Alternative Treatment

Chammer

Long post alert. DH is undiagnosed. I completed the D-bat and my very unskilled assessment puts him in Stage 4. I have shared previously that his issues are less memory loss and more personality changes and executive functioning skill changes. He still drives and works with lots of behind the scenes support – he is “running” 2 businesses and all would be wonderful if it wasn’t for all the incompetent fools who surround him according to him ( I am one of those incompetent fools and public enemy #1 in his eyes right now). He has always had a strong aversion to healthcare and will only intermittently take his meds – he is diabetic, type 2 (dx’d 2003), diabetic retinopathy, neuropathy, diabetic radiculopathy, alcoholism (active), high BP, high cholesterol, ED, coronary stent placed in 2019. Employees, our adult kids, and I noticed cognitive changes beginning in 2019-2020. I have shared his history before so many of you may have already read all this - thank you in advance

Even with his aversion to health care, he is constantly looking for the next thing that is going to “cure” all his ills so he doesn’t have to take any more evil medicine. We have spent a fair amount of time, effort and money in pursuing traditional and alternative treatments, especially since 2018. He has refused gabapentin and any other meds that might help his neuropathy – the only meds he is taking (or rather, are prescribed, but not taking) are diabetic meds (Synjardy and Tresiba), blood pressure med, diuretic, cholesterol med. He also has supplements that have been approved by his endocrinology NP. 

First off - I am not anti-chiropractic medicine. I believe that traditional and non-traditional approaches to healthcare are all very viable, and each has its place. DH was seen by a chiropractor in 2018 for back pain – he did a bunch of spine xrays, started therapies including using his newest deep tissue massage gun – told DH based on his xrays he had ankylosing spondylitis – DH has been seen by orthopedic physician over the course of a several years both before and after seeing the chiropractor and was never diagnosed with AS by him. DH visited the chiropractor for several visits then declared it too expensive and quit seeing him. 

He recently met a new chiropractor through a group where he volunteers. The new chiropractor recommended a kind of intense electrical stimulation therapy and told DH that his neuropathy can be cured. DH has used TENS in the past and found it beneficial but quit because he didn’t want to “get addicted” to it. He tried TENS again recently and is unable to feel any stimulation lower than mid-thigh. DH went to new chiropractor last week, had the “full body electrical stimulation” (which is $60/hr) and is now planning to “do whatever it takes to keep the treatments going because I can feel my feet now.” I would be all in except … DH says that chiropractor told him that with these treatments and a slew of supplements, many of which DH is currently supposed to be taking (and is not due to refusing to take meds), he will be able to get off all his medications which are “poisoning him.” 

I have medical POA so can speak to the chiropractor to see if this is something he actually said, but since I am public enemy #1 right now according to DH, I am trying to be as “out of sight, out of mind” as possible. Prior to March, DH has always insisted that I go with him to most all appointments so I can listen and get all the information conveyed by healthcare provider. His last appointment w the endocrinology NP was a phone consult in March - he was on a every 3 month visit schedule.

I sincerely believe that DH will do some treatments then quit as has been the case w most anything we have tried.

DH isn’t taking his medication anyway, but I feel like this borders on medical malpractice to even recommend getting off his meds. It makes me want to scream but I know this guy doesn’t understand what he is dealing with! (and no, I'm not lawsuit-happy or seeking anything in that respect as I know DH has probably not provided adequate information to this practitioner)

I have an appointment next week with CELA based on consultation I had with a dementia specialist (DH was not present) to determine the best path moving forward. Specialist felt that DH is a danger to himself and others and also further along on dementia staging than my staging - and this was before the new chiropractors recommendations! I got lots of other great recommendations from specialist - most of which I have already been made aware of by the many amazing, well-educated Alzconnected caregiving warriors here, so score one for each of you who has taken the time to learn and been willing to educate as we've joined the "nobody wants to be here" ranks!

Thank you if you were able to read and make it this far!

FAHNJL

Short answer, he needs help for his alcoholism. Until he quits drinking, you're fighting a losing battle with all the rest of it.

JeriLynn66

I would most certainly make sure ALL care providers are informed of your DH’s executive function issues, non-compliance and alcohol issues.. I agree he is a danger to himself and perhaps others..

very sorry you are going through this…

housefinch

It sounds like:

a) He shouldn’t be driving ever again. Meaning tomorrow. No matter what. Please. Driving is the most complicated and demanding activity many people do every day. He could hurt or kill himself, you, a passenger, or someone else’s beloved family member.

b) He needs a good PCP to drive this bus and know your concerns (Eg you should communicate via a list of what you posted here about his symptoms—-give it to the staff member who checks him in for a physical). He needs a dementia evaluation and it’s possible he has a component of alcoholic dementia plus vascular dementia or who knows? PCP can start evaluation.

c) He should not attend any more medical appointments alone because he clearly lacks the memory and executive functioning skills to give accurate data to providers & to understand, process, & act on what he’s being told.

d) I would start reading threads here re legal planning

@harshedbuzz may have good insight

Best wishes, sending you strength and support

Ed1937

Detailed notes for the doctor to read before appointments really work. Many of us have used them, and they are welcomed by the doctors because it gives them information they probably wouldn't otherwise get.

Whatever it takes, you need to get him to stop driving. When he gets in an accident, you can be held responsible because you are his caregiver, and you are allowing him to drive. One accident could cost you everything you have.

Many times posts from others are not what we want to hear, but they're for our own good.

Chammer

I will likely not be able to convince DH to stop driving in the short term - he isn't diagnosed, hasn't had any accidents or traffic stops, no dings on his car, is still working. He is more likely to have to be told to stop driving by his ophthalmologist as his retinopathy is progressing - he has regular eye injections for it and is having a laser procedure done on Monday. I cringe though when he calls me while driving and he is honking and cussing out "a stupid driver who just (insert various - cut me off, pulled out in front of me, slammed on their brakes).

I have an appointment Tuesday with a CELA for a consultation - I have all legal paperwork in place - just need some direction which I hope she is able to provide - she comes highly recommended.

I have been on the forum for a while - sometimes just information gathering and lurking, occasionally commenting, mostly venting - and I would like to say that it just amazes me at the kindness, knowledge, and willingness to help and support others within this virtual group. Thank you all for always being there!

KathyKS

my husband is in the mild to moderate stage. I feel the pressure from other support groups for him to give up driving. I’ve heard a) get a letter from the doctor or b) have an OT do a driving assessment. Haven’t done either. He still drives to familiar places nearby.

What has worked fairly well is to ask him “You driving? Me driving?” and most often if it’s someplace further away or unfamiliar he’ll opt for me to drive. I also have gotten tired of being his personal GPS so I use the GPS on my phone. It’s less personal and less upsetting plus it reroutes automatically when he misses a turn.

You might start a discussion by asking him if he finds driving stressful. If he wants to go someplace out of the norm say “I’ve got your back. I’ll drive you.”

housefinch

You won't be able to convince him because of his brain damage. You're risking your assets by letting him drive when he is actively drinking and has obvious cognitive decline and would almost certainly fail neuropsychological/cognitive testing. Yikes. You are taking a huge risk, and I would not want to imagine what a prosecutor would say in a courtroom if he is sued for causing an accident. Are you going to be happy with this decision if you are in that situation someday? I am sorry for being so blunt. However, if you read other past threads about driving, you will find descriptions of people who lost all assets and were left penniless because, even if someone lacked a diagnosis, the spouse/family member was well aware of that person's risks and deficits. I would be getting the cars and keys out of there. Regardless of his reaction.

Ed1937

@KathyKS , welcome to the forum. Sorry you need it, but it is the best. I'd like to offer a suggestion. Instead of asking “You driving? Me driving?”, maybe just say "I feel like driving today". If his memory is short, you can use the same line over and over.

It sounds as if he has missed a turn more than once, and maybe shouldn't be driving. The people from the other support group are likely trying to keep you from a lawsuit if he is in an accident. We don't always get the answers we want here, but they're always sincere, and should at least be considered. Whether or not you act on them is up to you.

SDianeL

When my DH was diagnosed 2 years ago he was still driving. He went for the 3 hour test with a Neuro Psychologist. She called me after the test and said under no circumstances should he be driving. He had visuospatial difficulties that showed up in testing. He could not tell time, speed or distance. I had no idea. The only things I noticed were that he was driving very slowly & would sometimes drive over curbs, something he had never done before. She said that once she put it in his chart that he had cognitive issues that if he were in an accident, even if it wasn't his fault, we could be sued and lose everything. I sat my DH down and told him what the doctor said. Later that day, he brought me his keys. He never drove after that. He still pouts about it though. Your DH should be tested asap in my opinion. Something to think about: He has to sign the DPOA. How will you get him to do that if he hasn't been tested?? Please keep us posted. I've been where you are (except for the alcoholism).