I know he is not getting the best care

Mama Cass

Kaiser simply gave him some pills and referred me to a social worker.

Shouldn't he be getting PET scans and have a Neurologist?

What should I be advocating for?  I feel like we are falling in the cracks.

Crushed

We are with Kaiser (Maryland) , my wife was a physician  and I have taught health care risk management.  The last time DW saw a neurologist was 2013.  Kaiser is very medically honest in that there is NOTHING that can be done medically for an Alzheimers patient  .   That is a hard pill for some  people to swallow.  Alzheimer's is a  an incurable almost untreatable disease.  We certainly had lots of assessments to determine she had Alzheimer's,  but once the diagnosis is made medicine has almost nothing.  The more advanced the case the more likely you PCP can do the diagnosis

Rescue mom

I assume you have a diagnosis of dementia?

If so, there is virtually nothing else that can be done for him about that. 

In our experience, the  neurologist was the one who gave DH the Dx and the usual Alzheimer’s meds. After that, nothing. I had a hard time getting my head around that, but the truth is, there’s not much else they can do.

Most people here find neurologists aren’t helpful after diagnosis. If you already have a diagnosis, and meds, then theres probably no need for neurologist.

A social worker would have been nice. That could maybe help you with ways to handle his various behaviors. But I got best info and more help from support groups, including this board, of spouses. They have experience with the problems dementia brings. Nobody knows which specific behavior or symptom will exhibit, when. (Some things happen later, or sooner, but there are countless odd/off behaviors to deal with, and not every patient has the same symptoms or losses). You just have to deal with it when it happens.

A lot more can be done to help *you* (which helps him) than can be done for him, outside of basic caregiving. One nurse told me flat out they can/should do more to help the spouse because there’s nothing they can do for the PWD.

Some specific symptoms, such as hallucinations, sleeplessness or extreme agitation, can be treated medically if or when they occur,.

Mama Cass

Thank you very much.

Diagnosis was very vague from PC.

Cognitive tests by Social Worker.  I had to scream and yell for the second test to identify progression from mild cognitive impairment to dementia.

Alzheimer's is my best guess based on process of elimination of other causes.

I am reading in posts about stages, how are they identified if not through further exam?

Rescue mom

The “stages” are not hard and fast, not set in stone. You will see the signs/symptoms for yourself. It’s not uncommon for a single patient to shows signs of 2-3 stages. A poster here recently said her spouse was spread out among many stages. I think many people here use a stage as a kind of shorthand in explaining where their spouse is at, in terms of the disease.

A lot of people just say early, middle or late Alzheimer’s ; a lot of doctors do not even use the seven stages, or just see them as a conversational thing.

You should read a piece that’s online and free. You can Google for it, “Understanding the Dementia Experience” by Jennifer Ghent-Fuller. It’s about 25 pages, excellent explanation.

I guess I’m still not clear if he has been diagnosed or not? Which dementia does not matter much, except that of the few meds there are, ( which don’t help a lot of people at all) some are better with some types than others. If he was given meds already, I’d think/hope they have some idea which.

Crushed

Mama Cass wrote:

Thank you very much.

Diagnosis was very vague from PC.

What does the record state?  Everything at Kaiser is in the electronic record

Ed1937

Rescue mom wrote:

You should read a piece that’s online and free. You can Google for it, “Understanding the Dementia Experience” by Jennifer Ghent-Fuller. It’s about 25 pages, excellent explanation.

Here ya go. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf