Dementia spouse won't go to dr. unless I lie to the them about his late-stage symptoms. Any advice?
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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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.
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.
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!
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!!
One third of all caregivers die before their charges do. Don't be a statistic.
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.)
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.
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.