Our path to finding out what we were dealing with was blocked because we didn’t have the right medical help at first. When we got it, things changed quickly and for the better. Be bold, Ask questions.
This is part of an ongoing series about our family’s experience with dementia. There is no order to it, just observations, reflections and, I hope, some guidance for others on this journey or who may someday begin it. It is not intended as any sort of medical, psychiatric, or financial advice. Just one family’s experience…
WHEN I LOOK back over the past year and a few months of dealing with dementia in a loved one, I think one of the things that jumps out at me is the critical importance of the medical team, from Day One.
As our family tried to determine what was going on with Connie – Was it just depression, anxiety or something worse? – we did not have a medical team. We had a general practitioner. Both Connie and I saw a dermatologist, therapist, podiatrist, dentist, optometrist and so on. But a “team?” No.
And why should we have had one? Most medical teams come together after a diagnosis, but in looking back at our experience I wish I’d known what I know now.
Our GP, in hindsight, was a roadblock. Our therapist was not in a position to see what our family was seeing.
When we got to West Chester we needed a doctor and found one. I particularly noticed a huge difference between the new doctor and my doctor back in Huntsville, TX. My doc’s practice had gravitated to a geriatric practice and maybe that’s why he was such a good listener. Most of my visits started with several minutes of conversation about what brought me there, what was going on, then there would be whatever level of exam was needed. I never felt rushed and always felt like he knew me as a person. Connie could say the same about her doctor.
But our GP’s office had more of an assembly line feel. There wasn’t a lot of chit-chat, not a lot of listening. I was generally in and out in less than 20 minutes, sometimes much less. I talked about changing docs, but Connie didn’t want to go through that. Until….
We had an appointment where concerns about dementia were pretty much dismissed. After some time passed and we started to feel more and more that dementia might be a possibility, we asked for another appointment. Connie was not trusting her memory so we created a list of items we wanted to talk about specifically.
When the doctor came in the exam room (at this pointed Connie wanted me with her at all times on appointments) the doctor looked at the list and said “I don’t know that we can get through all this in 20 minutes. Pick what you want to talk about.” Connie became rattled, I was not a happy camper and the assembly line visit basically ended without much in the way of answers.
Out in the parking lot Connie said “OK, I see what you mean” and we began a search for a new doctor. I checked out geriatric practices and found one in our town, but the geriatric doc was not taking new patients. I mentioned this to a woman whose husband is dealing with Lewy Body (see previous post) and she said they went to a doctor in that practice. She gave me a name.
We set up an appointment for us both to go through intake. Wow. This doctor spent 90 minutes with us. She was warm, and professional. She was thorough and made us feel involved. To cut to the chase, that was when a door opened that led to our building a network of care that was open to looking at what was going on with Connie.
I mentioned her therapist. At one point, early on, I had stood in the waiting area with Connie and the therapist and asked if she had any suggestions on cognitive testing. She put her arm around Connie and said “Connie is a strong and independent woman and does not need that.” I was a bit taken aback. But, after thinking about it I understood why she would say that.
First, Connie was, and still is, her patient. That was who she was serving, not me. She saw Connie two hours a month. I saw her 24/7. It’s very likely Connie did not display, in just an hour twice a month, what I was seeing at home. As we went down the path, the therapist became a more active part of our team and now allocates a part of each visit to both of us. She is a welcome presence.
So, where does team come in? The new GP immediately referred us to a neurologist in the same office. We met with him and he scheduled Connie for an MRI. That did not show anything other than normal aging. So, he referred us to a neuro-psychologist. She put Connie through a four-hour test that arrived at the diagnosis of Frontal Temporal Dementia with Primary Progressive Aphasia (speech and communication impairment.)
At that point we could have pushed for a PETSCAN, which is an MRI on steroids that uses radioactive dyes to actually “color code” portions of the brain and show damage. I did a bit of pushing for that but the neurologist opted not to order one. The only thing it might have showed was the degree of damage and if any other sort of dementia was working along side it. Given it would have involved a trip to downtown Philly and a lot of stress on Connie, and would not have changed what we were facing, he was not for it. As a side note, not all insurances cover PETs totally and they are costly.
So, based on all we knew we were able to begin making decisions. Would it have made a difference had we had a GP more open to our questions? I doubt it. We lost a few months and maybe we could have gotten Connie into a drug trial that may have slowed progression. But in the end, the destination of our journey would not have changed.
That being the case, how did the team make a difference? First, having the team gave us a sense of security in terms of the diagnosis. Every member of this team has been warm and comforting. Second, we arrived at a place where we could begin to make decisions based on a diagnosis.
| How to Prepare for Asking Your GP About Dementia – Benjamin Rose Institute on AgingNote: These questions are designed for a patient concerned about dementia. If you are acting on behalf of a loved one, they still apply. 1. Know your family, medical and prescription historyDiagnosing dementia is a complex process—rather than using one definitive test, doctors and specialists rely on many different methods and tools to determine whether a person has dementia. Doctors need information about you and your history, including:Family history: Not all dementia is inherited, but certain types, particularly frontotemporal dementia, can be passed down genetically.Medical history: Knowing your medical history can help your doctor determine if you have certain dementia risk factors, or if your symptoms might be caused by a condition that you have that is unrelated to dementia.Prescription history: Certain prescriptions cause dementia-like side effects, such as forgetfulness or difficulty thinking clearly.2. Write down symptoms and behaviors you have noticedIf you are addressing dementia with a doctor, you likely have a reason behind your concerns. Maybe you’ve started forgetting appointments, or are having trouble focusing on everyday tasks you used to do easily. Any time something happens which causes you concern, make a note of what happened and when. This information will be valuable to your doctor when making a diagnosis. Be sure to focus on new or sudden changes. It’s common for people to forget things on occasion or have days when they’re in a bad mood, but if these things are happening with increasing frequency or to a greater degree than before, they’re worth discussing with a doctor. 3. Ask others for insightLoved ones often notice things about us that you never notice ourselves. If you feel comfortable doing so, it can help to reach out to the friends or family members who spend time with you and ask them if they’ve noticed anything unusual. 4. Come prepared with honestyIt’s not uncommon for people to omit important information during health appointments, especially things they’re uncomfortable or ashamed of. It may be tempting to minimize symptoms in hopes that will lessen your chances of being diagnosed with dementia. You may even feel the need to leave out difficult details, such as feelings of depression or uncomfortable changes in behavior because they’re not easy to talk about. But, an accurate diagnosis will come sooner and easier the more open and honest you are. 5. Prepare questionsIf you’re concerned about dementia, you’re sure to have questions. Write them down so you don’t leave any out. |
My bottom line message? Don’t be a shrinking violet. If the GP does not take your questions or concerns seriously, stand up and insist they do. You don’t have to be confrontational, but you do need to be firm. You are an advocate for your loved one’s interests so you need to act like an advocate. If you aren’t comfortable with what you are hearing, start looking for a new GP. Talk to friends who may be dealing with dementia. Do searches for geriatric practices. If you don’t have your GP solidly on board, it’s going to be hard to create the team you will need.
Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year. Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].