I am caring for my wife of 71 with dementia/ Alzheimers. She saw a neurologist for the first time the other day. A monumental task it was.

We did do all this with my mom. The neuro physiologist appt had to be cut short because she was getting too anxious. Even at the earlier stage she was in, she was starting to look to me to fill in the blanks, and help her answer stuff, and having me out of the room made it difficult. For the brain mri, they gave her Ativan to calm her so she would be still, she slept through, it .

But it was all necessary for the offical diagnosis. It turned out, based on the results, that my mom had a mixed dementia, with her brain MRI showing signs of both Vascular and Alzheimers dementia. That was important according to the neurologist as Alzheimers meds wouldn't make a difference in her case.

Also, all of this testing meant that I could get an offical "letter of competency " from her neurologist to put with her health and durable POA. It stated that based she was his patient, diagnosis, and that she didn't understand the mental decline, and that it was appropriate for her POA to be in effect. That has been useful in taking care of her affairs.

Hi JonC73,
My husband has had vascular dementia for over five years. This has become worse over the past year. He has been on a Rivastigmine patch for about two years. I'm not sure how much it helps. He is also on Memantine XL. He was initially placed on Aricept, but he could not tolerate it. It caused him to have hallucinations. It is possible that he would be worse at this point if the medications had not been started. Memory is pretty much gone. He seems to be happy wherever his mind has gone. I pray every day for kindness and patience. This is a cruel diagnosis because my person is pretty much gone. ((((Hugs to you.))))

You're right, Jon, this is not how life should be. It's hard, isn't it? I had to place my wife of 52 years in a care facility, not by choice, but by necessity. You say she's just seen a neurologist the other day for the first time, and yet you use the terms dementia and Alz. Did the neurologist say “possible or probable” Alz? If the neurologist referred her to a neuropsychologist, the cause of her dementia hasn't been determined, that would be the neuropsychologist's job. The neuropsych would conduct a series of cognitive tests to try to determine the cause. The screening takes most of a full day and may not elicit a cooperative behavior from your wife. He said my wife seemed to be evasive in her answers. She came out of the neuropsych's office crying because she didn't know why she was doing this. You would get a final report from the neuropsych detailing his findings and diagnosis. The MRI is useful in finding any abnormalities of the brain, like damaged blood vessels or brain shrinkage. It's all meant to arrive at a diagnosis. Did her primary doctor or neuro eliminate any treatable conditions?

Rivastigmine (excelon) is one of the FDA approved meds for Alzheimer's, Lewy body dementia and Parkinson's disease. Once again, that's where getting the correct diagnosis is important. Also, know that the patch is meant to slow the disease process and eventually it will lose its efficacy.

Although we use fibbing to sometimes lure our LO into doing something they refuse to do, that is not always the best approach. If your wife is in the earlier stages of dementia, and you fool her into going to a doctor, she may realize she's been duped and be angry or resentful at what you've done.

It's true, your wife may not think there's anything wrong with her. It's possible, however, that your wife does know things aren't quite right, but is afraid of the diagnosis and prognosis so she denies it. Remember, you're her spouse, not her parent, so you can't boss her around. Even with POA, if she can still make her own decisions, you're only hope is persuasion, not coercion. You might express YOUR concern for her. Tell her about your own feelings, that you're worried and want her to see a doctor because you love her. She may eventually allow you to make a doctors appt with her permission. So at this point, seek some in home care and the expertise of an elder law atty.

And thank you for your concern of others.

First of all I want to thank all of you for your advise and caring so much to answer. I am still struggling on what to do. I know she needs placed in a home but I know the cost is staggering. I can get help from the Agency on Aging and possibly VA, I just don’t want to end up entirely broke. Besides that she just refuses to go. Yesterday was so bad my daughter called 911, she was yelling and being a little abusive. One officer said I could possibly go to a lawyer(just what polar bear said) and say she is incompetent to make her own decisions, then it would go before a judge. I hate to think of doing anything like that to someone you’ve been married to for 51 years. My prayers go out to all of you. Thank you so much.

Rivastigmine and all other dementia drugs had no effect on my mother. Even the Neurologist said to not make anymore appts with her unless something huge happens because she had nothing left to offer my Mom.
So, we just see her regular Dr. and he keeps her on a slight mood elevating drug.

My mother is 96yo and has dementia/Alzheimer’s. She has been on the rivastigmine patch for years – probably at least five. Her diagnosis at that point was unspecified dementia, but it really helped with her short term memory and confusion, with no noticeable side effects. He has gradually had to bump it up to the max dose, (I think it is 13.5mg?) She is noticeably more confused and agitated when she does not wear it for a day or two.
It is not a cure-all by any means, but if you choose to use it for her, I pray it works as well for her as it does for my mom! May God strengthen you as you care for your wife.

Jon, are you familiar with the online PDR (Physicians' Desk Reference)?   We used it for medical malpractice cases, in a evalulation to determine all the facts (interpreted either by in-house medical person or outsourced to a doctor.)  

https://www.pdr.net/search-results?q=Rivastigmine

Be sure to scroll down and read the Contraindications/Precautions and Adverse Reactions sections.

The MRI is very important. As well as the neuropsychologist. Has blood work been suggested? Not heard of the medication-write up a few questions you may have for your wife's next appointment. Otherwise, the neurologist is odering exactly what is needed. This is a brutal disease. As you read what people have written here, the anger, rage, frustration, sadness is a common topic. Start looking for outside support groups, a therapist for yourself, respite care, long term care options, have all financials in place. Read up a bit on Alzheimers, the foundation is quite informative if you've not looked at it yet.
Also, if you're digging around the internet for info, only use sites like the Mayo Clinic, don't go down the rabbit hole of "my second cousin started eating ground up Mungalo-lo berries in their huckleberry tea and voila-cured!" kind of stuff.
One more thing I try to do, is to find one good thing each day, something I just think is great. Keeps me from getting too angry about what dementia is doing to my husband.

Jon--Bless you for caring so much.

Yes, you are beginning the difficult task of finding out WHAT is exactly wrong with your wife so you can do the best you can by her.

Perhaps, BEFORE all these tests--she is presccribed a mild antianxiety med to calm her down. She'll need her 'wits' about her for some of the testing, but not for others. In fact, I cannot go through a CT scan machine w/o pre-tranqilizing myself.

I am personally not aware of that particular drug, but I do hope you find it helps your wife. Many strides have been made in treating Alz and Parkinson's.

I agree with PolarBear--fib to your wife if it helps her to be more cooperative--do whatever it takes to keep her calm and cooperative.

Discuss this with the Drs before you start the processes, and maybe see if it's possible to schedule more than one per visit. That way, the coaxing and fussing is kept to a minimum.

Hi Jon, I read your profile. Oh yes, I understand exactly. My mother was the same way. She refused to see doctors or do tests. There were times when we arrived at the doctor's office and she would refuse to get out of the car, not even budge when the nurse came out to coax her in. There were times when I got her to go inside and sit in the waiting room, she would make a scene and get up to leave. She fought me tooth and nail at every step. It was SO STRESSFUL.

Has your wife's neurologist diagnosed her with a specific type of dementia? Alzheimer's? I remember I had to fib and bribe my mom to get her to do any medical tests. So, be creative, think of what would make your wife cooperative, and tell her whatever she wants to hear so she'll do the tests.

I think it is best for both of you that your wife be in a care facility, or you hire in-home aide to help you. You can't continue living under constant extreme stress which will kill you, then your wife will end up in a care facility without you looking out for her.

Find a certified elder law attorney to help you out with the planning.