Long rant, that will hopefully be worthwhile by the time you get to the end of the tale…
Back from my travels, I need another vacation.
If I haven’t indicated this clearly prior to now, I’m a long-distance caregiver for an Auntie who is losing her grasp on life due to a situation that’s been labeled, “Frontotemporal Lobe Damage”. In layperson’s speak, it’s like Alzheimers but it’s not the same. However, in order to get through to people the fact that Auntie is highly functioning but childlike in terms of being able to make a decision and stick with it, or be responsible for her actions, it’s easier just to say it’s a form of Alzheimers. A general summary of the family of diseases is as follows:
Having just spent a week refereeing between my Cousin, T, and my Auntie, I can see that things are worsening with Auntie but are still not at the point where she can be helped or supervised against her will.
Since frontotemporal lobe damage contains aspects involving:
– inappropriate social behavior (I was flashed daily on this trip)
– in appropriate reactions (T and I were both subject to rages the minute Auntie’s wishes were denied)
– a false sense of self and personal actions (Auntie thinks anything she wants to do is fine, even if it involves demanding Rx’s from T for maladies she doesn’t have)
– an inability to make a decision and follow-through or stick with it until completed
…it turned into a very long week for both of us. I was thrilled to have T there, though, as it helped to give us both a break so that Auntie had a largely enjoyable time, and the blow-outs were over rather quickly.
T was also able to see first-hand how out of control Auntie could be, even if she still can’t quite grasp the fact that Auntie isn’t culpable for her actions as she truly has limited recall or control over her situation. And, all while being rational enough to pass for normal, so that no one can step in to help her. Believe me, I’ve tried.
T’s feelings were hurt on a regular basis due to Auntie’s inappropriate comments, and while I did what I could to assist T in seeing reason that it’s part of the disease, it doesn’t make the words sting any less.
The biggest change that I’ve noticed from when I last spent an extended amount of time with her (2011) is that Auntie wouldn’t let anything go. If I asked her to stop, that we’d discuss something later, she reacted very childishly with verbal challenges instead of accepting that I wasn’t going to get into a dispute with her. And especially not in public, where she’d be embarrassed.
I was glad that we were able to get her to go on the trip after her travel companion cancelled, and that she was able to socialize with members of her Singles Group, however, it was clear that she was being ostracized. They divided everyone up among 4 tables, with 6 and 10 people at other tables, and us on our own. Seriously. We were at a table by ourselves, just the 3 of us. While the group organizing the dining had a reasonable excuse for the seating arrangements, it was clear that our being there meant that they were off the hook for socializing with Auntie beyond the bare minimum necessary to be cordial with a neighbor. Very high school, but she’s so far not seemed to notice. That’s one blessing with this disease and incomplete thought processes; she’s easily distracted unless she’s in a towering rage.
Into this situation comes a variety of medical and physical limitations to make it particularly challenging.
Prior to departure, Cousin T fell and suffered a concussion on Thursday, just before flying out to join us in Long Beach. While she was able to get the script for Flexeril (a muscle relaxant) prior to her departure, the pharmacy wasn’t able to fill it.
I, knowing that I would be active, had an Rx for Xopenex (an inhaler) that I put in my checked luggage (and it was confiscated, AGAIN), even though the TSA online information indicates that prescriptions should be allowed. “Should” being the key wording to notice.
However, just as they were confiscated on my trip to Australia, the inhalers were also confiscated on my trip to Mexico. While I didn’t find a note from the TSA (and my Blue M&M guy lock was cut off vs. simply opened), either they or Southwest took the inhaler. It seems I just can’t learn my lesson to keep that thing in my carry-on bag. Mexico, however, doesn’t require an Rx for many of the medications that we do in the US, so I was on the prowl to get a replacement inhaler – provided that I could find the right one that met my medical sensitivity issues.
Prior to departure, I visited my Auntie to get her checked luggage packed and into my car the evening before, so that she couldn’t change her mind 15 times, and so that we wouldn’t miss the plane due to her packing / unpacking / repacking on the morning of departure.
However, I left my Auntie’s carry-on behind, after packing up all of her medicines, and finding out that she’d run out of Aricept (a medicine that treats the cognitive problems for people with Frontotemporal Lobe Damage), and she was down to 2 pills. Auntie was unwilling to go to the emergency room to get the medicine she needed, so I let her call the shots about what she wanted to do regarding her dosages of the various Rx’s she normally takes.
FYI – she’s out of control with her meds, and I have given up fighting that battle as she no longer lives with me. When she lived in my apartment, I got her up, walking, and more physically fit, and I controlled all the medicines so that she wasn’t making her condition worse due to mis-use. We had the conversations with her doctors about whether or not she was an addict, especially since she’d tried to kill herself 3 times via overdoses before she moved in with me, and we never resolved that particular issue prior to her moving out and running away to Nevada. Stanford was wonderful for proving that she can get better, if she sticks to a schedule, however, the Frontotemporal Lobe Damage is a vicious b*tch in that it removes her impulse control and ability to see that benefit for herself. She won’t tolerate being told what to do, no matter how kindly meant.
So, I tell you all that to tell you this. I arrived to find her carry-on had changed, her purse had changed, and that my trusting her to pack her one bag with her medicines backfired as she’d changed things up between the evening departure and my morning’s arrival.
Auntie had forgotten the “extra” case of special pills she’d packed for pain control (fine by me), and we didn’t discover that until she went to take medicine the first night, and was missing that specific pill box. Not. My. Problem.
Into that background situation, though, comes my use of biofeedback and an inhaler that’s been confiscated, leaving me ONLY biofeedback to use if things got rocky with the COPD and breathing while traveling through a changing weather landscape.
And, Cousin T’s very real pain from her fall, plus the missing Flexeril.
We didn’t hit our first port until Monday, and T indicated that one of the other passengers had shared that they purchased their inhalers in Mexico as they saved lots of money. 3 inhalers were only $45 when normally that’s the price of a single unit. Good to know.
As we are wandering through Cabo San Lucas, I’m looking for my specific inhaler, and T is looking for her Flexeril. I could only find Albuteral and Ventolin (I wasn’t suffering, so I wasn’t going to give up biofeedback to replace my inhaler with a crappy substitute that had strong side effects). T couldn’t find any Flexeril, but Auntie pipes up that she could use some morphine (she had sufficient in her bag of Rx’s). A very sleazy guy out front said that it would be $130 for 30 pills of morphine, and I was pleased to see that she turned him down. Due to cost. * I certainly didn’t want to capture the attention of the local non-pharmacia drug cartels *.
The second day, though, we hit Mazatlan, and Cousin T found her Flexeril for $30. Fine. It was purchased, and Auntie pipes up, “I’ll split those with you – they are great!”. We both ignore her, as Auntie isn’t on Flexeril, and we don’t want a fight.
Getting ready for bed that night, Auntie is demanding that T hand her “some” Flexeril, and she flees the suite to come find me as there’s been a fight, and Auntie is raging because T said “no”.
Leaving T upstairs in the casino, I go down to see what’s up, only to have Auntie rage at me that she “needs” a Flexeril. Turning the tables on Auntie, I remind her the she’d had me pack her medicines, and I knew that she wasn’t on Flexeril, so there was no reason to take it. “It’s only 5 miligrams! I could take that in my sleep!”.
“Well, I don’t want to bring this up,” I remind her, “but you keep on insisting that you don’t have an addiction problem, and I think a muscle relaxant along with your other medicines is the last thing you need right now. I don’t want you taking it as it’s not in your current list of medicines.”
Deflected from T’s refusal to share, she’s now mad at me for being mean (fine), and goes to bed angry. But, it’s the LAST time she brings up medicine during the trip, which is a relief.
Off and on during the trip, though, we keep getting flashed as Auntie wears silky, shortie nighties, and doesn’t wear panties. She wouldn’t let T turn on the A/C, so the suite was either extremely hot or extremely cold as we battled through the settings. But, once I realized that I wasn’t getting through to her about the inappropriateness of seeing her lady parts (and I don’t care that, “we’re all girls!”), I was usually last in bed, and turned up the A/C to ensure that at least a sheet was used to keep decency possible.
We did what we could to have a good time despite the individual challenges, and now I’m home again with a terrible cold that should be gone in a week or two.
Mexico still isn’t my favorite place to visit (too much poverty while we idle rich loaf among the citizenry), but I’m glad that I went as the hot sun helped dry out my lungs so that I felt fantastic for 6 days of the cruise, and before we returned to damp Long Beach, CA.
The trip accomplished as much as I could have hoped. It didn’t get too ugly. And the only truly bad thing is this wonderful head cold / congestion. Well worth the price.