Hi Everyone, I wanted to ask if you know how dementia is properly diagnosed and what your experience has been. My mother in law who is wonderful has been in a slow, steady decline with dementia symptoms for the last 8+ years, with paranoia about missing items, not bathing or changing clothes, and episodes of rage and aggression. She's very resistant to going to the doctor, and we don't live in her state, so it's been really hard. Last December we finally were able to have her see a geriatric specialist, but the doctor just did a quick, basic cognitive test in the office, and per her notes, concluded that there was no evidence of cognitive decline. We've seen for years that this isn't the case. Just this morning my husband's brother sent us a video where she was in a manic, physical altercation with her husband, in a rage, and kicked him out of the house. He's 84. I'm now looking for another geriatric specialist for her, but I want to make sure they do a thorough assessment and understand what's been happening with her for so many years. We're concerned and very frustrated searching for help.
Good luck. It is very difficult to manage when you are far away.
Gretchen
Also the POA gives your sister in law the power to make the medical decisions for her. While you don’t want to force anything she does have the right to make these legal decisions. The health and safety of her 84 year old husband is of critical importance too.
I know how hard this is because my mother has dementia and lives in a distant state. I wish you luck and if you like post back and let us know how things turn out.
I realize you've said it's difficult to get your MIL out of the house, but you are planning to try to have her seen by another geriatrician, so perhaps you can get her to go see "someone you know whom you want her to meet"?? Based on the results of this testing, the neuropsychologist will make an appropriate medical referral, possibly to a geriatric psychiatrist who specializes in dementia. If this is important to know, the exam is covered annually by Medicare regardless of whether it is done by a physician.
BTW, an MRI alone is often not enough for a diagnosis of a specific dementia. It needs, as a minimum, to be a volumetric MRI: to show the size of different brain areas compared to what the size is in a normal younger adult. If for example, the hippocampus--the primary area involved with memory-- is much smaller than that of a normal adult, that suggests the cause of a memory deficit. But to simply get a dementia diagnosis, an MRI should not be required. In the fairly near future, there may be widely-available blood testing and cerebrospinal fluid testing for Alzheimer's, but not quite yet.
* The 'quick' medical assessment for dementia doesn't really - necessarily - provide you the information you need in terms of mental / cognitive decline. Although, for legal reasons, you do need a medical provider's written assessment that the person is unable to care for themselves / due what is in their best interest.
* I would encourage you to hire a medical social worker to assess the situation and work with your mom on a regular basis.
* Most people with dementia or losing cognitive abilities are resistant to seeing a medical professional.
* At the very least, SHE SHOULD NOT be living alone (w/huband 84). He cannot manage / handle this. Both of them need supervision and/or moving into a facility for either assisted living or in a division for those w more severe memory loss.
- To 'kick out a husband - 84 - due to her behavior is absolutely unacceptable and needs to be addressed ASAP.
- What if she locks him out of the house with the 'shirt on his back' and she goes to bed and forgets what she did? ...
- and will she care what she did?
- What if he get pneumonia --- sitting on the door step all night long ?
- Starts walking and falls and can't get up.
This behavior of hers in how she is interacting with her husband (in a rage, kicking him out) cannot be tolerated.
* What is the husband's brother doing in all this?
Is he supervising ?
visiting regularly?
taking responsibility for care?
Someone needs to step up and manage their needs.
* Do ask Adult Protective Services to make a visit and/or call the hus' brother to discuss the situation.
* If you haven't looked at placement facilities, it is time and/or make other arrangements.
* Get all legal documentation in order.
You/family needs to make decisions on their behalf ASAP.
I would suggest that you/your husband make a trip to visit / assess the situation personally. Clearly, they either need to be moved closer to you / family or other living arrangements need to be made.
If it happens that you cannot get a medical provider to document their (her) cognitive decline - that she cannot make decisions on her own behalf for her own welfare - then the sad reality is that she is on her own and can make her own decisions, even if kicking out her husband in a rage - or causing harm to herself.
Perhaps her husband's brother needs to take action to get him moved out of the house before something 'more' serious happens - although kicking a man 84 years old out of their home is quite serious.
Gena / Touch Matters
To convince him to go the the second neurologist, we had his friend and former colleague take him. He was miraculously cooperative.
This diagnosis plus the DPOA was key to us taking away driving, ending his disastrous handling of finances, and also to getting meds that helped (but did not entirely eliminate) his severe obsessive symptoms. He became less angry and somewhat more docile. But bathing and changing his clothes….he resisted to the end.
I truly wish you luck and all the best with this horrific process.
If your MIL doesn't have a PoA then getting her diagnosed before this happens will mean "someone" will need to pursue guardianship or else she will eventually get a court-assigned one.
You will probably need to use a therapeutic fib to get her in for an exam (that's what I did with my Mom). Example: Medicare requires an annual physical in order to continue getting the benefit... or whatever story you think will motivate her to go. Then make sure someone is in the exam room the entire time. Make sure the staff knows the real purpose of the exam ahead of time.
She should definitely be tested for a UTI or any other medical problem that can temporarily create dementia-like symptoms and may have a treatment. Dementia is mostly diagnosed by discounting all other possibilities. A neurologist can do scans/imaging but you'll have to get MIL to cooperate with this.
I agree with others who say the ER strategy may be the last resort, but they do not test for dementia in the ER (and the EMTs won't come over "dementia" since this isn't a "life threatening" emergency). Your BIL will have to tell them she's acting strange and may have an untreated UTI. Once she's in the hospital they will test for this, and it may be possible to have her discharged directly to a facility or to have her held in the psych wing until she complies with meds for her agitation/aggression.
So my short answer for you is to get her on a waiting list for a neurologist.
We've been trying for years to get my mother an appointment. Neurologists in our area don't stay long. Hospital nurses have told me the neurology shortage is a crisis. Then we get her on a months-long waiting list in a neighboring city and that provider leaves.
So we managed to get her to complete half of the psychological testing necessary to get a diagnosis from a psychologist. (Around 8 hours.) She refused to complete the other half, and the psychologist gave us his best guess: "some kind of dementia".
We moved her from her house to an independent-living apartment, and when she wandered the halls, we moved her to an assisted living apartment, and recently the director of that facility said she definitely needed to be in memory care, so that's where she is now. It's been a long messy process with lots of arguing and crying. She blames us. She says there's no reason she can't stay in independent-living and we are just stealing her money and being mean.
Whatever is going on with her brain has been going on for at least 8 years, and it fluctuates. She goes from walking around carrying on conversations like a professor, to talking for hours to imaginary faces she sees in the air conditioning vent, cursing me out, and getting dressed in the middle of the night to run away from killers. Not much is wrong with her memory, so I guess its Lewy Body, or vascular dementia, or mental illness. No matter what it is, she is not safe living without supervision and that's bottom line. Mom's safety.
Good luck.
If her husband is not willing to go that route your MIL will most likely need a complete neuro-psyche evaluation. A referral from her primary care provider will be necessary.
Hold on to that video! And get your MIL’s husband copies of the Activities of Daily Living and Accessory Activities of Daily Living to fill out regarding his perception of his wife’s capabilities. He can provide them to her PCP. MIL should fill copies out as well; the differences can be very telling.
The PCP will first want to eliminate any possible physical reasons for the behaviors she is exhibiting and then may also require an interim step of an Occupational Therapy visit. Considering your MILs aversion to doctors that’s going to be challenging. It may help if your MIL is told that the visit is just to provide her tools and information to keep her safe in her home.
If the Occupational Therapist thinks it warranted, a referral for a neuro-psyche evaluation will follow. Good luck!
As far as what TYPE, there are many. FTD (fronto-temporal), Alzheimer's, Lewy's and they all manifest different in terms of some "symptoms". MRI may be useful only in latter stages and the best diagnostics/most accurate diagnostic are, unfortunately, done by autopsy after death. There is no known treatment and dementia is treated by symptoms.
If you go with Mom to the doc ask for this evaluation. You should keep a diary of what you, yourself are seeing on a daily basis. Short term memories, hallucinations, lost items, being lost herself, sleep disorders and etc.
In terms of dementia there is a mass of information online. Use trusted sources such as Cleveland Clinic and Johns Hopkins and etc. or the NIH, Alzheimers.org and so on.
I wish you good luck.
Your brother in law could show the video to EMS and the ER etc .
Hopefully they would have admitted her and your brother in law could have told them what was going on , they can test her in the hospital , for cognitve and psychiatric illness . The ER won’t do it. She would have to be admitted to the hospital .