Ideas and Tips Please: Hubby Distrusts Doctor(s)

[Willow Tree]

Hi, Everyone--

I've posted before, but usually as an Encourager.

Tonight, I need a little help/guidance. My husband has Parkinson's and vascular issues.

I'm having difficulty getting him to comply with doctor's visits. Not just their advice, I am having problems getting him to go just for scheduled visits and/or checkups.

I know we all know how PWD can think they're "JUST FINE."

In our case, my husband is getting suspicious of doctors' motives, advice, etc. He just won't trust them and I'm finding myself unable to cajole, convince, or even push him to go. Our last visit, he told me categorically to "shut up" and not talk to the doctor AT ALL and let him handle everything. He was rude and short with our GP, who found it strange, but didn't seem to put 2 and 2 together, just thought Hubby was mad at him for some reason. Since I was not permitted to speak, it's a strange new situation for me. I will speak with his assistant and explain the situation to her so she can tell the doctor, but right now, just wondering HOW to get Hubby to comply with medical visits.

So far, we have nothing major or unexpected to deal with, but he has some issues that need to be tracked quarterly, but I just can't get him to keep a doctor's appointment to get things checked/monitored (like blood sugar levels, blood pressure, etc.).

Any tips or ideas will be greatly appreciated; this is a strange new development.

Thank you for any suggestions,
Willow Tree

 

[pamann]

Hello Willowtree,
I had the same with my husband, he refused to go to all medical appointments, dentist, Dr. Glaucoma clinic, chiropodist. This happened 6 months before he went into a CH. there was nothing l could do about it you cannot make them do what they do not want to do, l just had to cancel all appointments, they all understood that my husband had Alzheimers, the Dr visits the care home, but he has no idea who the Dr is, the chiropodist visits, he lets him do his feet sometimes. I worried about it when he was living at home, but now l think let nature take its course. He's none the worst for it.

 

[Mannie]

How about set up a meeting with the doctor and yourself, without your husband, explain and ask for help. For example maybe your Hubbie would respond better to a different doctor, or a nurse. Maybe he would respond better to home visits?

Possibly they could look at why your husband might be behaving like this, for example is he suffering from depression or anxiety, are the alternative or additional meds that might make his and your life easier ?

Thirdly, what I have done in the past is written a note of observations and questions that you can pass through to the doctor, before you enter the room, that way the doctor can lead the conversation.

Or maybe you get "called in to the doctor" for a few minutes prior to your husbands going into the consulting room where you can discuss and answer questions. Or even better a quick phone call.

If your doctor does not help you.... then this is not a dementia friendly doctor, and suggest to change doctors.

 

[Mannie]

Last thought but possibly the most important, is that you need to overcome that feeling that your input into the doctor is not important... it is critical , and you are right , that you need to give input on behalf of your husband, in yo ur role as his carer. I had this same issue myself, it took me some time to come to terms with taking on the responsibility, and ridding myself of the self-doubt.

I am not sure how it works in US, but in UK we have a Power of Attorney which gives the legal right to act on behalf of someone who has loss of capacity. You definitely need to get this done if not already, and then provide this to the doctor, dentist, chiropodist, nurse etc

 

[Shedrech]

hi Willow Tree
I just wonder whether you could pretend appointments were for you (with the understanding of your doctor) and you can then ask your husband to go along with you as moral support for you (or just happen to be with you, as you popped in on the way to do something else, so he may as well go into the appointment with you) - then talk about anything that needs to be discussed as if it were all about you - a bit tricky with tests but maybe you could have your blood pressure taken and the doctor ask your husband as it's useful for a comparison or some made up excuse - that way your husband thinks he's doing you a favour ????
definitely up date the doctor beforehand by e-mail or a note handed in when you arrive, so the doctor is ready for any odd behaviour - maybe sit behind your husband so he cannot see you but the doctor can and you can then signal in some way if what your husband is saying is accurate or not
maybe don't tell your husband beforehand about any appointments, just turn up - unless that will cause an even stronger reaction - generally talk about any medical issues as little as possible so his negativity doesn't build up
have a word with the doctor about which checks/tests are vital and which can be missed so that you don't feel under so much pressure to get your husband to all appointments
best wishes

 

[professor]

Home visit

My wife similarly refuses point blank to visit any health institution unless she is in acute pain, and once the pain is gone will not undertake any further visit for further investigation of reason for the problem. In order to move matters along our GP made a home visit which had only limited success. The conclusion was that to coerce my wife into allowing intervention would not produce worthwhile information and would possibly cause her further distress.

 

[Willow Tree]

Thank You All!

Thank you All for such great feedback/advice. It's very, very helpful.

Reading your suggestions, I see I'm not alone in this odd new development and I'm realizing it's probably just part of the progression. The suspiciousness is what's so strange, but reading through & thinking through this, I think it is somewhat related to anxiety/paranoia that's part of later Parkinson's. Things progress so gradually (like a fog) that while you're living through it, it isn't always clear exactly what/when/how/why.

Thanks to your feedback, I also see that what I'm worrying about (keeping the appointments) may not be such a big deal after all, since he really has no major illnesses/issues at this time. Why pressure him unnecessarily?

I think I'll do as you say, make a list to give the doctor in advance of the appointment (just writing down what we're there for that visit, any concerns/issues etc.), & I'll also talk privately to the assistant to let her know what's going on (that husband has instructed me not to speak or interrupt, etc.), so she can relay this to the doctor. I think if he sees something & needs to ask me a question directly, Hubby would be fine with me answering on his behalf. He just doesn't want me "interfering" now, LOL : ) You all know how pesky we Carers can be : )

I think I'll just set an appointment for a "check up" at the beginning of the year, tell him a day before we go, and reduce his anxiety by just not bringing it up till then. "Oh, look, I almost forgot, we have a doctor's appointment tomorrow at 2...."

My husband's in a phase where he watches everything like a hawk (hypervigilant) and is fearful/fretful at times about little things (hears a noise outside, thinks it's burglars, etc.). But his memory and awareness are mostly normal (so the "tricking" tips won't work--like pretending the appointment's for me & he's just going too). His problems are more in the judgment areas and emotional areas of his brain, rather than memory retrieval, etc. He can have a volatile temper & is now easily offended, which makes life tricky when dealing with other human beings (like doctors and neighbors).

One more quick note: fortunately, we did do our medical POA's several years ago, so that's all OK, thank goodness.

Writing this out and getting your feedback has really helped me and I thank you all! Your advice is priceless and hard-won, I know. You've REALLY helped me understand what's happening here!

Willow Tree

 

[Rageddy Anne]

It's good to see you have done POAs. Have you done both, Health and Welfare, and Finance?

My husband's mistrust of everyone especially the Doctor's diagnosis of Alzheimer's, means I only have POA for finances, but he insisted on dealing with them on his own and I'm left with a nightmare situation.

I never was able to broach the suggestion of POA for health and welfare, but we had an understanding GP. Now husband is at a Care Home, the GP there doesn't involve me at all...and I imagine it will be difficult if he ever goes into hospital... I recently discovered he was being given medication that I knew nothing about.

 

[LadyA]

My husband had always been slightly paranoid - it was just the way he was. A bit of a family joke. But when his dementia struck, the paranoia became a major feature. And, as he had always been very distrustful of the medical profession in general and medication etc. "Ha! The doctors just prescribe drugs so they can buy a new set of golf clubs - they are being bribed by the pharmaceutical companies to dope people up!" - with his dementia you can imagine the result! While furiously denying that there was anything wrong with him - it was me, making up lies about him, stealing things and hiding them to make it look as though he was losing his mind, me pretending I had told him about appointments and that he'd forgotten, etc. etc. - I discovered years later that he had been doing a lot of research in secret on Alzheimer's Disease and how to prevent it! His GP was very understanding and did his best, but William went once to the Psych of Old Age consultant he was referred to. As soon as he saw the word "Psychiatrist" on the door, he refused to go back, and refused to take any prescribed meds. Until about a year later, when he had a psychotic breakdown, and was having constant horrific hallucinations & delusions, and was living in a nightmare. Then, he was glad to go to the doctors, and take tablets "to help him sleep" - actually anti psychotics. Long story short, by then, his illness had progressed enough, and the anti psychotics sort of switched off the paranoia, so he never minded going to the doctors after that!

Throughout his illness, I always kept a sort of "log" of how he was, any incidents, any odd behaviours, any signs of progression in his illness - and I sent it to his doctor before any appointments, so they had a heads up on what to look for, and what kinds of questions to ask him.

 

[Willow Tree]

It's good to see you have done POAs. Have you done both, Health and Welfare, and Finance?

My husband's mistrust of everyone especially the Doctor's diagnosis of Alzheimer's, means I only have POA for finances, but he insisted on dealing with them on his own and I'm left with a nightmare situation.

I never was able to broach the suggestion of POA for health and welfare, but we had an understanding GP. Now husband is at a Care Home, the GP there doesn't involve me at all...and I imagine it will be difficult if he ever goes into hospital... I recently discovered he was being given medication that I knew nothing about.

Rageddy Anne--

I'm so sorry you're left with such a problem. I don't think we see this coming, ever.

Luckily, we did all the POA's a few years ago, before the exacerbations of the illness hit, so we're covered on health, finances, and even guardianship if it ever comes to that (which I hope it does not). My husband was somewhat resistant to executing all the paperwork, but he had realized something awful could happen if we didn't (I'd recently had a medical emergency and he had some scary moments, thinking how not having all the paperwork executed could have made life a mess for him had I not pulled through). Once I was well, we did what we needed to, for both our sakes.

I guess the "stubbornness" is not only part of the disease, but also a character trait from younger years that just gets tremendously amplified as the judgement part of the brain is getting weaker. I know EXACTLY what you mean about not "being allowed" to do the POA for health--so sorry for him that he didn't let you do that while he could. It's made life unnecessarily hard for you and of course for him.

If we could urge anything for EVERY Carer, it would be to get all paperwork done and in order ASAP, because the more the illness progresses, the less likely you'll be able to do this cooperatively and without hurt feelings on either side. Such a sad disease, no matter what it's called. I'm constantly amazed, looking back, how steep and fast declines can be, with no opportunity to go back in time.

I thank you for your kind thoughts and great suggestions. Sending you a hug of thanks and hope for much to make you smile today : )

 

[Willow Tree]

My husband had always been slightly paranoid - it was just the way he was. A bit of a family joke. But when his dementia struck, the paranoia became a major feature. And, as he had always been very distrustful of the medical profession in general and medication etc. "Ha! The doctors just prescribe drugs so they can buy a new set of golf clubs - they are being bribed by the pharmaceutical companies to dope people up!" - with his dementia you can imagine the result! While furiously denying that there was anything wrong with him - it was me, making up lies about him, stealing things and hiding them to make it look as though he was losing his mind, me pretending I had told him about appointments and that he'd forgotten, etc. etc. - I discovered years later that he had been doing a lot of research in secret on Alzheimer's Disease and how to prevent it! His GP was very understanding and did his best, but William went once to the Psych of Old Age consultant he was referred to. As soon as he saw the word "Psychiatrist" on the door, he refused to go back, and refused to take any prescribed meds. Until about a year later, when he had a psychotic breakdown, and was having constant horrific hallucinations & delusions, and was living in a nightmare. Then, he was glad to go to the doctors, and take tablets "to help him sleep" - actually anti psychotics. Long story short, by then, his illness had progressed enough, and the anti psychotics sort of switched off the paranoia, so he never minded going to the doctors after that!

Throughout his illness, I always kept a sort of "log" of how he was, any incidents, any odd behaviours, any signs of progression in his illness - and I sent it to his doctor before any appointments, so they had a heads up on what to look for, and what kinds of questions to ask him.

Lady A,
Your note about the Golf Clubs made me laugh--my husband's always saying they're getting free trips to Bermuda : ) And I'm very careful to never say "pharmaceutical" in ANY setting, or we launch a 30 minute tirade, LOL.

Great tips; thank you. I'm parking the anti-psychotic medication info in the back of my mind, just in case the paranoia gets much worse. For now, I just soothe. But I've often wondered what I would do if this became severe; you've helped me realize there may be help available later, if he needs it. Overall, we try to minimize medications, since he tends to have opposite reactions to many of them. In his case, less is usually more. But I have definitely learned one has to re-evaluate things often with this illness.

Willow Tree