I am asking for your advice as soon as possible. I have been posting on this site for about a month and reading and learning. My husband was diagnosed with demetia/early stage alz in Sept 2010. However, I took him to the VA for diagnosis so I can get the in home help provided for Veterans. This appointment was Thurs, Mar 15th. Bill's coordinattion is failing, and I had to bring him in with a wheel chair, his head hanging down and he was having one of those days where he was just incoherent. The Nurse Practioner says he does NOT have ALZ but is abusing his meds. I take him this very next Mondy for further evaluation to a bigger VA hospital--it is imperative that I get the corrrect diagnosis in order to qualify for home health care provided by the VA. I am hoping you have seen my previous posts so that you know that Bill truly does have ALZ. He has pretty much followed the prediction of his diagnosis from last September. Any advice that can be offered for me to say to these people on Monday wil be greatly appreciated. Example: He walked away and was found by the police on the interestate 14 miles away. He used to be a long distance runner and he was having a ball. Please any advise today or tomorrow will bo soooo appreciated. I am very sick I have Lupus, Adrenal Insufficiency, Cushings Syndrome and this help would mean sooo much for me to take care of DH--Blessings, Marie
Sorry to hear of your problems. You have a diagnosis in hand made by someone for early onset of dementia. It should be part of his medical record w/the VA. If not, be sure it is added. Nurse Practionors are not qualified to even attempt a diagnosis of this complexity. I would request he be seen and evaluated/tested by a Neurologist, Neuropsychiatrist or a Geriatric Psychiatrist. I would document with dates(approximate) as many past examples of his illness as possible and give that to the doctor and make it part of his medical record as well. As for med abuse being diagnosed by the NP, I have no idea what she based that on w/o a full lab screen. NP's, while qualified to do many things, mostly med orders, do not have an MD after their name. I wish you well dealing w/the complex world of healthcare.
Thank you so much for listening and helping. I do have the neuro psych evalauation and diagnosis--that I got last year and the nurse practioner actually saw it and threw it aside. BUT I have more copies and will be sure to take it with me Monday. She based the drug abuse on his physical state at the time she saw him, however said later he could have been having a stroke(which he has had at least two that we know of). I cannot say how I appreciate your help. I just feel like getting into my little car and driving as far away as I can and just staying wherever it takes me. His family is in complete denial and it has been a very very hard year. Just this morning while I was sleeping DH got up, found the keys to the car and drove 30 miles to the VA satelite medical office for an appointment. Well, there was no appointment and since it's saturday they were closed and thank God he came home. I was up sick last night and fell into a deep sleep. I felt so bad I didn't wake up to stop him. Yet they keep saying it's the drugs. No it is not. But his family thinks so to so I cannot look to them for any backup. They can't remember him ever doing anything odd. Thank you and God Bless, Marie
I am so sorry, I can't really offer much help. Just know that you are in my prayers. Don't give up. You need to fight to get what your DH needs. We are stronger than we think. You can do this.
One thing we learn on this journey of caregiving is that we have to be very strong advocates for our spouses. It is doubly difficult for you and other members with their own multiple health problems to have the advocate burden to carry, but it's the way it has to be.
The sad fact is that the VA doesn't want to pay for services unless they are forced into it. Really forced. When you are "dismissed" or your papers are pushed aside, you have to be insistent that you see a neurosurgeon who specializes in memory disorders, not the nurse practitioner, and make sure (as you have) that you have all documentation in order. Make multiple copies. You have to be a tiger when it comes to getting what your husband deserves.
You can also contact the Veteran Service Officer in your county who will work with you to help get you what your husband is entitled to.
When you say that the VA keeps saying "it's the drugs"...did they place him on the drugs and if so what drugs are they? Are you giving your dh's medication to him or does he just do it himself? It seems for just having a dx since last year he is much worse then what would be considered the normal progression...And, if it is the drugs why do they keep giving the drugs to him.
My dh also goes to the VA and sees a NP who evauluates his medications. Frankly, I am not impressed at all with the VA with regards to understanding and evaulating Alz. My dh was dx by a private neuro in late 2007 and had shown signs for at least a year before that. The VA has never sent him to a neuro. It took several years before they would even approve Namenda yet his neuro was writting prescriptions for the drug and we were paying for it ourseleves. Seems strange the NP would say it is drugs without referring your dh to a doctor and/or attempting to find out which drug, etc. My dh also sees a VA doctor twice a year and that is a joke....he sits at this little computer and just talks to me about his meds. etc.....but, we continue to go because of the medications he receives from the VA at no cost to us.
What if anything did the NP tell you about him receiving in-home care? Is your dh on any type of disability from the VA or is he retired from the military? Who told you he could get in-home care? Did they also tell you what you would need to provide for this in-home care? The reason I am asking these questions is that there are several of us here that have dh's that might be interested and need in-home care? I was told that a social worker would come to the house to evaluate my dh but since he was still mobile he probably wouldn't qualify for in-home care. Working work the VA is kind of strange to me...one person tells you one thing and another tells you something different.
You might also consider asking that your husband only see a neurologists (and not a NP) from this point forward. You have enough on your plate without having to deal with crap like that. How frightening that your DH took the car, very glad he made it home safely. Whew! Best of luck Monday
My husband was diagnosed with FTD by a private neurologist also but he is now seen at the VA for his meds as there is really nothing else to do for him. I would also insist on an appointment with a neurologist. No one at the VA questioned my husband's diagnosis. He was seen by a neurologist who did a very short exam as my husband could not do it at all. He mostly is seen by a geriatric psychiatrist for his meds and to help with any behavior issues. She is a wonderful doctor who has always made herself available to us.
From experience, I have found that the Nurse Practitioners are really just trying to get you out the door. When my husband has been seen by a Physician's Assistant, the exam seems to be much more thorough. Maybe you could request a PA rather than a NP and see if that helps.
I believe with the VA you need to be very aggressive in getting what you want. It also wouldn't hurt to get in touch with a VA social worker, if you haven't already. I know that each state's VA programs are different but I have had pretty good luck with ours here in Illlinois.
I so appreciate all of this input. I certainly don't feel alone now. It never ever occured to me that the Va would be about just getting you out the door!! But for all the years we have been involved with them, yes, that is very true. I am just so burned out that I forgot how they are. In order to help those that may have VA benefits/help due to them. Here is what the Nurse Practioner told me. Since my DH is service connected, and VietNam Era(which alot of services for VietNam Era Vets have been added, I guess) that he would qualify for in home help 3 days a week. Now it may be a couple hours or something like that. I will keep you informed. I am new at this and if we want to follow how this comes out--should we start a specific thread for just this topic(I saw joan's warning regarding topics) and I don't want to break any rules as this is a great place for help. So please advise or start a new thread re the VA if we should do that. I am very tired and confused at this point and not making good decisions. They also said we could have a hospital bed, a bed tray, a walker with a seat, bathroom safety things--just about anything we need. Regarding the drugs--I alwaus carry a spreadsheet that lists DH's medciation, dosage and why they were prescribed and by what Dr. Most of the meds we buy from the Va because they cost less. Since they really only want you to come in once a year and review and set up the meds again. Bill has been to my doctor and also an ortho dr. for a knee replacement. Each Dr. prescribed different meds. No we are NOT getting drugs here and there and overdosing. I specifically d/c one drug if another is prescribed in it's place and it is all tracked on my spreadsheets. God Bless you all==you are such a help,Please continue if anyone has more advice(this all is priceless) and share any difficulties with diagnosis.
I would have a pharmacist go over all his medications and see if any of them may be in conflict and could be responsible. I have found doctors do not really know the problems multiply medications can cause. My mil was on about 12 Rx when she went to a different doctor who took her off all and then she ended up with just 3 and felt much better. So have the meds checked to rule out any conflict.
If this continues, you may want to find an VA advocate. My husband's primary at the VA when asked said the neurologist will handle AD related problems, and he will handle all the rest. He was seeing the neuro every six months, but in October she said we could go a year if we wanted and call if there is any problems that come up. For my husband he has to see the primary once every two years to stay eligible, but they always call for yearly.