One widow’s mother-in-law story, part 4


When – someday, if I’m ever able – I tell Gavin’s cancer story, it will be suspenseful and satisfying. It will have pacing, contain a gamut of human emotions, and the two leading characters will be transformed before one melts away into the ether. The story is physical and spiritual and illuminated by the small soul of our first, only, treasured child.

But in Audrey’s story, the meaty part is pretty boring. There’s no need for me to walk you through how the cousin’s trip coincided with Audrey’s second fall, and how we moved her at last into a facility with variable choices in assisted living nearby, where Shorty and I could visit often.

What is worth noting, since I have the privilege of being storyteller here, is the conflicts between people trying to “help” the elderly and the official powers that preserve their right and their independence. When I used to do martial arts, one of my mentors told me, “sometimes the best way to protect someone is to break their arm.” At least, an injury removes them from the action and prevents more serious and collateral damage. For twenty years I didn’t know how true this was.

But caring for Audrey – even caring about her and knowing her limits – as she approached 90 and senility was all about determining which pain would be greater and how to see the big picture. And doctors, EMTs, governments got in the way of my protecting her interests as I perceived them. Maybe my self interest was in the way, too, but as I said, I know the outcome and I think history vindicated my judgments.

First, doctors. I was appalled that her primary care doctor couldn’t provide any system to help her keep track of her prescriptions. How hard would it be to write them all down on one sheet of paper so she could check whether they were all filled and how many to take? It’s not protocol, ma’am. I was sick of hearing it during cancer treatment and I was even more frustrated coping with Audrey.

Second, more doctors. When Audrey fell at the corner store buying Nutter Butters to share with my severely peanut-allergic child, she was taken to the hospital where Gavin had been for his last downward spiral. While she was there, her credit card was stolen from her wallet. I was her only contact. I insisted that the doctor keep her in hospital until her care manager and I could arrange her entire move to a more supervised setting. I told him that he’d be responsible for her early death if he sent her back home unsupervised. I told him she wasn’t capable of taking her medications and didn’t eat. He stuck to the symptoms he could observe (she fooled his dementia test, too, as long as they administered it before sundown – they diagnosed her with “sundowning” without actually recognizing it as part of dementia!) and sent her home after 2 days.

Third, the EMTs. One morning when she was extremely confused and unable to handle her phone, I called 911 because I was sure she’d collapsed. When the emergency staff arrived, they refused to take her to the hospital because she said she hadn’t eaten yet and had collapsed from hunger. I told them about her dementia but they listened to her (she was disoriented, but didn’t want to go to the hospital). I told them they were making a big mistake and walked out. The EMTs made her some toast, which she insisted would fix everything.

These two failures were followed within a few days by a second serious fall outside. (I think I mentioned my oracular powers?) This time, a different doctor at a different hospital listened to me and arranged for her to be discharged to a rehab facility for a vague and extended period. During this time, we were able to sabotage everything she wanted and move her into a care situation that she desperately needed. A hostile takeover of her entire life, this represented the hardest love and best care I’ve ever given.

Fourth, the government. I talked to our MVA, state and county officials, and professional senior care managers. There’s virtually no way to take away a senior’s drivers’ license unless they have multiple convictions for reckless driving. You might say “until they kill someone,” but actually, it would take a few fatalities, unless there was evidence they were drinking, for the state to act. I was advised to steal her keys, lie and cheat on my own time, but there was no officialdom that would support me if she protested. Even the insurance company was bound to keep insuring her.

Every day, she put at the top of her to-do list, scrawled on an envelope, “buy new car,” but fortunately she proved herself unable to make it to any dealership, even in a cab (remember she’d totaled her car, and I took my loaner back). She was de facto restrained from driving but when she died, a year and a half later, with advanced dementia, she still had a perfectly good driver’s license.

Fighting a stage IV cancer for two years with my beloved, I was used to living in “you and me against the world” mode, and I’m by nature a bit contrarian, occasionally to the point of being oppositional. So it was easy for me to get pissed at authority figures who were only doing their job. But in caring for someone, “doing a job” doesn’t really do the job.

In my bizarre situation, not really obligated to care for her but doing so anyway, there was no way for things to work well. A family member would have lied and cheated, someone who didn’t have a job and a toddler might have been more aggressive in watching her, but me? I was stuck in limbo between nothing and everything and I couldn’t handle one bit of it, and wouldn’t let go.

Until, thank heaven, the cousin took over.

(to be continued)

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annie said...

Dementia is a frustrating thing for caregivers. My late husband really didn't look sick but up close it was hard to deny that there was something wrong. He was unsteady and he didn't always make sense. He also was extremely self-focused and his moods swung like chimes on a blustery day.

I actually had to stand between him a police officer once because the officer wouldn't believe me when I told him that Will had dementia, was nearly blind and couldn't possibly be a danger b/c he had no idea what was going on. The officer had actually warned my demented dying husband to "get himself under control" and "stay where you are". Will paced frantically when he was upset, lopsided and in constant danger of falling.

And that was just one incident.

I couldn't have possibly done a second care-giving stint after my husband died. I was tapped out. Normal life and parenting was job enough.

I know how "you are a strong person" tends to go over like a lead ballon, but you certainly were and not everyone could have done what you did for your MIL - or would have wanted to had they been able. You are a special person.

Phyllis Blickensderfer said...

My husband was adopted. Not until he was in his 40's was he reunited with his birth family -- to find that dementia can be tracked in one of his mother's line back into the late 1500's. Not the best thing to discover, but it helped to understand when his mother was diagnosed with 'sundowners.' I now much, much more that will help should my Beloved Husband survive the myasthenia gravis diagnosis of last August. Finding doctors who treat the person, not the disease is a blessing. They do occur, but not across the board.

Supa Dupa Fresh said...

Phyllis, thank you for your comment. I'm sorry for your husband's diagnosis. Fortunately there is much better support for caregivers now than there was in 2004, please write to me direct if you'd like me to share some resources on this. Both with Gavin and with his mother, it would have helped me a huge amount.
Please take good care of yourself.

Amy said...

What wonderful, loving care you gave her.

In my state (California) people have to re-pass a test to keep their driver's license if they are over 70 and have been involved in two crashes in a year. The only reason this law (which doesn't go nearly far enough) was proposed and passed was that it was in California that an 86-year-old man drove onto the Santa Monica pedestrians-only promenade and killed 10 people. His family said they knew he shouldn't be driving. He said he hit the gas instead of the brake, then tried to brake but it didn't work. The most likely explanation, since witnesses said his brake lights didn't go on, is that he was stomping on the accelerator for all he was worth.

You may have saved lives by keeping your mother-in-law off the road.


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