Vascular Dementia

valerieorr

MIL was finally able to get into a neurologist and had an EEG and MRI. Also had a memory test and scored 6/30. When met with the NP who was sharing the results of the testing, she said her brain was smaller but that was due to her age (86). She told her that the EEG was fine but that she had some white spots on her MRI of her brain that meant she had vascular disease. She did say the part about being under the dementia umbrella, but did not put anywhere in the report that she had vascular dementia. She also gave her the option to take donepezil and that it wouldn't cure her but would help keep her where she was. The NP also stated she'd have to take an all-day test to determine exactly what type she had as it could be Alzheimer's also (and to determine competency). She gave her the option to take the test.

The report is incorrect in many areas because the individual asking MIL questions about does she sleep all night, have hallucinations or see people who aren't there, etc. recorded her responses as she gave them. We weren't asked if they were correct or given an opportunity to amend it.

I don't understand why the neurologist can't say she has dementia, vascular dementia or whatever as there are a number of institutions that require that diagnosis, including the memory care facilities we've visited. Also, why give MIL the option to take the tests if it's something we need to determine competency? My husband and her sister both have medical POA's for MIL and durable power of attorney; however my husband is primary. He has had some problems being able to use it to determine what her financial standing is (at the area banks) so that we would have a better idea of how much she could afford for memory care.

Is there something else we need to do? We contacted an eldercare attorney earlier and he was asking about her assets, but we don't know all that and her sister won't sit down with us to share the information. She just says to find a place…how do we do that without knowing what she has?

Anonymousjpl123

So sorry you are going through this. My experience was that getting any kind of diagnosis was a million times harder than I ever thought it would be. I still don’t know why it took so long: 1st neurologist would see my mom alone and never asked follow up questions; primary care doctors were new (she didn’t have any before); first she scored too high on the test then too low.

After about 8 months in Assisted living she got the official diagnosis after a week in the ER. It baffled me.

Ultimately, we did have an appt with an experienced neurologist at a memory center (6 month wait!) who sat with us for 1.5 hours and reviewed everything: multiple MRIs, lumbar puncture, etc. it was the first time I felt clear. But of course by then (nearly 2 years into the diagnosis journey) it was also more obvious.

I recommend an appointment with someone experienced in dementia: a primary doctor, a neurologist, or a geriatric psychiatrist. It may take time to get the appointment but it’s worth it. I also wouldn’t tell her what it’s for, and would call them in advance with your concerns. Since you have POA this will be easier.

I don’t know the reason for the reluctance to diagnose, but you’re not imagining it.

H1235

I’m not sure why the bank would not accept the DPOA. Is it a spring form(I think that’s what it’s called) that requires a doctors statement to activate? Did they want an original? I know this may feel uncomfortable but can he just go into her home and look through her paperwork and finances while she is out to lunch with someone? If she hasn’t created anything online he could create access that way with the information he finds. This would also allow him to see if bills are being paid and start cleaning that up if necessary. If your husband is primary DPOA and her sister is not sharing information that’s not right. Family can complicate things.
Could a note be sent to the neurologist via a medical portal explaining that she needs a diagnosis of dementia for AL placement, asking if you could get a letter stating a general diagnosis of dementia? Hope there is some useful idea here for you.

Lynn24

i agree, when my mother’s help began to decline mentally with dementia symptoms. I created an online banking account for her, since I had to solely manage her finances.

valerieorr

Things have changed since I last posted: Mom had a fall, ending up in the hospital for a week and rehab for 3 weeks. At that point we were able to move forward in having her continue her placement in the rehab/skilled nursing facility. We are currently working with an elder attorney and Medicaid specialist to get her qualified as soon as possible.

Mom improved a lot with the rehab, but once it was over (due to insurance), she has been losing strength. Part of it is due to the caregivers having her in a wheelchair as she is not able to walk very far by herself and has already had 3 falls, due to trying to get out of the wheelchair or walk by herself further than she is able. She also hasn't been eating or drinking much for about 2 weeks now and has cycles of sleeping a lot or being awake most of the night and then sleeping most of the day. We believe the eating may be due in part to her not allowing anyone to brush her teeth or take her dentures out (bites on toothbrush and fingers), but has complained of mouth pain. We are having her seen by a dentist and has been tested for a UTI.

Is this a new stage? Is it normal?

M1

I don't know if you can say it's normal, but it's expected decline. Have you asked for a hospice evaluation? Sounds like it's time.