At the MD office, sit or stand behind the patient, facing the doctor/nurse. When mom would tell a fib, I silently shook my head "NO" which cued the doctor to question her further. Mom could not see me, so that worked really well.
Castle, very interesting, professional and wise! I still haven't got to that stage yet even though I have my degree. Somehow, the dysfunctional family dynamics rear their ugly head, and given my fatigue level and living with mom 24-7, my irritability and other emotions dictate my behaviour. That being said, I can understand why mom thinks I'm always criticizing her and she can never do anything right (highly ironic because it was the reverse my whole life). Case in point, I gave her a short story I wrote as a Christmas present when I was young, and she just verbally proofread it and picked out all the errors, lol). So maybe, to borrow the transactional analysis theory, I am still relating on a child-adult or critical parent-child level, so the suggested/appropriate techniques don't work.
This is spot on. I used to go with my mom to her appointments and would give cues to the health care provider for a private discussion later on. The health care provider invariably would know that my mom had some dementia just by spending a bit of time with her, so the private discussions served to confirm what the provider suspected.
These examples are great - I wish I had known how to write up such a series when I was younger and so was my youngest brother who was born with developmental disabilities later diagnosed as brain injury. I watched over him in his transition from home to community, and because I had been taught to not let his life become my life, I set him at a distance, in rural towns in Maine, 5 hours from me. That distance made it harder for me to have examples at hand, and also made it easier on local professionals to deal with him, and because I did not seek guardianship, he was officially his own representative - even if his ability to self represent was exactly as limited as the example of Charlie in this article.
I found there is a gender culture difference involved, working cultures or Irish - because many males are taught that they bond best with other males, when they do not complain but they say they can do whatever task is needed. In some cultures males are brought up with an identity of being the protectors, and complaining is seen as whining. Discussion of skills, pain, or lack of skills is not expected - the men just try to step up and say I can do this, and without complaint go and do it.
This was great in days when tires needed changing when they blew, or ice fell off the roof. I learned to drive a bus (female school bus, then transit bus driver), and once when the type of bus was changed and a group of us were being trained, I was kicked off the training team by a worried male instructor, who heard me asking questions before moving forward, and called me an accident waiting to happen. The same instructor passed the fellows who were training with me, when they just sat in the seat, said "great!" "all is fine", or said nothing, and drove off - coming close to hitting mail boxes as they turned. (When I later insisted on time to practice alone, I learned the skills so well, that instructor said, "I can't understand it. You look like you've been driving all your life!"
Many academics and people of other cultures and women - don't understand or accept this different way of presenting oneself, so we call it lies, or stubbornness - but I've found that by accommodating the need to self present well, then correcting by using the words "AND" rather than "but" - they are more willing to grin and appreciate the additional information.
With patients with dementia, similar issues often emerge - sometimes there is an age defensiveness - (I'm the leader, you are younger, I know best). Whatever the reason, I appreciate the lesson I learned from a brilliant man who worked in an institution for people with IQ deficiencies - he taught us to avoid contradicting with the word "No", for they hear that word many times a day, and come to resent it. Better to agree, nod at the MD, agree they do quite well, and the only difficulty comes up at such and such a point. That way we join the male conversation, and all walk off together smiling and nodding, bonding together in a world where we all are great.
Tell you what ... there are docs, too, who "blow off" what the accompanying person tells them. Before Ma's most recent (few years ago now!) doctor's appt, I emailed her re things that were occurring. What does she do when Ma's there? Asks her things like, "Who's the president?" "What day of the week is it?" (well, of course she'd memorized when her appt was), & other such insignificant things, then telling me, "Oh, she's FINE! Just fine!" when I'd told her ALL the "stuff" that she chose to ignore ... well, she ended up being "something else," anyway. Now she's gone who-knows-where, but you can't even get Ma to a doctor unless there's something ~~ was her foot/toe that time ~~ that's really hurting. Otherwise, forget it. (89 now)
I write notes to the doctor. Every little thing. Like ur husband, my mother can no longer do for herself. Yes, she has gotten herself dressed at 5am not sure how long it took her. Shower, she needs help because she is a fall risk. I used to lether wash herself but ended up having to tell her what to do so I took over. Goes faster. Patience is not my long sute. She can't use the phone or remote and now can't tell hot from cold even though I've written it on label stickies on the wall above each. Now, she won't drink because it will make her go. I tell her we all go and she need water to keep hydrated or her body will shut down. With one kidney working half capacity we don't need that.
I totally agree with the comments. I have the same problem with my husband. You can't have an accurate diagnosis with just the dementia patients comments. I even have friends that say "Oh he sounds so good." Unless you live with them and are there most of the time, the whole story doesn't come out.
I never go to an appointment without my wife. Maybe it's because I accept my limitations and realize I am losing ground a centimeter at a time, but I appreciate my wife correcting when I give incorrect information, and I frequently yield to her because I don't know what to say (she's not here at the moment so this is unedited!)
This is 100 percent on target. It is even more critical if the person with dimentia is living at home with caretakers who are not related or authorized to peak to doctors. Critical to arrange dr appointments when a family member can be there. I live 400 miles away but discovered the hard way that I have to be here for these questions.
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Dementia Patients Need an Advocate
I found there is a gender culture difference involved, working cultures or Irish - because many males are taught that they bond best with other males, when they do not complain but they say they can do whatever task is needed. In some cultures males are brought up with an identity of being the protectors, and complaining is seen as whining. Discussion of skills, pain, or lack of skills is not expected - the men just try to step up and say I can do this, and without complaint go and do it.
This was great in days when tires needed changing when they blew, or ice fell off the roof. I learned to drive a bus (female school bus, then transit bus driver), and once when the type of bus was changed and a group of us were being trained, I was kicked off the training team by a worried male instructor, who heard me asking questions before moving forward, and called me an accident waiting to happen. The same instructor passed the fellows who were training with me, when they just sat in the seat, said "great!" "all is fine", or said nothing, and drove off - coming close to hitting mail boxes as they turned. (When I later insisted on time to practice alone, I learned the skills so well, that instructor said, "I can't understand it. You look like you've been driving all your life!"
Many academics and people of other cultures and women - don't understand or accept this different way of presenting oneself, so we call it lies, or stubbornness - but I've found that by accommodating the need to self present well, then correcting by using the words "AND" rather than "but" - they are more willing to grin and appreciate the additional information.
With patients with dementia, similar issues often emerge - sometimes there is an age defensiveness - (I'm the leader, you are younger, I know best). Whatever the reason, I appreciate the lesson I learned from a brilliant man who worked in an institution for people with IQ deficiencies - he taught us to avoid contradicting with the word "No", for they hear that word many times a day, and come to resent it. Better to agree, nod at the MD, agree they do quite well, and the only difficulty comes up at such and such a point. That way we join the male conversation, and all walk off together smiling and nodding, bonding together in a world where we all are great.