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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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Just go ahead with the appointment, even if you don't get an advance ok from the doctor. Get him there and fallout will happen one way or another. Good luck.
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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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Oh my, what a pickle! Hubs clearly needs some meds to treat the depression/anxiety symptoms. I'm glad the doctor has seen your message; perhaps someone can get him to see a geriatric psychiatrist. Might he be convinced if he thought it was for YOUR mental health?
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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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waweeta, unless your husband has signed a HIPAA release form the MD cannot talk to you or email you. SO make an appointment for about 1PM, take hubby out to lunch that day at 11:30 without telling him he will be seeing the doctor. Just go there after lunch.
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Her power of attorney will go into effect if he is diagnosed with dementia. She will then have access to his records.
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Babalou-he has been on several meds for years for the mental disorders. But he refuses to go to therapy to learn coping skills. Vstephans-thanks for your insight. It sounds like that is what happened with the doctor. 10yrs ago, he had a stroke, then corodidendorectomy, a heart attack woke in that hospital, was taken to another hospital for heart surgery with all arteries closed 97-100%. He didn't want his kids to know at all (they were estranged)and the only reason they did is because i convinced him to let me call them at the second hospital before surgery. He actually told me that i would regret it. And we included gardianship/conservatorship in our DPOA (health care) when we did them.
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Pamstigma-we also included that in our DPOA. Katiekat2009-he was officially diagnosed at his last mini-stroke last August while in the hospital. That's part of the struggle with a patient that refuses care. I believe it started 10yrs ago but the doctors see records stating only 6months ago. I don't believe he went from stage 4 symptoms to stage 6/7 in only 6 months.
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hello
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Takes care of mom ( (67) she has medicare ( part unknown) paranoid and has benn for last 20 years. ABSOLUTELY will not see a dr.. cant get guardianship because cant get incompetent paperwork ( see wont go to dr.) gave up on this battle a while back ( before medicare kicked in ) Just had a thought does madicare provide an in home service to evaluate older adults? for the porpuse of declaring them incompetent?
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I'm proud of you. Just make the appointment and tell him it's for you after you get there. Then when you go in; both of you go. Good Luck. And I will Pray 🙏 for results😇❤️
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Waweeta, it sounds as though his cognitive skills are diminished past the point where therapy would be of help. You have to have the cognitive capacity to learn new things to do therapy and sadly, it sounds like there has been too much damage to his brain. Hope the doctor can make some meds adjustments.
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Jaysmom: I had to send copies of our DPOA before his ins would even talk to me and they said medicare requires a visit to his Primary doc before anything is approved. I think your objective would require an attorney. Sounds your situation is even tougher than mine. Dont give up. Make lots of phone calls. Eventually you find someone that points you to another thing to try. Good luck and here's a hug.
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Doodlebug: thank you For you kind words. I have to tell him today because it takes me two hours to get him thru the shower process and i won't have time in the morning. I am worried that with the few minutes you get at a doc visit that "showtiming" is going to challenge my objective once again. hopefully the doc will see thru it, but he will definitely see the decline in mobility.
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Babalou: I too, am hoping for an adjustment on his meds for the anxiety and depression. That's a tough one though. It's not a physical observation for the doc and requires an interview process. LO lies and threatens me (I will never go to the doctor again) if i say anything. LO shows me the most beautiful side of himself and is very cooperative in his daily care when the depression and anxiety are at bay.
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I would skip the showering. You are not trying to show his best side, but his typical side. If doc sees that it must be difficult to shower him, that will help make your case. Working hard to make him "normal" in re clenliness works against your goals here. When I had to take mthr to doc from her place, she went as is, as that made it that much more obvious that she had serious decline.
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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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Surprise: love your ideas. But the shower is an ocd thing and required if i want him to leave the house. I don't see how he can stand on the scale without falling off. It's one of those old fashioned ones that wobble when you stand on the small platform. Do i say we need to skip it or do i let the nurse struggle with him so they can witness?
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Surprise: I'm going to do the note idea. But how should i respond when the doc starts asking questions? (Remember, refusing care is not an idol threat. He has refused care for over 6 months now. ) First the doc usually asks LO question (have you been anxious, nervous, depressed); LO lies, and then doc looks at me and LO glares at me.
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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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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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Sandwich42plus: very helpful. Now. ..with medicare, I'm i required to get a referral from his gp to a geriatric?
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Waweeta, When you have a little baby and you know you need to get his shots, you really don't want to put him through that pain and suffering. Are you going to put up with his whining and tantrums, or are you going to do what is right and protect him? You are going to get his shots because you love him more than you are afraid of him.

You also want to get your hubby on whatever course of action will make him better because you love him so much. He will seem to hate you for loving him in his frailty, but it is not you he hates, but his stage in life. If you have to get guardianship to get him medical care so he has more years with you, you will have this report in his record only if you speak up.

We rescued my mthr when she could not remember anything except her anger at me. I brought a third wheel along to support *me*. When doc asked her how she was, she said fine, just like your hubby, and doc looked to me. I pulled up my spine, looked straight in the doc's eyes, and made a report, just like I would if I had been a nurse. I did not say "mthr" I said "the patient." At times she thought it was her, then she would think it was third wheel. We went and sat in the waiting room a little longer while friend went to bathroom (to decompress while we were at doc's in case of an outburst) and then went to get an ice cream. With sugar, all was forgiven. I hope you have as positive an experience.
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Wait - I had mthr in a memory care unit and I did not have to be alone with her. I forgot that you were still living with your dear hubby. I agree with Babalou, tear up, tell him you can't deal with the verbal abuse and threats if you are honest with the doc any more, that you've got to get him into inpaitient geriatric psych evaluation now because you are afraid of what he will do to you when you get home.

You love him so much, you don't want him to get his feelings hurt, but he is endangering you and himself both. Please be honest with doc,and get him real help. Will be praying for you Friday.
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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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Sorry typo. ...15 minutes talking to him (not 45)
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Praise God from Whom all blessings flow!
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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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Waweeta, I'm so happy for you and your husband!
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