All these tests?

toolbeltexpert

So I got the ball rolling for my dw, my head is still spinning. Dw doesn't remember the visit and I could see it definitely had an effect on her. She conflated several stories about what happened. I do not want to continue subjecting her to things that are gonna make her progress quicker. I am cool with a cat scan to rule out tia or vascular dementia.  I want a dx, But they want me to do her BP everyday and record the results. All you medical folks help me understand, cause if it's not gonna help her cognition or stop the progression I am not gonna do it.  

Doing BP test is gonna keep her focus on medical treatments, that's gonna make it hell for me. As write this , am I being selfish?

I am amazed at the speed of medical technology, I set up the portal account and looked at some blood work test that were recorded already of test only a few hours old.

I gotta make a copy of the password and put it the safebox jic.

We all talk about letting go, well I am of the mind that I don't want to go the route of BP meds or any other that's just gonna prolong her hell.  I need a dx to get her meds to help her calm down and the mcf I visited said they need a dx from a MD, to admit..   

I am sorry if I have offended anyone I don't mean too. I am so conflicted at times making these decisions for my dw cause she can't. 

Yesterday afternoon she had a blowup, I was watering flowers and she came out and started pounding a table, that's what made me take notice,  she said get me a gun I'll end this all.  I was a couple hundred feet from her so I played the camera back and that's what I heard. I don't think I was the trigger but maybe she saw me watering, I went in and asked what made her mad, she said sheI couldn't  find the hummy juice jug.. I saved a copy of the video for reference. 

So what other tests would you medical folks say is a must have, no mammograms ect. I am asking cause you all will know.

Thanks in advance to my family here.

Kenzie56

Toolbelt, I feel your pain.  I'm not in the medical field, so I hope you don't mind if I jump in with my experience.  3 years ago, when the neurologist was diagnosing DH, he ordered many tests to basically "rule out" what could be causing memory loss and disorientation. (Some causes can be medically corrected). We knew he had A-Fib and hypertension - we also knew he had had a TIA, but he ordered CT scan, EEG, and MRI to see if the main cause was vascular. He order all sorts of labs to rule out UTI, Vitamin B12 deficiency, Syphilis, Vitamin D deficiency, Rheumatoid Arthritis, liver enzymes for alcoholism, etc. Conclusion? he has Mixed Dementia (Vascular and Alz). Doc wants him to remain on BP meds and blood thinner to prevent future strokes or TIAs, as the damage to the brain cells can make the symptoms worse and not necessarily be fatal. Being on dementia meds and his cardiac meds haven't slowed down the course of the disease...DH seems to be progressing like all the charts have indicated. Memantine and Donepezil helped his disorientation and memory for about 1.5 years...the doctor added Seroquel and that has helped his hallucinations, mood swings and paranoia. Brain cells are still dying at the estimated rate. Once DH had a formal diagnosis, our doctor will write a letter or RX any time one is required. DH had to be examined by a nurse (from the Home Care Company) in order to receive home care aide assistance, but now that that is done, I don't feel any other tests/exams are needed to show his status. The meds he is on are to keep him comfortable and not add additional symptoms. It is a challenge to navigate the medical landscape - not knowing what is helping and what may prolong this awful disease. Since this is just from my experience (and the experience of my MIL), I should let the professionals jump in and not take up too much of your time. Hang in there.

Jo C.

Hello, TBE; I am so sorry for the severity of what is happening, the stress this is causing and can well imagine how hard your head is indeed spinning.  You are not offensive nor are you being selfish; not one whit.   There is a lot on your plate and significant changes are looming in the midst of the over the moon behaviors you are dealing with, and you are "in charge" of it all.  Yet; for best plan of care, as overwhelming as it can be, it is best to carry out the necessities to avoid larger problems down the road.There are reasons for the tests and Kenzie gave some excellent input regarding that.   Was it a dementia specialist your wife saw in appointment?  Did the physician not prescribe anything at all for the behavioral issues?

A CT Scan would be very unlikely to show much of anything except to perhaps rule out a neurological condition such as a tumor, etc.; many times an MRI will also not show much of anything; this was so for my LO who was obviously very compromised, but three MRIs at different times over time showed nothing.  It was not until the dementia specialist ordered a SPECT Scan that the damage was seen and an accurate diagnosis for type of dementia (FTD) could be seen as we knew it was not Alzheimer's Disease due to the behavioral symptoms.  (We initially had received a misdiagnosis that led to med errors.)  The other testing will also help make a diagnosis and rule out other problem issues.  As we know, an accurate diagnosis for type of dementia is absolutely crucial as meds for one type can be contraindicated in another and make things even worse.

There is a huge list of possible medical causes that can cause or strongly contribute to dementia-like symptoms.  A good dementia specialist will seek that knowledge and rule that out.

As for the blood pressure readings, sorry you  got saddled with that; however, if your wife was anxious or upset at the doctor's visit, it would cause her BP to be elevated; even we folks without dementia can have "white coat syndrome" at an office visit which elevates our BP readings.  He/she may want to know the usual BP readings before prescribing necessary meds as well as prescribing to lessen risk of a stroke.

In all probability, the physician would like the BP readings done in the comfort of home if it can be done.  It will not be long term; under the circumstances, I would imagine a few days would suffice, hopefully around the same time of the day.  This will help the doctor to know if there is actually  hypertension and if there is, how severe it actually is.  This helps the MD to know what and how much medication will be needed if any is needed at all at this point in time.  To give BP meds when not necessary would cause a negative outcome.

Why treat hypertension?  Well; avoiding a stroke would be a significant reason.  Strokes do not always kill outright; a person can be left alert, but unable to speak; or have paralysis of a limb or an entire side of the body and far, far worse.  It happens; it is not uncommon.  Alive, but loss of significant function.  If that can be avoided and our LO spared that, it is worth trying to get the BP readings accomplished for a few days or so. 

I do realize getting the BP reading done may be a bit of a challenge; but it is only for a few days so maybe it can hopefully be done or at least tried.  Perhaps you can tell your wife that the doctor wants both of you to have your BP done for a few days because Medicare demands it.  Let her "take" yours.  Of course it will not be done right.  Just get the cuff on your arm anywhere, and let her pump it up . . . you can "do the reading." Jot a fake number down on a paper, and then you do hers . . . tell her beforehand that after you are done, you both will have a treat; something she really likes - perhaps ice cream, or a bit of chocolate, you get the idea. Give positive input and feedback.  Just an idea and hope it works.

If you cannot get cooperation to get the BP done, simply notify the doctor.  Later, after placement, it may get done at MC.  You can only do the best you can with what is at hand under the circumstances; that is all anyone can do. That lack of reading should not keep the specialist from prescribing medication to assist with the behaviors as they are.

The intense feelings and frustration you may be feeling at this point are normal; it is a lot to be dealing with and emotions cannot help but to be highly involved.  In that light, be sure to take care of yourself too and if you are prone to hypertension, please have your own readings monitored.

I do wonder if they checked your wife for one of those "silent" UTIs at the appointment.  Hope so as UTIs can ramp up behaviors to a significant degree.  Your wife needs that accurate diagnosis so appropriate meds can be prescribed for dementia type.  I had to learn that if my LO was driving me to absolute distraction and worse, imagine what it is like to live inside their heads believing all those delusions and feeling all of those feelings; the severe agitation, aggression. the anxiety, lashing out and more - it is hellish for them and when medications are finally prescribed to relieve them, it sincerely restores much to their quality of life.

Hang on TBE; you are now a "short termer."  You are heading for the light at the end of the tunnel.  If there is anyone who can lend a hand or be of assistance in any way at all; why not reach out.  As said, take care you too, and know that we are all here and we truly do care.

J.

Lynne D

TBE, you are not being selfish. You have given SO much of yourself, and you deserve to question things.

My HWD’s tests and diagnosis parallel Kenzie’s. The doctor had us take twice daily BPs because my husband’s BP fell precipitously after a standing reading at the doctor’s office (they do a sitting and a standing reading). They wanted to make sure his BP meds were appropriate and did not want his BP so low he could get dizzy and fall.

The doctor said I should think about what is best for my husband when seeking further treatment. As an example, she asked me to consider if he had an infection and hospitalization for intravenous antibiotics was e recommended, is a stressful hospital stay in his best interest? Can I accept the consequences if I kept him at home on oral antibiotics? She basically gave me permission to accept less aggressive forms of treatment that may prolong his life less but keep him comfortable.

I no longer take him to a neurologist or have scans done. I do not see any value after diagnosis.

Those blowups are hard. I have filmed my HWD so I can characterize the behavior for the doctor in case I need meds to stabilize his moods.

Hang 8n there, you’re doing the best you can and the best for her.

jmlarue

The whole diagnostic process is a huge PITA for everyone. Unfortunately, Jo is right about the need for an accurate diagnosis of her current state of health - particularly the blood pressure issues - since controlling that may continue to be a part of her care even after placement. I also agree that it's important to submit to the MRIs, CTs, and fairly extensive blood tests in the hopes of getting a definitive dx on what type of dementia your LO has. On the plus side, none of these tests are invasive or carry big medical risks. Having a solid dx on type of dementia will have an effect on what type of drug treatment is prescribed for behavioral modification.

I need to be sure to check my DH's blood pressure for several days running whenever there is a change in his medication. He, too, gets agitated and angry over such things. I have to choose to do this sort of thing early in the day when he's less likely to react badly. My CYA excuse to him is that I want to make sure they aren't giving him drugs he doesn't need or doesn't want.

Everyone, PWDs and Caregivers alike, generally have some pretty firm ideas about what they are willing to do (and possibly suffer) in order to find a cure for what ails them or to pursue every treatment that might buy them a few more days on this planet. Hopefully, you and your wife have had some conversations about this before she lost her ability to reason. My DH was quite firm in rejecting treatment for cancer (for example), so the idea of screening for cancer is now dismissed out of hand - like routine colonoscopies. I do not allow cardiac stress testing anymore, since he wouldn't agree to another heart surgery even before he lost his ability to reason. In order to honor my DH's expressed wishes about health care, I am pretty much guided by the palliative care/hospice care models. So long as whatever treatment is given has a reasonable expectation of preventing pain/misery and preserving some quality of life, I will consider it. The decisions are never easy and I often face pushback from some doctors. One of the worst examples of this IMHO is the zealous insistence on prescribing statin drugs. DH tried them in the past with terrible side effects, yet every doctor continues to insist he try different brands, add CoQ-10 to try to moderate the side effects, or that he take them in spite of the side effects because they MAY (no guarantees) prevent a catastrophic stoke. The unbearable hubris from some of these docs sets my teeth on edge. Where were they when DH cried all night from unrelenting leg pain or when he couldn't get out of his chair because his muscles were too weak to help him stand? Incommunicado.

Will we always make the right choice for our LOs? Maybe not, but it remains our choice to make - legally, ethically and morally. 

toolbeltexpert

Update I just got the call all the blood work is OK. I thought it would be.

 10 years ago she had to go to fast pace and I asked then for a blood work and it was OK,  but now it's current. She has a cat scan next Monday that's gonna be another trial, working on fibs for that. Maybe they want to scan the lump on her neck?

To everyone I want to say thanks again for all the prayers and I am amazed at how fast my dw forgot the Dr appt. She started conflating stories about it last night. I got an rx antibiotics creme for the bump on the neck and she picks it up and asked how I got that? 

Kenzie thanks for your input,and you gave me the gift of your time to reply and I greatly appreciate it. I  think some you have a wealth of experience in these things cause you've been thru it. I usually reread most post so I can understand what people are trying to say.  I know my punctuation isn't what it should be which makes some of my post hard to follow.

Jo C  thanks for everything,to answer your question the doctor is a gp and my neighbor. I work on his farm or equipment sometimes. But he is familiar with what's going on from my conversations with him. He is a very down to earth kinda guy. If he can't help I know he will give me a good referral, I did chose him cause I thought dw would be more comfortable with him and he told me he could diagnose her. I know if he can't dx her ,I am  gonna ask for a Neuropsychologist. There is a hospital near us that has a geripsych ward. The talk of killing herself is scaring me. I have a gun safe and she has no access. This is my place for everything important. 

Lynne D I had done her BP 10 years ago and it was borderline hypertension, and still is. Thanks for your kind words and empathy. I think I read one of your past post about not going for more test aft dx. I am nodding my head to that.

If I can get a dx and something to help her cause she sure needs it, she won't see another doctor cause as everyone knows it's the anxiety the pwd experiences that seems to cause a decline, maybe it's the finality of hearing  the dx from a person with authority?

Joydean

TBE, I’m sorry all this is hard and scary. But as others stated why it’s so important. Once these tests are completed you really shouldn’t have to keep going back. I have been doing dh’s bp for several years. Sometimes his is way up and other times it’s at a good range. He does take bp meds. He does have alz and PTSD. 

I hope and pray they get the right meds to help your dear wife. Hang in there. We are all here for you, just as you have been for so many of us.  

Stuck in the middle

TBE, the suggestion that you both check BPs is a good one.  I suggest, however, that you check yours for real.  You are under significant stress, after all.

toolbeltexpert

Thanks everyone for all of the things you Clearly communicated, I dug out our BP machine changed the corroded batteries, then I told dw I think I have low bp I am gonna start doing it for awhile. I did mine first yep low, I wonder if thing is working let me try it on you to test it. Hers was almost as low as mine. So this afternoon I try it again mine is low let me check you, almost pegged the red bar,  to her this is me trying to figure out if the BP machine works. But I couldn't believe the first low reading. She has always been borderline high. But I will rinse and repeat.  Mine 112/62/ 68  117/77/64    dw. 144/82/51.

So now can someone tell me which imaging can help confirm a dx.   

Mri? Pet,ect. Any pros or cons. 

Vitruvius

My DW was finally diagnosed with a variant of FTD, Semantic Dementia (SD). A CT and a MRI were insufficient to determine this. It was a PET scan that was the deciding factor for a diagnosis of SD. The actual review comment was "PET scan indicated severe hypometabolism limited to the left temporal lobe (normal parietal)."  And went on to the diagnosis of SD noting that this PET scan result is characteristic of SD. 

Stuck in the middle

TBE, some people have variable hypertension.  Check it today and it's fine, check it tomorrow and it's high.  Those high pressure episodes can cause damage to the brain and several other organs.  If she has that, it needs to be treated.  If my wife's doctor said to check it every day, I would do it.

I checked my mother's BP on her last day at home and it was normal.  An hour later, it was so high that she was nonresponsive and I took her to hospital.  BP is serious stuff.

toolbeltexpert

Jo C I said I would answer your questions. I had to find the right thread and this is my second attempt, hopefully it won't just disappear again.

"Was it a dementia specialist your wife saw in appointment?  Did the physician not prescribe anything at all for the behavioral issues?"

No it is a gp and neighbor as well, very down to earth. No he didn't prescribe anything, but said he would prescribe something for the memory problem, after all the test were in. I don't really think that's gonna be much help. She needs something for depression, anxiety and anger.

I have been doing her BP everyday at least once, she's beginning to pickup on my fib. They run mostly mid 130 and upper 60s.there was one 144,78. But there are several 118/ 60s. Her heart rate almost always 49.

Haven't gotten ct results yet..

I do understand treating her BP, I have read that this can prolong her life which in normal circumstances sounds great, like maybe cancer. Please don't think that I think cancer isn't hell and it has the same outcome. But prolonging this especially if it's gonna prolong the worst part of dementia is what I want to avoid.

Today is dw Birthday, so that means we are gonna go to the Chinese place where she eats free and it's great food. 

Thanks Jo C for all your posts I read everyone. This forum is my family that really does understand. Sorry it took me so long.

Ed1937

Happy Birthday to Mrs. TBE. Treat her like a queen today. I hope you can both enjoy it.

toolbeltexpert

Thanks mayor she's enjoying her ice cream right now

harshedbuzz

TBE-

I hope you have a pleasant celebration together.

Some folks do have improved behavior on the Alzheimer "memory" medications- perhaps because they are functioning better and less anxious. That said, if this doesn't happen, you might want to have her seen by a geriatric psychiatrist for medication management. 

Leaving the BP untreated could lead to a stroke that impairs her further and limits care options going forward. 

Dad had a PET scan to confirm a very specific diagnosis based on how the damaged parts of his brain used glucose.  My mom's ridiculously excellent health insurance picked up the cost, but most insurance policies will not. It's an expensive test- close to $5K. 

MRIs are sometimes used, but the test itself can be challenging even for those without dementia. Typically a person is put on a table which is slid into a smallish tube where they are required to be still for longish periods of time (my knee took just over 30 minutes and a Xanax). In addition to inducing claustrophobia, they're noisy.  

Dad also had a CT scan before the PET scan. If not for the alcohol-related dementia debate-- the resident in the ER gave it as a working diagnosis, the attending/med school professor felt it was "garden variety Alzheimer's" and the Memory Center felt as though FTD and VD could be in the mix based on what he saw after dad had been treated with Thiamine and regained some degree of cognition.