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My Mom is 55 years old and was recently diagnosed with dementia. She is young and it is so sad to see her not be who she used to be. On top of it she is very depressed. She repeats her daily routine: Wake up, eat, smoke, take a walk, sleep and repeat. She doesn't think the Dr is telling the truth and won't accept that she has dementia. I'm worried she won't get approved for benefits because she won't admit to her symptoms. I have a POA already so I could just apply for her, but we'll have to do interviews, etc. I think I just feel stuck in what to do next. She currently lives with me but I work full time and worry about her being home alone. I have two young children too so I don't have the time and finances to provide full-time care for her. I'm worried she is not in beginning stages too because she can't manage her finances, can easily get lost, eats the same thing every day (fish sticks, chicken nuggets, and french fries for every meal). She is so stubborn and refuses to talk about anything. As soon as I do she says she is too tired and needs to rest. Or says we can talk about it another day. I feel lost and frustrated. Anyone else dealt with this?

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It is all a clinical diagnosis by first ruling out other issues. She went to her primary care and they did a verbal memory test and ran blood work. They referred her to a neurologist who did an EEG and MRI. The MRI came back with shrinkage in her hippo-campus part of her brain. They said that is an indicator of Alzheimer/dementia. They also did a memory test with her. She could not answer the questions correctly at either doctors visits. I was also at her Dr visits to discuss the symptoms I noticed. She refused to admit her memory issues so the visits haven't been easy. One time she kicked me out of the room because she didn't like what I was saying.
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Jenn, this can't be easy. I feel for you!

Start out by watching every Teepa Snow video you can get your hands on, on YouTube.
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Your mother doesn't really need to accept her diagnosis (although that makes things easier for the caregiver). She "just" needs to follow a care plan, even if she doesn't know it is a care plan.

People with dementia cannot be alone all day beyond the very earliest stage. For example, it is wonderful that your mother takes a walk! Exercise is very healthy. But ALZ patients often start wandering. When I go out for a walk without a purse or ID I wear an ID bracelet with the number of a person to call if help is needed. I do not have dementia and I do not wander but I could fall and knock myself out or could be hit by a car, etc. It is just smart to have some helpful ID. Maybe you can get your mother to wear such an ID bracelet without telling her that dementia is the reason.

An adult day center can be awesome in your situation. They generally pick up and return the participants, often have breakfast items available, provide a nutritious hot lunch, have activities, and offer the opportunity of social interaction. Again, Mom doesn't need to go because she has dementia -- she can go to this nice social club so she isn't alone all day.

I think what to do next is to start the benefits application process. That would start with a needs assessment. We called social services for my mother. It is important that someone who knows her abilities be present at the interview. The interviewer knows that applicants often exaggerate what they can do, but they have to take their word for it unless they have other information. So when my mother said, yes, she could manage meals, we reminded her that she can't shop for food, she can only use the microwave, and it was getting harder and harder for her to carry the food to the table. She qualified for meals on wheels, but if we hadn't been there the interviewer would have had to write down that she could manage her own meals. My mother also said she could manage her own medications. Liar, liar, pants on fire! You get my point, I'm sure. Try not to antagonize your mother as you correct her, but make sure the interviewer knows the situation. You do not have to mention dementia at all during this interview.

All dementia is devastating. I think the early onset variety is especially terrible. Your mother should not have to be dealing with this so young! No wonder she can't accept it.
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jeannegibbs; you are one of the members that I look for when I need some validation; its as if I can 'hear' you talking....you seem to think along the same lines as I do...Alzheimers dementia is so devastating for everyone involved it really helps when someone can give valued advice...thank you...:)
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I might ask her doctor about something called Anosognosia. It's not uncommon for someone with cognitive decline or dementia to not be able to process the diagnosis. It may not be possible for her to accept it. So, I'd focus on figuring out how to provide her with appropriate care, supervision and understanding.

I don't see how her denying her diagnosis, would limit her benefits. They go by the doctor's diagnosis. Many patients with dementia have no idea that they have dementia. It's part of the damage to the brain.

I agree about being careful of believing what she says. Often they report false information, because they believe it's the truth.

You really need to be in the home with the person for a few days, observing them, so you can see how well they really can function. IMO, you need this information, so you can report what her needs are. Does she need assistance bathing, dressing, medication, etc. I would say that a professional assessment to determine what level of care she needs would be good, but, the person doing the assessment, can't go by what she says, because her info is not accurate. In my state, the doctor fills out a form, that the long term care facilities, (AL, Memory Care, and nursing homes) need in order to place her in the right level of care.

My LO's doctor told her straight out that she needed AL, due to her significant dementia. We both encouraged her to voluntarily go. Her doctor said do it soon and that she would not let it go. I knew it meant that she'd have to intervene, if she didn't enter AL. Fortunately, my LO did agree to go voluntarily and I signed papers and handled things for her as her DPOA and HCPOA. If she had refused......I would have consulted an attorney about applying for Guardianship. Because, if I didn't, I knew the doctor would report her to Adult Protective Services and they would have intervened. It wasn't safe for her to continue to live alone.
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The important thing is to get her the assistance she needs and the help she needs because she really shouldn't be staying home all day alone. People with dementia don't know when they are doing things they shouldn't and often forget at odd times things such as to take pills, to eat, to go to the bathroom, what to do in case of an accident or emergency, where they live, who they live with, etc. Even if she doesn't know or doesn't want to admit she has issues, the doctors can do a diagnosis and even if she says "I'm healthy" the doctor's paperwork will say she is not completely healthy.

Just try to get her some assistance. They often send someone into the house to observe. They do talk to the person in my experience but they also talk to me (they talk solely to me now as I'm POA and she cannot remember much about her day and will often talk about the past as though it's today so isn't helpful). The person will come in and ask what she needs assistance with. Be open. They offer many services. Personal caregivers can come to the house and sit with her or walk with her so she isn't alone. They can come help with basic tasks just to make sure she isn't forgetting to do them. When my grandma first got help, it was because she was forgetting her food in the microwave or missing pills. Then she fell and broke her ribs so they completely took over helping her dress and bathe and making sure she ate. It was so helpful to have someone come in while I was at work and make sure she was ok. She actually ended up looking forward to it. The personal caregivers can come help her to clean up, get dressed, help her make food, do her laundry, etc. They can drive her to places such as doctor's offices so she doesn't get lost and can take her grocery shopping. They van even pick up medicines and go grocery shopping if the person becomes house bound. Perhaps just getting someone into the house to help her out and be with her is the route you should be going. See if you can't find a companions number, often times hospitals or doctor's offices have these numbers on hand and can make a referral to help you get the process started.
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How do you get her to accept it?

You don't.

That is part of the disease. You just learn to work around it as best you can.

At this stage with my mom, and we are still there, honesty is not as important as appeasement. I lie and withhold all kinds of information about which she can do nothing. I tell her what she wants to hear. It is not worth getting her all upset about things she will forget in five minutes anyway.

It is a different wavelength--but it is ok.
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Your mom is so young. You need to start thinking about the long game here. Poa is good. Collect all her financial stuff and make sure she's not able to get scammed and spend money on worthless stuff.

Salisbury is right, she's not going to accept this. Tell her whatever it takes to care for her. With my dads dementia I may remark that his memory is not as good anymore and he will accept that and agree but if I were to tell him he had dementia it would just hurt his feelings and make him mad, so I just don't go there. Nothing to be gained. 

 We have to fib a lot and not talk about plans for a doc appointment or any financial matters with dad.  I do all the bills but dad thinks mom is doing it and that's fine.  The lights stay on and he's calm.

She could live for a long time. She'll need memory care. You have to look at funding. She have money? Have you applied for Medicaid for her?

Lots to think about. I'm so sorry this has hit your family so early.
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Anosognosia Is the word! As mentioned above, it’s part of the illness. Proceed as best you can and use that word when Mom is denying what you’re saying - to professionals you are seeking help from - not with Mom. That word won’t help Mom, but it says a lot for those trying to help YOU keep Mom safe. It’s a rough road!
My story was much easier. Mom denied it AND also believed it enough to stop sneaking medications she shouldn’t be using and it CLEARED UP HER DEMENTIA. For now. So Mom won’t even TAKE the tests yet again. But they aren’t needed now - today.

Just do your best each day. That’s all we have - today
Good Luck 🙏
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Please have the doctor test her vitamin D levels as a deficiency could cause memory loss. It is a serious possibility and I know first had how it can affect your memory and it can cause depression. If she stays in the mindframe of not thinking nothing is wrong, her stubbornness could possibly help her stay well longer or it could get worse because there is a lack of treatment.
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What is your mom actually checked by a neurologist? Perhaps she suspects there could be a mistake? Put her at ease and get a second opinion but only through another neurologist and you may also want to get a third opinion. If this will make her happy get up to about three or even four opinions and if they all say the same thing then she has dementia. Don't take her to a regular doctor, only take her to neurologist who specializes in spotting these types of abnormalities. As for you having POA, be very careful what you do with that power especially if you happen to live in Ohio. In Ohio POA is not allowed to use their power to benefit themselves, this is illegal in Ohio. This happened to my dad and I'm his only survivor so I didn't know this was going on until it was uncovered after his death. Be very careful what you do with your POA powers since abuse of powers is actually more common than people may realize, intended or not. More times than not, greed takes over. One thing to realize is when you're young, you should take certain precautions to never need a financial POA if you practice strictly digital banking, transactions and auto bill pay set up from your end. Making sure the bills are paid well in advance before something happens to you is key to not only staying responsible with your pills but it's also a good way to protect your money if you know the right strategy to keep peoples hands out of your bank account. Your mom is at your mercy and I pity her since so many elderly and even disabled people are financially defrauded by people they're supposed to trust. Many years ago I was temporarily staying at a home where this lady had custody of three down syndromes who were actually at her mercy. It didn't take long to find out what was really going on in that house since I first saw the physical abuse before I overheard her say something over the phone to someone about owing one of the girls thousands of dollars. At that time it sounded to me like she must've borrowed the money. I don't know what the nature was on how she was to handle their money but you may call this an abuse of guardianship that was eventually exposed and stopped when it was proven true what she was doing. Use this story as a reason to not take advantage of those who are supposed to trust you but best yet, it's actually better if you never need someone else handling your money because no one else has any business touching it in the digital age
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Thanks for all this good info. My Mom is denying her Dementia too and very frustrating for me trying to take care of her.
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We don't need to apply a label that eats at what little pride they have left.

My family has had a generations' long fear of 'insanity' - for good reason, of course, from depression to bipolar. My grandmother was the first to develop dementia - after two long and horrible surgeries. (Anesthesia is not good for older individuals.) 

My mother had issues with her mother, said she was just seeking attention. Then finally it was obvious. It ran its course over too many years, but she had much love and good care.

Then my mother suffered stress and depressions after staying in an unhappy marriage for the big car, big house. I think the abuse went both ways; fortunately, they had separate 'wings.' I lived 1,400 miles away, but we spoke regularly. 

I knew she was isolating upstairs. She told me she was taking Benadryl every night 'for allergies and sleep.' (Google Benadryl/sleep aids and dementia; prepare to be very upset.) The ensuing memory loss was gut wrenching because she fought SO HARD. 

Knee replacement surgery was the straw that broke the camel's back. The night of the surgery she pulled her IVs and wandered the halls. Personnel asked 'Why didn't anyone tell us she has dementia?!!'

It became common knowledge in their snarky little town; my mother rode a high horse, they enjoyed bringing her down.  

She unleashed her fury on him and me. One morning she called early to scream "YOU'RE TELLING EVERYONE I HAVE DEMENTIA!!!"

That rage against me is the one thing she didn't forget. It ended the relationship. 

I didn't lose my mother to an illness, I lost her to a word.
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Dementia is a label. Early onset is NOT a crippling disease - it is a LABEL given by the doctor.

That said - why does your mother have to accept it?? How would you like it if someone kept telling you that you have one leg shorter than the other? You're only making it worse by shoving it down her throat.

Instead, try to find ways to help her and not belittle or scare her. Like suggesting she start making notes for things that need to be remembered.

I had to start making lists when I was 28 - but no one was constantly reminding me of my memory fading. It's just part of life.

Doctors (some) will use technical names as a scare tactic - don't fall into that. There is nothing wrong with your mother's routine - except maybe the smoking - leave her alone and just try to assist her. I gave my father a notepad. When he asked why, I told him that he worries about so many things and I was afraid he would forget a few. I 'advised' him to write down everything that he needs to worry about. Message delivered and for less than $.50

Look in your mirror and ask yourself, what would you want someone doing and telling you?
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My mother is beginning that slippery slide into dementia. You'd have to be pretty close to her to notice. My 3 MIA sibs thinks she fine, but they spend 15 minutes twice a year with her and don't see the whole picture.

I was at Mother's yesterday and she repeated herself 3 times...and then would look a tad puzzled and say "Did I tell you this already?" I just say "yep" and I could see the look of confusion waft through her eyes.

What possible good could come from me telling her that she's "losing it"? She's 88, she has like, 2 friends, she's outlived everybody and will probably live another 5-10 years. It's VERY sad, because this is my future, too. Although none of my grandparents developed dementia, it terrifies me.

Just be gentle with her. When she repeats herself, ignore it. I think that my mom is struggling with certain things (reading or following a newspaper story and making sense of the context) but she can still do puzzles and just adores her Bingo day.

The best part, for me anyway, is that she is 100xs nicer than she used to be. I'm appreciating that aspect of this.
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Stop trying to make her accept her dimentia and you will find your stress lowering. You have to "join her on her journey". Work around her deficiencies at home. If she wants to eat the same thing every day let her. It is what she wants, it's not hurting her and it makes her happy. You eat what you want and she eats what she wants. With this disease pick your battles carefully and make them rare. Just go with the flow.

If you can get her to go to a senior day care or Alzheimer's caregivers day out program that would be good. Just tell her that there is a social group that you thought she would enjoy. If you bring a caregiver in at some point, tell her that it is a housekeeper to help you. At first some light housework is done, but the goal is to move into them being companions.

Regarding gaining benefits, the folks interviewing her have seen all this before. When they ask a question and she answers incorrectly you can shake your head and they will know that she gave an erroneous answer. If you must provide the requested information, protect her pride and dignity. Choose your wording well and with kindness.
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When my mom was diagnosed in her early 70's, it was not up for discussion. Frankly, she is 82 and it has never been up for discussion. And, that's ok. Why reinforce something like that. So, when mom came to live with me 5 years ago, I just started the long process of white lies that were to benefit her and her care. I hated the thought, early on, of lying to her, but it was in her own best interest. I could only imagine how she must have felt as she was losing her abilities to take care of herself, to understand who she was, who anyone was, where she was, etc. etc. So, do your research and get your mother's affairs in order so that you can obtain whatever help you can to help her on this journey. Please, do not stress over her unwillingness to talk or accept the dementia diagnosis. When I put myself in my mom's shoes, honestly I wouldn't want to talk about it either. I would hope that my kids would do the right thing by me. Best of luck to you. Take care of yourself always.
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My Mother never accepted that she had Alzheimer's. We just plaid along that she was fine. I know in her mind she knew but just refused to admit it to us. She was very good at hiding it also. I had friends tell me that there was nothing wrong with her but it was so obvious to me. We had her for over 4 years and just stayed clear of ever saying anything. When she would say something that was wrong and I would see the look in her eyes that she knew that I knew what was going on I would cover it up for her, I told her all the time OH MOM!!! I do the same thing. I often wondered if it was pride more than anything. Mom was a very strong business woman when she was younger. I know she knew that I was covering for her, she would just smile at me with a kind look in her eyes. My sister would call often and quiz her, she lived out of state and would never help out. Mom would get a frantic look on her face so I would sit next to her and give her the answers to the questions. As far as having her approved for benefits, we were lucky and never had to do that with Mom and I'm not sure how you go about that but if a person talks to her they will know, they are trained in this. Also you have your doctors diagnoses to fall back on. I was always taught not to take their dignity away from them and I felt pushing Mom to acknowledge that she had Alzheimer's fell into that category. On the other hand My sister would push and push and try to make her admit that she had it, this only upset Mom and she not only did not want to visit her but she most of the time did not want to talk to her on the phone. She was afraid that she would be quizzed. At times Mom would be talking to my sister and just throw the phone at me and say ask Barb. I know you are going thorough a tough time and its not as easy as it sounds, I have been there but take each minute that you have with your Mom and cherish it, I lost my Mom a few months ago and Miss her so BAD. At times I though I could not continue on taking care of her and now I wish I could do it all over again. You might also pump her full of Vitamin B and B12, I know it sounds crazy but if you read about B12 deficiency you will be amazed at what it will do to a person. I have sever Vitamin deficiency's, at one time when I was unaware of what was going on you would have thought that I had Alzheimer's. I could do a report at work, get up and go to the restroom and have no idea that I had done the report. It was very scary. Of course when Mom was diagnosed I was in denial so I began pumping her full of Vitamin B12 and Vitamin B although it did not change that she had Alzheimer's you could see a big difference in her behavior. You can't take to much B12, you just pee the excess out. Plus read articles on what the United States considers deficient level on B vitamins compared to Europe. Do you realize our standards on this is way under the norm for Europe but in Europe the amount of people with Alzheimer's is much lower. I hope I have helped in some way.
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These answers are spot on. My husband also has Anosognosia. In a way, I think he may be happier not knowing what's going on, but it sure makes it somewhat more challenging for the care giver. Our city has a large research hospital and the neurologist there after 2 years and two major cognitive test has confirmed a diagnosis dementia/Alzhiemers. Get your diagnosis and this also helps you move forward even with your LO not being on the same page. Know you are doing the best you can.
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I've been dealing with my mom and her Dementia for about 5 years. It is VERY difficult, and unfortunately there is not much that can be done. 'Laurieo' is correct, those with Dementia more often than not also suffer from Anosognosia, a condition where they, through no conscious effort of their own, suffer from denial. You can't tell them they are wrong for 2 reasons. #1 they won't believe you because in their mind they are 100% correct, and #2 they likely won't remember anything you tell or show them due to the Dementia. Doctor's are very aware of the signs and symptoms of Dementia, your mom won't be able to fool them.
I have found it very hard to 'lie' to my mom, but I'm getting better at it. My mom also has very bad scoliosis, and a lot of back pain, so we use it as an excuse for why she shouldn't do some of the things she wants (and thinks she still can) do - it helps. There are day care places for dementia patients, where she can go and be around others for several hours a day, giving you a break (which is extremely important).

Very best of luck!
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I agree w others, with dementia or Alz don't expect to be able to reason with for any and all situations. By definition dementia/Alz means the person has a broken brain and as time progresses things get worse not better. She will definitely need 24/7 care and no one person can expect to be able to cover all the need bases that need to be covered. Such as wandering, show-timers, sun-downers, forgetfulness, down right oneryness, confusion, eating issues, bathroom issues, business & financial issues. Not to mention being @ home thinking they can do things they used to could do that involve fire, appliances, power tools etc. Does she have money? Medicare? Medicaid? Look into places that can offer the needed services she needs. Talk to a social worker. Ask a lot of questions. Recruit her doctor to have a talk with her about what she needs. But have a plan of action BEFORE you do that. You may need formulate a plan as in Plan A and if A doesn't work than instigate Plan B. Each individual is different depending on current situation and what resources that are available at the time. #1 do not beat yourself up if she has to go to a facility. You can still be there for her and still work and care for your family. Expectations of family are greatly diverse. From keeping them @ home to dumping them in a facility. Just because someone has to go to a facility does NOT mean that you can't be there for them. In fact, she will need you to keep up with &/or coordinate and monitor the care she receives. Do not assume once she is in a facility that her care is being done correctly. Although she isn't @ home you just take on a different variable of problems. ex: confirming on week/month basis that she is getting the correct medications. Is her medical, personal hygeine/eating/physical therapy/mental therapy being handled alright. If you/her can afford it I reccomend a monitor to make sure she is not being abused/exploited. (better to be safe than sorry) (for those who can afford it) Expectations are where a lot of the stress comes from for families. Remember that staff for ex: can only "clean-up" so many patient's within any given hour. So when a mess happens one cannot expect to have someone come in within 2 to 5 minutes to clean it up. Now if it's an hour or more than yes staff need to be made aware. Remember 1 person or even 1 family can only do so much.
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Another issue to look for - if you don’t have a firm diagnosis yet, is a simple urinary tract infection (UTI). Pharmacies sell the test strips now, so you can have Mom pee on a stick at home. Hopefully. Tease her by telling her you want to make sure she’s not pregnant. For severely impaired, you likely have alternative ways to access the urine to test. This is the SAME process the labs use to confirm UTI (tho they test again with their own pee sticks). If the stick is positive, get Mom to a regular dr ASAP. A UTI is impossible to detect by waiting for complaints of pain - most people don’t have THAT MUCH PAIN - plus - they won’t recall if they had burning while urinating. This infection is very common in elderly people and it causes memory loss and confusion when left untreated.
A little off topic, sorry about that. It’s important to get respite help so you do not “disappear” as a caregiver at the sacrifice of yourself. Keep the job IF YOU MUST, but Self care must come first (mentally in your head) to be a good caregiver to ANYONE ELSE. Even just part time. You deserve time off from work AND caregiving to go for a walk or see a movie or whatever helps YOU. I read that Alzheimer’s and dementia patients can read body language no matter how impaired they are. I’ve tested the theory and it’s true. If you come home tired and grumpy from your long workday, Mom will feel guilty for asking for help. That won’t help matters. She won’t recognize that guilty perception, but body language is incredibly important. Don’t bring stress from work home. Go to the gym or something to wind down so you arrive refreshed with a genuine smile. It will make all of your lives and interactions a bit easier! Wishing you well.
Remember: just get through today as best you can. Including doing something for your own health and wellbeing.
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