How can I get Doctors at VA listen to me

Windsong05

My husband had behavior changes since years

this is what I’m dealing with

I have to go to bed when he goes

Obsessive behavior with blood sugar 

Searching internet

Slurs his feet when walking

Severe insomnia

Rampage

Living out dreams

Dream that he could not remember anything

everything is an argument he does not listen there is no compromising

Had difficulties understanding 

Repeats his self, over and over

lives in the past

Not trusting anyone

Difficulties with finances are getting worse

Not sleeping since three weeks plus

Loss  of empathy

Sundown syndrome

shadowing me

Extrem argumentive

Periods of total confusion

i urged him that we needed help we needed a doctor

he find me to tell doctor any of his symptoms

even at doctor he smartly tells a story to doctor and says he is doing just fine

Since 2 weeks insomnia got worse

2 days ago he broke crying wanted to end this suffering. I took him to the VA emergency the social worker talked to him and he told her that that was just talk that he was ok

The social worker spoke with me and I told her everything that is going on

she told me that the doctors should talk with me without him being present. And to take him to mental health to get him on meds.

The next morning we walked in to VA mental health department and when he was questioned on behavior he told them everything was ok and he had no symptoms to any of the questions. Again I sat there shaking in side of fear the nurse never should to me alone and I could not say anything intent of her because of the fear he instilled in me.

However she gave him Trazodone thanks God he fell a sleep. I could write a book

2 years ago he had a scan they noticed a change in his frontal loop

told him it could be age related.

What can I do to have then listen to me alone.

I’m71 treats old a happy person

now I’m getting my worn out and sad filled with fear.

Does anyone have good advise

How I can get the VA doctor to listen to me confidentially?

Sincerely,

Windsong

Denise1847

Dear Windsong,

I am so sorry that you are dealing with this. My one suggestion is to video take and/or record any conversations and play it for the doctor.

RickM

Hello Windsong,

I'm sorry to hear of your struggles. There will be plenty of good advice here. The Alzheimer's Help Line also has experienced social workers that can give you good advice. They saved me when I was in a difficult situation with my father.

Alzheimer's Association Help Line 1 (800) 272-3900

Take care,

Rick

Ed1937

Windsong, welcome to the forum. I wish you didn't need it, but you will get a lot of help and understanding here.

You can write a detailed note for the doctor to read before he sees your husband. These notes really work. I have used them several times, as have others here.

Much of what you said is simply part of the disease, and trying to control these things isn't winnable. You can't have conversations with him where you can convince him of something he doesn't believe.

Many people with dementia have a condition called anosognosia, which is the inability to understand they have a problem. It is not denial. They simply can't understand it. It's not their fault.

Arguing is not something you want to take part of. It only makes things worse for both of you, and you can't win. Compromise is a train that left the station, and won't return.

Please do a lot of reading to learn all you can about the disease. Here is a link to a good article. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

I'm sure you will get plenty more replies.

Iris L.

Windsong, you sound like you are not in good health yourself. Caregiving for a PWD (person with dementia) is hard. Think about your own health too! Don't let dementia take you down too.

Iris

ThisLife

Windsong05,

I'm so sorry you are dealing with such challenging behaviors and not being listened to. I agree with recording and writing out information. In taking my H to the VA the clinic that everyone is referred to is like seeing a primary care doctor for adults of any age. When I went in with extensive information for the last annual visit, the doctor did not know about the scales I presented rating H functioning and behavior. She asked if I wanted a referral to the geriatric clinic, geriatric psychiatrist, and neurological psychologist. Well, yes! They are the ones that understand care for older adults and PWD. Appointments are months out but worth the wait. Ask the PCP clinic to refer you. I know there is a person you can contact in the VA system if you don't get the referrals, but I don't know who. Maybe someone else here does.

Davegrant

Windsong05,

MY dw has dementia and she has many if not all of the behaviors that you list. I would only suggest that you discuss your concerns with your physician and that you find some ways to give yourself some respite from the caregiving and control that you are experiencing. Your life is also important.

Chloe mom

Windsong05

We (husband and I) are having some of the same problems with the VA that you are along with different ones. You need to get with your husband’s primary care provider and provide them with a list of what is going on. You might be able to use secure messaging through your husband’s myhealthevet (www.my health.va.gov) if he has an account. His PCP is the “gate-keeper” to all the other specialty clinics within the VA such as neurology, neuropsychological testing and mental health as well as the geriatric clinic. Depending on your husband’s level of service connected disability some of the clinics might not be available, but the PCP should be able to walk you through that or a mental health social worker. If you have too many problems; go to patient advocate. I would also reach out to your state’s caregiver support program for help with some of this.

My husband’s neurology pushed us back off on the mental health department. I have called the state and national caregiver programs trying to figure out why no one will admit there is a problem. One reason is the VA “claims” that although they provide money for research there aren’t enough veterans living in long-term care for memory care. Two is that for them to put a diagnosis of dementia/Alzheimer’s in a file; that is a line they can’t take back. Three it almost seems like the regular neurologists don’t have enough patients to honestly know what symptomology of dementia really is or how to help. I have dis-belief that probably the largest provider to elder patients doesn’t know or recognize dementia or Alzheimer’s, but then again most of the older patients in the VA system are men and they historically won’t say they are having issues.

ronald71111

Windsong05, I'm sorry your having to deal with this. Have you used all the resources the VA offers? As a caregiver they have a caregiver support group at the VA. Also, you can always contact a patient advocate who would help you with the resources you need.

I am a veteran that is a caregiver for my spouse. I personally use the VA and have had and still do been frustrated with not receiving the care I need. I do continue to make phone calls and talk to anybody and everybody that will listen.

Hopefully you will soon receive the help you need.

Ron

mommafour

Windsong05, I suggest the same as Chloe mom. My DH is being treated for Alzheimer's at the VA. I set him up with the online "premium account" at myhealthevet. I am able to send secure messaging to each of his providers (I let them know I am his wife, and not DH sending the msg), both primary care and in the geriatric clinic where he is being treated for Alzheimer's. It sometimes takes a few days to receive a response. I usually send messages a few days before appointments in the geriatric clinic to let them know what is going on with DH.

Windsong05

Thank you so much all, it was so helpful to hear the advise and that I’m not alone. I slipped a note at the VA to the nurse and also called the nurse helpline confidently. Finally there is help. My dear HB receives 2 medications at night Trazadone 100mg and Prazodine 1mg. After one week he started to sleep better and now almost 3 weeks he is somewhat calmer. However I have to watch my mood because sometimes it gets too much and it feels like torture the repetitively asking things. He picks up immediately when get das and irritated and that’s when he gets agitated.

A few days ago in a store he treated the cash register lady, so poorly just because she asked him several questions. I was so ashamed it was so uncalled for the way he was scolding her. After we left the store, I told him that he was awful and ol boy he started screaming at me that I didn’t care about him because I defended the lady.What happened to his empathy it is totally gone.

The shadowing still is consistent feels like I’m in prison and some one looking over my shoulder.

The end of this week he will get a PET scan. The whole family hopes that we will finally have a diagnosis. It is really hard not to know what your dealing with. Somedays i wonder if this is all a show or what. One thing is for sure he feels that something is wrong.