Trying to get diagnosis for resistant DH

zilco58

This is my first post, though I’ve been lurking for a while. I have many questions, but right now I need advice on how to handle the portal message I am sending to our PCP prior to my 69 yo DH's appointment next week. First, some background: My DH is 69 and has been having noticeable issues for 3-4 years (noticeable to me, anyway, as well as our adult daughters) He has a PhD and is—was—a very intelligent man, and he worked in a medical setting most of his professional life. His sense of humor, one of his greatest attributes and very important to our 37 year relationship, is mostly gone, and he’s become very sour. It’s as if he used to have the 64 pack of crayons and now only has access to the 8-pack. He has been depressed and anxious since childhood and on psychotropic meds since adolescence. You name it, he’s taken it. I know this is a risk factor for dementia, but these meds also complicate a possible diagnosis (for example, he has a marked tremor, but that is also a symptom of lithium use). His mother died from dementia, his father had multiple systems atrophy, and there is Parkinson’s in his family, as well. His only sibling was exhibiting signs of dementia when she died at 60 of other causes. He has always been a hypochondriac, but he refuses to follow through with diagnostic testing, so his anxiety continues unabated. He is terrified of being diagnosed with dementia.

This is a new doctor for him; I have already seen her. My goal is for her to administer the Medicare cognitive test herself (not assign it to a resident) and to view him through the lens of probable cognitive impairment. A similar effort I made with a previous doc turned out to be disastrous. I sent a message to our PCP, whom we’d seen for 6 years, and during the exam she mentioned Lewy Body Dementia to him and ordered an MRI (which my DH promptly cancelled). She also wrote in her patient summary that he was “paranoid.” This enraged DH, who is very knowledgeable about psychiatry, because she had not followed the protocol for diagnosing paranoia and wasn’t entitled, in his opinion, to use the term so cavalierly. He told her he did not want that in his medical record, but she refused to remove it. This was 2.5 years ago. At the time, he was up and down all night, creeping around the house because he was sure someone was breaking in and even hallucinated an open door, etc. It was at that time that he started leaving the lights on in the rest of the house at night, something very out of character, as he had previously preached sleeping in a pitch dark room to avoid disruption of circadian rhythms and hormonal activity.

Fortunately, I handle the finances, because his grasp of financial concepts is now shaky, at best We have wills, trusts, POA and advanced directives, so that’s good. However, the trusts are in his name, as they mostly contain funds inherited from his family, and I wonder when I’ll have to inform the trust co about his impairment. Since he doesn’t have a diagnosis, it’s just my word. I pushed for adding a universal design addition to our house because I saw this coming. He calls it “the hospital wing,” and its existence depresses him, though it is light-filled and lovely. We always agreed we would remain at home, not go into a nursing home. We also have multiple LTC policies that will cover home care. I know I am very fortunate.

I’m sorry this is so long. Any advice on handling the portal message and doctor’s appointment – which I’ll be attending – is much appreciated!

Joe C.

My wife’s PCP was not very helpful when I reached out to her with my concerns about her cognitive decline and I have heard the same from other caregivers. She did refer her to a neurologist but after 1 appointment DW refused to go back. It took me a couple more years and a fiblet to get her to see a new neurologist for a diagnosis. I made an appointment with a new neurologist and informed the new doctor of my wife’s resistance to being tested/diagnosed beforehand. I told my wife the appointment was for sleep apnea and the doctor played along, first questioning her about her sleep patterns before moving on to cognitive testing. Since your husband has a medical background this a similar ploy may not work. Maybe you could tell him the testing was JUST part of a research study and as an academic he would be willing to participate. You would need a doctor to play along and my thinking is a neurologist that is use to dealing with people with dementia might be more willing to do so than a PCP.

M1

welcome to the forum. I would inform the trust people sooner rather than later and get their advice about how to proceed; read the trust documents carefully also. There are folks here who have lost hundreds of thousands of dollars because they didn’t intervene soon enough.

Sounds like you are taking the right steps with the doctors. Be very very specific and detailed in what you tell them. If he has outbursts that you can record or videotape, submit those as well.

Educate yourself about anosognosia, it’s a feature of most dementias that prevents him from being able to perceive his deficits. Very different from denial, and it means that you will have to proceed without his cooperation. If it becomes unsafe for you to care for him at home, a psychiatric hospitalization may become necessary to clarify the situation.

Sorry you are facing this, but you have come to a good place for advice and support.

Rosanne77

Hello,

Your DH sounds very much like mine. Highly intelligent, with a wonderful sensenof humor, and now this! It really is so sad. I will say when I first started noticing memory issues we had an appt with a neurologist who thought, possibly, that my husband's issues could be caused in part due to his chronic pain, so let get that under control...nothing is quick in the medical world and so we waited. Then could some of the meds he is on be causing this, so then we weaned him off some things and saw a marked improvement in some areas. Then he had a fall and they saw water on the brain (not from the fall) and he could have NPH let's rule that out…I could go on and on and here we are 2.5 years later with a definite Alzheimers diagnosis from a spinal draw, finally. Keep pushing forward. Document everything. Video and written. Give written notes to doctors before appts about what you see. My DH always thought I was exaggerating when I spoke honestly about what I was seeing during his appt. Our GP is amazing and helpful as are all my husband's doctors now. I have another thread going on here about getting help at home. Everyone on this site is so helpful. I wish i had found it earlier. I wish you luck. If you don't have a good personal therapist find one. (Mine is really earning her fee😉) I was ready to walk out on a 43 year marriage before the diagnosis, because I really couldn't handle the personality changes. And try to get the humor back. It helps.

zilco58

https://alzconnected.org/discussion/comment/214567#Comment_214567

Thanks for your insights. Your intervention was very clever, something I will have to become to obtain care for my DH. I suspect that if our PCP isn’t helpful, it may be a matter of waiting until his condition worsens and I can get away with some fiblets. I want to get him the care he needs, but I can’t imagine him being receptive in the near future. Meanwhile, I am keeping notes.

zilco58

Thank you! I have been reading everything I can get my hands on to orient and prepare myself. Still, I find myself reacting when I shouldn’t. I’ve always been argumentative, and I hope I’ll become a better person as this progresses, though I must say it’s a hell of a way to learn. I’ve decided to first broach the subject with our retired trust advisor, who has

https://alzconnected.org/discussion/comment/214575#Comment_214575

become a friend (though he’s now four states away from us). I think he will give me sound advice on how to handle the trust affairs. I’m also writing down every symptom or weirdness I notice.

zilco58

You have really been through it! Navigating the healthcare system is daunting, especially when the person you’re advocating for is resistant and/or incapable of believing that they are impaired. I’m a planner and a doer, and I’ve been through my own parents’ neurological problems (cerebral aneurysm and traumatic brain injury) as well as my in-laws degenerative diseases. I just have to find a way to get him a diagnosis. Thanks so much!

ButterflyWings

@zilco58 Welcome though we wish there was no need to find this special group. It is indeed a lifeline and one of the best "prescriptions" DH's neuro gave us on diagnosis.

DH initially had to be convinced that something was happening to him. That he had missing hours out of the day when he could not recall anything that had occurred. Including getting huffy with me "for being missing all day and not even trying to reach him", when I showed him the phone records listing our 30 minute call. And oh yes, he had actually driven me to work. No recollection. (That driving part is terrifying in retrospect)

So once convinced, he agreed to seek medical answers to hopefully identify something treatable before it was too late. After the full battery of tests necessary to rule out something else, and a somewhat dismissive PCP giving him the "all clear" took at least a year or more. Meanwhile, things were still deteriorating and getting more impossible to miss. So, we persisted until diagnosis via ST at DH's agreement. He wanted everything possible to get to the bottom of this and ideally treat it. Wasn't meant to be.

The neuro team is great and after changing PCPs, our current care team really is just that. With me as a respected part of that team (except when urgent care or ER was required. Nightmarish disrespect and dismissal of spouse caregivers' insight, rights and responsibilities to their LOs has caused unnecessary cost, delays, and distress to both DH and me more than I care to say. And patient safety risks. There oughta be a law.) But I digress. Our team lead is the hospice agency, who interfaces with me directly as home caregiver.

I am glad you are seeking legal advice for your trust question which is a legal matter. Are you the durable POA? The advice here is usually to see a CELA certified elder law attorney even if only for a consult, so you can be sure to not make decisions without fully vetting them with the experts in that area.

And, I don't know the age for EO diagnosis in order to qualify for SSDI, but that seems important to move forward quickly and firmly now with a more senior doctor, as you are doing. For us, a neuropsych dementia specialist was the key though this was late onset so the soc. security disability benefits did not apply.

zilco58

https://alzconnected.org/discussion/comment/214750#Comment_214750

Thanks so much for your insights and advice! Yes, we have POAs, wills, and trusts. I made sure we updated them two years ago, as I saw this coming. However, based on the advice of someone up the thread, I contacted our retired trust advisor, who has become a friend—albeit three states away. He was very sad to hear this from me, but also very helpful in laying out the steps I’ll need to take. I plan to schedule a phone appointment with our estate attorney while my husband is at therapy. Even though we’re near the beginning of his decline, he’s only comfortable being away from me for those two hours a week, so I need to make the most of them. I am sorry for what you—and all the kind people here—are going through, but am grateful for your wisdom.