So Many Questions.....

k8walker

Newbie here. Not sure if this is the right place for me or not. My husband is retired military (four tours in Afghanistan). He has PTSD and for the last 14 months we have been dealing with memory loss, confusion, anger and high anxiety. He has seen a "brain neurologist" when this first started, was sent to psychiatry and had memory tests done. No diagnosis was ever made. This past weekend we were on a trip with friends and they "couldn't believe the difference" in his demeanor. I called his "brain neurologist" on Monday and can't get in to see him until mid-October. I am with him daily and know that he is struggling, now he is also telling me he "knows something is going on". His depression is high and he is having a hard time just doing normal daily routine due to such.

I need help trying to figure out what to do next? Do I just wait for the appt in mid-October? We have already seen our PCP/NP and he did have a recent MRI with "no changes" from the previous one.

Concerned........

M1

Welcome to the forum. Sometimes the diagnoses can be quite elusive. Probably the best thing you can do right now is keep extensive notes and records regarding your daily observations of behaviors, memory lapses, speech lapses, etc. to give to the neurologist--don't know that anyone could get him in sooner. Imaging is not always revealing. You should ask about spinal tap and PET scans, and neurocognitive testing (the long version--maybe that's what you mean when you said he had "memory tests".). They may have to be repeated. Sorry you're facing this--but this is a good place for support.

Another thing you could pursue-though it's early--is to at least think about having your legal ducks in a row. Do you have power of attorney for him? Does he have it for you? It may warrant waiting on a diagnosis, but an early task in ALL of these situations is to be sure your legal and financial affairs are in order. You can at least think about it even if you don't act right now.

Ed1937

Hello K. Welcome to the forum. Don't worry about being in the wrong place. You're just fine here.

Sorry your DH is having issues, but you will get a lot of support here, and answers to questions you might have. We have some smart people here, and they can help you figure things out.

M1 mentioned having your legal concerns covered. I just want to caution you not to wait too long to see a CELA (certified elder law attorney) if you get a diagnosis of dementia (or even if it is highly suspected, but no diagnosis). Some people have waited too long, then paid a heavy price for doing that. Hopefully the problem will be something other than dementia.

JeriLynn66

I hesitate to ask but out of concern for safety, I’m hoping you will forgive me..

with PTSD, anger, depression and high anxiety in play have you secured your own safety? I’m so sorry you both are going through this..

Quilting brings calm

Ask the PCP to do blood work in the meantime to check his B12, thiamine and thyroid levels. They will want to rule out abnormal levels of those as they search for a diagnosis. There is also something called NPH. Someone will come along and explain how that’s diagnosed / I don’t remember. If it’s one of those things, the symptoms of can often be reversed if caught early

storycrafter

You know best how much your husband is suffering. Is he in acute distress? How much more he can stand? He is suffering a lot, it sounds like to me. I wouldn't wait. An experienced primary care doctor can get the ball rolling and help avert a major crisis for your husband. They can prescribe medication to help manage symptoms until he can get in to see the specialists.

Good advice above. Write down and keep a dated, concise list of your biggest concerns, the facts, specific examples of what you observe that has changed. How do you know his anxiety and depression has increased? What are you seeing that has changed and is causing your alarm?

You said, "His depression is high and he is having a hard time just doing normal daily routine due to such." What does this mean? To get medical staff attention be more specific and don't sugar coat it; if anything emphasize the severity. (I can only guess and don't really know what behaviors he's dealing with or that you're seeing. So I just throw out the following examples: Do you fear for his personal safety? Is he sitting staring into space, stuttering to find words, or is he agitated and yelling? Has his sleep patterns changed? Maybe he's making poor/impulsive/risky decisions? What specific tasks/actions can he no longer do?

I can only share my experience; you know best what is needed in your situation. When my dh had a depressive crisis years ago, I made an immediate acute care appointment with the pcp, showed the doctor my written, dated list of changed behavior, for his eyes only so as not to upset dh even more by repeating it in his hearing.

I took multiple copies with me, in case the doctor didn't get to read my list (handed to the receptionist and requested the doctor read it ahead of seeing us) before coming into the room, to see dh. I just simply, quietly handed a second copy to the doctor when he came in. He read it and responded appropriately, gave my husband immediate help with prescription medication to assist in coping. The pcp referred us to a psychiatrist for medication management right away (it took two weeks to get the first available appointment; the psychaitrist referred dh to a neuropsychologist for the testing; then it was six months for the neurologist).

You probably know this, but I mention it because of something you wrote, and I hope you have clarity. A psychiatrist is different from a neuropsychologist and neurologist. One possible scenario is ... the pcp can help with initial meds right now, today. The psychiatrist will manage medication longer term until further diagnosis.

I've written too much and hope you can feel the support intended behind my wordiness. I hope you find all the support needed. Be a squeaky wheel until you know you are heard and taken seriously. I realize things may also work differently for VA benefits, but don't put up with misery and suffering until October!

It's a very difficult time, but you're not alone. Best of luck to you and your spouse.

Iris L.

I agree with all of the above. Don't skimp on blood tests to rule out medical diseases, including low testosterone. Also check all prescription and over the counter meds for side effects. Has he gotten treatment for PTSD? It's important! He should have no stress in his life, but have a regular daily routine with simple fulfilling activities. Getting out in nature is good. However if he is very stressed, an emergency room visit with a plan of inpatient hospitalization for evaluation may be warranted. How old is he?

Iris

toolbeltexpert

K8walker welcome to the forum no one really wants to join. I just want to say the above is good advice, it's alot I know but you can pick out the things that apply to you. You will be his advocate and you will need a support system in place for you as well. In the meantime you know the things he can still do and the activities you both enjoy focus on the things he can still do now. You will learn alot here but I would recommend watching teepa snow videos on YouTube search for any specific behaviour and her name and you may find good work arounds.

Keep posting

Stewart

k8walker

Thank you all for great information. I will definitely be getting a power of attorney - great advice - hadn't even thought about that. Also will start journaling for the doctor's appt.

In relation to my safety, I have already removed items within the residence that we have. Friends have secured those. We saw the PCP a couple of weeks ago and he had blood work done a couple of months ago - you had mentioned some specific tests so I will see if those have been done. Since we can't get into specialist until mid-October I will ask if those blood tests, along with the ones you have mentioned, get done prior. I want to make sure that when we see the specialist I have everything that he needs.

DH is 63 yo - as stated retired military (four tours) as well as retired Homeland Security (Border Patrol Agent). He is being currently treated for PTSD (takes two depression medications), diabetes (oral medication) and chronic foot/back pain (anti-inflammatories only). Other than that he takes supplements and vitamins. These medications he has taken for numerous years.

Thank you all so much.

Rick4407

If you are not using the VA, be aware for the future the VA in some states operates small group homes for memory care. You need to sign up ahead of time to get placed. If he's not on VA disability see a VSO to get an application in. It can make a significant financial difference. Rick