I continue to fail in my attempts at keeping the original spirit of my writings to focus on the light and humorous moments I spend with my Mom. Over the years she has been an endless provider of these stories, so I am sad that the frequency has slowed and the opportunities wane.

To add insult to injury I wade ever deeper into a society who cares for people with dementia so poorly that my patience for ineptitude has worn paper thin. In fairness I can tell you that intentions are almost always good, when dealing with people in situations where I need their assistance when it comes to managing my mother and her disease.  But I also constantly bear witness to people who are either completely obtuse, inflexible or just plain institutional in their processes.

Case in point: My Mother has a temporary handicap hanger for the car so that if nearby parking cannot be found, the caregivers or I can park in a handicap spot when accompanied by Mom. She shuffles when she walks and her balance is poor. Because of her dementia she refuses a walker, rarely will cooperate with riding in a  wheelchair and sometimes will get angry when you try to take her arm to help her remain steady. As a result, short distances when walking are important to minimize fall risks.

Unfortunately the handicap placard recently expired and a caregiver used it to park with Mom when going to get an ice cream and got a $442.00 ticket for parking in a handicap spot. My subsequent call to the city to find out why it was not just a fix it ticket was met with a reasonable response of getting it renewed and bringing proof will adjust my penalty down to a $15.00 administration fee.  But I only have 10 business days to do it.

So I picked up the renewal form at the local AAA office (love AAA) and then drove up to UCSD Senior Health with the form filled in and ready for my mother’s doctors signature, as an original is required by the DMV.  I presented the form to the receptionist who promptly told me I needed to make an appointment for my mother to see the doctor before the doctor can sign the form.

I reminded the receptionist that this was for a renewal of the previously approved handicap placard by the doctor and told her about our unfortunate ticket and the remedies I needed in place to avoid the fine, and of course to get the placard renewed. Her response back to me was an understanding smile and a repeat of the fact that I still needed to make an appointment to have my mother seen by the doctor before it could be signed.

Irritated that I spent half my morning on this errand only to have this irrational answer as my reward, I calmly asked, “Can you please explain to me WHY the doctor needs to see my mother again on this issue when she is the one who approved it in the first place?” Pleased she had the immediate answer the receptionist cheerfully responded, “Yes, to see if your mothers condition has changed.”

I looked at her for a long beat and then remarked, “She has Alzheimer’s. Her condition changes by the week but not for the better.  She is not going to be BETTER than the last time the doctor saw her.” The receptionist looked at me without comment and I asked, “Can you please see if she can just sign it without an appointment?” She answered that she would check with the nurse but she didn’t think it would be possible to make and exception.

I waited at the desk for the nurse and when she finally came up to speak with me she repeated, with more authority, verbatim the policy that the doctor had to see my mother.  When I asked if why, when they clearly knew my mother was not going to be better than she was on the last visit, we needed an appointment with the doctor she replied, “It is required by the State of California.”

Why this hit me in the gut like a hot poker I cannot say. What I wanted to say was that the State also requires the doctor not to drive faster than 65 mph on the freeways but I bet sometimes she does. I wanted to say that the State insists the doctor pay for every penny of her taxes but I would be willing to bet some creative itemizing happens so that may not always be the case. I wanted to get really mad and say ugly things because what I heard them say made me feel like they don’t really get how their bureaucracy affects my mother.

Unless you live it you don’t get what an absolute nightmare it is to try to get my Mother to the doctors office. She asks where she is going over and over again the whole time you are in the car. If you lie to her she sometimes will down deep realize that when you get to the office and then she gets very suspicious and angry. If you tell her the truth then the entire drive to the doctors office she will make you explain again and again why she is going to the doctor and then every time respond back that her husband is a doctor so she doesn’t need to go. This of course necessitates the “Your husband is dead” story which then takes on a whole life of it own!

Then you arrive at the doctors office and it is almost a guarantee she will make a scene in the waiting room and demand that you take her home because she is not sick and you have no business taking her to this place without her permission. If your appointment is running behind and there is a wait, then you have to walk her around the building, trick her into distracting conversations or do whatever you can do to keep her from trying to walk out or be distressed. All of this before you even get to the doctor.  That is a whole new circus once you are seen.

It is very upsetting to her, a nightmare for me and yet no flexibility was being presented to look like I was going to avoid the inevitable. So instead of being ugly I had to accept that even in an office where people are supposed to be expert at caring for my mother, I had acknowledge that they really have no idea in how many areas they are not our partner in her care. Just people who follow the rules when it works best for them.

It reminded me of a past conversation I had with a dermatologist who was caring for my mom. He had recommended a procedure that I felt was wholly inappropriate based on the fact that she had Alzheimer’s. He agreed with me that not doing anything was also a good decision based on her circumstances. He replied, “Sometimes in a medical practice we do what we think is good medicine but not always good for the patient.” Finally I thought, someone who gets it.

However, not so on this day. So, I quietly asked the receptionist for the soonest possible appointment and she replied, “8:30 a.m. next Monday morning”. I calmly responded that with my mothers dementia mornings are difficult to get her oriented, fed and going and with San Diego Monday morning traffic on top of it, that time would not be realistic. “Ok how about Tuesday at 4:30 p.m.?” she asked. Perfect, I thought to myself, just in time for me to sit in afternoon rush hour traffic for an hour going there AND coming back with my mother saying over and over, “I don’t need to go to the doctor, my husband is a doctor! You don’t have my permission to bring me here!” But I looked at the receptionist and said, “Ok thanks, I will take it.” Then I walked out, feeling the full weight of inflexible, institutional and obtuse all in one experience.

I miss the humor too……