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My mom was recently diagnosed with Alzheimer’s. Still waiting on results of CT scan. The neurologist was very gentle...saying the word dementia, but quietly....out of the side of her mouth she said to my sister “Alzheimer’s”. Ugh. She is on the highest dose of brain meds and the neuro said there is nothing else to be done. I’m guessing there will at least be a follow up appt with info on the CT scan.


My mom knows what’s going on and she’s severely depressed and frustrated and angry. Things have been changing for the last couple of years and it’s just getting to where she can’t handle her own meds or money or even hygiene (though this might be more due to depression).


I know we need to get legal paperwork in order. Is there a list of paperwork we should have?


Also, now what? I mean...do most people have a social worker or someone who hooks them up with services? I don’t even know what services she would need? She’s 80. Is geriatric doctor better for her than a general practitioner?


It was interesting to see that on my mom’s report from the doctor visit that it didn’t mention dementia/Alzheimer’s as an on-going condition, but simply mentioned patient care. Is that done so the patient doesn’t get upset if they see it? I’m just hoping a doctor knows what’s going on if they see her urgent care etc (she doesn’t usually like us going in the room with her).


Anyway...needing a little direction here. Thanks!

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You sound a little like me when this happened with my Mom. And I get you're new to this. But it sounds like you going into the room with her with doctor visits is no longer an option for her. I don't like telling people how to deal with their situations. But I'll say this, BE PROACTIVE. Don't wait until things unravel. Get the paperwork in place. You've come to the right place. My outcome may have been different if I'd had come here earlier. People here have so much experience with this and great suggestions.
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Sarahk60 Mar 2019
I’m definitely researching and planning and after talking with her, she seems more open to use going into doctors office with her. Progress!
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Yes, online forms are fine. Attorney's in AZ use them.
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Thanks everyone...I appreciate every single response and have to admit I’m overwhelmed with this all.

Quick question...she doesn’t own a home and her car is paid off...she only owes on credit cards. We were told by a friend who was an attorney that we could easily run off the appropriate POA forms, get them notarized and that should be ok. It’s just my sister and I , so there shouldn’t be any other issues. What do you all think?

Side note: I did discover in the doctor’s notes (not on the main page) a written diagnosis of Alzheimer’s. Will that change anything?

Can any notary approve the paperwork we run offf from online?
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Jfbtc...I’m sorry you have to go through this. Thank you for sharing your experience and advice. I have a friend who’s father was diagnosed with early onset as well. That’s wonderful that youve been able to help get everything settled, so your dw can not worry and just enjoy you and care for you. Many blessings to you!
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jfbctc Apr 2019
Hi SarahK60,
Thank you for your kind reply. I am a pretty happy guy. We were able to get things in order immediately while still competent enough to share. My hope is that others reading my thoughts will be inspired to set up the arrangements they'd like to have in the future for themselves, because there would be no speculation as to what your true desire was.
According to Social Security, a diagnosis of ALZ, or other dementia will put the patient in the category of Terminally Ill and not competent to manage your own affairs. They also consider the patient permanently disabled. My SSI went through with the help of a lawyer that Specialized in SSI Disability cases. I had my first check 52 days after the application was submitted. It cost me a couple of thousand dollars, but it was worth every penny. I will include you and your mother in my prayers. God Bless you both. John
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Hi Sarahk60,
I was diagnosed with Dementia/Prob Early Onset ALZ three years ago one month before my 57th birthday. My DW and I had begun meeting with an Estate Attorney one month before I was diagnosed with results of MRI and Neuropsych exam.I . We put all of our property in a Living Trust for my DW. We also prepared Medical Directives, Power of Attorney's, and Pour Over Wills. We then had an Elder Law Attorney, review the work of the Estate Attorney, who said everything was done perfectly according to the laws of our state, VA. I have been an advid reader my whole life and I couldn't make it through one page of a book without falling asleep or I lost interest.
I was in an absolute fog when I was diagnosed and put on Donepezil and my Neuro told me it could be 3-6mos before I really noticed a difference, and it really was closer to 6mos. I am happy we set up our legal work and my DW will not have to worry about any of the legal stuff and i gave up all interest in our property and money. My sole interest was for our legal affairs to be settled and that my DW would have the property in her name and not have to worry about Probate, making medical decisions for me, we spelled it all out in our Medical Directives, DPOA, so my DW can make all the decisions for me. I do what I can for our family, though I am less and less able. Please take as much of the load off of your mother as you can, it will in the long run, make life simpler for you.
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breaking it down:

LIVING TRUST
POWER OF ATTORNEY FOR HEALTH AND FINANCES
Take her to her tax accountant if she has one, and financial advisors now if she will let you. Maybe she won't she is scared...

When the time is right my child will be joint account on everything.
whatever will be will be..
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Sarahk60 Mar 2019
THank you!
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Perhaps it's a good time to get legal things out of way, Power of Attorney for finances, and health, Living Trust, or get joint on every account she has , since she is not legally diagnosed for dementia/ALZ. I don't look into ever detail about a person on this blog, just the quick questions.
Go in the room with her,,, I made my mom's doctor appointment and mine at the same time since we had the same doctor... It made sense to me, I can keep an eye on mom, and get both things done...
Your mom is mostly afraid of losing control; they all are afraid. I will be too, ...It's hard to give up the reins...
Talk with mom and tell her it's time to let kids help her,
Circle of life.
Mom took care of me, and then I took care of mom. She did a better job, Thank You Mom :) Nobody died on her watch. I miss her dearly.
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Sarahk60 Mar 2019
Yes, she talks about wanting to be Independent. What a scary feeling that must be to need help with basic things.

My my mom says she never wants to be a burden and she definitely isn’t one. It is an honor to watch her grow old.
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An M.R.I. is the gold standard for Alzheimer's. Get Power of Attorney in place immediately. Don't treat your LO like a child. Secure vehicle keys. If that sounds unreasonable, it isn't. It is factual. I have a family member with this horrid disease and also have friends who have passed from it. I feel for you and please come on here for comfort.
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Sarahk60 Mar 2019
Thank you. Yes, my aunt passed away trom it. I remember she would wander down the street, fall, break her bones, accuse family members of things...it wasn’t peaceful at all. She even married someone co
woltwy random not long before she was diagnosed. Igh
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BASICALLY YOU ARE ON YOUR OWN - anything you get to help is a bonus & coming here will help a lot

As to your mom .... think about how your would feel if your worst fears were confirmed by a dr.? - would you like this plopped into your lap? - if she is subject to some depression then it stands to reason this will make it worse

Do yourself & her a big favour & educate yourself so that you can help & understand what is happening to her - every person is different - go online to 'TEEPA'S GEMS' - Teepa Snow has many short [4 to 8 minute long] videos - there are 13 alone on how to visit a person with dementia [if they are seated come in low on their dominate hand side ... & there are many more]

Good luck from all of us who 'HAVE BEEN THERE TOO' - YOU ARE NOT ALONE so keep coming here when you can to widen your horizons
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Sarahk60 Mar 2019
Thank you! I know my mom must be scared...and she’s definitely frustrated. Praying we can help her enjoy these years somehow.

Yes, checking out teepa for sure.
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You need to get a DPOA, a MPOA, (NOW-this is a NOW thing) make sure her Will and LIVING WILL are in order. The upside is, despite what greedy attys will tell you, unless she has a very large estate or such, you can get this all done ONLINE-at least the proper forms for you state. Then you will need a notary and 2 witness for each document.

If you are going the medicaid route get that started NOW as well.

I would suggest your doctor WRITE down his dx, that is sort of shady that he did not. I am all for NOT hiding anything, you tell them. And you explain it is a disease that can be managed (little white lie there) like diabetes etc.

And you can keep her spirits up by making memory scrapbooks, etc. Think the movie-The Notebook, then do your own variation of it. It will help, can bring out GOOD and forgotten memories and its something you two can do together. It's a loooong road, dementia.
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Sarahk60 Mar 2019
Thank you! The doctor actually did write it down..it was just on another link I needed to click on.

Yes, we plan to print off the paperwork. She has no property or loads of money anywhere. Should be easy to manage.

She does seem to wnjoy looking at old family photos..though the conversation somehow always turns sour as she remembers how she was wronged in one way or another.
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Get DPOA now!
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As for her knowing, in my case my husband said it was a relief to have a name for what had been going on in his head .
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Sarahk60 Mar 2019
I totally agree with this. It gives us a direction from which to begin dealing with everything.
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I’m so sorry that this is part of your life story now. Everyone here is stressing the need for Medical & Durable POAs. This should be viewed as a need to be done this week, if possible, not down the road a month or even a few weeks. Dementia is very unpredictable. Your Mom May stay stable for awhile or change on a dime. Once she can no longer understand what she is signing, you are out of luck. Best of luck, take care of yourselves, deep breaths, stay strong ...
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Sarahk60 Mar 2019
Thank you. We are planning on taking care of it this next weekend.
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Hi, first I'd like to say I'm sorry Sarah that your mom has Alz. It is a very slow & terrible condition where loved ones watch their parents deteriote. Please first consult a geriatric/neuro to confirm. They usually will talk privately first with patient & assess their condition then with you. After initial assessment theyll usually want to see her every few months to assess deteriotion. Get also, if mom is still able to think clearly, her opinion on preference of future care-for example presenting sceneries that may involve, DNR, CPR, ventillar, feeding tubes. Get someone to act as financial & medical proxy, apply for Medicaid since Medicare will not cover long term patient care like personal care & household help. Read up on Medicare coverage. Medicare will want documents going back 5 years. If you are working I strongly suggest getting someone to help with her care (hygiene & food prep & feeding if needed & companionship) until you come home. Ask in your church if mom is affiliated with if anyone they may know would like a position to help you out (even perhaps pay off the books temporarily) until you can figure things out. Connect with your Local Council on Aging & just ask lots of questions no matter how trivial they sound...send me a message if you want some assistance. My 83 years old mom is on her 5th year of Alz & I am a 24/7 person for her & my dad (93) & they live in their own home. I take care of them with 3 different women that come throughout week to help me from am to pm. I live in another state but stay usually for 2-4 months at a time then take a month off & my 2 sisters come to help out until I come back. I hope you find the help & all goes well.
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Sarahk60 Mar 2019
Wow. God bless you. That is quite the load to carry. What a blessing that you have some help. I’m sorry you have to go through this.

I work from home mostly, so I’ll be able to do most of the caregiving. However, at 50 I’m still selfish and impatient. Time to grow up i guess. Joking, not joking.
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As BritishCarer states about his wife, this diagnosis does not mean the end. My mom is ten years into Alzheimer's and though she forgets everything now within minutes, she is still quite delightful most of the time. I do warn you about taking her to the attorney for signing of papers, which you must do right away. If she is depressed she might get suspicious of you and your sister that you want to take advantage of her. It seems that she understands her diagnosis and hopefully realizes the need for help, but knowledge of her own circumstances can go in and out of her memory, so patience is what is needed most for the next several years. It will get very difficult for a while, then easier as you learn to cope with your own feelings and her changing state of mind. She may refuse help other than her family members, so that might be a struggle. Stay in touch here. These people are very knowledgeable. Try to relax.
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Sarahk60 Mar 2019
Thank you. My mom is not really delightful. Lol. She can be...and she definitely is better and happier in a way at my house, because I’m able to help keep track of meds and food. However most of the time she is incriwbdly fretful and broods over everything bad that’s happened in her life. That is pretty difficult to hear every day. I’m learning to redirect but it’s not easy.
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So sorry that you and you mother are facing this terrible disease. I just want to say a word about the depression. When my Mum was diagnosed, she was already very self-aware that things were not right. As she often said,' I'm losing my mind.' The doc did give her antidepressants but we also started talking about the disease as exactly that, a disease. Many, many people have a hard time wrapping their own minds around mental illness. We used to talk about her broken brain, like her arthritic knees, as a disease. It made it easier for us to talk about what was happening to her because we would make it something physical. She was not just 'going crazy' she has an illness of her brain. Somehow it made conversations easier for us. Now she is now no longer self-aware but she still needs the antidepressants to enjoy what she can during her day.
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Sarahk60 Mar 2019
Thank you. Yes, the depression is actually quite severe and she’s always run low, but it’s gotten very bad. I like the idea of talking about her meme .org issues as a disease. Great idea. Maybe that will help some
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First definitely get POA and whatever is needed to be allowed to make medical decisions for her and to talk to her doctor (I'm not sure POA covers that) plus get on all financials.
I would really encourage you to talk to your mom about allowing you to go with her to any appointment (doctor, finance, etc.) She can't do it alone.  I know someone who went in to the doctors with her husband and sat behind him and when the doctor asked her husband questions and he didn't answer them correctly she would nod/shake her head and the husband never saw her but the doctor did.  If she has a medical log-in try to get that also or set it up for her and then you can use it to email her doctor (once you have the POA, etc.) questions and concerns. 
If her house bills are paid electronically I would get all passwords, if they're not I would talk about getting that done so someone can keep up on paying them.  Look into a ALZ Day Program for you mom.  Make sure they have different activities, not just sitting and watching tv (that happened to us).  It might take a while for her to get used to it but once they do they usually enjoy it.  If she resists you can tell her she's volunteering (most places with go along with that ploy), go with her a few times then slowly leave. 
Telling "lies" to keep you mom safe is okay.  I know a majority of us grew up being told don't lie but it's all about keeping mom safe and happy.  She'll never know you're lying and it's totally for her benefit.  No one will think less of you.
When my mom started to wander, we put a security screen on the front door with a lock that needs a key to open from the inside and outside.  We kept the key hidden nearby.  Some won't agree with that but it kept my mom safe.
Some sites say put a black floor mat in front of doors.  Their depth perception is off and it looks like a hole so they stay away and some put posters on the door to distract.  We also put a lock on the bottom of the back sliding door, it blended in with the color of the door frame so she didn't see it.   I also bought a floor alarm mat (with beveled edges, less of a tripping hazard) to put next to her bed.  When she stepped on it in the middle of the night an alarm sounded in my room, not her room, and I knew that she was up.  It was a life saver -- I would wake up at all times during the night to look at the baby camera to see if she was up. 
Go to Goodwill and thrift stores to look for walkers/bath chairs etc.  Saves a lot of money.  In my situation it's like caring for a toddler and my mom is 77.  Enjoy your time with her, make more memories.  They can be a real kick sometimes and just make you smile with their silliness.  There are hard times also but we try to remember the good.  God Bless You and your family.  If you pray, then keep praying.  You're never alone.
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shigatsu76 Mar 2019
Wow! Thank you for these tips. I’m going through the same experience with my mother. She does like to wander especially in the middle of the night.
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my mother signed my sister as her POA for both medical and financial matters with my agreement prior to her visit with neurologist and testing that confirmed diagnosis of dementia. We were lucky we did it that way because when my brother wished to contest this arrangement, our attorney advised that once she had that diagnosis, she could not on her own, change her POA any more. I would guess it might be the same in setting up POA. You have seen a neurologist and in those notes, it does probably state an impression of dementia. I think if no one contests it or wants to fight about it, you might be fine but I would immediately get to an elder care attorney to get that set up. We are all sorry that you have to go thru this but getting prepared with POA, and with being on all the financial accounts will help you as things develop. Make sure she is not able to access credit cards and do transactions on the phone as she will be vulnerable for scams.
This is a process, so you don't have to know everything now; but you have to start thinking about next steps. One thing is that she will need to get used to having you in the exam room with doctors. You will need to hear what is said; she won't remember, might not understand what doctor is saying and might try to hide bad news. and make sure all doctors you go to have her signed permission and agreement to share information. You just do that by a signature on a form when she has her next doctor appt.
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Judysai422 Mar 2019
Make sure you have a Durable POA that goes I to effect now, NOT a springing POA that requires doctors to state she is incompetent before it is activated. See a good elder law attorney.
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Hi again,
A P.S. to my post. Take a look at this from Wendy Mitchell who has Early Onset
Alzheimer's. It's very positive and might encourage you:

https://whichmeamitoday.wordpress.com/2019/03/26/letter-from-emma-thompson/
Also, Wendy has written a lovely book, "Somebody I used to know."
It is worth remembering that with the age at which your mother started having dementia, it was NOT early onset. That means there is no genetic base that suggests that you or anyone in your family will be more likely to get dementia.

You can cope. Just try and pray and seek help from friends.
All the best
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Sarahk60 Mar 2019
Thank you. Have no idea what to think. My mom’s brother and sister have/had it as well. Theirs all started in their 80’s and I suppose we all have to pass on of something...just hoping to do it with some dignity.
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You will be able to cope. "Always remember you are braver than you believe, stronger than you seem, smarter than you think and loved more than you know."

My wife, now 82, has had Alzheimer's for the past nine years, but she is still at home with me and doing remarkably well. Take a look at C. S. Lewis's book, "The Four Loves" which are friendship, affection, charity and Eros (the state of being in love with someone, with or without a sexual side). With any form of dementia, you have to go slowly. So it's easy to remember FACEs--friendship, affection,
charity, Eros, slowly.

You will need to deal with the depression. It sounds like your doctor knew what he was doing when he did not write up the Alzheimer's. It would have made things more difficult if he had.

Don't try to do everything on your own, or even just within the family. Get caregivers/ companions in so you can still live a life of your own, even as you love and care for your mother.

I know that it is easy to move into denial and feel that this can't be happening to me. However, the way ahead is to face the challenge. You can do it! Prayers and hope for the future.
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Sarahk60 Mar 2019
thann You! I will check out the CS Lewis book for sure.

Im not alone, but will be a caregiver for my sister for a while, as she’s I’ll as well and getting surgery soon. This is all pretty unbelievable. Grateful for my husband and sweet kids.
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Don't count the days, but make every day count.
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Sarahk60 Mar 2019
Thank you. Great reminder.
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my mom started getting Alzheimer's symptoms at age 80..actually even before that. She is nearly 90 and at end-stage. Do see an eldercare attorney and get affairs in order such as POA established, living wills, estate planning. do it while she still has cognition. nothing anybody, not even doctors, can do about it.
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Sarahk60 Mar 2019
I’m sorry about your mom. I saw my aunt in the end stage it is was not easy.
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I just want to say how sorry I am that your family has to go through this. I am sorry that your mom got this disease and I am sorry that you will have a hard road ahead of you. This is the best place to find answers, to vent, and to learn.

May God be with you and your family!
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Sarahk60 Mar 2019
Thank you so much. I’m sorry you’re going through this as well. I’ve felt sick since getting the diagnosis. I mean literally wiped out, like o have the flu (which I don’t, of course). Praying this doesn’t suck the life out of me.
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Isthisrealyreal...”

What paperwork needs to be done that would be affected if she did have a diagnosis on paper from the doc?

”It is a blessing that your moms doctor didn't put that diagnosis on her paperwork, that way you can honestly say she has no official diagnosis and therefore you can get all of the paperwork in order.”
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Judysai422 Mar 2019
My mother has had a diagnosis of vascular dementia and cognitive deficits for years. The attorney said that unless doctors declared her incompetent, she still had the right to make decisions. Act quickly to out affairs in order before she really is.
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Thanks, everyone! I appreciate every single word of comfort and advice.

Our local Alzheimer’s organization called my sis today. I guess the neurologist gave them her number. It just keeps getting more real.

My sis and I are discussions business and getting paperwork in order in the next week or so.

As of right now...I’m literally weak with....can’t even put words to it. I am just physically drained. My arms are heavy...everything is. Strangest thing ever.

Thank you, again.
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Coming here was your best life raft. These people know sooo much. I am sorry you are here, but you picked the best soft landing.

Wekcome.keep reading. Best to you.
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jjmummert Mar 2019
Amen.
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Please find a certified elder law attorney, you can go to www.nelf.org and find one in your area. They will help you get everything set up for your personal situation, do this right away.

It is a blessing that your moms doctor didn't put that diagnosis on her paperwork, that way you can honestly say she has no official diagnosis and therefore you can get all of the paperwork in order.

Please get this done as soon as possible, you don't want to have something happen and not have any authority but all of the responsibility.

I am so sorry that your family has to make this particular journey. Remember, it is a marathon, not a sprint. Don't let it or her consume your lives completely, get help and, breathe. Unfortunately, it tends to be a long rollercoaster ride, but you will get through it.

Hugs to all of you.

ps: yes, a geriatric doctor would be better then her pcp.
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Sarahk60 Mar 2019
Thank You. Had no idea this was the road we’d have to go down. Not sure why I’m surprised..her sister had it.

Yes, will look I to a geriatric doctor ASAP.
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Hello, I’m so sorry about your mom. I don’t have any answers for you. But I am in the same boat with my Dad. He has been diagnosed yet but I need to get him to a neurologist ASAP
wishing you all the best 💕
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Sarahk60 Mar 2019
Thank you. I’m sorry for you too. In a way I feel better having a diagnosis. Now we know how to proceed and deal with her.
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In my state POAs do not get filed at the County Clerks office. I would recommend a lawyer for drawing up both medical and financial POAs. Do not "share" a POA with anyone else. A backup would be nice if you feel you can no longer do it. With me, the financial is pretty cut and dry. Mine read that it took over when Mom was no longer competent to handle her finances and it listed what I was allowed to do. You may want Moms to start immediately since she has already been diagnoised with Dementia and I would want something from her doctor saying this. My Moms medical read like a living will. What she did and didn't want. In my state a DNR now has an intense form. Moms PCP had to fill it out and sign. Each hospital and facility Mom went to had to fill out their own and have a doctor on staff sign it. Have a copy on hand at Moms. It will be needed by ambulance EMTs. Somewhere they can find it, like the frig.
Meds for ALZ/Dementia are only really good in the early stage. They just slow down the process not cure it. Eventually, they don't work. The brain is dying.
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Sarahk60 Mar 2019
Thank you!
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Okay, in answer to your question as to if there's someone to "hook you up", the answer is no there is not. Your Mom's gonna need a medical POA and a durable POA for finances. To do that cheaply, use Legal Zoom and file with the county clerk's office in the city/county where your Mom lives. Make sure your papers are signed and notarized before filing! ***very important***
Is she married or widowed to someone who served in the armed forces? Look to a VA attorney to help with that if she is.
Are her resources really low? If so she may qualify for Medicaid. An elder law attorney will help you with that. (They're worth every penny btw. Both VA & elder law: I know cuz I used both for my Mom and....they worked!)
Have a sit down with your Mom and ask her what she wants when it comes to emergency or end of life care. Would she want emergency services to save her or just let her go? If she's like my Mom, she may want a DNR (Do Not Resuscitate) on file for her. Geriatric care can be given by a PCP, nursing homes are known for that type of care as well. It just depends on what your Mom may need. Hope this long response helps you. Oh, almost forgot, if neither you or any of your siblings are on your Mom's bank accounts, please get that done asap-your Mom has to be present to add someone otherwise the bank won't do it. Whoever becomes her POA will have to be responsible for that from now on. God speed my dear.
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Jannner Mar 2019
Just an FYI, they still ask at each facility if they want a DNR. My mother has a living will that says DNR but even with dementia, they ask her and she says yes, resuscitate her. She’s 92, and unless she is unconscious or 2 drs say she has dementia, the medical POA does not go into effect. I notice someone said there is a medical POA that can go into effect immediately, wish we had known that then or maybe it’s not in all states. Even though she is not capable of rational decisions, they still take her word over the legal document made before she had dementia.
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