A few words as I wade through all of the questions that were submitted to me upon my request… Be careful what you ask for, right?
I received more questions than I will be able to answer. If your question hasn’t appeared, it’s not because it’s not a good question. In fact, it may be too good of a question. I have looked at quite a few readers questions and thought, “No idea how to tackle that one.”
The question I tackle today is one that has taken me several drafts.
Elaine,
My wife has younger-onset Alzheimer’s and has an appointment coming up at the gynecologist. She goes every year for her check up, but this year I would have to go with her because she has declined a lot and no longer drives. I’m not sure if it’s appropriate for me to go with her or if she should go at all. I don’t know what she’ll say or do during the appointment. Any help is appreciated.
Ed
Well, Ed, let me start with this. I got a text from a friend recently telling me that she was headed to the “lady doctor.” And the “lady doctor” is not called the “lady doctor” because she’s a lady. In fact, sometimes she’s a man. My immediate response, of course, was to express empathy to my friend and wish her well. I could be in an awful fight with a female nemesis I despise, but if she mentioned she was headed to the gynecologist, I would halt all of my hatred for a moment to sympathize. If there’s one thing that brings women together to find common ground, it’s the gyno.
My female health practitioner is wonderful. She’s a great listener. She’s pleasant to be around and has a great sense of humor. Her “bedside manner” is second to none. Do I enjoy seeing her? Nope. Not at all.
My point is that even in the best of circumstances going to the gynecologist is no picnic. And going to the gynecologist isn’t the best of circumstances if you have dementia. It’s anxiety-provoking for most women. It can hell for women with dementia.
When I go to the gynecologist, I understand why I’m there. I understand that this unpleasant procedure is something a health care professional must do to help me take care of my body. But what if I didn’t understand that? How frightening would this process be if I didn’t understand what these people (who I may not be able to identify as medical professionals) were doing and why? Stop and think about that for a moment.
I’m not saying she shouldn’t go. I don’t have enough information to make that decision. And, even if I did, it’s not my decision.
If your wife was having a potential gynecological health issue that was causing her pain and impacting her quality of life, it might be necessary to pursue an exam despite any trauma it may cause. If this is just a routine exam prescribed by standard medical protocol, you may want to more closely consider whether it’s worth subjecting her to the appointment. Obviously, you should allow her to participate in the decision-making as much as possible, but as her Alzheimer’s progresses it becomes more and more your call.
If you do decide to keep the appointment, I might recommend calling the office ahead of time to make sure they are aware of her diagnosis. They might want to allow extra time. I would suggest staying with her–which I would assume might make her less stressed. You could also ask a trusted female friend to take her.
It is sometimes tricky to make decisions about whether people with dementia should pursue “routine” medical tests and appointments. Should Mom get her mammogram? Does Grandpa really need a colonoscopy? And what about the dentist?
If someone with dementia is in pain and we must determine (and hopefully fix) the cause of that pain, we may need to support them in enduring situations that are stressful and confusion at best–and horrifying at worst. We hope that our medical practitioners will be well-versed in dementia and patient with our loved one. Sometimes they are; sometimes they aren’t.
We should also keep in mind that medical appointments typically require us to follow instructions. Turn your head and cough. Put your feet in the stir-ups. Open your mouth. These seemingly simple directions, especially in an unfamiliar environment, can be overwhelming for someone with dementia. And then, of course, there’s the question of what you do with the information you gain from the appointment. If you find a problem, do you treat it? Is it cruel to not treat it? Is it cruel to treat it?
I’m sorry, Ed, that I can’t tell you what to do. What I can do, however, is give you permission to do whatever you think works best for your wife, even if it goes against the recommendations of the medical field.
It’s really helpful having a great female practitioner like you mentioned
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Yup; my PCP supports my decision for no more testing or exams unless i am in pain and it has hope for increasing my quality of life. ((Support from my husband on issue ? … Well … he is working on it LOL))
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Thanks Elaine for another great post. I’ve thought about this issue a lot, especially after a disastrous appointment at the dentist a few months ago. With a diminished lifespan, and with a goal of providing the best quality of life possible for time remaining, it just doesn’t make sense to subject someone to something that is of little clinical value, unless as you say, the person is suffering in some way and needs treatment.
Thanks to Jabberwalky for the description of the letter that she brings to appointments and new medical situations. It takes the pressure off of having to explain in front of your spouse, and it ensures that the proper information gets conveyed.
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Great questions, Elaine, and timely – I am meeting this afternoon with a new primary care doctor to specifically introduce myself and my spouse’s situation. I actually went to the office and talked to the receptionist about setting this up. Cannot take my spouse, because she would only stress about it and wonder what we were doing there. Cannot even tell her that I am doing it because she would worry about MY health…over, and over, and over.
It’s weird to exercise one’s POA like that, but that’s what it’s for. I also have a short letter that I bring or send to new medical situations explaining that spouse has dementia, is horribly embarrassed by it, is a totally unreliable historian, and requesting that procedures, rx’s and followup appointments be kept to a true minimum.
Some medical folks understand, but many are learning from us how to be most helpful. If this appt goes well today, I hope that in a “crisis” we have enough rapport established to get through it as simply as possible.
Thanks for this post!
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