Frustrating Healthcare Situation

Chammer

A long and dreary vent - DH, 60yo, not diagnosed w dementia, but w cognitive changes that are FTDish, but could be related to heavy alcohol use or vascular changes. DH developed ear pain in Sept and fnally was in so much pain that he let me schedule Dr's visit mid Oct. (DH already has a challenging personality, his "brain" changes have made him more challenging and pain makes him even more challenging on top of that)

Long story not so short, we have been dealing w an ear infection ever since and it has become mastoiditis requiring referral to otologist (next level up from the garden variety ENT who we have been seeing several times a week since Oct through otologist appt in Dec).

An MRI was done at the end of Oct and showed no abscess and changes consistent w ear infection (MRI did show changes c/w chronic microvascular ischemia but no other things that screamed dementia)

We saw otologist on 12/07. He said surgery is needed but need CT head and cardiac clearance. Got those done even paying out of pocket for CT so we didnt have to wait 2 weeks for insurance to approve - CT was done on 12.14 and i hand delivered the disc w pictures to otologists office before 9a on 12.15. (was hoping to get it all done including surgery before the end of the year so we don't have to immediately meet his massive deductible in the first 2 weeks of the new year... didn't happen... I know it's the holidays)

CT report said mastoiditis, completely obliterated middle ear, inner ear still good, and possible tegmen dehisence. Finally got the call to schedule surgery on 12.20 after me calling office almost daily and surgery scheduled for 1.2.24 (woohoo) but then got a call from surgery scheduler on Friday 12.22 at 4p that Dr had seen a "tegmen dehiscense" on the CT and DH needs another imaging test and neurosurgeon consult because there might be a CSF leak. Cancel surgery til after neurosurgeon consult.

DH or I have not as of today 12.29 received a call from a clinical person to discuss any of this. Is it urgent? It can wait? Who knows? Not us... DH has profound hearing loss (new), constant, bad headache, face and ear pain, constant ear drainage, "heartbeat and crickets in his ear", and I can't load him up on acetaminophen due to significant alcohol use (yes, still). Hydrocodone (includes acetominopen) wigs him out so he refuses to take that. Tramadol (also acetomiphen) doesn't completely wig him out but he will only take 1 at bedtime so he is taking that plus 1 acetaminophen at bedtime and 2 acetaminophen in the morning. I've been holding his baby ASA and not letting him take Ibuprofen because he is supposed to be off it for 2 weeks before surgery. Ibuprofen was helping at least reduce his pain level.

I have called otologist office daily this week to follow up, leaving messages, and today, after calling imaging center and neurosurgeon office (whose assistant was quite nasty - i have been told I am a very calm, patient person, but I might not have been using my nice voice) neither have received orders for either the additional CT scan or a neurosurgeon referral. I ended up sobbing to the poor little otology receptionist today. And still nothing done or scheduled.

I am frustrated and angry beyond anything I could ever imagine. I have to start again on Tues (yay, holidays) trying to get something accomplished and am already dreading talking to the nasty neurosurgeon assistant. (i will use my nice voice).

(I did call an otologist office in a neighboring city and was able to get a consult scheduled for Jan 16. At this point, I feel like surgery will happen about the same time in either city)

M1

So sorry. It's useless to try to get anything done between Thanksgiving and new years, that's the bottom line (I have been dealing with similar issues). This is a very worrisome story and does not bode well for his hearing or his cognitive function. Please be upfront with the docs about his alcohol use, he could be in danger of withdrawal postoperatively. He is likely in for a very complicated time and is likely to need prolonged antibiotics. I would also suggest that you discuss with the surgeons whether he may need inpatient rehab after any procedure, that may be your best bet of keeping him sober. Do you have medical power of attorney?

60 falcon

I can sure relate to getting the runaround and being unable to schedule necessary appointments with specialists for my wife. She had different issues and the circumstances were different but the frustration for me was very similar. When I was at my wits end, I filed a formal written grievance and a verbal grievance with the healthcare system for violating their patients bill of rights, specifically for denying my wife "access to appropriate care". (I might be off on the specific wording but it was along that line.) I became the squeakiest wheel that I could be. My wife had her appointment with a fantastic specialist in TWO days.

I'm not normally one to complain like that and I didn't like doing it. But the grievance was justified in this case and it worked for us.

housefinch

Agree with @M1 . I’m also in medicine and unfortunately coordinating anything complex is almost impossible over the holidays. Definitely agree with being very honest about the alcohol use, including how often and exact amounts. You do not want him having seizures after the surgery because he is in withdrawal, on top of everything else. I hope someone has been watching his liver function, given his acetaminophen use for pain and alcohol use. Sounds like he will probably get surgery at a regional or academic center maybe with a neurosurgical ICU? I don’t know, I’m just thinking aloud. Definitely sounds complicated and likely will have ups and downs as he recovers. I’m sorry you and he are going though this, and I hope you have a good support network for yourself.

Iris L.

I was a pediatrician and I had one patient with mastoiditis, he was treated with intravenous antibiotics. Has he had any antibiotics? IMO, September until late December is too long to wait for treatment.

Iris

harshedbuzz

@Chammer

I am very sorry for the situation in which you find yourself.

I agree with the others who said coordinating care between 2 sub-specialists this time of year is going to be a challenge.

My dad was a difficult individual pre-dementia and a more intense version of that once he developed dementia. He had mixed dementia, one of which was an alcohol-related dementia. Please be certain his doctors know what drinking looks like for him-- number of drinks daily, whether it's a daily routine or more of a binge situation. They may want to detox him ahead of this surgery for his safety and they may suggest a SNF/rehab for aftercare without access to alcohol. Detoxing is not a DIY project, btw.

In addition to watching his liver function, his doctors need to be aware of the potential for cognitive changes attributable to a vitamin deficiency related to alcohol. Dad had Wernicke-Korsakoff's along with mild Alzheimer's at the time of his diagnosis. He was treated with IV Thiamine in the hospital and transferred to a SNF/rehab to work on physical mobility and balance issues for 7 weeks. During that time, sober with the deficiency corrected he improved considerably.

Alas, once he returned home, he went back to abusing alcohol. I was not willing to subject my mother to his abuse being the alcohol police given that his Alzheimer's was progressing. We considered a special treatment center for seniors that had an error-free sobriety program but staff there felt dad was too impaired already to be successful in recovery unless we moved him to a facility earlier rather than later. This wasn't feasible given that dad had lost $360K day-trading before he forgot how to use his laptop which meant the funds for care were more restricted than we'd known. My mom is medically complex and odds are high she will need in-home care or move to AL/SNF: I didn't see the benefit to spending down their assets and limiting my mom's options in the future.

That said, I found his doctors, with the exception of his geriatric psychiatrist, were quite judgmental around substance use disorder piece and did not appreciate the dynamics that go into living with someone like dad. I can't say that you're experiencing this same phenomenon, but it does exist as a possibility. I suspect they found us frustrating as a family because we weren't able to "control" dad. His geri psych was quite helpful and landed on a medication that did tamp down, but not eliminate, his desire to drink.

HB

Chammer

I am more and more worried about what surgery and post surgical recovery will look like for DH. He thinks he will have the surgery, be home and back to work in a few days. (DH still works in our business) He has appt with our local ENT tomorrow, 1.2.24. He has also over the weekend developed swelling in his cheek in front of the affected ear and his pain has worsened which is of great concern to me. Hoping our local doc is able to help me push for some movement forward with the specialists.

He started on Augumentin in October, switched to Cipro after a couple of weeks, then was put back on Augumentin which he completed the last course a few days ago - so at least 30 days of Augmentin and 10 days of Cipro - 2 cultures done after antibiotics were started didn't grow any bacteria or fungus (I'm almost wondering though if once they get in there, it will end up with a fungal component). Has also been using Ciprodex drops on and off per ENTs recommendation. A couple of steroid injections and a course of oral steroids, as well. Was visiting our local ENT at least 2 times a week from mid Oct to Dec 7 (when we saw Otologist) for ear cleaning and suctioning and did have an inflammatory polyp that was near his ear drum partially removed at the end of Nov. He has Type II DM (poorly controlled) which he only intermittently takes his meds so this has actually helped us get that in much better control as he is taking all his meds right now.

@M1 Yes, I do have medical and durable power of attorney in place since Feb 2023. It took some convincing to get it done, but I knew it needed to be done (Thanks! Alzconnected!) DH isn't diagnosed with any cognitive issues but changes are evident so I knew it was important. DH doesn't hide his alcohol use but he certainly isn't as honest as he should be. He usually just says he "drinks alot." For several weeks this summer he, of his own accord, switched to zero alcohol beer and did fine physically but has gone back to regular beer since then. He does have a long and significant history of alcohol use.

@60 falcon I have been trying to be the squeaky wheel and I'm hoping that after today, since the holidays will be over, things start moving at a faster pace.

@housefinch since DH is diabetic, his labs are checked regularly (except DH was refusing to go to endocrinologist since Mar, 2023). He had labs completed for this pending (not scheduled) surgery and liver enzymes are good.

@Iris L. DH has been on antibiotics orally and ear drops since mid Oct. Also, a couple of steroid injections and a course of oral steroids. I'm not sure what else we could have done differently.

@harshedbuzz DHs liver functions have been good as well as his B12 and B1 levels. His cognitive changes have been more his personality - like your dad, his challenging personality traits seem to be on steroids, minor memory issues, some executive functioning changes, now having some word finding issues. Navigating the healthcare system is difficult with him for sure.

My orginal career was in healthcare so I have an understanding of the process that DH doesn't have. Dealing with him and his extreme lack of patience and negativity while trying to fight for him in this situation has really exhausted me though.

In addition to DH's issues this fall, my little 85yo mama who I am medical POA for was diagnosed w breast cancer in October, had lumpectomy in Nov (all margins clear and clean lymph node - woohoo!) and will have a very short course of radiation in a few weeks. She lives about 5 hrs away so I have been traveling back and forth to be there for her. Fortunately she is otherwise very healthy and I have brothers who live near her who are very willing to help if needed there.

Thank you all for our thoughtful responses. It has given me much to consider.

M1

Please keep us posted. These infections in diabetics can be extremely serious and even life-threatening. It could well be fungal. He may need to be hospitalized to get on top of it, i would discuss that with your ENT tomorrow....