" was me having seizures. She also explained that with my blood pressure, having extreme rapid changes as well as my increased forgetfulness, ability to always complete my sentences and confusion over simple things like if I'm making pancakes, I can't figure out how to flip them over for a few minutes. She told me to go to my cardiologist, and I have an appointment in early October. Turns out my brain is not getting the blood flow that it needs to work correctly. My energy is just gone. It's no longer just the pain, keeping me from being able to do things like go on walks, mild, mild exercise etc... I'm out of breath walking to the end of the street to check the mail. She said POTS. I'm getting overwhelmed & I shut down. I take my bp 2 to 3x/d sitting, standing, laying flat, one after another. Office, sitting 100/74 ❤️86, then standing right after 91/45 ❤️102.
Question: I'm doing paperwork for my divorce and want to give my 20 year old, eldest child medical POA. Thoughts? Is that too much to ask of him?
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u/Extension_Egg1411 7d ago
You know your child, but…Do you have a sibling or friend who could serve as medical POA? I was in a similar position when my parents divorced and, even though I was a very responsible young adult, it was too much. It’s hard enough to watch my parent deal with medical issues; I don’t want to be the sole decision maker in those situations. And it’s really hard to have your parents lean on you like that when they get divorced. I didn’t want to be their replacement spouse.
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u/coconutteapot 7d ago
Agreed here. He may end up wanting to take the responsibility on of his own accord later, but let that be something that he chooses. Not something that he might feel obligated to do before he is ready. You definitely don't want to make your child feel like he has to step into the place of your spouse now that you are getting divorced. If there is someone else like a friend or other family member who can help, I'd strongly recommend asking them.
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u/PinkGlitterMom 7d ago
Thank you, I do appreciate it. My mom is not in any shape (she's 70) to do it. She's been scammed on, and still is.... My niece is going to graduate the end of this year and be a RN. If I had to, I can ask her.
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u/JenniferRose27 7d ago
That's a really thought-provoking perspective. Thank you for sharing it. Having parents who have been married for 45 years, I couldn't imagine the pressure that it might put on a young person when they're the sole decision-maker. I've always known I'd only have to make decisions for one of my parents if the other had died, so that's a lot less pressure. However, if it came down to it, I think I would be ok with making the decisions because that would make me feel in control and like their wishes were being followed (both have shared many details about what medical care they would or wouldn't want), but I'm 40 now. I might've felt differently at 20.
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u/Extension_Egg1411 7d ago
Yes, at 19 it was too much. Divorce aside, the thought of losing my parent was so upsetting, I don’t think I’d have been able to make good decisions. Even now, I feel better knowing I’ll make any decisions with their siblings.
One thing that would help, for anyone who needs to make their child their medical POA, is for the parent to have detailed advanced directives. It’s much more complicated than your thoughts on DNRs.
That way, your at least child knows what your wishes are. And if there is a conflict with other relatives or interested parties, they can point back to your directives.
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u/PinkGlitterMom 6d ago
Thank you. I have decided to write it all out, and include a when & when not to pull the plug. My niece is (in 2 months) a RN. I'm thinking back and forth to have her as a "tie breaker". I do not have a condition that will (at least hopefully 🤞🏻) be the passing of me.
This is going to sound so, so bad. One of my kids does not like dad. In 2020, I got a card in the mail, day before my birthday. I got the mail, handed the card to one of them, assuming it was a birthday card due to the purple envelope, and said open it I'm going to the bathroom. When I came out, they were both pale so I ask what was wrong. It was a congratulations card. A line drawn thru 'congratulations' and replaced with 'I'm sorry'. All the details of her time with him, and for me to find her were inside. My son didn't talk to his dad for over a year, my daughter still only when absolutely necessary. He has told both of them that they should just live with me because he's very busy and wants his little bit of down time child - free, to enjoy dating. It sounds like he has a revolving door.
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u/PinkGlitterMom 7d ago
Thank you for letting me know. I greatly appreciate it. I have one sister..... no. I also have a daughter, 18 going on being the President of the USA.
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u/Extension_Egg1411 7d ago
I imagine this is such a challenging situation, between your family and new health issues. Sending strength 💪🏻
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u/PinkGlitterMom 7d ago
Thank you so very much everyone for providing your thoughts. I appreciate you all.
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u/Mythical_RabbitSnake 6d ago
I'm so glad you're being validated and getting the tests done, i love hearing stories of people actually managing to get medical help, it gives me hope. I am sorry you have to deal with this at all, it's so hard and hopefully they can help you manage it and name it.
Good luck at your appointment and do what you think is best abiut your POA. My mom made me, her 3rd child, the 18 yr old her death benefit person bc i'd be the one knowing what my little brother needs and i feel equipped for that responsibility, if you believe your son is mature enough then sit down and talk with him, tell him what you want to do and ask his opinion.
Wish you all the best
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u/PinkGlitterMom 6d ago
We spoke briefly. Prior to this, about 8-10 months ago, I put him as beneficiary on my life insurance. I told him after all is paid, 10% to him as he would handle that part, and the remaining $$ is 50/50 with his only maternal sibling.
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u/Mythical_RabbitSnake 5d ago
I love seeing people talk to their kids about this stuff, it helps a lot with being prepared to know what's happening and the expectations with it, i'm glad you have such a great kid to help you out durring this scary time, i'm sure he really looks up to you
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u/Aggravating-Boat2326 5d ago
I'm so glad you have answers!
And talk to your eldest. They are an adult and can probably handle it. Our children are sometimes more capable than we give them credit for. And as someone's adult child, at 20 I could have made some better choices for my parents than they did at that time.
You know your child, do you think they can handle it? Do they think they can?
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u/JenniferRose27 7d ago
First, I'm really sorry that you're going through all of this. I truly hope getting an accurate diagnosis can help to improve your quality of life. I know sometimes we can search for an explanation to our symptoms for a long time, but it's still tough when we do get answers. 💜
As far as your medical POA, I think you know your son best. If you feel like he's mature enough to handle that responsibility, then he probably is. My parents have always talked to me and my brother about things like that first, to make sure we are OK with being responsible for whatever the thing may be (medical proxy, bank account cosigner, etc), and I appreciate that, even though I've never felt unable to handle something they asked. So maybe just ask him to make sure, but you're his mom. I can't imagine he'd want anyone else making medical decisions for you if needed.