Just Diagnosed- Get Prepared
My breast cancer was diagnosed in Jan 09. My husband was dx'd with lymphoma in April. The following are some things we learned on our journey. I hope they help. Rather than rewrite everything in sequence, because I missed putting the fax in the rewrite of the outline, I'll put it here. I strongly recommend you get a fax machine. In the very active phase of our diseases, not uncommon to have sent several faxes a day.
VACINNATIONS UPDATE ASAP after diagnosis- shingles, pneumonia, tetanus, whopping cough. I'm concerned right now about reports being circulated about problems with the flu vaccine. Personally,, I won't be taking it until further studies are completed.
DENTIST check up asap after diagnosis. Generally, can't be done after chemo and radiation treatments start
A. Monthly Planner, I prefer the kind you can read 30 days at a time. Allows you see what is going on for the the whole month. More efficient than a 7 day planner.
B. Monthly Planner Contents: place names and addresses in the address section of the planner. Write, doctor and secretary name, phone, fax, office hours, address. You, also, can take a business card cut off edges and tape it in. Add all your health insurance info, inclusive of id#,group#, phone#, address. Add anyonesname that you have talked with that affects your condition. Then make a computer copy of all the same. Make individual lists inclusive of all information i.e. a doctor list, insurance list of contacts. Saves time when someone asks for a list. AND the dreadful occurrence should you loose your planner. I was obsessive about putting, this in the carry binder. I kept binder and planner near phone for quick access for medical phone calls.
C. Ring Binders for Information Storage: 1.medical information: divide by history & physicals, lab work, diagnostic imaging, consultation visits and report. 2. insurance: explanation of benefits (eobs), and bills. 3.Educational: information that you want to retain, organize to preference. 4.Employment: policies, communications from work, consents, disability: short and long term. File any communications from employer and disability carrier. 5.Social Security Disability: application, communications, award letter. This will keep you from drowning in paper and make things easier to find. We had nine binders between the two of us for2009. Label binders on front and side
D. Carry File Binder: It is very similar to the binder sent out by the breast cancer society, but more sturdy. Put copies of following testing that were SUPPOSED to be already presented to the next doc. It's not a duplicate to ring binders. Copy of initial testing and current informatiom from at least six months. Helpful when doctor hasn't received expected information. I was able to hand it to them. Make sure you get back your original before leaving any office
1.Information to include in binder:
a. Before most chemo's/and radiation, they will want you to have a bone density. Put in the first
bone density ever done, this is your baseline. Put in last study done before the radiation. Have PCP evaluate this in depth to track baseline compared to newer studies. Keep for the remainder of treatment. Bone density is adversely affected by many treatments. Needs to be reviewed as new studies are done, by comparing to older studies
b. Blood work--try and have labs all drawn at same facility. Ask them to run them so each week or month are in columns side by side. This makes it very easy to follow trends. Our Oncology center does it this way. Also, make it easy to keep only last 12 months on few pieces of paper. If you go to other specialists, write their lab results on this lab profile. Take labs no longer needed in the carry binder and put them in your medical into ring binder.
c. Keep one copy of you bc pathology report in this carrier.
d. Keep copy of genetic studies
e. EKG, echocardiogram, stress tests
d. xray, ct, pet scan, bone scan reports --most recent report
E. Diagnostic Imaging Reorts: ask radiology center to cut a cd. Pick up only after docter report added. You'll probably have to wait a week, but it's worth it. Doctors not up to date on how to use cd's will ask for films' You then have to go to the facility and pick up. BUT if you give the facility, that has your films enough notice, they may deliver them to the doctors office for you.
They always attach a paper copy to the film, but over time they can easily get lost, Getting and keeping a copy of these xray papers is important. Avoids fraud when they say they can't locate previous records. It's amazing how many screw ups are covered up by the phrase--"no previous films to compare to".
Story: I found out they were watching my bc site for years when I went back through old records(10 years approximately) . BUT then when it became an issue the mammo's "had disappeared." They denied they had been watching anything. WELL I have sequential copies that states they were watching, but I haven't decided what to do yet.
F. Medication/ Allergy List: carry list in folder that you can hand them at entry of new visit or follow up. It gets old rewriting each time. Get original back before leaving office.
G. Mileage: list from day one, to and from any doc/pharmacy/diagnostic center for tax purposes at end of year. Use a page in the monthly planner. Top of page:destination, miles(determine from mapquest. For taxes run copyof Mapquest, include in tax file. Make file for mapquest copy. I've used the same file for 3 years. Recopy for next years taxes.
H. Receipts: Container to put in all receipts related to out of pocket payments for tax purposes. Copies of all checks written for medical treatments, pharmacy, otc items. Keep separate from household stuff, avoids sorting at end of year.
I. Pharmacy mail order: Use your insurance companies mail order company for drugs.We made a huge money mistake by not using the insurance companies designated pharmacy-HUGE. At the end of the year ask for a computer run of of total spent at each pharmacy for tax purposes. Easier on tax person.
J. Consultation Appointments: When someone says" Trust me we always get the information there-" DO NOT believe. Walk into any consultation with the informatin that the consultant needs to do their consultation. Saves you from a wasted visit and wasted money. Make a packet from your originals consisting of initial History and physical, last set of doctor notes, xray fims/cd's, labs 6months , genetic studies etc. Remember, I said make a packet, do not expect to get originals back. Big centers don't have time to make copies of your originals.
Story: One time after a 2 1/2 hr drive to a big cancer center. They had nothing. This was after the cancer center guaranteed they were sent. I called the day before to the consultation center, the responding person guaranteed that they had them. I faxed a copy of all the same data myself. Think I was safe, no. The big time specialist opened the file and nothing was there, not asingle piece of paper. BUT I knew this would happen. So, I had made a second package as described as above. Did this when I was preparing the fax that I sent, the day before, with a cover sheet, identifying myself as patient and referring doctor and addresses. I handed the doctor every single piece of data he needed. Then after making my own package, I refiled all my master copies in my carrier or ring binder as applicable. Being able to hand that package to the doctor can get things moving fast. Of course, the ideal would have been for them to have prestudied the data, but I think that falls under magical thinking.
Consultation Visits -follow up to make sure they send their findings. With all they have to do, it can take overlong to get their written report. You may not have the time to loose. Add copy to carry file and ring binder
K. Ledger Book: Record debit/cash payout, as a company uses to see where the money is flowing. Can help if you find grant money. Section by month with sequential household and medical expenses. or separate sections for household and medical.--This sounds good, but I couldn't keep up with it.
L. Social Worker Consultation: Visit to see what services and money etc. you are eligible for at the beginning, i.e right after diagnosis or first treatment. If they ask you questions that you are uncomfortable answering, ask if they are required i.e. mutual funds. Don't be afraid to say that you are uncomfortable. The social worker will inform you what is required and what is not required.
Story: We did not have this type of visit until 1yr 1mos after everything started. We were eligible for all kinds of assistance and missed out. i.e American cancer society will assist with pain medication, but will not cover retroactively. The Lymphoma society will assist and will cover some things retroactively if it's in their calendar year. BCO main board has numbers regarding assistance programs.
M. Notice of meeting copay limit: Watch for the statement on your EOB's that says you have met your copays/deductibles. Have facilities scan it into there systems or copy. Get original back before leaving office. Keep in carry file.
Story: We missed mine by 2 months and my husbands by a month. We then had to recollect from each provider. If it was the reverse, they would have been sending us to a collection agency. Have a copy in your carry binder. Ask them to enter it into there system. This may still not work. Thats why you want to carry a copy that says you have met all copays and deductibles in your carry file.
N. Authorizations: When a company is checking on your copay, and you have meet your copay/deductibles. The question, they need to ask is" HAS THIS PATIENT MEET THEIR COPAYS/DEDUCTBLES". VS WHAT IS THE COPAY". This is a good time to pull out your statement that you have met all copays/deductibles. Obtain authorization number from insurance company before having a procedure done. Otherwise you may get stuck with a big bill.
O. Cancer fax file: You will be faxing the same people all the time. Make a file. Obtain someones form that has the HIPPA privacy statement on it. Black out there company name. Write the name of your contact person, write in big numbers their fax number, your name and phone, then below where all the lines are just put the date your sending and re:X i.e. lab update. I've used the same sheet many times. Saves time /paper/frustration of making out knew form each time. Three and half years later I am still using the same file.
P. Review Accuracy of Medical Information: of all physician history and physicals, and notes. One doctor put in a serious WRONG diagnosis and it took six months to get it corrected. Once they screw up, it's in the computer world and will affect all future contacts.
Q. Mental health: PTSD and depression are a problem of dealing with cancer. Consider working with a therapist early on. Please, don't hesitate on this one. This one didn't hit my radar until I realized both of us were seriously depressed.
R. Self Preservation Care: Get prayer networks going, pamper yourself, exersize as allowed, gather as often as allowed with friends and family. During chemo avoidance of contacts in a reduced immune state is necessary. Keeping contact with close ones will dispel the feelings of required isolation that is for your own safety. Read a lot of jokes, tell alot of stories, try to do the things that make you happy. Many inspirational books available
S. Legal Issues: You will probably need a lawyer to review many of these. There are online sites, but risky if you miss something or don't get it right. The key is to set up every thing as to avoid probate. This is practical. You could pass at anytime from BC or falling down a set of stairs. Avoids chaos.
1. Trusts(should also have a will even if you have a Trust, handles unforseen things not covered in the Will), Wills, Durable Power of Attorney(DPOA), Health Care Surrogate Power of Attorney, Living Will are up to date.
2. Names on bank accounts include spouse. May want to include adult child name. This may be important if you can't do bills yourself. Set up as much as possible in online banking. Downside if someones's sued your assests may be attached to a settlement. Better to be handled by DPOA.
3. Beneficiary designation: Check all insurance policies, banking accounts, mutual funds, checking,savings, money market funds, compushare for beneficiaries are designated per instituition policy
a. Transfer on death TOD
b. Pay on death POD
4. Review Deeds to Property and Assets: house, car, boats etc. and rights of inheritence
5. Safety deposit box:determine signators for access. Location of the keys.
6. Have list that identifies all assests, and a second list of what's in the box. Allows POA/Signator/ Executer to know what assets you have and what's in the box.. Essesntially, works as a checklist.
7. Ma111 's thread an excellent resource " A place to talk to death and dying issues" . It's in Stage IV Forum.The information is universal to all. Preparation is for all. This was the lesson learned from 9/11. Many laws in the USA were changed as a result.
T. Immunizations--As soon as you get the diagnosis and BC plan. ASK about immunizations before chemo/rads------FLU, Pnuemovax, Shingles vaccines. These can't be given in a reduced immune state.
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The below link is to MA111's Topic: A place to talk death and dying issues. Pg 25-26 have a synopsis written by BON a BCO member. Being prepared should be considered by all, not just when illness strikes.
http://community.breastcancer.org/forum/8/topic/770023?page=1
This link is to atopic thread "TIPS ON SHOPPINGLIST FOR CHEMO" Great and practical info,very little overlap to this thread--definitely worth a read.
http://community.breastcancer.org/topic_post?forum_id=69&id=706846&page=1
All these statements are from experience, that I won't give more details than I have. I'd be here writing forever. Have faith, have hope, cry and rant when you need to, love alot.
Blessings and prayers - sassy
Comments
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It sucks to have to go through this, but not having things organized to your usual level of organization just adds to the stress. The amount of paper that starts flowing your way can be daunting. Having some idea of how to manage can help.
I can add a newly learned item. Check with the cancer center that your working with to see if they have anyone assigned to apply for grants for whatever you might be eligible for. We found out 4 months after the neulasta copays were building up that our cancer center would do the paper work immediately after we said we were falling behind in payment because new insurance didn't cover it. Now they are all covered YEAH!!!! that amounts to close to $ 2000.00. good luck!!! Please post any new ideas or links to assistance money.
Edit:6/6/13 Found two new web sites that are a must to review. One is on saving money on drugs. Start with 'home" page , then the really helpful page is the "First time users" Pg. Link is to home pge.
http://www.needymeds.org/index.htm
This next link is dedicated to most of the need to know info regarding work and cancer. BCO has much information on the main board, but this link is much more expansive
http://www.cancerandcareers.org/en
Per my resource: This is how to make the needymed.org website work or other resources work for you while receiving cancer meds in a cancer center, SPEAK UP and let them know you need financial help, best to do when you have initial contact with CC. What they then do, if they are connected like mine, they go through their resources the same we would, but would be contacting as a a provider. Grant money or assistance can be available under all kinds of circumstances. Do not assume you make too much money or b/c you have insurance, money is not available. If say you get turned down initially, rechecking with organization is a good thing to do should you're circumstances change.
Edit 8/15/2013: submitted by Shellshine. Link is to a website Re:Soccial Security Disability
http://www.disabilitysecrets.com/social-security-disability-breast-cancer.html
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Sas...these are great ideas! The BC center had given me a planner from Cancer 101....I carried that with me everywhere! And the tests....I loved all my Drs...but they still would miss forwarding on an occasional test result.
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Thanks Paige,
Please add the things that were problems for you, what you have learned, and what you did to solve them. Big ideas or small ideas. What may seem small to one person may be an ahhh moment for someone else. Sas0 -
Get a fax machine!! I spent way too much of the time right after dx standing around kinko's trying to fax things here and there- best $30 I spent in all of this. You will need to fax things, a lot. It's how the doctors/hospitals do these things.
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Retrospectively, I would have taken one of the credit cards and made it speciffically for paying tor anything related to the cancer. I think it would have made tracking easier, and the tax process easier. Only a once a month statement to review and file. Instead i have little receipts, big receipts, nonuniform receipts that i have to figuire out who and what. Yes, I think the one credit card thing would be the way to go. Maybe the different societies could work something out with a really low interest rate.
Does anyone see a potential problem with this idea that I'm not picking up on?
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Thanks. I didn't realize you could write all this cancer stuff off.
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Thanks. I didn't realize you could write all this cancer stuff off.
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Hopeful 34, I'm not an expert but save all your receipts related to medical, track mileage which is easier now with mapquest. Anything related to medical can be itemized . A GOOD TAX PERSON IS A NECCISSITY(sic?). They will tell you what is allowable.
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DEfinetely would dedicate a credit card to nothing but medical things. Everyone that wants info related to medical bills wants receipt of payment. This way they only have access to medical not anything else. Very helpful if you are able to find any grant money. Keeps all your other expenditures private.
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I know there are people out there with great ideas. Please add ideas. Money will eventually run out no matter how frugal in life you have been. WE need ideas on how to save money in this time . Go girls keepers of the purse and checkbook. We have enough to deal with without money issues and disorganization of usual household bills. HELP would be appreciated by all. Thanks Sheila
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Thanks Sheila! These are wonderful ideas. Thanks for the reminder about mileage. My Breast Center gav me a notebook that is divided similar to your suggestions. The designated credit card is also a good idea. My BIL and SIL did this when they underwent expensive fertility treatments. If I think of anything to add I will post. I tend to be obsessive about organization.
Kim
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Thanks Kim, apppreciate you posting. I believe there are many out there with great ideas.
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These are such great ideas. I have just gotten myself my own carrying case I will take every where. I also just got a weekly calendar. I really like the idea of using 1 credit card to pay all bills. I didn't even thing about keeping track of the milage.
Thanks for the great advice.
Karen
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Thanks Karen, Please remember to post any new ideas you have. Good luck during your journey.sheila
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NEW ---Thought each partner should know how to do the banking. I'm learning how to online banking. AND only bankers think they make it simple.
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Sas-
Wonderful information, as always, just a couple of questions. I haven't read all the posts so maybe the answer to my question is in the posts or maybe its the wrong forum. How do you go about applying for Short Term or Long Term disabilty? Where can you find a social worker to help with financial assistance ideas? We have a disc of the radiology visit but there were films too. What would be or how would we get a copy of the X-ray papers? Is this just an explanation of the xray? I'm sure I will have more after reading posts.
Thank you,
Marichai22
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Yes more questions if anyone has an answer. Should we keep of gas reciepts along with mileage or how does the accountant decide how much money you spent on gas off of your mileage? If you pay all your bills off of one credit card won't the interest start to kill you after a while or is there a specific low interest rate credit card?
My suggestions would be keep a track of which office you call (ie insurance company, Doc's office) when you called them, who you spoke to, and maybe a short explanation of what you spoke about. Probably, not all conversations but specific ones. For example, we were told the insurance would cover a visit for a consult and the facility said they would take our insurance then three months later we got a bill for $600.00. We had to write an appeals letter explaining the situation which was hard considering it was 3-4 months ago. On that note I would suggest calling the insurance company to make sure visits or hospital stays are covered because it turns out the Dr's office can sometimes drop the ball there too from time to time. I don't currently have any other suggestions. I've been managing by putting pathology reports, EOB's in one folder but in the last month it has been bulging out. Thanks to Sas I will definetly get to working on my binders to help organize it more.
Thanks,
Marichai22
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Marichai, thanks for posting
short term/longterm disability insurance is insurance that you have independenttly purchaced through an insurance company or payed for as a benefit through work.The BCO has a section on that through the main home page I believe.
Start the process for social security disability. The clock starts running on the day they receive your application. Call local Social Security office- federal government office
Ask your PCP or ONC to make a referral for consultation by social worker for evaluation of available resources and financial resources. They will then contact your insurance company and the insurance company will designate who and how they make contact with you. Or call your insurance company direct and ask what services they have available. Ask for a cancer case manager to be assigned to your moms case and that they call you as soon as possible.
Contact your County Social Services office and ask them what services are available.
Medicare can be contacted on their web site or 1-800-633-4227. American Cancer Society 1-800-ACS-2345. Patient Advocate Foundation 1-800-532-5274. Cancer Care 1-800-813-4673. These are just a few. A social worker will have much more.
Copies of xray reports may be obtained from the facility that the test was done at, through their medical records office. Your mom will have to go in and sign a release form. and produce a picture identification. If she is unable to do this whomever has power of attorney can obtain records by presenting their POA documents and picture ID. The facility can charge per page a fee allowed by law. Many diagnostic imaging facilities will provide a cd disc. wait until the report is added to the disc before you pick it up. This may take up to a week.
All copies of patients medical record can be obtained in this way.
Many oncology centers provide copies of the test they have received from other facilities ---ask
Mileage is deductible according to preset rules by the federal government.Ask your tax person
Talk to your tax person about gas receipts, they may be used in some fashion iIm not aware of. Please come back and post if your tax person says they can be used.
CREDIT CARD--pay off completely every month and you won't have to pay any interest as long as it payed off before due date. The idea behind one credit card is there is one statement with all expenditures. You make a copy from your on-line banking site or keep your hardcopy received in the mail. Recommend to pay off monthly so you don't incur interest.
Your recommendation of checking with insurance company re authorization is perfect. Put the companies phone number not only in your calendar book. Put it in your cell phone, and on a card by house phone for quick access. If a company that is contracted with your insurance does not get preauthorization, the insurance company has the right to deny the bill. Contractually if it was their responsibility to get the authorization and they didn't , they cannot turn around and bill you. If they do call your insurance company.This is also why it is important to keep all EOB.s THe EOB tells you what you have to pay.
It sounds like you definitely needed preapproval for that consult visit, because you were told to write an appeal. Keep going through the appeals process. But if you didn't follow the insurance rule --you may be stuck with having to pay the bill. MY guess is your doc sent you to an out of network doc for 2nd opinion and your doc didn't get the approval. Keep working the problem. The worst that can happen is you have a 600.00 bill Thank god it wasn't thousands. Some lessons are hard.
Always get the authorization number from the insurance company for whatever you are calling about. Write it down and who you talked to date and time
Great questions Mari
Thanks sas
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Mari, thanks so much for bringing back memories forgotten about caring for another family member. I took care of both parents and a dear aunt. I learned so much from those experiences that is different than caring for yourself. But much of this will help an individual prepare for themselves.
There is a type of small accordion type file---the one I have on hand is called a six pocket file.
1. carry your POA power of attorney document or gaurdianship papers--original, health care surrogate declaration original with you.at all times. You never know when you may have to use them. If there is a DNR "do not resusitate" form same thing. Never let anyone keep your original, they can scan/photocopy and then return to you the original. Keep in six pocket file. With a "DNR" an original has to be posted in a visible place in the home. So, you need to have the doc sign two originals. In the three instances that I had this responsibility, I exercised the resposibilty as need presented. When each of the persons, I was responsible for were, had their mental faculties intact--they spoke for themselves. In each case, there were times that they didn't and I had to direct their care. For example, after placement of a pacemaker on dear aunt , she came out of anesthesia with an altered mental status. They did a CT of the head. They found a brain tumor and wanted to do a brain biopsy. Dear aunt and I had discussed these general types of occurrences. Her stated wish was no. So, I refused the procedure. She recovered from the change of mental status without event---nothing happened. She could have had the brain tumor for an unknown period of time perhaps a lifetime. She had never had a head exam. The change of mental status was immediately after the sedation for the pacemaker. She was pleased I had followed her stated wishes. Three things occurred here. 1. we had discussed what she wanted done in different situations. 2. the proper legal documents gave me the power to talk for her. 3. the documents were on file. You can take your original documents to the hospitals that your mom would be taken to in case of an emergency and have them prescanned into her file. This prevents any delay of establishing your relationship to her legally and your right to know her status in an emergent situation. But still make sure your documents are on your person, not all hospitals are as effeciecnt as the next one.
2 In taking care of their bills. Online banking is a blessing, autodebit for utilities and Auto pay of reoccurring bills reduces your stress of paying their bills. If they have multiple banks that they deal with --try to consolidate into one bank. Choose the bank with the greatest security in checking your credentials. Dear aunt dealt with six banks, it amazed me how lax some of the banks were on checking and validating my documents of responsibility.
3. Get business cards from everyone you deal with because they have contact persons name address, phone, fax.--put in six pocket file
4.Know where the will, prearranged funeral documents and burial documents, life insurance policies, gift lists outside of will, deeds to property
5 Make a funeral box with the clothes etc the dear one wishes to be buried in. The funny story with dear aunt was she didn't want a cetain pair of shoes. I couldn't resist asking her why. She said " I was never comfortable in those shoes". I said "I don't think you'll notice". What a laugh we had at that one. Remember to identify if any jewlery is to be removed.
6.Have Tod or Pod on all appropriate items of monetary value. TOD transfer on death. POD pay on death. Applies to bank accounts, mutual funds, cd's(certificate of deposit)
7.POA should be a signator on the bank account in order to do the banking. If there is a safety deposit box you need to be a signator on it and have a key.
8 Register the death certificate with the county of residence. You will be asked by the funeral director how many death certificates you want. A few will do. In most cases people needing it to complete whatever can make a copy, but you may have to give originals to some. Anyone reading this may offer a suggestion. Time has caused a memory lapse on this.
9. Find out if all heirs are living, the black sheep had predeceased dear aunt by five years.
I'm sure this may seem bizarre to some, but been there 3 x's. Being a POA for someone is a tremendous responsibilty and being prepared is important. I'm not a lawyer. So, seek the advice of a lawyer re: all above items.
Again Mari, Thanks for bringing these memories back, I hope they help. sas
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SAS,
Its kinda sad to think about these type of things but very practical. As always very good information much needed. So how can you get a POA? Do you NEED a lawyer or can we have her write a letter and get it notarized?
Thanks for being so organized and willing to share your wealth of knowledge.
Mari
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SAS,
As requested I have posted our chats. Hope this is helpful for folks if they are going through the same thing.
sas-schatzi said:
Mari, How are things progressing? I rethought my response re: the credit card statement because in rereading I thought if I were reading it from your point of view I would be offended. I edited my response and I hope you go back and read the edited response. I apologize if i gave any offense. I as well thought, when I wrote it it would be great if someone issued a low interest rate card for all cancer patients.
Hope things are progressing well with your mom. I understand only to well what you are going through in trying to take care of her needs. I took care of my mom ,dad , a dear aunt and now my husband. You can drown when you don't know what to expect. You learn to look at friday 5pm with trepidation because you can't get anything done until monday. AND if something changes in your loved ones condition , your resource maybe ER vs your doc of choice. Which does bring to mind a few other suggestions. Rather than write them here I'll go back on the thread. of Just diagnosed _get prepared. Thanks for bringing the memories back. Again I apologise if I gave any offense. -sas
Hey Sas,
Well things are kinda starting to get stressful it seems. Don't worry about your reply regarding the credit card. I didn't think the response was offensive at all. I haven't read the edited response yet but I will, promise.
Yesterday night the wound VAC wasn't working and I had to remove it and place gauze on it. I wasn't very calm during the whole process and stressed my mom out. Also the Dr says she will be out for another 4 weeks from work and I'm worried that she will run out of FMLA which only gives you 12 weeks (she already has 4 weeks out). So that means she would lose her insurance. I realize we could get the COBRA insurance going after she is let go but it would be nice if we didn't have to do that.
The Dr doesn't think it's necessary to get a home health nurse because she isn't restricted to home she goes out to the store ever so often. I haven't started anything on Social Security but my mom doesn't want me to because she says they will ask about savings n all. She thinks we should use that as an absolute last resort.
My sister and I take my mom to the Dr's appointments and apparently we haven't been communicating every detail. At my mom's last wound change they were suppose to put foam inside of the wound to keep it from fusing together to help with reconstruction/expander/implant. Well they didn't and my sister was pretty upset and thought it was my fault for not picking up that detail in the voice recording she sent me. So yea we are on the verge of drowning. Now I'm thinking maybe it wasn't such a good idea to do the immediate reconstruction because we don't even know if she will need radiation which could damage the skin anyway and ruin the reconstruction. The surgeons didn't think she would need chemo or radiation but I finally decided to set up a consult with the oncologist even though the plastic surgeon said she couldn't do that yet until she heals.
I hope this isn't too much to dump on you, but I needed to vent and write this out. There is no obligation to respond just needed to vent.
Thanks so much for listening,
Mari
sas-schatzi said:
Mari, so glad you weren't offended. Good.
I wish this was posted on the skin/cap thread, because it points out why there should be homehealth. With HH you have to be homebound if you are under medicare. But medicare allows you to go to doc visits, church, bank, grocery, hairdresser. With commercial insurance they probably each have their own rules. Mine I would actually go to their place of employment. PC WRONG. Didn't mean to hit caps , but take it as a sign.
Social security application----We can't predict the future, , I would have applied from day one.They don't ask about savings or mutual funds. All they are interested in is your tax return from previous year. Start now if you become concerned you can stop the process.
I didn't say on the thread because I didn't want to overstep bounds. Frankly, I can't believe that an Onc is not involved. They are usually involved day one of dx. Yours is the only case I've heard of where they haven't been. WRONG WRONG WRONG. Get ONC as you are doing asap. Mari I hate to ask you to repost on the thread because it's alot of work. I know I'm a two finger typer that has to look at the keyboard to find keys. BUT where are you located that a surgeon and PS don't want to know plan of ONC and are proceeding with everything without a plan is unheard of--unconscionable(SIC)
Your sister is wrong. Neither of you should have to know when a sponge should be placed. The person doing the dressing change made an ERROR BIG TIME.They are supposed to be following doctors written orders. I suggest you take it to the highest authority of the building you were in, and to the parent facility. This is a big deal-- trust me--Big ERROR
Please tell me moms age. Tell me your location. city/state. Repost on thread. I wish there was a way to transfer this , but i don't know if there is. There is too much here that should be shared with everyone.
Look at BCO's main page it has a section that talks about work and job and FMLA. It is a must rea
Mari I wouldn't be doing this if I didn't think I could help. WE had two cancers in one house last year ---reread the top part of my thread post. We have regretfully learned to much about failures within the system. I added a whole post on things that would be helpful to you and your sister. I was POA for three people. It's work and tiring and daunting and mind blowing and awful when unprepared. All of which I had to learn as time went on and problems occurred----I had no guide. Please get your sis to read this PM and the thread.
Again can't believe no ONC involved ---ERROR -----
YOU have my permission to print this out and share it with her. sas
marichai22 said:
Sas,
Thank you for your reply. As always you are so so helpful. Thank God for you and your posts. I would love to repost this. I was just afraid to shock, panic, or scare anyone. I have a tendency to not have any tact and just blab whatever frantic thing I'm panicking about that day and it has scared and even offended people in the past. Should I just copy and paste the whole message from the beginning? I agree it would allow folks to learn from our mistakes so they don't have to run into the same chaotic mishaps. My mom is 53 years old. She doesn't currently have Medicare just health insurance but I think your right I will start the SS application. I'm going to read the FMLA information on BCO website right now. Lot of things to do. I'm glad I got the ONC appt. set up. I think you are so so right it would have been nice to have the ONCO on board from the beginning it would have been nice to get a clear picture so we knew how to plan everything out.
Thanks,
Mari
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I routinely get copies of EVERYTHING from every visit and hospitalization. I've got 2 four-inch 3-ring binders will the records and am looking at starting a 3rd. There are a few things that I make multiple copies of (last mammogram, pathology and operative reports, most recent lab work, allergies and medications) that I carry to every appointment. That's an excellent practice to get into. You'd be surprised what you find out in doctor's appointment notes that they never say out loud to you.
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Mari, Thanks for being patient. I pm'd you re:my Dh husbands trouble , please, continue to keep him in your prayers as I keep your mother in mine. I will be in and out. Native Mariner and She are watching the site. They have great strengths and insight on many subjects.
Your question on how to become a POA is different in each state from requirement that it be completed by lawyer to simple notary public. Having this paperwork, plus Will, plus Healthcare Surogate, in place is very important. I would not let my son go off to college without this paperwork in place. If proper paperwork not complete, you have no power to direct a loved ones care when they cannot. Everyone thought I was overly something. You and your sister need to have these papers in place, by what ever the rules of the state you are in. All family should agree who is to take on the responsibility. There should be a sit down with mom and you and sis, and any family members that your mom wants present and have a serious discussion on what the future holds. What are the wishes of mom in the worst case scenario. In this discussion, all should clearly understand moms wishes. So, in the situation of a turn of events, whomever has taken on the responsibility is not put under stress by family members to do something different. If you have accepted the responsibility, you can refer to the dicussion with mom. It will take the stress off of you. The Schiavo case and the Quinlan cases are landmarks. Refer to my story about Aunt Mary. Need to leave now for sleep__Thanks, Nameste SAS
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Sas is right about getting the papers in order sooner rather than later. I most states you can get free Advance Directive forms--these combine Living Wills, Healthcare POA, organ donation, and sometimes even funeral/burial instructions. Any hospital or clinic will also have them available. Different states have different requirements regarding notarization, but that info will be on the form. Durable POA is the type of POA that can manage finances and other non-healthcare related issues as well as health care decisions. Healthcare POA can only make decisions regarding health care. Don't forget that the Advance Directive needs to be given to your doctor and to the hospital to be followed. In Maine an Advance Directive/Living Will is not official UNTIL a copy is filed with a doctor's office or a hospital. Once filed, it is binding on the health care providers and family members cannot make the docs do differently.
Durable POA and estate wills can be done through online sites for a moderate fee, and there are software programs that can be bought that are very inexpensive that will help you write a will. Most states do not require a lawyer to be involved. Usually an estate will needs to be notarized, but that is easily done at your bank or doctor's office at no charge.
Every oncology clinic must have access to social workers. If one hasn't already been assigned, ask to speak with one. A social worker can help with all of these types of arrangements, and usually have all the forms right in the office.
Another recommendation I would make is to have another person's name put on all the bank accounts. I put my mother's name on mine so she could access my accounts if necessary while I was in treatment. My mother has put my name on her accounts for the same reason--so I can access the accounts if she is unable to. This does not allow me to access her account after she dies, however, the account will be frozen until the will is probated.
All this is distressing to talk about but it really does make a huge difference in family stress levels if the patient can't speak for him/herself.
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Native Mriner --please tell me why your moms account would be frozen if she passes, until probated? My understanding is that you are co owners of the account when both are signators?
Many great points as usual Nm !!
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It may be that this only happens in Maine, but when someone dies thier bank accounts are frozen until the will is probated and the bank knows who is the legal inheritor (and thus owner) of the accounts. The bank told us that it's because sometimes the co-owner of the account isn't the inheritor or executor of the will. The executor or inheritor becomes the new owner, and has to verify if the second person is still a co-owner or not. There have been incidents when a person put one child on the account because that child was local or was taking advanatage of the person, but the will named someone else as executor/inheritor. The local child cleaned out the accounts before the will was probated, and it turned into a huge legal issue when the executor/inheritor tried to pay bills an the money was gone.
It would be a good idea to ask at your local bank/credit union and find out what the rules are in your location. They may very well be different.
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Sas, this is a terrific thread with a lot of important information.
It would be a good idea if you pm the moderators and ask them to pin this thread - I think it has to be tha author of the thread but I could be wrong.
Leah
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Sas & Native Mainer,
Thank you so much for taking time to explain the POA & Durable POA. I think that would be very difficult to deal with if things went wrong all of a sudden and we had no say in my mom's care or her finances to pay for her bills or needs. I think I will be calling the bank/credit union to find out what the rules are as well as getting things in order as far as POA.
SaS I definitely have been thinking about you and your husband. I will keep you both in my prayers. How are you both doing?
Mari
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I kept a notebook of various things I needed for doc appts like list of all current meds, others docs names/addresses/numbers, insurance info, etc. And I kept a small notebook for all my questions and their answers. I typically carried only what I needed to various appts. I used a simple tote bag and added a luggage tag with all my info on it (name, address, cell phone) in the event I left this bag somewhere along my path for the day. I never did forget it, but if I had and someone could not have quickly identified me, it would have meant so much more stress for me.
Thanks for all the other great ideas.
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Nm --thank you as usual----I will be making phonecalls also. One thing I know for sure that happenned with many banks and credit unions after 9/11 was you were able to add POD or TOD to accounts that previously was not allowed. It took a few years for banks to set up rules. WE did this with our credit union which is our primary institution. But we did not make a provision for something happening to all of us.
I agree that it can be a probelm as you have identified. I had three cousins and one 2nd degree aunt from three different families that did just as you described to the detriment of all relatives. Three of the cosignors were were also executors that just raped the estates. In each case they were cosignors/executors for bachelor uncles and one single great aunt. One was a cosignor excutor for her fathers estate.
When dear aunt asked me to take over her affairs and all her money was tied up in CD's with POD. It seemed like a slam dunk that nothing could be messed with. Wrong --each CD had more than one name . Turned out one of the named persons had preceded dear aunt in death by 5 years. She had always described him as the black sheep, but wanted him to inherit anyway. The other named person on Cd was in the last stages of CA and died six weeks after her, but he hadn't told her. All of the CD went to him. But his wife, then inherited twice the amount that dear aunt meant to go to each of her heirs. I know that was not her intent, but nothing could be done. Lessons 1. make sure all heirs are really alive. 2. If the named person on The CD were ill, would the loved ones wish a change as re: inheritance. 3 IF using CD and TOD or POD as a means of simplifying and protecting against probate--use this "NAME and to the estate of_____ if NAMED person is deceased"---I asked at the time if this would have allowed the money to go back to her estate and then be probated. The bank was unsure, but that was the year of 9/11. The bank wasn't even sure it could be done that way. It's probably clarified by law now. 4. One name POD to a CD. Then I don't know what happens. If all the above applies. I do know dear aunt did not intend for the nephews wife to recieve the money. Dear aunt and I thought we had all bases covered ---well we didn't , but i learned alot of lessons.
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