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Only child caregiver for 87 year old mother....undiagnosed dementia...all the classic examples are there- repeating the same things over and over and over and over again, paranoid accusations, forgetting who I am, hallucinations etc.... I have tried to get her in with the doctor to get an opinion on her cognitive decline issues but she refuses and claims that it is me that has the memory problems...In the living trust it lists me as durable POA...what good is durable POA if you cannot on record get a diagnosis from a doctor??? I am her primary caregiver 24/7...on LOA from job taking care of her...don't know if I'll ever be able to return to job...tried to tell her that some outside help would be good....she doesn't want outside help....only me to be with her....this is slowly driving me insane! Simple things that I used to do like running...I can no longer do...if I'm gone away for a half hour,,,she screams that I've been gone all day...hell, I can't even take a bathroom break to take a piss without her screaming that I've been away to long! Is there a mean/nasty side to dementia? I dread the afternoons, because the personality switch kicks in and it s draiiiiiinnnnniiiing to be around and to be the subject of some of the things she says..."yeah, just don't talk back when she starts going crazy and is mean...just suck it up and take it"....easier said than done. Peace! Eric

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Eric, what "legal department " sent you this response?

Can you get in touch with mom's lawyer to clarify what needs to be done?

In your shoes, the next time mom "goes off" in the afternoon, I'd call 911 and have her taken to the hospital- say you fear she's had/having a stroke.

Once she is in the hospital, find the social work department and tell them that department can no longer be cared for at home. Leave her home. Do NOT pick her up, sign for discharge or in any way enable her to return home.
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Hello again,

Got Mom into the doctor under the disguise of a arthritis knee appointment, the doc asked my mom about their phone conversation two days earlier and she told the doc she never ever spoke to him, he then asked a series of questions.... do you know what day, month, year it is etc... she didn't know, she didn't know what city she was in at that moment.... I followed up with doc and asked if he could write a letter re my POA to be activated..he said the following:

"Hi,
I can write a letter regarding that, but it would help to see a copy of the POA if you can send that. It is not common for their to see a two physician requirement on those, so I may need to see what else it would specify. We can arrange a phone appointment with a colleague of mine after, and that should be enough information with the documentation I have for them also to concur. Please get me a copy of the POA if possible".

...I hope this is the start of me gaining an active poa??
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Beatty Jan 2023
Yes. You did well!
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Hi, I am sorry to hear that your mom was diagnosed with Covid in July, and has likely been declining, or at least feeling worse, since then. Has she received her Covid vaccine and booster shots yet? It sounds as if your mom is in a severe state of dementia, and if the doctors that you have seen still refuse to diagnose her with dementia or some type of cognitive deficit, you may wish to keep trying different doctors until you find one that will diagnose her correctly. There are mobile doctors who make house calls, and other doctors who will do virtual evaluations online. You should not go on like this, and the diagnosis that you have received from one or two doctors that you have seen so far should not be considered to be the ultimate. Her pets (are they dogs, or cats?) may give her some comfort/solace, but this is only temporary, and she will likely get worse if things continue like this.
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Elvis man, just saw that you got mom to a doctor and some good questions were asked. Good job! Hoping along with you that this first step leads to the changes both you and mom need. Keep persevering!
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Is it possible to set up a baby cam? I'm not tech savvy. There must be something you can show to a doctor. Perhaps even a voice recording.

After over a decade and a half of spoiling my husband I inadvertently made him unsocialized by being his everything at all times. He was fearful of dementia day care and acted like Yosemite Sam saying that he was going to shoot up the place. In this day and age I was sure that they were going to reject him. What you may think is hopeless can be managed, BY PROFESSIONALS. It took about two visits and he comes home up lifted and sweet with no memory of where he was except that it was good.
I bring him to the facility. They see him coming through the locked glass doors and welcome him in by name always. Good morning David. It's so nice to see you again.

A kind gentle hand on his arm guides him in, I am positioned behind him. I don't go through the door. I get a quick nod from the staff indicating that I can go, that I should go, and I disappear for 6 glorious hours.

I've overcome my need to control, a big thing for me and more than I was willing to admit. One month into his attendence I've recently progressed in my ability to let go by taking advantage of the option of having a little bus bring him home.
So very much on the edge, why did I wait?

My husband got use to day care because prior to joining he and I attended "memory cafes" there to share pleasant times with other couples on the same journey. One time puppies were brought in to one of the cafes. Another time my David started a painting and then the caregivers and the loved ones swapped rooms and I finished the painting. Memory cafes and many other activities are free. The staff well know that the caregiver needs attention and help too. We're all on the brink. At any rate, by joining these events, the drive to this location, the building, the rooms and the staff became familiar.

Believe me I know how difficult it is to get further immersed in this culture by getting involved with such services but it's actually the only way to get relief.

Btw, not that this will make it any easier, mean behavior comes from fear, loss of control, confusion, it's self-protection in a childish way because of the loss of filters and knowledge of appropriate behavior.

I am very reactive, inside, and it takes gorilla strength to not react to his INCESSANT MOUTH and negativity. I've learned it's okay to walk out in mid harrangue and do the laundry. Put headphones on. Not responding is not sucking it up. It's the sane person taking back control.

If she says you've been gone too long, all day, tell her you've been two days, smile and say you missed her and your happy to see her again. Another time tell her you went to church, or went to meet with your support group.

Stop giving up control. Take a detached bird's eye view of your situation and condition and get cracking. Call a hospital and talk to a social worker and anyone elso you can for guidance.

You must find a support group pronto. You must let someone help you.
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If CBD candy not available, give her over-the-counter cough/cold medicine with antihistamine. This will knock her out for hours.
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BurntCaregiver Jan 2023
No it won't.
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If cannabis is available in your area, a CBD candy can make her sleep for hours, giving you time to think and plan. Try a small portion at first, see how it works on her.
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BurntCaregiver Jan 2023
Once again, no it won't. People so often think cannabis is answer to everything. It's not. If the OP's mother has dementia it can make it even worse.
She needs to get to a doctor and see what they think.
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A durable POA goes into effect the moment it is signed. It should allow you to use her funds for anything related to her care. With a durable POA, you don't need a doctor's diagnosis. Sounds like first task is a visit to a geriatric psychiatrist, to get prescriptions for her hallucinations and other difficult behavior. Can you trick her into a doctor visit? Or maybe a visit over Zoom?
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NorcalAE Jan 2023
This want's the case for me. For healthcare, Dad had to sign a paper giving me access to his medical record. And I had to provide the DPOA for HC paper work. For finances, a regular bank (Chase) required Dad to be present to give me access to his accounts. His financial advisor and 'big money' accounts - required a letter from the doctor stating Dad was unable to make good decision due to dementia. And I had to get some form notarized. POAs are only good once the person is deemed incompetent - which is your challenge.
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Hi,,,,,,,,, your Mom is afraid. There are several good suggestions on how to access care for your Mom. You could also contact Adult Protective Services to see if they can help. Your Mom's not able to manage her own affairs and she needs help. You need to protect yourself too. She sounds like she also has sun downers in addition to dementia........ Pardon the erratic typing. My computer is acting up.
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My situation was a little different ..my Mom had Alzheimers and I was seeing signs in my husband, but, everytime I asked his Dr to test, I was told he was fine..nope he was not..one day when he was especially difficult, I called the police..when they came, (they had come before but this was the worst, being nasty would not come in house..yelling at neighbors...) the wonderful sergeant asked him if he wanted to go for a ride in his new patrol car..my husband thought that was a great idea, so he said he was taking him to the hospital and I should follow along behind..got there, sergeant talked to er people..they admitted him for evaluation..alzheimers and vascular demntia..was there for a week, came home with prescriptions..that was 3 years ago...he is still home, is manageable and am so thankful to the Police for helping me..
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If she is on medication tell her that her prescription cannot be filled because the doctor wants to check on her first. I did that with my Daddy and that was the only way I got him diagnosed and I talked to the doctor first without him in the room. I believe to get guardianship you will need two doctors letters stating she is not of sound mind. Prayers for you and your situation.
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POA only works if the person is agreeable. If they refuse and fight you on things, then you end up having to get guardianship. Guardianship will allow you to make those decisions for her without her permission.

Yes, dementia has a mean side. Certain types of dementia can exhibit violent outburst and even physical violence.

If you have to go back to work and she is living alone and cannot make good decisions and cannot safely take care of herself, you may need to call Adult Protective Services. They will go to her home and evaluate the situation.

This will not be easy for you. The name calling and the threats will be hurtful. She will be mad, but just know that you are making decisions to keep her safe and cared for.
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The concept of time can go very quickly in dementia. A half hour can seem like all day. Just as an infant will scream when uncomfortable and not respond to suggestions that you will manage the situation in a few minutes. This doesn't help you really, you still need to get care for your relative. Try and remember that that is your purpose, get them care. You cannot not do it alone; you are not being selfish. You are carrying out the responsibility you have. By the way, the doctors and hospitals usually run from this kind of situation. It takes a lot of time and money. They are not skilled at handling these sorts of legal documents and hearings, and sure don't want to lose money while doing it. This is why you have to refuse to take someone home from an ER. They are under immense financial pressure to hand the problem back to the patient's family. You have to raise a stink to get them to accept this responsibility which is theirs whether they like it or not. They will be very unhappy with you for doing it (although they privately understand perfectly and might do the same).Your phone's camera is a handy little tool. Start making some home movies and talk to an eldercare lawyer or neuropsychologist. Or show it to the EMTs when they arrive and take it along to the emergency room. Good luck, an adult sized miserable infant is a maddening problem. Even an infant sized one can drive you crazy.
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I would video/record her and let her doctor see it. Try to get a home health nurse in to evaluate her immediately. If she gets too unmanageable, call 911. It sounds like she already is. My Mom had to do that a couple of times for my Pop. They kept him in the ER until they could get his temperament calmed with medication. They brought him back home and it took 5 men to get him in and out of the house because he resisted everyone. Your Mom really needs to be in a memory care facility. You can’t watch her 24/7. She sounds like she may be nearing end of life with her unstable mental state and with the sundown syndrome getting worse and happening earlier in the day. It might be best to call Hospice now. They will put her on medication to calm her the majority of the time. She will sleep a lot. My Mom made this decision because my Pop was so violent and out of control. She was not able to take care of him any longer. Your Mom should also be checked for a UTI if she goes to the ER along with the psych evaluation. Sometimes a UTI alone can exacerbate her symptoms. It’s time to let the medical professionals take over. She doesn’t know what she is doing. Since you have POA, you should go ahead and do what you need to. She’s not going to be calm or happy-no matter what. It’s time. Please do the right thing now. It will be difficult. It will bring you relief and your Mom relief also. Know that you can no longer control this to the level of adequately taking care of her. I pray for your peace. You need to have it again.
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elvisman67: Make the appointment with her physician.
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I haven't read all of the responses to this but I will try to keep my answer short. For a number of reasons I went to an attorney specializing in elder care issues to seek guardianship which is granted because the elder cannot take care of their own affairs. I found that my mother's primary physician was very reluctant to complete the paperwork documenting my mother's incapacity. I ended up having to pay a private neuropsychologist to complete an evaluation to document her deficits so that I was able to obtain guardianship and make important decisions for her. It doesn't make the decisions any easier. Sometimes POA is enough and sometimes it isn't. I found that even though I knew her abilities and difficulties better than anyone, my reporting was not acceptable as a reason to grant the guardianship. One time she was taken to the ER by ambulance and the doctors and social worker were indicating they were going to report that she was unable to live on her own and assist in seeking placement.....then they suddenly decided to release her to go home.

My mother had early stage dementia but possibly more health and physical issues than you've described and I was able to convince her to go into assisted living (reluctantly and she still asks to go home). It sounds like you would need A LOT of in-home care which is even more outrageously expensive than assisted living (also private pay) or memory care facilities. I'd suggest you start visiting your local memory care facilities and seek their assistance on how to make that transition. I think this stubborn and difficult stage of dementia is very common.
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I hope you have called 911 by now. What you described five hours ago certainly warranted a call.
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You should try taking her to a different doctor, or have a doctor or nurse practitioner visit the house and examine her. Based on her behavior, it seems as if her mental state will only get worse, and she may act out suddenly one day, or wander out of the house suddenly, or start losing her balance and fall. Have a private aide or nurse come and stay for a full eight hour shift; it is unlikely that your mother will remain calm for the entire shift, and the nurse may be able to witness her erratic behavior, and help get a dementia diagnosis from a doctor.
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I had immediate success with hiring help for my wife even though she was very, very much against any stranger coming into our home. While recovering from her last hospital stay and screaming constantly to go home; I told her that the only way for her to be able to stay at home was that a nurse had to be with her often for many days of the week. She bought it. It's expensive but worth it for me to have some personal time nearly every day. As for her demands of you; just let her demand all she wants and learn these words; "I Love You."
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I am writing solely from my own experience. But our stories are the same. Like you, I’m an only, and dementia turned my mother nasty and demanding. But she sweetly showtimed for her Dr until I suspected he thought I was the one with the problem. Same issue - refused all care, demanded me 24/7, swore she was fine and the rest of the world was gaslighting her.

Eventually my mother wrote a suicide note because I refused to leave my own family to care for her 24/7. I used that to get help. Phoned EMS, showed them the note, police came, off to hospital, I cried that I could not keep her safe so either she had to go or I had to give up my kids. She showtimed her way out of the hospital but I raised hell. Got her in private pay care. Big $$$ but my life has value too. Perhaps I video of your mother’s behaviour would get her admitted for testing.

Those who didn’t believe there was anything wrong with her were shocked when she was finally assessed and she didn’t know her town (of about 20 years), age, grandkids or the year. In fact she took off on the hospital staff several times, making my point for me.

That put me in charge as substitute decision maker. She is now in care, and got a permanent placement last spring. She’s declined such that she doesn’t know me, which, frankly, is a relief, as I’m no longer the target of her rage. I’m just some nice lady who visits.

The moment an opportunity presents itself to call for help, take it! Behavioural, physical... whether you call for an ambulance, police, or take her to the ER for a behavioural change that could be due to a UTI, you must jump on the opportunity to get her condition recognized and outside help. Record events by video or in a diary. Even if she rages. Know this: your feelings are just as valid as hers. There is no reason we caregivers have to spend the rest of our lives in misery trying to appease someone who is impossible to please. All you can do is insure she is safe.
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NeedHelpWithMom Dec 2022
Wonderful response!
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All that I can do is commiserate with you. I am in the same boat and feel the very same way. This season of being my mother's caregiver has been the most difficult one of my entire life, and I have not had a charmed life.

The only time my mother is not yelling my name and making demands is when she is asleep. And she's loud. She's sitting in the kitchen yelling as I type this. It's 3:20 pm and she's been at it since she got up at 12:30. Her bedtime is 5:30 pm.

Every day I try to keep my head above water.
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NeedHelpWithMom Dec 2022
Oh, this is such a familiar scenario for caregivers!

My mom has been deceased for awhile now and I still remember her constantly calling my name for assistance.

Wishing you peace as you continue on in your caregiving journey.
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@elvisman67

When the ranting, raving, paranoia, and accusations start up call an ambulance.
Don't tell her you're calling one, just go ahead and do it. Show the paramedics your POA documentation and tell them that you want her to get checked out at the hospital. This is your chance to get some things done.
Please call 911 next time.
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elvisman67 Dec 2022
I have a phone conversation withher doctor 1/4 and take her in to see her doctor on 1/17...that's little less than a month...don't know if I'm gonna make till then with ths erratic violent verbal and sometimes physical abuse that I receive.....ex: driving down highway 101 and hit a bump in the road and she starts hitting me while i'm driving and throws her soda bottle and it cracks the windshield- 2 hours later...."hey, how did the windshield get cracked?",,,,I think a 911 call would be good, but you just can't call 911 and say "My mom, just verbally assaulted me...I need help now".
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Yes I have been there.
a POA can be either health care or financial. Which do you have ?
The less you tell her the better as far as why she is seeing a dr. Tell her it is an annual check up. But call the de office ahead of time for an appt and disucuss she needs assessed for dementia. Also they will probably give you checklists of what you see she is doing .
she is a lot like my Luther. Expects you there 24/7. Unrealistic. She is slowly draining your sanity. No one can live as a slave like that.
call area aging Dept or senior care and start discussing what you see in her and her needs and find resources to get her into a care unit and nursing care.
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May I ask what you think having a "diagnosis" will accomplish? You are very aware of her cognitive disabilities. Trying to explain things and expecting her to understand is just going to wear on you more and most likely cause more disagreement from her. Unfortunately a this point in her life she is no longer able to make appropriate decisions. As Durable POA you are responsible for making decisions in her best interests. She may feel you are going to "abandon" her even if there is not indication or rational reason for feeling that way but for some reason he may have that in her mind. If you need and want outside help you should go ahead and get it. Initially maybe see if there is a volunteer organization the provides "visits to neighbors" where they just come and visit for about an hour, once or twice a week and you remain in the house while that person it there, so you are easing into having another person in the home. They are there to visit/provide companionship, maybe play cards etc. Then you could try to ease into it further by having a paid caregiver come in at a later point for short period of time. But again you remain on the home initially. then after awhile make quick trips to the store and over time extend the amount of time you are gone. It is not a quick fix unfortunately. Also there are medical groups that provide in home physician visits which are covered by Medicare and many of the Medicare Advantage Plans. They are usually Nurse Practitioners that make the home visits but my experience has been good using them.
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I will give you a diagnosis, and I'm not even a doctor. Why do you need one? If you are going to continue to take care of her and you already have a POA? Do what you need/can afford to do.
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No, she will never ever want 'outside help.'
This is something you need to take control of and arrange.
Do not leave it up to her to make these decisions because she (mostly likely) doesn't have the cognitive ability / brain cells to do so.

If situation left as is, she'll drive you to the brink ... No sucking it up - you need to take control."

Yes, it is difficult or challenging getting her to an MD.
* See if you can find one who will make housecalls. I know . . . insurance doesn't pay, expensive ...
* Often / sometimes, a fall or something else gets a person into the hospital for medical attention and then dementia is diagnosed.
* Sadly, you may need to 'wait' for this something else to happen before she'll get the MD diagnosis she needs.

As someone said below, if you are able to call 911 and get her to an emergency room, do it yesterday. (I didn't realize this was an option). It is AN EXCELLENT IDEA.

* IN THE INTERIM, get sitters or caregivers
--- as you need to take time off and get regular respites.
* If it will work, tell her you are taking her out for a nice meal / dinner or something she'd want to do - willing to get out with you, get in the car.
- Yes, she'll kick and scream when she realizes where she is going. So what? Expect this and do what you need to do. And, then tell her you PLANN[ED] to take her out for a nice dinner, TOO. (Keep your promise or say something to appease her - do not argue.)
* At ALL costs, you want to maintain your own mental health. If you go off the deep end, she has no one else. Take care of yourself.
- Do not 'listen' to her when she says "I don't want anyone else..." - you do what you need to do for her well being, and yours. Call in the troops.

YOU NEVER EVER want to argue with a person inflicted with dementia. It is more than a NO WIN strategy. It is emotionally and psychologically draining for all concerned. Do REFLECTIVE LISTENING, i.e.,
- acknowledge her words (I hear you saying xxx)
- Stop
= no argument
+ she feels heard (most likely or possibly she'll feel you are listening) so she is acknowledged.
= You then do what is necessary. Period. Take care. Get people in there.

Gena / Touch Matters
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elvisman67 Dec 2022
The relective listening is a good idea... I've tried it but doesn't always work....I don't know if i am killing myself by not lying all the time but she is fixiated on the fact that "all these people" are in her house...today for the first time, it was somewhat normal until the afternoon..."where did that girl go that was staying downstairs"? Where's your twin brother? and I always tell her the same thing " Mom, there is only the two of us who have lived here and no one else"....these hallucinations or paranoid delusions are very real to her... I asked her what the girl looked like and what her name was, mom couldn't answer that one.....called her doctor and reported all the crazy stuff that has been happening here over the last week and in addition to her dementia she just might have what some people have said in posts- "UTI"...according to the doc.
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Time to video Mom in preparation of removing her from your home. The best advice here is to call the ambulance and let the hospital get her placed at a psychiatric hospital to be cared for by a Geriatric Psychiatrist until she can be safely sedated and balanced and ready for professional Memory Care.
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You have an awful situation. Absolutely no one would deny that.

No one wants to find themselves fighting a battle like you are dealing with. It’s normal to be frustrated and even angry in this situation.

You feel alone being an ‘only’ child. I get that, but I have news for you, there are many caregivers who have multiple siblings and none of the siblings help. So, they are ‘alone’ too.

The real issue is that this is too big of a job for a caregiver at home to deal with on their own. You are in over your head.

She isn’t going to change. You know that. You need professional support. You need physical and emotional rest or you will go insane.

You say that she is threatening to call 911. Let her do it. She needs to be evaluated and receive proper care. You need direction from professional providers on what to do next. Speak with the social worker at the hospital and ask about placement for her. Specifically tell them that you are no longer able to care for your mom at home.

She isn’t ever going to see to reason. So, stop trying to reason with her. Start deciding what is best for her and most certainly what is best for you. It’s clear as day to me that you need a break and possibly don’t want to be her caregiver at all anymore.

You do not have to assume the responsibility of being her caregiver forever. You’re entitled to resume
your life. Oversee her care done by a professional staff and then you can be her son and advocate.

Wishing you all the best.
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Stop. Think about the consequences of your having a physical breakdown and being unable to manage your mother at all. Your mother is sucking up every ounce of strength that you have. She has no diagnosis. Without a diagnosis, a POA is virtually worthless. My suggestion: Go back to work. Get back to running. Get your life back before it is too late. Do not let anyone guilt you into sacrificing your life. Piety does not heal.
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Stop. Take a few steps back and breathe. Caregiving of your 87 year old Mom will end one day. There is no textbook to reference for what you’re going through. But here’s something to think about: Do you care as much as you are able to do. Do you give as much as you are able. Give of yourself to those you love who are in need. Believe me, there is a sad ending to being your Moms caregiver. So, do the best job you can for her, because one day life will change and you will move forward in life without her.
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