an official diagnosis, finally

It sounds crazy to call a diagnosis of Alzheimer’s a relief, but in our case it is. It’s been nearly two years that Dad has been trying to get Mom’s clinic to pay attention to her memory changes and figure out what was causing it. Not knowing leaves the door open for a lot of miscommunication and misdirection, effectively shutting the door to seeking out proper treatment, or reversing it if it turns out to be treatable. There was also the matter of mom forgetting what goes on at her medical appointments, like her appointment from January when she’d been referred to a neurologist. Bringing it up to her, in light of her completely forgetting it, would trigger her suspicions that she was being lied to and conspired against. It became a terribly awkward, guilt-inducing dance of accessing her medical records without her knowledge (so that we could learn what actually happened during appointments, although both Dad and I have already gone through the proper legal channels to be named on her HIPAA forms and be legally named as her power of attorney for healthcare matters) and contacting medical professionals behind her back, pleading them to look into her memory issues and begging them not to tell her about our efforts on her behalf, not wanting to trigger her emotional outbursts, suspicions and rage. It’s ironic, isn’t it? She has been absolutely right all along on the matter of our working together behind her back, but her imaginings that we’re “conspiring against her” couldn’t be further from the truth. It has all been out of love and terribly worrisome concern over the alarming changes we’ve been watching unfold the past few years. I know we’re not alone in this. I hear again and again that other families going through the same changes are brought to the same actions.

Let me share with you how we were finally able to get her in to see a neurologist. It’s a story that I’m sure other families in this situation will nod their head to, recognizing the great challenges this disease poses not just to the patient, but to family as well. I also hope to enlighten those who don’t realize or understand the complicated and convoluted “dance” which dementia requires of the patient and those who care for them. It’s not an easy thing to explain the complexities of memory loss to those who know little about it, or who have limited and infrequent contact with someone who’s in the early stages of the disease. To begin, I’ll back up about a year and a half when my Dad’s increasing calls of concern to me about Mom’s memory changes brought us to desire a diagnosis of some sort. At that time we had no idea what was causing it. For years we’d chalked it up to normal aging, but it was becoming apparent that this was beyond normal. Dad had a friend who’d been showing similar symptoms, who was referred to a doctor for a diagnosis and then started taking B-12 shots, after which his memory improved tremendously. Maybe this was happening in Mom’s case, as well? Or maybe it was another treatable condition? We wouldn’t know, and we couldn’t get her treated, until she saw a doctor about it and was diagnosed. This is how it began.

But at that time, Mom was still in denial about her memory issues. Any attempt to bring up the matter, or to suggest she see a doctor about it, was met with deflection. She would point to Dad and say his memory was just as bad. We would tell her that it might very well be treatable and reversible as was the case for their friend, but she refused. Next, Dad tried suggesting that the two of them go in to see a doctor together, both being tested at the same time, but she refused this as well. As the year progressed it became more habitual for her to joke and apologize for her “bad memory”. My sister and I thought we might use one of these opportunities to suggest a doctor look into it, but that too failed. In the meantime, Dad began trying to intervene with the doctors and nurses at her clinic (where he’s also a patient), requesting that they evaluate her for memory issues, but they were uncooperative. I also tried calling the clinic at one point last summer, speaking to one of the nurses there. I was told it was “not their job” to ask Mom about her memory, that Mom had to bring it up first. Again we suggested to Mom that she bring it up with her doctor, but she refused.

Feeling incredibly frustrated with the lack of responsible care by her doctors and clinic, I started researching options in the large metropolitan city I live in (my parents live a few hours away in a much smaller town). I sat down on three separate occasions with my Mom, discussing these with her and also suggesting that she and I go in to be tested together, as I also sometimes wonder about my own memory! I had hoped Mom might be okay with it if I also went in for the same appointment and tests, but again – No.

As I noted in a previous entry, we finally got her home clinic to bring her in for testing in January. Although she doesn’t remember the appointment, according to her medical records they conducted the VAMC SLUMS test with her (one of many standardized verbal tests doctors use to evaluate a patient’s cognitive and memory concerns). A score of 27-30 indicates normal cognitive functioning, 21-26 shows mild neurocognitive impairment, and a score of 1-20 indicates dementia. Mom scored 19. According to the visit notes, they discussed following up with an appointment to see a neurologist, which (according to the notes) Mom agreed to. The notes say a referral was made, but by the time she got home she’d forgotten about it, and no one from the clinic ever called to follow up. It was the classic “one step forward, two steps back” scenario, leaving us frustrated once again in our efforts to figure out what’s going on for her.

In the meantime, we continued reaching out to others for help — friends in the medical profession, support groups for dementia, the helpline for the Alzheimer’s Association, friends who have also dealt with similar matters with their own loved ones. One of the suggestions that came up repeatedly was to go ahead and make an appointment without her knowing, and then either tell her just hours or a day before (partly because of the forgetting, and partly to mitigate the potential for negative reaction), or to just get her in the car and take her there without telling her until we actually enter the building. This sounds alarming, I know, but it is something that has worked for many, and which is one of the few options left when the patient adamantly refuses. But in our case, we knew that pulling such a move would almost certainly not work. The chance that she would walk right out as soon as she realized what was happening was 100%, not to mention the resulting anger and likelihood she would never speak to any of us again (at least until she forgot it). But we were feeling desperate and Dad asked me to make an appointment, which I did. He was hoping he could catch Mom on a good day and convince her to go willingly. He tried. She refused. He tried several times. She refused each time.

At this point I started trying to move Dad into a new mindset. We could not, and would not, drag Mom kicking and screaming to an appointment. What, then, is the alternative? It seems we have no choice but to just wait until something happens. Yes, it might be something horrible like a car accident or her getting lost and not being able to find her way home, but maybe we needed to start accepting this as the only option open to us? This is another example of the very “messy” and heartbreakingly difficult challenges that families in this situation have to face more often than you might think.

The appointment at the big clinic was nearing, just a week away, and Dad still had not been successful in getting her to agree. So, thinking he just needed more time, he called to reschedule it for a few months from now. Unfortunately, the clinic sent Mom a letter in the mail confirming the change of appointment, which she found and opened. She flew into a rage, understandably. Dad apologized, explaining he’d made the appointment out of concern and love for her and only wanted what’s best for her. It didn’t help.

That was two weeks ago. The day after that happened I had planned to come visit them for a few days. I asked Dad if I should still come and he said yes. Maybe she would have forgotten, and in any case, he didn’t want me to cancel my visitation plans out of fear it would trigger her suspicions again (she often accuses Dad of turning my sister and I, and even their grandkids, against her — keep in mind, this is the dementia talking, not my sweet Mother). I came as planned and Mom seemed fine. There was no sense of anger or tension at all. We went to lunch the next day and as we chatted over lunch she told me how she’d been terribly angry at Dad just a few days ago, but when I asked her what had happened she couldn’t remember. She searched and searched her mind but nothing was there. All she knew was that she had been very angry with him. This is how things usually go with her these days. She remembers the emotions but can’t remember the details.

Feeling once again that we’d stepped backward instead of forward, Dad decided to try a new route. He physically went down to the neurology clinic where she’d been referred in January and asked if they could search their records for a referral. Maybe if they could find it we could have them call to make the appointment? Although Mom refuses any attempts on our part to get her some medical intervention, she will go along with whatever a medical professional says. If the clinic could call and tell her that her primary care physician had made the referral she would almost certainly agree to go. To our surprise, the receptionist at the clinic told Dad that Mom already had an appointment scheduled, and it was for the following week! In fact, it was scheduled during the week I’d already planned to be there. What luck!

Finally! We had an appointment for her, and one that she would likely go to since her clinic had made it. We asked the neurology clinic to call her with a reminder, telling her that her primary care physician had requested it (which he had). It took a few calls from the clinic to convince Mom that her doctor had made it and not Dad, but she finally concluded they were telling the truth and she decided to go.

The next hurdle was the matter of having either Dad or I accompany her to the appointment. There was a very real chance she would forget what was said during her appointment (she has a proven track record on this now), or that her primary clinic had not forwarded her medical files and the neurologist would simply ask her why she was there and she would say, “I don’t know. I don’t have a problem.” Dad and I even tried going down to the clinic the day before the appointment, asking if they could call Mom to request that she bring another family member, but by that time they’d already called her so many times. They assured us the neurologist she’d be seeing would be certain to evaluate her for memory issues.

On the morning of her appointment I made breakfast for her while she got ready. She was in a good mood and we chatted pleasantly. Almost as a sort of side comment I asked her if she’d like me to accompany her to her appointment. To my great relief, she said yes. As we drove to the clinic she thanked me for coming along, telling me she would have surely gotten lost and never found it if I hadn’t been there with her (so true). Dad was there, as well, and the three of us waited for her to be called in. As she waited, she was asked to fill out some paperwork. It was the usual stuff you fill out when you’re a new patient at a clinic. Questions about your health history, your family’s health history, your insurance information, medications you currently take, etc. She really struggled to remember and answer correctly, remarking that she was glad Dad and I were there to help her recall.

Finally we get in to see the doctor. He conducted another cognitive test with Mom, similar to the VAMC SLUMS she’d done in January (I’m not sure which one he used, but they all have the same kind of questions — “What year is it? Who is the president? Do these simple math problems. Draw a clock showing this time. Repeat these four words and remember them in a few minutes.” etc). Mom actually did very well with the math problems although it did take her considerable effort to answer them, just like in the lobby when she was trying to answer the questions on the new patient forms. It was almost as if it was physically straining to her to figure out the answers, and it definitely took much longer than it used to take for her to answers questions like that. She did fine on the clock and cube drawings, too, but every question that required even the shortest of short term memory was a total fail. She knew it would be and kept trying to not answer at all, telling the doctor that she could in no way remember things like that, but he did his best to give her every possible chance of remembering, even having her practice and repeat things as often as she needed in an effort to remember them. But no. She couldn’t retain any new information, even just seconds apart.

After the testing and some very awkward questions asked of Dad and I (right there in front of Mom, which I felt was inappropriate and unfortunate) to “give examples” of the different instances of memory loss and cognitive or emotional changes we’ve seen in the past few years, he told us matter-of-factly that Mom was in the early stages of Alzheimer’s. I worried that Mom would take this badly, but she sat there calmly and seemed to have no reaction at all. It was clear to us that she had already prepared herself for this possibility. The doctor also noted it might be due to low B-12 or thyroid, that he would test her for this, and if these were found to be low it was easily treatable and that the memory declines would be reversed. So there’s that. Of course, we’re hopeful that’s all it is. We’ll find out soon enough.

I also asked him if there was a way to check for and confirm the presence of plaque in the brain. Honestly, it seemed a bit unscientific to proclaim such a big diagnosis simply on the basis of a series of verbal and written questions, and yet this is the standard by which the disease is currently diagnosed. He seemed to indicate there really wasn’t a definitive brain scan kind of test aside from an autopsy (we all laughed at that). For now we’ll let this diagnosis sink in and will wait for the results from the thyroid and B-12 tests, but I may still want to try to bring her in to the big clinic here in my city. There is so much research being done, so many clinical trials she would likely qualify for, as well as promising protocols involving diet and other lifestyle interventions. I’d love to get her in to a clinic that is forward-thinking. Still, knowing my Mom, she will likely not want to bother with anything other than the ‘tried and true’, no matter how unsuccessful the ‘tried and true’ has proven to be in the case of Alzheimer’s. We’ll see…