Why no diagnosis?

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bluebell19 Asked June 2021

Why no diagnosis?

DH took 91 year old MIL to dr for first time since pandemic, and I was thinking they would test her for dementia but they didn't - all it says is 'memory issues probably due to small vessel disease'. I guess based on an earlier CT scan from 3 years ago where there was some 'white matter atrophy' or some such.
She has an abdominal aneurysm, a hernia and some kidney cysts that they are doing an abdominal CT scan next week since the last one was in 2019. But no dementia question test or nothing. She had UTI but MIL didn't have any symptoms and the treatment didn't help her memory issues or sundowning fears as we hoped it would.

She has declined since the pandemic, she was late on her bills in January so we took them over, got the POAs and everything. She cannot remember who anyone is or to take her vitamins or her antibiotics last week without prompting. She has a horrible time at sunset, obsessed with neighbors and took a fall trying to go over to see if they were home one evening, my son, 24, lives with her since that. He will be going back to college (hopefully) in August tho (late bloomer), so I was hoping for a diagnosis since to a large degree my DH and family are in a strange sort of denial, it's not complete denial but they just don't have any sense of urgency about her living arrangements. My son is the one who volunteered to go since it was just blank stares between DH and his sister. We also have companion visiting two evenings a week for a couple of months now and MIL thinks she is family, but I don't think it's realistic to pay for more or for 24/7 companion when there are nice facilities nearby.

Why wouldn't they give her the test and diagnosis? DH thinks the Dr. is more concerned with the other issues or maybe at her age they just feel memory issues are normal? Is a diagnosis even needed if we had to place her?

Alzheimer's & Dementia Diagnostic Criteria Senior Health

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score 11 · Answer 1

You need to see a neurologist. He can do some testing in his office and have the others like CT or MRI scheduled. Write a list of things you have noticed. I did one page only in 14 font. 1, 2, 3...
Don't go into a long explanations.

1. No longer can pay bills.
2. Can't remember to take pills
3. Sundowns, obsessed with neighbors

Hand the list to the receptionist and ask that the doctor look at it. This helps him with the questions he will ask. I also stayed in the room sitting in a corner. When Moms Dr. would ask her a question and she answered, he would look at me for confirmation.

PCP know a little about everything but are not specialist. Dementia needs a specialist.

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score 6 · Answer 2

The 'memory issues probably due to small vessel disease' statement is just saying dementia without using the word - for whatever reason some doctors seem to be very reluctant to use the D word, I think the only time I saw it from any of my mom's many, many doctors was on her death certificate. I'm not sure of the heath care protocols in the US but very few people in my corner of the world are diagnosed by a neurologist, but what she needs now is cognitive testing to look beyond the physical problems.

Helpful Answer (6)

My Mom was diagnosed of Alzheimer's Disease by a Neurologist, he did a MRI on her brain. Normal pressure hydrocephyllis (water on the brain in the frontal lobe). She had Alzheimer's Disease for 12 years, I took care of her in my home 8 of those years. It is very hard to be a caregiver, so I toughed it out and did it myself because I didn't want to put her in a nursing home. If anyone has any questions about be a caregiver, I can tell what I went through.

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score 6 · Answer 3

Bluebell, you may want to contact the physician and discuss your concerns about the progression, including the sundowning and paranoia, before she goes for her CT scan. The facility staff should know, in case they were planning on giving her sedation.

Helpful Answer (6)

She got through the CT fine, but it was early in the morning and that is her best time. She did not want to drink the stuff, and kept putting it down saying she was finished, but thankful that was the only issue.

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score 6 · Answer 4

BlueBell , every thing you mentioned indicates dementia. It is very hard for family members to acknowledge it . My husband was diagnosed with Mild Cognitive Impairment, after an intense 2 day test, 3 years ago . I do not need a doctor to say it is now dementia. The neurologist he sees does not spend time discussing it . I have found my self a very good Caretakers meeting and have learned a lot . I have learned about the disease, how it progresses and great support . I my case it’s just the 2 of us and I have the POA . When the time comes I will do what I have too .. If your husband is not able to, some one should be gather information, sooner rather than later. Sad to say but she will get worse and keeping her at home might not be an option . It takes 24/7 care. There are agencies everywhere that can lead you in the right direction . The worst thing that can happen is to be blindsided and have no information or plan . Do not expect any input from her , her brain is broken and she is living in her own reality. Make a call to the Alzheimers association and they will get you started .

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score 5 · Answer 5

I am not sure what difference a diagnosis would make... What if the doctor would have said after spending 30 minutes with her that he didn't see any signs of dementia? It really doesn't matter, because the people who are around her all the time (you and your family) are witnessing decline and the inability to maintain herself and her home. So go ahead and assume she has dementia and make plans accordingly. That would mean she needs a caregiver to be in the home with her or she needs to go to a facility where folks can keep an eye on her, give her meds and prompt her to eat and bathe, etc.

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score 4 · Answer 6

You will need to contact the doctor who gave this report and tell him you need testing and or a letter that confirms you can invoke your POA to place Mom/MIL who will not, after the lad leaves for college, be safe alone. You can also request a complete testing report, a neuro-psyc consult. This is an MD issue to get these documents. This is what they have to do over and over again in order to get people into conservatorship. Tell them what you need to be done and they will be able to direct you.

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score 4 · Answer 7

You can also ask her doc to refer her to a neurologist that specializes in dementias. I ended up doing that when a retired nurse friend of my parents told dad that he in no uncertain term did not have AD. Now in his case his PCP had diagnosed him with probable AD. While the neuro did confirm AD he also found dad also suffered from Vascular dementia - dad had been having strokes in the balance center of his brain causing his falls. The strokes had no noticeable outwards signs.

Your MIL really shouldn't be left on her own, especially at night. What does DH and SIL plan to do when son returns to college? MIL living on her own will be a disaster waiting to happen.

Good luck to all of your family.

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From what I can figure, DH and SIL are just going to wait for the disaster.

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score 3 · Answer 8

I think her doctor is focusing on the more critical health concerns right now. An abdominal aneurysm could be fatal if it is a major blood vessel and not treated. Cysts on her kidneys could lead to acute or chronic renal failure and do need evaluation and treatment. Both of these conditions could cause confusion if your MIL's not getting enough blood supply to her brain and/or her kidneys are not filtering out toxins. So fixing these issues, may help relieve some of her confusion. After these more critical issues are addressed, then her mental diminishment can be addressed. She may have a better evaluation and treatment for cognition from a neurologist, but this doctor would also recommend treatment of the other conditions first.

In the meantime, your MIL needs to be safe and her health concerns need to be met. The person with her POA for medical is responsible for making sure her medical needs are being met - and it seems they are bring addressed. The person with POA for financial should work with person with POA for medical make sure that she needs are being met - medications given as prescribed, meals, basic needs met... These 1-2 people may be waiting on outcomes of treating other medical problems before considering other more permanent home situations.

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Thanks! The AA somehow disappeared (?) and the other issues are stable. My husband is POA for everything, daughter is not really involved at this point. She says that in the end, MIL can move in with her (2 hours away in the country) and she will be changing the diapers, so she's giving everything to my husband while she's in town and living in her home. I think that's absolutely ridiculous, we will most likely place her in facilities nearby as we have been the ones caring for her all along and she doesn't even know who her daughter is.

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score 3 · Answer 9

Not sure where you live. On the west coast, the director and nurse from a memory care facility ( not a nursing home) did an in home evaluation which included the standard questions ( where are you, what day, season, remember 3 words, count back from 100 etc) and agreed Mom was a candidate for MC. I am so confused, Medicare has a no charge annual dr visit where this test is given, call and schedule with her dr for the Medicare physical. Regardless, if she has the funds for in home care, contact a reputable caregiving company and get 24 hr care in place. Or get her into a facility. If funds are limited, get her into one that has Medicaid beds so you can start the process of spending down her assets on HER care to transfer to Medicaid without having to move. Schedule a family meeting with those who care about her and get going, it will not improve.

Helpful Answer (3)

Thanks, I wish I could but as daughter in law, I just have to sit on sidelines. She sent her in home caregiver away so placement is probably the best option, especially with her limited funds.

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score 3 · Answer 10

Your son needs to get on with his life. Could I suggest insisting he continue with his plans for college? Regardless of what family may say in wanting him to "solve" MIL's and family's problem? He really does not have that obligation and whether he goes back to school should not hinge on MIL's diagnosis/placement issues.

Helpful Answer (3)

No doubt! His college is within 1 hour driving distance but he has an apartment lined up for October within walking distance to campus and I'm all for it! He went to community college for his associates(took a while) and lived at home and then this stupid pandemic pretty much ruined his other plans. He does need to get on with his life!

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