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The doc not responding to my email with symptom list.
My husband is, unfortunately, one of those dementia sufferers that use deceit, denial, anger and verbally aggressive behavior to hide their fear of what is happening to them. I am convinced he has vascular dementia. He retains a good memory level - although his cognitive function is horrible and his mobility has declined to the point of making him house-bound. In a few short months, he has declined drastically from several mini-strokes brought on from a long history of heart-attacks, strokes and hypertension related issues. He also suffers from OCD, anxiety and depression.

Since his first stroke and heart-attack 10 years ago, I have been trying to get his doctors to listen to me about possible dementia symptoms, but he lies to them at each visit; turns on his polished charm and convinces them that I am making up everything I say. During his last hospital visit, a neurologist officially diagnosed him with dementia. Then, as his mobility declined and medicare told me I needed him to go get a mobility function eval from his GP. He refused to go to any doctor. This forced me to pay the full price of all safety and mobility equipment, which has been tough, since I had to close my 18yr old business to care for him full-time leaving us with just his retirement income. And this is juuust enough that we don't qualify for any aide programs.

Now...he has fallen so many times (always trying to prove he doesn't need to use the 'cripple' equipment as he puts it), he finally relented and told me I could make a doc apt. However, he refuses to go - if I tell the doctor the truth about his symptoms - other than those obvious to the doctor. So, I signed up for the doctor's patient portal; wrote a letter containing all the cognitive/mobility symptoms and then asked the doctor if I could count on him to work with me 'behind the scenes' - in order, to get my husband the medical care he needs. I explained to the doctor that this was necessary, because my husband said he would never go again, if I told any doctor "just how bad it is now".

2 weeks later...no response. I called his office asked his staff to simply have the doctor give me a yes or no answer to whether he was willing to not tell my husband that I shared the symptom list. They promised a call but I never got one and that was 2 months ago.

Now his paranoia, suspicions and fear are off the charts and he accuses me of wanting him to be declared incompetent; committed to a home and even die, during his anxiety attacks. After the episode, he is the sweetest thing and thinks I take great care of him. I know not to argue and smile a lot, but now he has been calling his two estranged adult children during these fear attacks, while i'm in the shower, etc., complaining about me. They tried to gain custody of my husband 10 years ago, while he was undergoing quintuple open-heart surgery following a stroke and corodidendorectomy. They said, "she only convinced the surgeon to do the surgery, so she could get attention!" (they are close to their mother and resent their father's remarriage) That would have been funny, except...they tried to beat down the Cardiac ICU door; called social services on me; made me leave my husband's critical care bedside to meet with the hospital administration and caused a ruckus that ended up with them banded from the hospital and further contact with my husband during his stay. My husband harbored deep resentment and anger over it - up until his recent cognitive decline. My relationship with them ended by their choice immediately after and my husbands relationship with them has been a once-a-month obligatory phone call, at best.

We both made POA, DPOA and Wills after that. Now, I am worried about how I can get my husband the best care and protect him from himself and others. All the while, fighting the same war with getting his doctors to even work with me. I'm so frustrated. LO wont let me attain any outside assistance; tell anyone he has dementia and even get the safety equipment he needs. What I HAVE gotten, I just bought using our retirement savings without telling him and I get yelled at for it almost every day. (But he IS using it and that's all that matters to me.)

Does anyone have any advice? I want to make the doc apt - even if he changes his mind and makes me cancel (which he does), but this is the ONLY doc he will go to, so switching to a new one probably isn't an option. What an I do?

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Whew...what a day. I'm exhausted but i wanted to give all you angels an update and a huge thank you for all your tips/help before i went to sleep. I gave him a xanax and it kept him calm until we got there. Poor thing was scared to death once we arrived and started to lose his temper but then they called him back. I wrote the note to doc with instructions to read before he entered. It was a page long with an update on all issues. Doc was shocked at his decline and mouthed to me, "I read your note. Don't worry. " Then something strange happened...the doc asked him what has been going on. Hubby said, "I don't want to talk about it. Ask her. She loves to talk about it." I asked, "are you sure? " (knowing the doc already knew everything). Hubby said, "yes. I just want to get this over with." He was feeling completely defeated. The doc scooted up close to my husband and spent 45 minutes talking to him like an old school mate helping him accept the inevitable loss of mobility. A couple times I thought my husband was going to cry. It was heart wrenching. Hubby, "But she even hovers over me in the shower! Watches me all the time. I can't do anything alone. " Doc, "She HAS too! I know. It sucks. But she has to make sure you're safe. You fall now." Doc adjusted meds, took some blood/urine, ordered wheelchair use 24/7, ordered home phys eval and respite care. I felt a change in the doc and his staff. It wasn't a hurried meeting to discuss bloodwork and tests every like it had been every 3-6 months for the past 10 years. Now it was all about making him as comfortable as possible. I got lots of hugs and left with such a feeling of relief.
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You live in a cartoon too...I just wish mine to be peaceful.

I am usually the enemy. Being a well trained medical professional, I simply choose not to take any of his paranoia , anger or whatever personally. I did run away recently~I was so fried....but I am back.
My husband , who forgets my name a lot but oh how he recall this & that??~I am the bad guy/gal.
When he was first diagnosed 15 years ago with Solvent Dementia, I GOT ALL THE PROPER forms signed to give me POA, MPOA, DPA, covered it all...no family to deal with but just me.
I am fortunate that all his docs know me & we have worked together. All proper paperwork is filed. Sometimes I see a Light inside but sometime I fear for myself.
I LISTEN TO THE VOICE IN MY GUT~it has yet learned to lie to me~~smile.
I so feel for you...Dementia presents in so many different ways.
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Around where we live, there are a growing number of doctors as well as other medical service providers who come to the home and are paid by Medicare and whatever supplemental you might have. This might be an alternative to getting him into an office. It means that your husband does not have to leave the familiar comforts of home AND may mean that he will be off his polish. Watching him in his own environment rather than a strange place may be the better option.

A second alternative is to try a different doctor who will work with you.

Meanwhile, keep documentation of what you bought, which doctors you called, how you attempted to communicate with the results, etc. With those step-kids looking for ways to get at you and being fed false and inflamatory information from your husband, you may need to prove your case if those step-kids get the government involved in a bad way.

You have a very difficult situation, and our heart goes out to you.
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Vegaslady: thank you for your advice. I found the courage after reading your reply and called the docs office. I made my way to the office manager and she told me that she and the doc was aware of my letter but didn't know why i never got a call back. Regardless, she said they would work with me if could just get him there. So i made an apt for Friday and will tell him about it last minute to try and avoid an anxiety attack and his refusal to go.

Runragged: thank you for help and kind supportive words. Also gave me strength. I asked if his doc did home visits but they said no and were unaware of any that did. And your advice concerning his kids and documentation of my efforts makes smart sense to me. Thanks again.
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I still have some doctor colleagues who simply do not ever respond to patient e-mails. There are a few tricky hoops to jump through with HIPAA regs and precautions about never using e-mail for emergencies, but many are fearful of negotiating them, and some delegate all patient phone calls to nurses, and some nurses don't keep up with them or just leave the ones they think are uncomfortable too; a few insist that all communication occurs face to face during office visits as billable time. Maybe with the new patient portal systems things will be a little better.

That story about the kids buying into his wishful notions your engineering critical surgeries for him as if it was a Munchausen's by proxy is just wild. I don't think they do those without objective evidence on angiograms, but I guess the were not very sophisticated. You might want to send them some information on vascular dementia and how it differs from Alzheimer's so they have a clue that its possible for him not to be OK just because he still knows their names and phones them. But, depending on what you learn from the doctor, who had best do a decent mini-mental status and neuro/balance exam at the minimum, you may even want to look at a guardianship to keep his care safe from him going off the deep end into denial again and changing or being talked into changing the POA.

You sound both caring and wise enough, and tough enough to do what needs done!
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When you check in, ask the nurse to please call "Mr. and Mrs. Lastname" and skip the weigh in because of anxiety issues. If they forget, tell the nurse as she is bringing you two back, "I'm sorry, but *we* are skipping bp and weigh in because of anxiety today. *We* might be able to do that later when *we* have spoken to the doc."

When doc gets into the office and starts talking about your hubby, maybe that will provoke the outburst/verbal abuse you hope to get under control. I usually took a very short letter to give to the nurse as I went in the exam room door (behind mthr) with current symptoms and things I think she could listen out for. Maybe through the door!!
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Waweeta, I suggest that when doctor looks to you, you burst into tears and say that you can't take the abuse and stress anymore. Ask the doctor to recommend a good placement for LO. Walk out.

One third of all caregivers die before their charges do. Don't be a statistic.
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Wow, so great to read this and how you were able to bring about needed change. waweeta, you have been dealing with so much for so long. You're a real hero, and good luck with these new changes at home!
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When my journey began 6 years ago my mother also refused to go to the dr. unless it was for flu shot or something easy. Fortunately she and my dad went to a Senior/elder care physician and I was able to work with the dr. and her social worker. I always went through the social worker when I had a new problem or needed to try different medications that my mother refused to take because "she didn't need them because NOTHING was wrong with her!" I wouldn't put up with that doctor for myself or for a loved one. Try to find a social worker in your area that will help you find a qualified elder care nurse or doctor that can meet with you on neutral ground or in your home. They can work it as if they were just friends or acquaintances that have come for a visit or that you have run into at lunch. They will take notes and start a file on your husband. Best of luck to you. I know it's hard....
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So the doctor needs - NEEEEEEDS - to be a geriatric specialist, not a GP or famil practice doc. This makes all the difference.

My mother had her GPs fooled for decades and didn't receive proper care for several things that led to a very fast decline for her. She also showtimed and danced her way around cognitive questions by flirting with the doctor and acting like the sweetest piece of pie you ever met.

It wasn't until she got in front of a female geriatrician who could not be hornswaggled and who did a real cognitive evaluation test on her that things took a turn for the better. She could not fake her way through the SLUMPS test they gave her. She could not flirt with a female doctor. When she could tell her "southern belle momma" act was not getting her anywhere, she dropped it like a hot rock and showed her real nature.

Part of dementia will involve your spouse not being able to maintain the show long enough to get away with it.

Finding an competent sympathetic doctor with the experience to see past the show is extremely important. If I could highlight that and make it blink I would.

Geriatrics and geriatric neurology is a specialty just like pediatric neurology is. The typical family practice office doc is just not educated on this and may avoid anything outside their comfort zone. (How is this helpful? It's not.)
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