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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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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 26, 2019
Amen.
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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 26, 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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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 27, 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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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 30, 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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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 30, 2019
Thank you!
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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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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 30, 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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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 30, 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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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 26, 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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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 30, 2019
I’m sorry about your mom. I saw my aunt in the end stage it is was not easy.
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