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HALLOWEEN AND MY SUPER FUN DATE

Halloween pumpkins

Carved pumpkins a sure sign of Halloween

I have often said the bonus part of being married to Ken is that he was a fun date. Not only was he a fun date before marriage he continued to be a fun date after marriage, but then many of our friends remained okay dates after marriage until the tube took over, turning them into the well-known couch potato. The difference between Ken, who did watch his share of ball games, and our friends was that he continued to be a fun date up until AD became a third wheel in our lives.

Our early neighborhood was mostly made up of young couples with small children, and all but a few budgets were pinched tighter than a size eight foot in a six shoe. Consequently, nights out on the town, or even a movie, were few and far between. However, to keep our social appetites fed, kids in tow, we entertained one another at our various homes taking turns hosting: we bar-b-cued, planned picnics in the parks, or at the beach, and enjoyed Sunday summer band concerts by our city’s Municipal Band – all without spending any money. In addition, a couple of nights a month the neighbors got together for a game of penny-ante with no one going home richer than he came. It was for fun not fortune as all of the winnings went into a kitty until there were enough accumulated funds for everyone’s dinner, plus a tip, which happened every year or so.

And there were parties and celebrations according to the calendar, but perhaps none so outlandish and memorable than Halloween, with costumes required. The 31st, of course, was kids’ night so the adult party was usually held on Friday or Saturday night before Trick Or Treat, but not every year. For those less willing than Ken to dress up as someone-something else was much too much to ask of some husbands on even a yearly basis.

Prior to our just-across-the-street friends Fred and Phyllis adding a family room, all parties were held in the host’s garage. Once we found their new room to be a warm and cozy place without a draft their home became the gathering place during the colder fall and winter months.

So it was that Phil donned in black shorts, black shirt, a cowboy hat and toy six shooters hanging from her hips became a female Paladin (Have Gun Will Travel, a popular TV series at the time). Laughing, she opened the door to let in the party revelers. Fred put on two arm bands, a bow tie and took his place behind his bar as the in-house bartender, which was the costume for many of the men. Ken wasn’t much different that first year matching my Roaring 20s flapper dress with gangster-looking attire, including arm bands.

Other years, and good sport that he was, he agreed twice to wear the other half of Raggedy Anne: Andy with a sailor hat and sprouting red yarn hair. Our faces matched with cherry-circled cheeks, smiling mouths and exaggerated eyes. We wore it to Fred and Phil’s second party and a few years later our duo costumes appeared at other events. There were times when I couldn’t believe he was still such a fun guy and so willing to throw caution to the wind and be just plain silly.

Several years later we had occasion to attend a fund-raiser for a local community service organization. I made Ken a white sports coat out of a piece of left-over polyester knit from years gone by, painted a black mustache on his upper lip and handed him a baton. As Xavier Cugat, he matched my Carman Miranda outfit topped off with a turban headpiece filled with an assortment of fake fruit, including a cluster of purple plastic grapes. We were a hit with friends, but didn’t win the grand prize – not even runner up – which was all right. It was a good time because I had a special evening out with my fun-date husband. I sure miss him.

Even as Ken succumbed to Alzheimer’s, I continued to decorate for the holiday, and the second year of Ken’s illness he remembered about the little ones coming for Trick or Treat. Together we put out decorations making our house look spooky without being scary. Every morning, though, I would find the pumpkins, scarecrows and the friendly, smiling ghosts on the kitchen table. More of a morning person than I wanted to be, Ken busied himself getting the house in order while I slept. “Why did you bring in all of the decorations,” I asked him. “Halloween is over,” he replied. “Let’s put this stuff away.” Explaining that the holiday wouldn’t be over for two more weeks, I asked him if he wanted to help me put the things outside. “Of course I’ll help,” he said, ready and willing to have it all in place when the costumed children came for candy.

We went through the same routine every morning until November 1, when I agreed that we could put Halloween away for another year. It would have been easier for me to just give in the first time he brought the whole array into the kitchen. But I wanted our life to be as normal as possible even if it meant doing the same job over and over, and for several years it worked.

This year in front of our house there is a seven foot happy-faced ghost – possibly a distant cousin to Casper — hovering in the midst of our juniper bushes, surrounded by candy corn lights and spider webs. Ken no longer brings in the decorations during the early morning hours. Sleeping in a hospital bed with full rails his morning activity is limited, as is his walking ability.  He isn’t even aware that Halloween is fast approaching. Actually, I doubt he notices what’s outside, much less the passing of days, one being much the same as the last. Neither is he aware of the leaves turning gold and the hint of another year soon to pass. Alzheimer’s, like a thief in the night or a mysterious, ghostly intruder has stolen away my fun date, and the demon disease didn’t even ask, “Trick or Treat?”

Originally posted 2011-10-29 18:14:30.

AND THEN THERE WERE NONE

I visited with my friend Eva this afternoon. I have mentioned Eva and her very talented musical family, originating from Hawaii, who

finances

Running out of money adds to the stress of aging and Alzheimer’s caregivers.

entertained many of us living here on the Mainland. Whenever we craved the swaying of palm trees, balmy beaches and the setting sun over the Pacific we asked them where they would be holding their next luau. Eva’s husband, Ed, and his band played the very best dancin’ music in town. Not only did they make an evening romantic in its artificial setting, the group provided authentic food, young and beautiful grass-skirted women doing a variety of Polynesian dances, and a traditional fire dance, accomplished by their oldest son as part of the grand finale. Eva taught her girls everything she knew, and when the entire group danced you would swear their hips were on springs. Everything you dreamed about being in the Islands was there during those wonderful evenings of long ago.

Eva now has Alzheimer’s, as did her husband. She is also 90 years old. It seemed that no sooner had he passed on that Eva began showing the same signs of confusion and forgetting. Yet, with the help of her youngest son Matthew, Eva, dressed in a fitted muumuu of her own design, a flower tucked behind an ear, continued to volunteer her musical talents, singing and strumming her ukulele at Senior facilities throughout the East Bay of San Francisco. Eventually, as the disease took hold, she sang her last song and her ukulele lay silent in its case.

She has been absolutely content living in her own home with Matthew, whose mental capacity had prevented him from reaching responsible adulthood. The rest of the family agreed they would be able to remain there by doing a “Reverse Mortgage.” When she was 82, the family helped her work out the details with the bank and a long-term professional caregiver, which included an iron-clad contract for her care until she was 90. The family was certain the 8-year contract would suffice, knowing that Eva was also plagued with diabetes.

Every year Eva’s children came from far and wide to help celebrate her birthday with a grand party, music supplied by friends, and tables filled with Island food. Hearing her friends sing and play the familiar music seemed to bring her confused mind back to what she loved most: music, singing, entertaining and her beloved family. Eva sang bits and pieces of songs she had known and the sounds floated through the air as many joined in to help her recapture the past. She even kicked off her shoes and danced a little. Unfortunately, we all knew that it would be forgotten the next day.

This summer Eva turned 90, and we helped her celebrate the end of an era with family and a few scattered very old friends. It also brought an end to the contract, her caregiver and her home. The house belonged to the bank. As the old book title states, “And Then There Were None.” In this case it was money. The estate was broke. The reversed mortgage had paid its last payment. So now what? When the elderly infirmed reach a point when there is no money left, and the family, scattered all over the U. S., is unable to furnish additional funds, or care for a loved one what happens?

I visited Eva today in her new home which her daughter had found several months ago, explaining the situation to the admissions director and arranging an entry date. I was pleased to see it roomy, comfortable and clean. I also appreciated the important part: the air smelled fresh. Apparently, when family funding runs out for an older patient, the state picks up the tab. It’s no longer like the 1800s when Charles Dickens wrote his sagas about people without the ability to pay being turned out to live on the streets – or were tossed into a debtor’s prison. I couldn’t imagine my frail, gray-haired friend who had given so much in time and talent to the community not to be cared for in an appropriate way. She also needs full nursing care as complications from diabetes made the amputation of one leg necessary.

Arriving at the location I rambled down two long halls before I peeked into Room 36B. Finding the bed empty I couldn’t imagine where she might be. In my return journey down the hall in search of Eva I spied her sitting in a wheel chair with a few other people – also in wheel chairs. They didn’t seem to be chatting, but at least they were company for one another. She smiled up at me, but then she smiled at everyone. I gave her a hug, asking the duty nurse if I could take her for a ride, she nodded and I wheeled Eva into a nearby room where I pulled up a chair so we could talk. It was mostly idle conversation where she could fill in the blanks. Like Ken, deep-thought communication was not likely. By filling in the blanks, she gave no wrong answers. I quietly sang some of the church songs she had taught the children many years ago. Eva managed to join me with some of the words. Later, she asked, “Did your husband come with you?” I doubt she remembered who I was much less Ken, but I took it for what it was worth and said that he hadn’t been feeling well so he stayed home. She sighed, “Oh. That’s too bad.”

Matthew comes to see her daily; the rest of her children and grandchildren come on occasion. Separated by hundreds of miles keeping in touch in a physical way is difficult. Additionally, most of her friends are gone – separated by a spirit world. Again we could say, “And Then There Were None.” Life has a way of making such gradual changes that we hardly notice until we look around and see how alone life can become. Sadly, that applies not only to money, but to family and friends as well.

I wheeled Eva back to where I had found her, reminding the duty nurse that she was back. “It’s good seeing you looking so well,” I told her, giving her another hug and a quick kiss on her cheek, “I’ll come again soon.” She smiled and said, “Thank you.”

photo courtesy of http://www.seniorliving.org/

Originally posted 2011-09-03 20:09:03.

SWEET DREAM AND THEORIES

“Is he ever Ken?’ asked Jayne.  “You know what I mean.  Is he ever the Ken you married.”

“Not really,” I answer, “but he comes close once in a while.  If he goes to bed at a decent hour, before 10, and gets a few hours of sleep before I come to bed he sometimes wakes up a little and is as close to Ken as he will ever be.  He’ll say things like, ‘Hi.  Coming to bed?’  I answer him to the affirmative, but with caution.  He could be Buddy or Mr. Hyde wanting me to leave his room.   I climb into bed and say to my husband, ‘By the way, I love you.’  He smiles and says, ‘I love you too.  Will you marry me?’  ‘We’re already married,’ I assure him.  ‘When did that happen?’ he questions.  ‘A long time ago,’ I reply asking for a kiss goodnight.  He is willing and I kiss him gently.  A real kiss.  Then he rolls over and says, ‘Goodnight.’  That’s probably as good as it gets,” I tell Jayne in answer to her question, “and it’s nice to be able to go to sleep with kind words and sweetness.”

As I lay in the dark I picture his mind and the tangled mass of nerves that cause him to be demented.  I wonder if during sleep the nerves relax a little, possibly becoming less tangled and perhaps some of the plaque covering his brain sluffs off leaving a clear, but temporary,  path for thought.   Awake I continue to think about solutions — even miracles — as my absolutely non-medical mind looks  for answers.

When my mother had Alzheimer’s I compared her with my father.  They were married nearly 70 years.  She was afflicted, he was not.  At that time they thought one might get the disease from cooking food in aluminum pots and pans.  Mama had a complete set of hammered club aluminum cookware which she had saved for faithfully until there was enough money for its purchase.  She cooked everything in those utensils, fried hamburgers on the club aluminum grill and flipped pancakes on Saturday mornings.  She had Alzheimer’s.  My father ate everything she cooked, but when he died at 90 his mind was as clear as a bell.   Nor do we three girls have signs of Alzheimer’s, but the jury is still out on that.

Then I wondered if it was water.  It seemed to me when I observed my mother’s consumption of water, she was well under what was suggested as daily water intake.    Often she would say, “Would you bring me a half glass of water.”   My sisters or I would comply.  Remembering those requests, I reasoned she wasn’t flushing her system properly.  My dad, on the other hand, drank lots of water.  Good theory, I thought to myself.  But when my uncle (my mom’s brother) died, also an Alzheimer’s victim, he wife mentioned to me that he drank water like no one she knew.  Bad theory.  We might even say, it didn’t hold water.  I suppose, though, that the pondering, the questioning, establishing theories, reading and wondering helps us, as caregivers, cope with this awesome task.  Who know, maybe one day someone will come up with a theory that ends the mystery.  We can only hope.

Originally posted 2009-02-13 05:59:26.

MORE OF THE SAME

“I got a new wallet for Christmas,” said my friend Wayne.  “Would you like my old one?”   I must have looked a little puzzled at his remark until he reminded me that I had told him about Ken and his missing wallet.  I had also mentioned how he  hides his disposable razor and toothbrush, and how I keep recycling them when they show up in odd places.  “You could recycle my old wallet,”  Wayne’s suggested.   I thought for a minute about all the stuff Ken carries in his wallet.  A few dollars, a photo copy of his I.D., some business cards, a calendar, a photo or two — nothing important — but to him it’s all important.   Then I realized he doesn’t remember what’s in his wallet, except for the money.   That’s his worry.  “I don’t have any money,” he often laments.  Just as a purse is part of being a woman, a wallet is an important part of being a man, even if all he does is count the money.    Having back-up wallets would eliminate a lot of Ken’s misery at finding his lost.   Thanks Wayne, great idea.  I’ll check around and see if others might have an old wallet not in use to add to the supply.

While I’m talking about hiding, I suppose I have become as guilty as Ken.  With me, I hide things from Ken — most importantly — keys.  A few times I have been careless and he once took the truck for a ride.  Other times, if he is Mr. Hyde or Buddy, he will hide my keys from me because they belong to either his wife or his mother.    Therefore, I have become fanatic about putting them in their own hiding place.  Not a convenient spot, but definitely an out-of-sight place.

However, I hide other things as well, including dishes.  Actually, dirty dishes.  I haven’t always hidden dishes, but lately it’s become a necessity.  Shortly after he retired we came to an understanding that I wasn’t going to be his servant and he wasn’t going to be Lord of The Manor.  His household job was to keep the kitchen clean and that included doing the dishes.  If I cooked, he had to clean up.  He agreed and became a rather good tender of the kitchen.   Now, with his Alzheimer’s, I would rather he didn’t help in the kitchen, but I must have taught him well, because somewhere in his confusion, after a meal he insists, “I’ll do the dishes.”

With two years of lower than normal rainfall, the San Francisco Bay Area, at least our water district, has imposed water rationing.   Since his dementia, Ken washes  everything under hot running water, allowing the water to run and run and run much to my exasperation.  I have watched him rinse a glass for a minute and a half and all it contained was water.  He becomes very angry with me if I suggest, “Just put it in the dishwasher.”   “NO!” he growls, “This is my house!  Don’t tell me  what to do!  And this glass is clean.”    Or plate or pan or whatever.  So I try to get to the sink first and hide the dishes when he isn’t looking because I have only seconds to make them disappear. 

While I am cooking I fill a bowl with tools and cups, or other things I’ve used and shove them into the oven or into the microwave.  I’ve even carried plates unrinsed and unscraped into the nearby bedroom just to get them out of his sight.  Our granddaughter, Kristina, is staying with us for a while.   Finding a few dishes in her bedroom she simply stated, “Grandma,  I know you have a logical explanation about the dirty dishes on the desk so I’m not even going to ask.”  “Thank you, Kristina,” I answered.  “It’s complicated.”

Originally posted 2009-02-07 06:29:31.

LIVING IN THEIR COMFORT ZONE

Romick Family 68

The Romick family, long before anyone thought of Alzheimer’s.

August 11, 2012 — So much has been written about family participation in helping with an Alzheimer’s patient.  From what I have read the percentage of those willing to help and those willing to watch is way out of balance.  I don’t have the statistics; furthermore I doubt there are any truly accurate stats because involvement in caregiving is such a personal family issue.  However, I would venture to say that the numbers of those willing to watch are far greater than those willing to help.

FAMILY PARTICIPATION

Perhaps, the approach is all wrong from the beginning.  One article I read was a synopsis of a study done by Steven Zarit, a professor and head of the Department of Human Development and Family Studies at Penn State.  The study’s main focus was communication between the family and the person with dementia.  This, I imagine, would be done soon after diagnosis and when the victim was able to communicate his or her wishes.  The study group’s consensus was that communication is either poor or non-existent between family members and the relative suffering from dementia or Alzheimer’s disease; the problem mainly resulting from a difference in understanding the core values held by everyone, including the victim, about giving and receiving care:  The core values being autonomy, burden, control, family and safety. Continue reading

Originally posted 2012-08-11 20:14:32.

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