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Update on my mom


TexasProud
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Started a new thread rather than adding to old one.

Appointment Monday:

I showed up at my mom's house and she was very surprised as she didn't think I was coming until her birthday this weekend. She had completely forgotten our conversation.  So glad I went with her. The paperwork completely overwhelmed her.  The nurse had me finish filling it out. She added me and my sister to allow to get information.  There is a team assigned to her, including a nurse. I have her card. Nothing surprised me other than I did not realize the mass in her liver was 6 cm. It is also in her bones and pancreas. Not curable, but depending on what it is she may have a good quality of life for years...or not. ( I think if it is breast cancer like the doctor suspect, she may have many years with the new treatments. If liver cancer, no.) She is getting a bone scan, CT of pelvis, abdominal and chest, and a liver biopsy. If the liver biopsy doesn't tell them what they need to know they will do a bone biopsy. We meet with the doctor on the 30th to find out diagnosis, treatment and a more exact prognosis.

Went back to her house and typed up the notes from the meeting and printed them for mom. She then used them as she explained her friends and her sister who called what was going on...as in she read it word for word.

They have called and scheduled the bone scan for tomorrow and the liver biopsy for next week. But mom said they are telling her all of these instructions over the phone and she is getting really confused.  My aunt is going there today and will take her to the office for the bone scan. My aunt is 85 but very lively and of sound mind, but she does have health issues herself.

When I was there, I tried to get her on the online portal for both her cancer doc and the ER.  The problem is her email isn't working. I sent her some stuff with my email address and it didn't go through. (I used their phones and ipads to try to access their email with her help.) Reset password stuff never got to their email. I asked mom to change the email to mine and she agreed.  However, yesterday when I asked her to call the nurse and to write this down to say to her: Please change the email on the patient portal to xxxx..  She almost started crying. I don't think the words are making sense to her. (My husband is wondering if the cancer has gone to her brain. This is new and she wasn't like this when I was there a month ago.)  My step dad had processing issues way before this, so he cannot help. My mom said yesterday that her brain is not working right. This is not her brain she says.

Yesterday, I sent an email to the nurse asking her how I can get written instructions for the test tomorrow and next week. I explained the problem with processing ( which given Mom's behavior at the appointment on Monday won't surprise her) and that we cannot access the patient portal.  So we will see what she says. We are driving there for the day on Saturday to celebrate her birthday. I guess I will drive back Monday afternoon and take her to the liver biopsy and then drive back on Tuesday night. I have some dentist and doctor appointments Wed-Fri next week that I don't want to reschedule. Cavity will only get bigger, etc.

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Lots of hugs. It sounds like your mom really needs your help. It's so good that you could do all this for her; especially getting your name down as an authorized contact will help as time goes on.

I hope you and she get good news soon. Maintaining a high quality of life for several years would be wonderful. Whatever happens, know that your support is truly valuable to her.

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I am so sorry your family is going through this and I’m so glad you’re able to be there for her.  Navigating medicine can be a full-time job for multiple people 😕

What I have done is to make myself the primary contact for all situations, that way *I* get the phone calls with instructions and reminders and can relay them to her.  I also would have called the office and made any changes necessary.  I know the portal is great to communicate with doctors, but calling the front can get often faster results regarding mundane things like instructions.

If you cannot be at an appointment with her, schedule it for a time you’re free and then be on speaker phone when the doctor is in the room.  You can mention this ahead of time when the appointment is set or you can have her spring it on him, but no doc has ever said no to this.

To be honest, my mom isn’t sick or declining in mental health, her anxiety is so severe that she can’t listen to directions or do anything new.  However, I also did this when my father was ill just to take the burden off of him.  

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Praying for you @TexasProud.  I hope you can find a way to be the patient advocate for your mom. If the nurses are not very helpful you could try the hospital itself, the ombudsman might have some ideas.  What a hard road. I am sure that was really hard news to hear and very hard to see your mom lose her processing like that.

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DH's cancer team includes a person who is supposed to be the go to contact for non-medical, mundane type things. If she has one of those on her team it might be worthwhile to touch base with him/her, see if you can get contact info sorted out. It can be kind of a sticky thing to navigate, but IME doctors and hospitals are pretty willing to work with the children of elderly adults when they're on the HIPPA form.They don't want confusion, so it's kind of in their interest to work with the elderly patient's primary support person. Once you get all that sorted out and get a firm diagnosis things should be a bit better. Gentle cyber hugs.

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2 hours ago, Ailaena said:


I am so sorry your family is going through this and I’m so glad you’re able to be there for her.  Navigating medicine can be a full-time job for 

What I have done is to make myself the primary contact for all situations, that way *I* get the phone calls with instructions and reminders and can relay them to her.  I also would have called the office and made any changes necessary.  I know the portal is great to communicate with doctors, but calling the front can get often faster results regarding mundane things like instructions.

If you cannot be at an appointment with her, schedule it for a time you’re free and then be on speaker phone when the doctor is in the room.  You can mention this ahead of time when the appointment is set or you can have her spring it on him, but no doc has ever said no to this.

 

2 hours ago, Scarlett said:


 

How far does she live from you?

Yes, if not before, when we go back on the 30th for the diagnosis, I will have them make me the primary contact.  I am not sure my mom could navigate her phone to put it on speaker. I will make sure I am there for appointments. Already moved my yearly ob/gyn because it was on the 30th.

I live 2 1/2 hours from my mom. This week I have some appointments: well check up, cavity filled, etc and some last things I need to do for my internship that involve other people. After the 28th, all that is done, so I may just move in with my mom.  We will see. Some may depend on what the doctor says on the 30th. 

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2 hours ago, Pawz4me said:

DH's cancer team includes a person who is supposed to be the go to contact for non-medical, mundane type things. If she has one of those on her team it might be worthwhile to touch base with him/her, see if you can get contact info sorted out. It can be kind of a sticky thing to navigate, but IME doctors and hospitals are pretty willing to work with the children of elderly adults when they're on the HIPPA form.They don't want confusion, so it's kind of in their interest to work with the elderly patient's primary support person. Once you get all that sorted out and get a firm diagnosis things should be a bit better. Gentle cyber hugs.

Yes, that is who I reached out to yesterday. Thank you.

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You may need to request ROI release of information forms from each of her Dr’s so that they can give you all/any of the information. You would list yourself as contact and check all the box’s.   You might also want to get a health care directive form established, medical power of attorney.

It’s hard taking care of a parent, been there.
 

 

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2 hours ago, history-fan said:

You may need to request ROI release of information forms from each of her Dr’s so that they can give you all/any of the information. You would list yourself as contact and check all the box’s.   You might also want to get a health care directive form established, medical power of attorney.

It’s hard taking care of a parent, been there.
 

 

Mom signed the ROI on Monday.  She has a health directive and I have medical power of attorney.  They did those when they redid their wills a few months ago.  Though I have been it for decades now with the old will as well.  

Unfortunately, not my first rodeo. Did this with my dad and my husband's grandmother, though he was the one who had her power of attorney/medical directive stuff. 

Edited by TexasProud
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Oh man, this is a huge job.  I'm sorry you all have to go through this.  Did you get signed up on all of the patient portals?  I've been known to take my computer to these things and make sure I'm all set up with access before I leave the building.  I know with Johns Hopkins, it's really easy to get access IN the building, but nearly impossible once you leave.

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2 hours ago, KungFuPanda said:

Oh man, this is a huge job.  I'm sorry you all have to go through this.  Did you get signed up on all of the patient portals?  I've been known to take my computer to these things and make sure I'm all set up with access before I leave the building.  I know with Johns Hopkins, it's really easy to get access IN the building, but nearly impossible once you leave.

Yeah, mom's email doesn't work. This weekend, my computer programmer son is going to get on my mom's devices and get her email to work. (My messages were not going through to her. Actually, no messages are.) I tried to reset passwords and establish connection to them, but without her email that wasn't possible. Then, when we go on the 30th, yep, I will take the computer and try to establish access.

 

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Update afternoon

I really, really love this doctor and the team. They called me this morning. After my email, they called mom yesterday and faxed the stuff to her. They were calling her this morning to see if it made it through to her. They emailed me the procedures. Turns out my mom is having the CTs of pelvis, abdomen, chest with and without contrast in between the injection and the actual bone scan, which is what they had planned to do all along just to get all of them done while she is there.

They were contacting the place that does the liver biopsy to get info/instructions to fax to mom and email to me. I can call anytime. LOVE LOVE LOVE this practice.

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Praying for you. There is a lot happening right now.

I would suggest that you get a HIPAA release form signed and filed. Her doctor's office should have electronic medical records. There is usually a process for establishing proxy access to her electronic medical record under your own login. I would also say it would be a really good idea to get a Health Power of Attorney signed as well as have her do an Advanced Health Directive so that her wishes are made clear.

I don't know if your mom has a revocable living trust with provisions for someone to take over her affairs with no interruption. Otherwise, getting a financial power of attorney signed would be helpful. 

 

Edited by calbear
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4 hours ago, TexasProud said:

 

Yes, if not before, when we go back on the 30th for the diagnosis, I will have them make me the primary contact.  I am not sure my mom could navigate her phone to put it on speaker. I will make sure I am there for appointments. Already moved my yearly ob/gyn because it was on the 30th.

I live 2 1/2 hours from my mom. This week I have some appointments: well check up, cavity filled, etc and some last things I need to do for my internship that involve other people. After the 28th, all that is done, so I may just move in with my mom.  We will see. Some may depend on what the doctor says on the 30th. 

I was going to ask about moving in with her, or having her and stepfather move in with you, whichever of you is closer to good doctors/hospitals/etc. I know your DH is going to be gone for a while, so while he is gone, you being there with her might make the most sense. Or, if finances allow and your mental health would be better, getting a short term rental for a month or something, in her area. 

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2 hours ago, ktgrok said:

I was going to ask about moving in with her, or having her and stepfather move in with you, whichever of you is closer to good doctors/hospitals/etc. I know your DH is going to be gone for a while, so while he is gone, you being there with her might make the most sense. Or, if finances allow and your mental health would be better, getting a short term rental for a month or something, in her area. 

Yes, definitely will move in. They are easy to live with. That won't be a problem. Dh is probably delaying his trip, though that is still in flux. He might delay, but go last two months of the year if things look ok. May go now and come back after a month. Considering all options.  I would ask our oldest if he could just continue to work from our house rather than going back to his apartment (lives 4 hours from us) so he could take care of our animals. We have two calves, a dog and a cat.  I am waiting to see what happens on the 30th.  I will also consult with my sister. She is working remotely as well many hours from here. She is also an empty nester. So we may make up some kind of rotating schedule.  But she lives 19 hours away, so...  I don't think flying is a good idea, but it would take her 2 days to drive. Anyway, we will work through that.   She definitely needs to stay where she is for medical care. If she lived here, we would be going there for her cancer stuff anyway. Our hospitals are great for normal stuff, but for advanced cancer not so much. They tend to send people to the Metroplex where she lives or Houston.

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2 hours ago, calbear said:

Praying for you. There is a lot happening right now.

I would suggest that you get a HIPAA release form signed and filed. Her doctor's office should have electronic medical records. There is usually a process for establishing proxy access to her electronic medical record under your own login. I would also say it would be a really good idea to get a Health Power of Attorney signed as well as have her do an Advanced Health Directive so that her wishes are made clear.

I don't know if your mom has a revocable living trust with provisions for someone to take over her affairs with no interruption. Otherwise, getting a financial power of attorney signed would be helpful. 

 

See post above. I have all of that.

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As much as you are exhausted from caretaking, I do wonder if being there and helping your mom will help with some of the "what do I do" and the feelings of isolation you are dealing with. (not feelings...but actual isolation. I worded that badly)

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