My husband was diagnosed August 2013, he has had symptoms for quite sometime, but I could get no one to listen. Finally my oldest daughter said"it's time to address the elephant in the room. This is when, doctor visits began. My husband very seldom went to doctors, sometimes not even for yearlys. I'll cut to the chase, we have had all test, cats can, MRI and pet scan, referred out to neurologists, appoints six months out. We can see MD, in neurologists, but she is all most six months out. We are on a waiting list for a cancelation appointment, which is a long list also! Husband is a war veteran, so trying to get into VA, appoints are 5 months out. Husband is not being treated for alzheimers, he is on mood stabilizers. He has other medical problems and I think his meds for all his illness are not corpora ting with each other. I do not know what stage my husband is in, but he worked with tools all his life and he can't identify a screwdriver from a hammer. Last night oven had not cooled down, he kept yelling why is the refrigerator on, so I finally said, it runs off and on to keep things cool. He kept saying the refrigerator is, so I went in there, it was the oven. I said, where is the refrigerator, he said right here and it's on. I said no that is the oven and it has not cooled down yet. I've also noted that he has hot and cold mixed up. I just want husband to seen, treated and questions answered and guidance for me. Does it take this long for everyone. I love husband, but I can't give him the care he needs, if I don' t know what it is he needs. Oldest daughter is working with me to try to get in some where. I know husband is not the only one with alzheimers and I don't mean to say, he needs to be in front of the line. I think I 'm frustrated, because I don't really know what to do.
Others here may have better advice, but in our situation (@over 8 years ago) we did two things. First, after the neuropysch testing, my DH saw a neurologist who did not specialize in AD, because he was easy to get in to see (private practice, not affiliated with big hospital or med school). He immediately called one of the AD specialists in town, probably because my DH was 53 at the time, and pulled some strings to get him in. Typically, that AD group has a one year wait list. But once we saw them, they told me that they have potential patients fill out lengthy paperwork, and if they see anything on that paperwork really unusual or that causes them to think a patient needs to be seen earlier, they will call them. So, for example, an 85 year old who is forgetting names of grandchildren might wait a year, but a 65 year old minister who has begun cussing out his/her spouse, children, grandchildren might get in earlier. Probably bad examples, but you get the general idea.
So, pull strings if you have them, ask the doctor who prescribed the mood stabilizers to pull strings for you, be proactive (ie, call regularly to see if there have been cancellations), use specific examples like the tools.
I have no experience with VA but many others here have, so hopefully they be chime in.
Not sure how to help you with the Neurologist. But you can find so much info here. You should be able to find what you may need for day to day living and help for your DH (dear husband). Sounds like your DH does not need to be left alone now. He needs supervision, to keep him safe.
I found that my PCP was much better at helping me with DH than his neurologist. And in the end, just went to the PCP. You may want to look up, Fisher Center for Alzheimer and find the link for stages.
I wish you the best, so sorry this is happening to you and your family.
Waiting lists can be long in areas where there are not many neurologists. And some don't specialize in AD or dementias. Are you anywhere near a university hospital? Your husband's symptoms are too strong to be ignored. He should not drive all. Getting lost is a real danger not to mention accidents for which you will be responsible. Also if you have not seen an ELDERCARE ATTORNEY, you need to so now. Don't delay. You say he was a war veteran, did he receive any disability?A good eldercare attorney should be able to advise you on many matters from medicaid to VA assistance and may know of a physician or a clinic where you could get some help with a DX. Also, and I don't mean to scare you, look NOW into what is available at assisted living facilities as there may well be a time when you cannot take care of him at home yourself. You are already showing signs of stress and this journey is long. I think you mentioned other health issues that he has. I would consult with the doctors in detail about those conditions and how they may impact on his memory. There are blood tests etc that can be done to evaluate memory loss problems and they also need to be ruled out. My husband had health issues related to exposure to AO from two tours in Viet Nam. He was 100% VA disabled priority one Purple Heart Awardee. However, because his health issues presented symptoms of AD in addition to his DX of AD, I thought it was all related to the AD, the changes I would see not realizing that some were related to his cardiac condition...My husband did not die of AD, it was sudden Cardiac Arrest caused by acute pulmonary edema and severe aortic stenosis which I did not realize he had. So my moral to the story is two fold, get as much medical information out of the doctors as possible, ask questions and do not be put off..I thought I was solidly in the know..and second, and this is hard to think about, check out the funeral homes and what is offered and prices..don't wait like I did. I had no idea how severe the cardiac condition was and had my DH survived the doctors would have put him on hospice..the day after he died I had to go funeral home shopping...and that was terrible. If I had to do it again, I would have taken care of that business before hand. Good luck and do keep coming to this site. There are "veterans" some on the journey some of us with the * which means we lost our spouse, who can help you sort through things. Also it is a great place to vent and no one ever sits in judgement of anyone else on these boards. Stay with us...we are the ones who really understand.
Charlie Rose - unfortunately it depends on where you are how quickly the VA acts. We are in the Portland/Vancouver VA system. I was able to get my husband in quickly but then that was in 2008. Our experience with the VA is the primary will take care of every thing except what is related to the dementia.
One thing to get in the habit of doing is to get copies of every doctor visit. You can download the form online or as we do, we go to the office right after visits and fill out the request form. I have read those and found information the doctor never gave me. In fact, it was the copy of the first neuropsych testing that told me he had dementia - the doctor never contacted me. We were working the summer in Nevada and it was at a visit to the VA there the doctor gave him a copy. I also had a copy of all those visits that I sent in when he applied for SSDI.
The primary can order the neuropsych testing - you do not need a neurologist to order it. I know because it was his primary at the VA who ordered the test so he would know where to go from there. One thing I like about the VA, or at least my experience, is they have no objections to the wife always being there in the exam room. The doctors are usually smart enough to know a person with dementia will not tell the exact truth. Have your husband sign the HIPPA forms so the doctor can not refuse to talk with you. They also have a copy of the DPOA.
On the medications he is on - do your research. You have the internet so research all the drugs. Ask a pharmacist if they can interact with each other, since doctors all too often do not know. Is he on a statin drug for cholesterol? If he is be aware memory loss is a side effect of them. After 3 days my husband had no memory of what he had done that day. That is an extreme reaction to it, but memory loss is not that uncommon especially if they are on a high dose.
In my experience the neurologists who were easy to see weren't very helpful. The wait times for an initial appointment with a neurologist who specializes in dementia is very frustrating. We were very lucky in when I called for an appointment for a neurologist who is a specialist in my wife's dementia, FTD, after making an appointment for 4 months in the future and opening from a cancelled appointment was available the next week.
Why is it so hard to see these specialists. Often they also teach, so they may see patients only 1 or 2 days a week. They are in demand. They travel related to their work. The irony that many most capable of dealing with our spouses are capable because they are involved in research.
Still, it is very frustrating as a patient.
Be aware of your insurance. I'm lucky in that we do not need referrals from our GP to see specialists. Though some doctors will see you only if you have a referral.
The advice of others is very good. When we were still in the "what is the problem" stage a friend talked to someone high up at a research hospital. This person couldn't help me directly but he got me in contact with the proper doctor and I was able to say who told me to see him.
My husband's issues presented initially to his PCP. It was an HMO system and he needed a referral for specialty care. The neurology department had two or three certified nurse practitioners so his initial appointment was with one of them. She fast tracked him to one of the physicians.
As texasmom indicated, I think there were two very important factors, one was his age; he was in his 40's. The other was that the issues were clearly neurological but behavioral instead of memory focused. The excellent but very busy neurologist moved on to bigger and better. The second neurologist was a treating neurologist but did not hesitate to refer my husband to a very large local university department that blended research and treatment.
Charlie Rose, you didn't mention your husband's age or where you are located. Please only share what you are comfortable with but more information might help those here help you.
And, yes, whatever your health care system, as Charlotte said, be sure to document. Although my husband was never in the VA system he did go back and forth from the private hospital which later evolved into a PPO and the university center. Before the dementia (he had ftd) he would tease me about being OCD when it came to record keeping and filing but did that ever help. Before electronic communication was so pervasive, there I was with my folders and files and it helped with the above systems, as well as the neuropsychologists who were in another system, and the SSDI.
And, finally, this is just my opinion: it seems like mood stabilizers are not a bad place to start. Others may have more information on that.
As for the mood stablizer - a common first act for dementia is to prescribe Aricept, Exelon patch, galantamine or namenda plus an antidepressant. The neurologist we saw in Vegas had little experience with AD but did prescribe the galantamine and prozac for depression. When we got back to Portland and he went to the neurologist there who works at OHSU and specializes in Alzheimer's asked if he acted depressed and I said 'no', so she took him off it until it is needed.
And keep in mind it can take trying different antidepressants to find one that works for them.
I found the Neurologist to be little more than a master of the obvious and billers of outrageous sums to Medicare. After confirming the initial DX. DW participating in a new drug trial, with the Neuro, regrettably for all, the drug didn't work, it was a fruitless experience. Our subsequent 2 visits consisted of hours on testing always arriving at the same conclusion apparent to everyone who was in contact with my late DW, she was slowly declining. There was nothing of medical benefit the Neuro could provide our PCP couldn't.. All of DW's subsequent care was then handled by our PCP in a most compassionate fashion. He cared as much for me, DW's sole caregiver as he did for DW.
One suggestion call the local Alzheimer's Assoc. or the State Society of Neurologic Physician's and see if they can provide you with a list of qualified neurologists and then get on the phone and start calling them to see if any can provide you with an apt. soon than 6mos. Don't just rely on your MD referring you to a single Neuro.
As to dealing with the VA - a call to your state and federal Reps and Senator's invariably produces results. Every now and then they actually serve their constituents. Mimi's advice to see an Eldercare attorney I couldn't agree with more and should be acted on ASAP.
Our experience with neurologists was similar to paulc's....we couldn't get in to the "best" neurologist in our area for 4 months, so DH's PCP recommended another one who saw DH within a week. He was terrible, bordering on a charleton. His recommendation for handling DH's aggression and physical violence towards me was for me to buy pepper spray and spray my husband when he became physically threatening.
Other than perhaps an initial consultation, I don't see any value in seeing a neurologist. They typically want to run several tests and really can't do anything to change the disease progression. The geriatrician we have for DH is more than capable of handling the meds and his needs.
Charlie Rose--did your husband receive a definitive dx of AD? I am presuming yes because of all the testing he had. If so, there is little a neuro can do except confirm the dx. The so-called AD medications do very little in terms of helping symptoms, and they only work for a relatively short time (and not for everyone). To me, the biggest help a neuro can give is to (1) prescribe appropriate psych drugs and (2) support the caregiver. If your husband is on "mood stabilizers" and he is still yelling, then he needs a medication adjustment. However, that can be done by a PCP or geriatrician. As far as caregiver support--run--do not walk--to the Alzheimer's Association. If you are in the U. S., go to their website and contact your local chapter and get support group information.
Thank you all for the feedback. I plan to call PCP tomorrow for appointment, so DH can hopefully get meds worked on, the ALZ for our area and contact legal. Just knowing I have someone to listen and give advice is going to be very helpful.
The Neuros in my area offered 4 mo. waits on appointments. Luckily, a friend in mental health told me we needed a neuropsych test, and since we had already seen our family doctor for memory twice, he was able to get us an appointment with the neuro psycologist, who did think the test results indicated ALZ. When we saw the Neurologist, they did MRI, and started him on Aricept. We found a memory impairment clinic at a teaching hospital where we went to find out what type of dementia it was, and rule out curable types. Later we kept a couple of appts. with the Neuro, but they did nothing, and finally just went to our family doctor who was comfortable adjusting medications.