Prologue:
My in-laws are my wife's mother and her second husband (lets call them Ally and Al).
Ally's first husband died and she moved south. A true Snowbird widow. Lived with her sister in a decently presentable trailer park near Clearwater. Ally doesn't do reality too well. Rules are for other people, not for nice little old Anglo-Saxon ladies like her. She can be so charming (think spitting image of Queen Elizabeth) that she gets away with more than you can believe.
Al was with the 101st in WWII. Four or five jumps behind enemy lines. Immensely proud of his service, but hates to talk about what he did. Probably tons of barely-diagnosed PTSD (at least the VA doc thought so). No treatment. Never married before meeting Ally. Held small town blue collar jobs in Pennsylvania since the war. Has Medicare out the wazoo.
Ally met Al 25 years ago in the trailer park. They married immediately. Happy as clams. No one else need apply. Visits up to 3hrs were welcome. Up to 2 days tolerated if you helped redecorate. After that, hit the road Jack. Totally self-contained and, to be honest, self-absorbed. They went dancing twice a week. They played bingo. She wore hot pink jump suits and he wore shirts to match her outfit of the day. They traded in their Cadillac every 2 years and drove it about 1000 miles/year.
15 years ago, Ally had a massive stroke. She was 75 and barely survived. Paralysis on most of left side. She could walk (just barely) with help, a cane and a brace. Left arm useless. Left eye blind. Partial vision in right eye. Huge reduction in quality of life. She was always pretty self-centered. Now she was dependent and demanding.
Al cared for her like a Mother Theresa. Attentive 24 hrs a day. Calls for 'Al, Al' went out 50 to 100 times a day. He never complained. I think it gave him a mission in life. The arrangement worked for 10 years, but in their mid-80s, it broke down. Ally became less capable and Al grew weaker. Complaints went up, care went down. Plus, their memory and decision-making started to go. They made expensive mistakes. Ally moved her money around to get 0.5% more interest, and lost thousands in fees. Then she invested most of it in tech stocks at the peak of the dot com bubble.
5 years ago, they were in dire straits. Al couldn't cope. They phoned and begged for help. We scurried around to find a place for them to live near us. Hit paydirt. Holiday Retirement Corp. is a national chain of 250+ retirement residences. Absolutely top drawer and amazingly clean, bright and reasonably priced. Bush's mother-in-law lives in one. Gorgeous one-bedroom apt. with linen service, 3 (good) meals/day in a bright dining room, and great activities and amenities for well under $2000/mo. total for the both of them. While there is no medical or custodial care in their service, some residents contract privately with local, self-employed, unaccredited caregivers. They could provide some relief and freedom for Al for a few hundred dollars per month. Ally and Al could afford it with their combined pensions - with money to spare. The residence is a 5 min walk from our home.
They sold the trailer and moved. My wife visited every day. I dropped by once a week. Ideal, you say? For about a year. Then all hell broke loose.
They demanded to go back to the trailer park in Florida. We couldn't understand why at the time. They were adamant. They bought a trailer over the phone, packed up their belongings, and took 2 days to drive the Caddy 'back home'. It cost $5000 to move their furniture, business affairs and 'redecorate'.
8 months later, another call of desperation. Al had an emergency quadruple bypass and was in hospital. Typically, Al and Ally had made no arrangement for Ally's care. Ally only called us after the fact. My sister-in-law flew in and was appalled. Her husband left his senior partner's job for a week to fly in, pack Ally up and bring her back to our town. Al wouldn't leave Florida, but was far too weak to care for her. We moved Ally to an assisted living residence that was also close to our house. She hated it. She phoned Al every day. 3 months later, without telling us, she bought an airline ticket, talked the activities director from the earlier retirement residence to drive her to the airport, flew to Tampa, got a taxi and showed up on his doorstep and moved back in. Remember this is the paralyzed stroke victim. We shipped her furniture and belongings back to Florida.
3 months later, she called again in dire straits. This time Al came back with her. We rented another apartment at that great retirement residence, bought more furniture and redecorated. Ally left the deed to the trailer in the hands of a semi-conman who promised to sell it (for 50% of its value - guaranteed). It never sold, but the monthly fees added up.
That lasted 8 months. Then Al couldn't take it anymore. He left Ally and drove the Caddy back to the trailer in Florida to live by himself. We retrieved the title to the trailer eventually. We thought that was the end game. My wife visited Ally every day and tried to get her settled. I called Al every week or so to encourage him to remain active ("have you been to the Legion? have you been to the track?").
Ally lived in the retirement residence (that same great one) in a studio apartment for the next year. She paid about $1400/mo and could almost live on her pension. Her savings were dwindling, but slowly. They would hold out 4 or 5 years. She did insist on moving to a new apartment because she preferred the one across the hall. My wife visited every day and the informal custodial care network gave her tremendous care. She was clean, healthier than in years, and well-fed. But she was real mad at Al and wanted him back. She called him 5 to 10 times a day to beg him to return. So he did.
We found a 1 bedroom apartment at the retirement residence and moved them back in. More furniture. My wife sold the trailer over the phone at a loss to save the monthly fees. They still had enough income to afford their new lifestyle.
5 months and guess what? They bought another trailer in Florida over the phone. The park manager swore to us that she wouldn't sell them one, but legally, she couldn't (or wouldn't) refuse when they insisted. More dwindling savings into another crappy trailer.
We explored every avenue to prevent the move. We spoke to lawyers, their doctor, local experts on eldercare, social workers, ... you name it. The answer was always the same. My wife has several powers of attorney (financial, living will, etc.), but not enough to dictate their behavior. We couldn't have them declared incompetent because they can be perfectly lucid for any given half hour. Even if we could have proven their irrationality, both of them would have to be declared incompetent together, because each, as a legal spouse, would override anyone else. We were stymied. They packed the Caddy and off they went. We shipped their furniture with more of their dwindling $.
Understanding
Call us slow. About this time, we finally began to grasp what they wanted. We think it comes in three parts:
- They are tremendously restless (especially Ally). The grass is always greener wherever they are not. The current glass is always half empty and they are convinced that moving will fix everything.
- Ally wants to die. She says so constantly. The past 15 years have been very hard. She is trapped in a broken, nearly useless body. She is tired. She desperately wants relief. No medicine on earth will return the use of her arm and leg or the sight of her eye. She is nearly 90 and she's had enough.
- Al doesn't know he's failing, but he is. He can barely walk 20 feet at a time. He can't take stress and he can't face life alone. He needs someone nearby, but Ally is the only one he will allow.
Bottom line, they both want to hide away in their own private, perfect nest in the trailer park where they were married, lived and loved. Neither will permit homecare workers to help. We hired a highly regarded service. They wouldn't accept it. Ally was often unkempt. Didn't matter. They often fought like cats and dogs. Didn't matter. Ally made relentless demands. Didn't matter. Al drank gin and tonic, tired easily and slept for hours and watched sports and drove his Caddy to the store to pick up prescriptions and food. Didn't matter. They didn't want help. They didn't want to be cared for. They wanted to settle in and live or die on their own terms.
We finally came to terms with their needs. We gave up and left them alone. My wife still called her mother every day - but just maintain contact, not to manage her. I spoke to Al occasionally. They seemed reasonably happy. Two months ago, my wife and son flew in from different cities to spend a few days just visiting and, as always, redecorating. It was a good visit. We settled in to wait.
Catastrophe
Al had a car accident two days before Thanksgiving. He was driving to the pharmacy to get Ally's Darvocet. He totalled the Caddy and hurt the driver and passenger in the oncoming car. He was in the wrong. He had just had cataract surgery in one eye. The other wasn't done yet. Might have been a factor. He might also have been drunk. Al is likely to be charged and the victims are suing. His insurance company will likely take a big hit. Police won't give us the details. Its none of our business.
An ambulance took Al to the emergency. He was bruised and they worried about a neck fracture. They kept him for several days for tests and observation. Ally was left all alone. No one called us. The homecare service tried to step up their care, but it was Thanksgiving. All their staff were on holidays or already busy. The hospital sent the police to investigate. The officer that found Ally was appalled. She ordered Ally into a nursing home. When Al was released from hospital, they took him to join her. They held him there until a neurosurgeon cleared his neck injury. Three neurosurgeons accepted then cancelled when they found out he was in a litigation. So he stayed longer. He was finally cleared a few days ago, but he's still there because of Ally. Al's stay in the nursing home is covered by medicare. Ally's is eating up their savings at the rate of $220/day. They both hate the nursing home with a pure passion. Al calls it "prison".
Police and social workers won't release Ally from the nursing home until the trailer is "safe". That means a safety inspection, building modifications and 24 hour skilled nursing care. Florida won't allow people in Ally's condition to live without constant skilled attention. Having Al in the next bed, a diaper on at night and someone on fast-response call won't cut it. How much would that cost? Ally phoned us and asked if she could authorize $22/hr ($16,000/month) for the skilled nurse. We said no. Their remaining savings might cover a week or two - maybe. The collision insurance on the car might add another week or so - maybe. Then Ally would become a ward of the state. She would go into another nursing home, probably a lot worse. They would give her just enough care to keep her alive - possibly for a long time. She doesn't grasp it, but that's her nightmare scenario.
We can provide an excellent care standard in our town for about $2500/mo, including 24 custodial hour care, great food and lodging. Together, they have just enough pension income. We would help close any small gap, but we don't have the personal resources for much more.
Conundrum
- Ally and Al desperately want to go back to their nest.
- If they do, Florida's care standards will wipe out their savings and then toss one or both into a state-run nursing home.
- We can arrange a high-quality nest at an affordable price where we live.
- Will Ally and Al agree to come to our town, or will they desperately try to return to their nest?
- How can we even get them back to our town? We're afraid to drive them. It will take two days and we don't know if either can take that right now. They could fly, but what if they pitch a fit at the airport?
We're trying to figure it out as we speak. My wife is going at New Years to try to bring them back. I would go, but she doesn't think I will be able to do much to help. Our business faces a critical opportunity on Jan 2 and I have to be there. There are other people's futures at stake besides Ally and Al's.
Conclusion
I didn't write this for sympathy. My wife would own the copyright on that if she ever chose to exercise it.
I wrote it because the story of Ally and Al isn't rare. Everyone behaves differently as their mind and body give out. The real challenge is to society at large to cope with individual needs. The framers of legislation in Florida weren't bad people. They wanted to prevent elder abuse. But with so many highly individualized behaviors, one size can never fit all. When you add in the immense mobility that American society enjoys, the problem's a brute.
The irony is that if Ally and Al lived in a village in Peru or a small town in Romania, it would be so much easier. Relocating to another state wouldn't be an issue. Neighbors would know to leave them alone, except for the odd meal or help. They could nest and live and die - on their own terms.
Minor Updates:
Just some omitted facts that I spotted after reading the wonderful comments. Can't hurt to add them.
- Ally always claims she doesn't remember any of the previous disasters. She swears we are lying. On the other hand, she won all of the bridge tournaments at the residence up to her latest departure (6 mo ago). When my son and wife visited 2 months ago, she beat her national merit scholar grandson 6 out of 7 games in Scrabble. Makes one wonder ... the brain is an interesting organ.
- In this morning's phone call, Ally was fairly receptive. Her view switches from angry to accepting every day. Last week the calls were running 2:1 angry and petulant. Now they seem to be running 2:1 accepting. Go Ally!
