Getting diagnosis

JiminTexas

My DW is still fully funtional, she can take care of her personal functions and daily activities. However her memory is getting worse weekly, to the point that now she forgets items from 5 min ago. Aside from the memory issues she has a tendency to create narriatives in her mind that she insists are the truth. This includes me wanting a relationship with her niece, who lives out of stat and whom I have met once, and her daughter being angry at her for various reasons.

So my question is, how do you get them to agree to a diagnosis, and is a diagnosis even worth anything?

Thanks in advance for advice.

jfkoc

It is imperative that you get a diagnosis that follows correct procedure.

Why? There are treatable causes for some dementia. To ignore these would be harmful to you your wife. You can read about what the procedure is on line as well as on the Alzheimer's site.

There ismore than one way to get your wife in for diagnosis. One that has worked for many here is to make an appointment with her PCP. You both go to the appointment. You can say it is for you and ask that she go with you or you can say it is for both of you as mandated annually by Medicare. Make the appt in the morning with a nice lunch planned afterwards.

In preparation you must advise the Dr what your concerns are and have her/him on board.

This will be a "work-around" solution. Work arounds will become a way of life as you progress.

Please do not discuss the problems you see with your wife or the need for a diagnosis. That is a win lose conversation and what you are going for is a win win.

Ed1937

I fully agree. It is necessary to rule out any possible conditions that could cause symptoms of dementia. If you are lucky, the problem can be treated. Fiblets will become an important thing in your toolbox of things to get you both through this as easy as possible. Your goal now is to make it as easy as possible for her, even though it may require something other than the whole truth.

Another reason for a diagnosis is that some medications can actually make things worse for certain dementias, while being helpful for others. But be forewarned that a diagnosis might be changed to something different than originally diagnosed. This is not rare.

Iris L.

She has delusions, which are false beliefs, so she is already in mid-stage. You need to rule out dementia mimics, as noted by the above members. Afterwards, learn about Alzheimer's Disease and what you can do.

Iris

harshedbuzz

She is worthy of a complete workup. Two anecdotes from my family:

I tried unsuccessfully for a decade to get my mom to agree to have dad evaluated. During this time dad lost $360K day-trading online and alienated their social groups in different 3 states over 10 years. Her denial nearly cost her her own life. Believing dad to be fully functional, she relied on him to be her health care advocate at a time when he was unable to recognize she was ill or put together a plan to get her appropriate care. Had a neighbor not run into her at Publix after dad dragged her there and recognized the signs of acute liver failure (she was the color of a school bus) and driven her directly to the ER over dad's objections she would have died. We were fortunate that the hospitalist recognized her from his practice and had them track me down as an emergency contact. I flew down to Florida and advocated for her and stayed with dad in an attempt to keep him safe. While staying there I observed him get thrown across the garage when he crossed cables jumping his car, put a fork in the toaster and host neighborhood happy hour wear nothing but a bath towel. I don't think mom realized how much scaffolding she was providing day to day to allow dad to seem as functional as he was.

I was finally able to get dad diagnosed via a hospital admission when he had a psychotic episode that summer. He got much of the workup during his admission and then completed it on discharge. Dad was diagnosed with mixed dementia. One of the types he had was one of those treatable conditions with symptoms that mimic dementia. In his case it was a vitamin deficiency related to his drinking; once treated he regained considerable clarity. Had this been recognized and treated when I first expressed my concerns, they both would have had a better quality of life until his Alzheimer's became symptomatic.

Meanwhile in Maine, my favorite aunt developed dementia. She and my uncle were very private people and while I am certain he saw signs of her cognitive shift, he did not have her evaluated. Their PCP who reported to the court confirmed this. I suspect her assumed she would pass before he did and no one would need to know. That did not happen; he became ill and went to the hospital where he was diagnosed with a rare cancer and passed within the week. Before he died he begged my other aunt to "look out for her-- she's going to need you". Without his scaffolding my aunt crashed and burned within a year. Her sister came to visit and found her sitting in a cold, dark house wondering why the cable was out. My aunt did get guardianship through the courts, but it would have been so much easier had the documents been in place to provide for a continuity of care.

HB

SDianeL

yes, get the diagnosis so you can learn everything about the disease. It will help you. There is no cure but there are medications what will help the delusions. My DH is on Risperidone low dose 2x daily and it has helped. Delusions & confabulating (making up stories) are common in dementia & Alzheimer's. You can't reason with someone whose reasoner is broken. Read the book "The 36 Hour Day" it will help with your learning process. To get her diagnosed, talk to her Primary Care Physician. Don't tell her what the appointment is for. Tell her that Medicare requires it or make up another story. Fiblets are necessary. My DH told my daughter that I gave my Step Dad $9000 for his birthday. My sweet daughter didn't miss a beat and said "where's mine?" ☺️

JiminTexas

I appreciate all the responses and thank you all. Couple of things to clarify,

I already have all the legal paperwork in place, medical and legal POA, secondary trustees, etc. My daughter is a nurse and has medical POAs for both of us.

I have been managing her meds and medical care for some time now. She doesn't sleep well and has allergies so she takes Claritin and Benedryl but I watch to make sure she doesn't take too much.

She has brain fog a lot lately, she says she "just can't wake up today", but it's everyday.

So I am back to my original question. How do I get her to go to a specialist to get a proper diagnosis? Our PCP already recognizes she has some amount of dementia but he can't give a diagnosis. I had her tested by a nureopsychologist, the 2 hour test, back in 2020. At that time the doctor indicated most mental faculities were good but that she was exhibiting signs of early dementia. My DW didn't take it well and refused to discuss it any further. This is why I will have a problem getting a diagnosis. So looking for ideas and how to get this done.

Thanks in advance.

mrahope

Medicare offers an "annual wellness" visit. Perhaps you can get her to go by making a specialist appointment and telling her that her regular doctor required it for the "annual wellness" check up? Tell her all seniors must do this. Just throwing out ideas.

I will admit that the process for my DH was rocky, at best. MRI was inconclusive, first cognitive testing showed MCI. He almost couldn't complete the second cognitive testing because of an angry outburst. When he did, he was simply told he had "mild dementia". Less than helpful, but at least that doc was able to definitively tell him to quit driving, and rule out other causes of his cognitive decline.

Quilting brings calm

Your PCP can rule out most of the alternatives to dementia- thyroid levels, B12 levels etc. scans can tell if there would be be something odd like a tumor. I’m sure some of that has already been ordered by the PCP. The PCP can even order sone of the medication meant to help with dementia symptoms. You’ve done the neuropsych testing too, and gotten a tentative diagnosis of early dementia from them.

So what you really want is a neurologist to tell you what type of dementia it is, and a psychiatrist to order any needed psych type medication for agitation or delusions. Some of those meds work better for certain dementia’s. Try telling her the appointment is for you and she’s needed to be your advocate. Just tell the doctors office what you told her when you go in.

It’s hard when they won’t cooperate. My mom will cooperate and go whenever she has an appointment- she is never really sure why she is going ( except for the wet macular degeneration shot- she’s well aware of that). My step-dad was tested by neuropsych and given a non-specified dementia stage 4 diagnosis. He is refusing to go to the neurologist - I’ve scheduled his first appointment twice now. Probably will have to reschedule it again. He’s always been a stubborn so and so. In his case, he’s almost 84, with all kinds of serious physical conditions and it’s still early stages for him… so I’ve just decided to do what I can about getting him to neurologist doctor appointments and not worry about what I can’t.

Ed1937

When I got my wife in I told her we both had to go for routine testing in order to keep from losing Medicare insurance. I complained to her that I didn't agree with that rule for testing, but we couldn't afford not to have Medicare. I kept complaining about it to try to make that stay in her mind. The doctor was aware of what I told her, and he went along with it. It worked! You will find something that works for you. Maybe you could ask your daughter to start that conversation since she's a nurse, and might have a better shot than having it come from you. Your wife does not have to know what kind of doctor she will be seeing.

Iris L.

Benadryl can cause fogginess and cognitive impairment in older adults.

Iris

Chammer

What Iris said... zyrtec is an alternative that isn't an anticholinergic for allergies.

michiganpat

My husband has shown symptoms for 5 plus years now when he was 70. He just turned 76. I was unsure for the first 3. I knew something was wrong but his memory was good. Almost 2 years ago I sent an e-mail to his doctor explaining what I saw and asked her to evaluate him at his next appointment. I had brought up the subject to my husband a few times prior but he refused to listen. She did all the bloodwork and the basic memory test, which he did pretty well on. His was more obsessions, anxiety, paranoia, repeating things and not so much memory. I am seeing memory changes now. His blood work was normal. She wanted to do further testing but he refused. He was angry she suggested it and still talks about her doing "brain tests" on him. I have decided to let it go. At least for now. His symptoms are increasing slowly but steadily. Meds could maybe help his agitation and the time may come when he needs them but for now we are managing. The most difficult part for me right now is his constant talking, repeating and his obsessions, especially with the news. I am not saying my way is the right way but for us it works. I could force the issue but he has anosognosia and I would only increase his agitation, anxiety tenfold which would only make things worse. Next week could be a different story.

harshedbuzz

@JiminTexas

This sounds challenging.

Since you know your wife best, you likely have the best sense of how to approach this. My dad needed a geri-psych for medication management and expecting pushback-- I played on his anger at being diagnosed with Alzheimer's to make it happen. I offered him an appointment for a second opinion and maybe talk about getting his license back and he went for it. The Plan B in this situation was to trigger him into a rage (which was pretty common for him in mid-stages) and have him transported to a hospital with an inpatient geri-psych bed. Perhaps you could present the neurology appointment as a 2nd opinion and chance to removed dementia from her medical record.

FYI, Benedryl is not a good choice for the elderly as a sleep aid or daily allergy medication. It should only be used short term for severe allergies. It can cause morning grogginess and sleep hangover and is associated with cognitive decline.

Common anticholinergic drugs like Benadryl linked to increased dementia risk - Harvard Health

Alzheimer's Disease: Sleeping Pills May Lower Linked Proteins (healthline.com)

HB

JiminTexas

https://alzconnected.org/discussion/comment/185842#Comment_185842

Sounds like our situations are very close. My wife's memory issues and dilusions are steadly getting worse. She had her Thyroid removed when she was young so is on Thyroid meds. Our PCP requires blood work every 4 months so he has an eye on that. When we did the nuro testing we also did an MRI which was negative.

Like I said the dilusions seem to be getting worse. She has a narriative that I was enamoured with her niece and want to leave her. Her niece visited with her sister and husband last year for a few days. (She is 25 years my junior, lives in idaho, and something of a nitwit) She brought it up very angrily a couple of times some months ago but lately has been bringng it up every few days, accusing me of asking about her when she is the only one who has brought it up. So I am seeing progression in brain fog, especially in the morning, memory, and dilusions

So much like you i am just taking things day to day. I just wonder what else I should/can be doing.

JiminTexas

https://alzconnected.org/discussion/comment/185845#Comment_185845

Thanks for the feedback. I will try to dissuade her from using benedryl. I'm sure the link to dementia will scare her. I think she knows she is having memory and other issues.