My 89 yr old MIL was diagnosed last summer with Alzheimer's, although we have known for several years that she has some type of dementia. She is in complete denial and every day is a struggle with her. The Dr who tested her and diagnosed her never once used the word Alzheimer's. She used a lot of medical jargon and really sugar coated it, and when we left her office I was under the impression she had mild dementia, which I found hard to believe!! I was expecting to hear Alzheimer's but all I heard was dementia. Her main Dr never used the term either, in fact she kept telling her she was doing good for her age!! She is diabetic, has had a heart attack and stents placed, requires monthly infusions for anemia, and in February was hospitalized with heart failure and had a pacemaker installed! She has also been having bouts of depression after losing her husband of 65 years to cancer in 2017. She has gout in her left foot which she ignores (very dangerous when you are diabetic) and a subcutaneous horn (cancer) on her cheek that they repeatedly freeze off but keeps returning within a month! I went on her "My Health" site and after reading several pages of notes seen that she was diagnosed with Alzheimer's!! Why was this never mentioned or any help for it given?? There are ways to minimize and maybe slow progression or at least get her to accept and prepare. It's already pretty advanced. It's nearly impossible to care for her with her being stubborn, mean, and in denial. Are they allowed to not tell her or help her and us deal with this? I have told her main Dr about her depression and she cant sleep at night, shes becoming incontinent, she wont let me help with her meds, shes becoming mean, bossy, and hard to deal with. I get no help with any of it!! I would like to switch drs but she doesn't agree with anything anyone says. What should I do? Hubby is so stressed hes ready to put her in a home and walk away, regardless of covid!

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I agree about getting all the documents signed that you will need, if you don't already have them, like DPOA, HCPOA, Advance Medical Directive. Hopefully, she's still competent to appoint those and execute.

Even with those documents, it's a struggle. You can get her to new doctors, but, most people with dementia have periods where they are difficult to care for. You can explore medication. For some conditions, it does help. But, often, there are still issues like you mentioned, incontinence, sleep disorders, depression, agitation, resistance to care, etc. It sounds like she has a fair number of medical issues too. I'd consider getting an assessment to see what level of care she'll need and if you want to get outside help to come into the home or if placement is better.

IMO, a lot of health care professionals aren't all that familiar with dementia. I'd try to find one that is very familiar with it. I'd also read a lot about dementia. Alzheimers is one disease that can cause dementia. There are other types of things too, like Vascular Dementia, which is caused by strokes. Also, Parkinson's can cause dementia, as well as Lewy Bodies. Some of these conditions are more appropriate for medication than others. A expert should be able to help with that. But, even with medication, the dementia will progress.

It's difficult for many people to accept and process that they have dementia. The brain may reject that diagnosis. And, even if they accept it, it's very painful and disturbing. Plus, they forget it and you would have to remind them over and over, which is rather cruel to do. It's like getting horrible news about your life over and over, day after day.

If your DH is inclined to choose placement, I'd plan now, because things can take a turn for the worst pretty quickly and it's difficult to act during a crisis.
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I agree, a PCP does not have the ability to care for a Dementia patient. You need to see a neurologist who will order all the necessary labs and tests to rule out other physical problems. You should know what type of Dementia because there are different kinds which some meds should not be used on.

Doctor's only need to talk to you if MIL has signed paperwork with each doctor stipulating who is privy to her personal info. Even with a Medical POA, the principle has to be declared incompetent for the POA to take effect in most cases.
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Dear kremer68,
Some drs, especially PCP, don't have the guts to tell a patient they have dementia symptoms. If the PCP suspects dementia, they should refer the patient to a neurologist or neuropsychologist, to get a diagnosis. If that's who did the testing and didn't tell anyone, I would raise "holy hell". Why is "Alzheimer's" in her record? What did she say was the problem? Dementia is not a diagnosis, it refers to symptoms, not a disease. The neurologists job is to determine what's causing dementia.

I can understand why your MIL denies any problems, because the doctor said she's "doing fine" for her age. I know she's 89, but with all her issues, she's not doing fine.

I empathize with your dad. Having gone thru this with my wife, I was totally stressed and felt hopeless. A care facility may be the best place for your MIL. Your Area Agency on Aging and your state Dept. of Aging can help. Give them a call.
I wish you luck.
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notgoodenough Jul 2020
Why do you think doctors are like that? ( rhetorical question). I dont understand why they won't just lay it on the line and tell their elderly patients what exactly is going on with their health?? I get doctors want to get their patients better, but for goodness sake! Like my mom's case, she's 86 years old with CHF for crying out loud! Do you really think we haven't thought about the fact that she's likely going to pass sooner rather than later? Even the cardiac surgeon couldn't bring himself to say she's started the process of dying! I had to say it first and then he agreed! I'm not saying you have to be cold about it, but to not give a diagnosis because it leads to a difficult conversation is just not right.
She has dementia, a catch-all term for cognitive impairment. Don't expect she will remember, that is what dementia is. Don't expect to be able to explain anything or reason with her about anything, that is what dementia is. Don't expect her to be able to do what she used to be able to do, that is what dementia is. Mom will not remember she has been diagnosed, it is not denial. Reminding her or arguing with her will only cause her agitation and frustrate and make you angry. Do not argue with her, you will never be right. She is not able to accept or prepare, that is what dementia is.

Does she have POA's in place? She will need them and it must be done for someone to be able to get her the help she needs. But, she has to be considered competent to have them prepared and to sign them. What about last wishes, will and other end of life documents? See an elder law attorney to get this done, or guardianship will be the only option and that can get expensive.

Diagnosing the type of dementia is a best guess scenario. Alzheimer's can only be identified for certain on autopsy, after death. And there could be more than one type of dementia occurring. Treating the symptoms is the best that a doc can do and it is a trial and error process. Dementia cannot be stopped or cured.

I suggest that you research types of dementia she most likely will have symptoms of several of the more than 75 types with Alzheimer's most common. Read through articles and threads on this site. Also check the Alzheimer's association website. Attend a caregiver support group. Read the 36-Hour Day. Learn all you can about dementia.
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There are strict privacy laws that prohibit sharing medical information (HIPAA). Who is your MIL's healthcare proxy?
Dementia is an umbrella term that includes Alzheimer's so in a way you were told, and you readily admit that the rest was "medical jargon" that you didn't fully comprehend. That said the doctor seems to not be very proactive in treating dementia and I would look for someone who is, perhaps a gerontologist if you can find one.
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Kremer68 Jul 2020
This had nothing to do with privacy laws. we are her healthcare agents and I was with her when she was tested. She was never told anything about alzheimers.
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