family support

THE DEMENTIA UMBRELLA

 Several years ago, when the husband of my friend, Madalyn, was well into severe Alzheimer’s and Ken’s disease just beginning, the two of us went to several support group meetings.   The speaker one evening was a health-care professional; the title of her presentation was dementia.  How often both Madalyn and I had heard the word interspersed with Alzheimer’s, making us wonder if our husbands had Alzheimer’s or were they demented, having dementia.  Were the guidelines established enough that we could tell one disease from another?

“Dementia,” the speaker explained, “is the umbrella, and under that umbrella the medical community is placing what they believe to be related diseases, even though some people are diagnosed as having dementia.”  She went on to explain dementia as a group of symptoms caused by changes in brain function, or a decline in cognition.  Though defined, it still left us a bit baffled.  However, with so little known about the actual workings of a diseased brain and other neurological disorders, dementia as an umbrella seemed to make sense, especially when the speaker placed Alzheimer’s, Parkinson’s, Lou Gehrig’s disease (ALS) and MS (multiple sclerosis) under the umbrella.  No doubt she included other diseases lesser known to Madalyn and me totalling more than 75 in all, but the link placing them under one umbrella made good sense.  Whether the dementia symptoms may later change and develop into any of the encompassed diseases wasn’t a part of her topic, nor am I a medical person who could make such a determination, but it would seem reasonable to presume that the answer could be “yes.”

Over these past six years, as I have journeyed with Ken into the fog of Alzheimer’s it seems as if the cases under the umbrella are becoming almost epidemic.  I often hear people say, “It’s because everyone is living longer.”  That observation conjures up another burning question.  Is it inevitable that living longer will bring the majority of four score and younger people into the hopelessness of brain disease?

When Ken and I first married we were best friends with three other couples.  We were not a group, but they were best friends, nonetheless, with us, and we have kept in touch with all of them through the years.  Today, two of the women and two of the men are under the umbrella diagnosed with short-term memory loss, two with Alzheimer’s and one with dementia.  All of the disorders began somewhere in their mid to late 70s.  Yet, with our large circle of friends and acquaintances I have also observed early-onset of Alzheimer’s and Parkinson’s, and one death from ALS.

The mother of Barbara, my friend with short-term memory loss, was sent off to a state mental hospital in her mid 50s with what they diagnosed as brain deterioration.  Was it actually early-onset Alzheimer’s?  Earl, who has dementia, is the son of man who suffered most of his life with severe Parkinson’s.  Our  daughter, Debbie, had a favorite beau during their teen years who tumbled dramatically into full-blown Parkinson’s in his early 30s, as did celebrity Michael J. Fox.

With the power of his celebrity Fox brought world-attention, and hopefully more research, to his disease.  Of course, the 40th president of the United States, Ronald Reagan, brought the same extraordinary attention to Alzheimer’s during his 10-year battle with the disease, as did movie great Charlton Heston.  People no longer talk about a second childhood, senility, brain deterioration or sun-downer’s disease.  These umbrella diseases — with people of all ages becoming victims — are no longer swept under the carpet to be ignored as just some old folks’ ailment.

If there is a question here it would be:  Will there be a breakthrough in finding a cure, or at least management for these dreadful diseases?  If so, when? And, if a reliable treatment for AIDS was found in a relatively short period of time, what’s holding up research for The Dementia Umbrella?   According to a recent paper from Johns Hopkins the future looks alarming for 1 out of 2 people who will get Alzheimer’s if they live long enough.  That’s 50 percent.  Research and solutions are musts for the coming generations.

Presently, there are no real answers, but there are some quiet observations.  In watching my friends and reading about Fox, Reagan, Heston and others, their spouses are incredible as they walk with, sit by, and worry about those they love.  Collectively, they have all remained devoted which is not only inspirational, but encouraging to all of us caregivers traveling that same unfamiliar path.  The battle which goes on under The Dementia Umbrella can bring out the worst in people or it can bring out the best.  I don’t know everyone struggling under this covering, but those I see, read about and know are phenomenal human beings. Kudos to these caregivers everywhere.

Originally posted 2010-08-30 02:10:43.

ONE SIMPLE PHONE CALL

Changes in our lives can come slowly, or they may hit us like a ton of bricks. A severe accident can cause one of those changes. One poor decision by one person alters lives forever. My name is Deborah Schultz and I am Ann Romick’s daughter. I had just sat down to work on some uninterrupted late night web marketing, when my cell phone displayed a phone call with a hidden number. I generally make it a policy not to answer 800 or blocked numbers, but this was almost 10:30 at night, and for some reason it just seemed urgent.

“Hi Debbie, said my sister-in-law, I have some bad news.”

One simple phone call and a shattering message. My parents had been in a horrible car accident on the way home from grocery shopping.  Sideswiped by a drunk driver their SUV spun in a three quarter circle.  My dad was okay they thought, but my mom — broken neck vertebrae, pressing on arteries, possible stroke. How do you feel when you are 800 miles away with information like that? Shocked, frustrated, totally helpless. Immediately, I wanted my husband to drive me to the airport, but with a 16-year-old dependent niece living with us, several rental units and important doctors appointments,  it wasn’t possible. My siblings told me they had things under control, and to sit tight. I did call my 21-year-old daughter who happened to be driving by the hospital at the time and she rushed over for me. Again, the news was not reassuring, especially the descriptions of my Alzheimer’s father and his response to the disorientation and chaos, and the critical condition of my mother, his only caregiver.  It was a sleepless night.

The next day was a little more reassuring. There was no paralysis, no concern of stroke, but her lungs were filling because of her broken ribs, while my father, with only minor injuries was being transferred to another hospital for further tests and observation.

The prognosis for my parent’s recovery proved to be excellent, but the disruption in our lives is immeasurable. My brother’s and sister and their spouses keep a constant vigil with a family member with her at all times in ICU. My father spent five days in a hospital, back on the medications that his doctor had prescribed. Those same medications my mother had just taken from him because of the side affects she discussed in her last blog.

Except for one brother, all members of my family are self-employed entrepreneurs. We don’t get leaves of absence, or emergency family leave. We put aside the jobs that provide for us and plunge head first into what is most important: our family. Our personal lives are disrupted and our spouses make do, single-handedly running our team effort with faith that it will all work out, and so far it always has.

For the time being, and with lots of support, I have assumed the role of caregiver for my father.  Determined to keep my father at home for as long as possible, my mother has spent too much of her life working toward that goal for us not to continue supporting her.  His father, my grandfather, was placed in a care facility when the time became evident. He ended up having a heart attack three days later because a worker at the facility manhandled him into taking a shower. We do not want to go there, but how long we can keep up home care under the present circumstances remains to be seen. We know that before the accident, my father walked and fed and dressed himself and was generally in good physical health. A five-day stay in the hospital, with a catheter for hospital convenience, has resulted in a bad urinary track infection, a weakness in his legs that now requires a walker, and a new need for Depends. Will his condition improve? We don’t know, but we had to insist that he be checked out and finish his recovery at home. Who knows how much sicker he would have become had we left him in the hospital.
What caused all of this expense, pain and disruption? Selfishness. Someone sat on a bar stool and drank all that Monday afternoon. Someone didn’t think it would be a big deal to drive even though their blood alcohol level was way beyond legal. Someone didn’t consider how one bad decision could have such enormous repercussions.
My mother’s loving ability to care for her beloved husband has probably ended. But this blog will continue to go on, perhaps not about caregiving and Alzheimer’s, but about the exquisite stories of family and love which she will continue to write. Her advice comes from years of living, through both the good and the bad.  Even now she remains compassionate, caring, cheerful and determined.  Still in ICU she ran her fingers over an imaginary keyboard to make sure they still worked.   And her brain is as sharp as ever. Though she may need to rest and heal for a while as recovery continues, she will be back.

Originally posted 2010-02-28 08:18:22.

THE HIGHEST OF HONORS

Most of the people with whom Ken and I have shared our adult lives made the choice, following marriage, to have children — lots of them.   The trend, which was very popular after World War II and the Korean Conflict was to have large families.  As part of that trend, we are the parents of five offspring:  two girls and three boys — stragglers of the “Baby Boomer Generation.”   Our years of rearing children were the best years of our lives, nothing out of the ordinary: normal, I would say.  We did PTA, Dads’ Club, Little League, Scouts — boy and girl — church with all of its youth programs and activities, enjoyed their friends: good and tolerated the bad; we endured sick days, happy days, school days, vacation days, holidays and rebel days.  We angst through the 60s and worried about drugs, hippies and all the ramifications that went with young people coming of age during such a traumatic, often radical, period of history and being faced with choices where their lives could have been damaged, ruined or even claimed by death, but they survived and so did we.

The growing years went by in a blur as if we had pushed the fast-forward button of a VCR.  Some of our brood went to college, others did not, but in any event they all turned out pretty much okay, and then as young adults they picked up their lives and went their chosen way.  Normal and happy:  that’s what we wanted.  Yet as each one left the nest they left an empty spot in our hearts.  For most of the years which followed, they have lived close by with their growing families, and we consider that a blessing.  While we are no longer the strong beacon of influence we hoped to have been, we treasure  the grown-up relationship we have with all of them.

Parenting, however, is still such a constant, and while Ken and I had rediscovered “us” and had moved on into our retirement years, we wanted that safety net to remain for these grown children: the knowledge that we were and are still “there” for them — in every way.   It isn’t because they really “needed” us, it’s their knowing that counts.  I’ve often compared us, “mom and dad,” (other moms and dads as well) to the stove and refrigerator — even the washer and dryer — the house, the car — home; “there,” we’re just “there.”   We are part of that security, that solidarity which they have known “always,” and will, hopefully, remember in a good and loving and “normal” way.

So what do we, as parents, expect in return?   Actually nothing, but cards and perhaps a few flowers, or some other small token of love on birthdays, Mothers’ and Fathers’ Day; love and respect and occasional phone calls — and visits.  But accolades?  I don’t think so, believing myself and Ken to be ordinary people. Yet, to my surprise my daughter, Debbie, nominated me for “Caregiver of The Year” through a website out of Chicago: http://www.caregiving.com with Diane Brown as the host of the site, and her own internet/radio program.  I am one of the five recipients to receive the award and I am honored and humbled.  When I read Debbie’s letter of nomination, and her description of what she has observed over the years, I cried.   Such a high compliment to receive:  for her to see me not only as her mother, but as a wife, a person — an individual in my own right — someone who has had a life and has, possibly, made some kind of contribution to mankind and the world in which we all live, and for her to want me honored is an honor in itself.  The following is her letter of nomination:

“I am writing about my father’s caregiver, my mother.  Given all the other service-oriented activities she has been part of:  PTA, Scouts, Little League, and church, this would not be out of the ordinary, but my father is the fourth family member with Alzheimer’s that she has given or directly supervised their in-home care.

“Her first experience with the disease came with my father’s parents.  I cannot remember when they were stricken, or what their ages were.  I remember their 50th wedding anniversary; my grandmother was 68, and my grandfather 12 years older.  They both seemed fine at the event, but shortly after the celebration, my mother began to make more and more visits to their home.  They lived about 30 miles away and my mother made several trips a month to take them to the doctor, for haircuts, or to make sure they had food in their pantry and refrigerator.  My father’s sister lived a few blocks away from them, but because she was a single mother and worked full-time, she had little time left to spare.

“My mother was truly the sandwich generation, as I had three younger brother’s still living at home.  I know that she was devoted to home and child care, but she was also realizing some success as a freelance writer.  However,  by unspoken agreement between my father, his sister and herself  it was a given, because she didn’t “work,” the responsibility of caring for my father’s aging parents would belong to her.  Even though the current social climate touted women’s rights, liberation and the importance of career, my mother’s dreams of being a writer were squeezed between appointments, errands and all the other aspects of her busy life and giving nature.  She had no time to think about whether she was liberated.

“With the death of my paternal grandparents, the needs of her own parents soon crept in and once again began to take over her life.  When her own mother developed the same symptoms that her in-laws had shown, she moved them from their country home, which was two hours away, to another home just a mile from her own.  Her older sisters lived two states away, and once again, the burden of care for their mother fell on mom’s shoulders.  Any spare time was spent in the busyness, stress and exhaustion of caring for another Alzheimer’s patient, as well as making sure all of her father’s health needs were met. Sound as a long-ago dollar he never had dementia.  As her mother’s condition worsened, they tried a care facility.  Its effects were devastating not only to her mother, but also to her father who could not handle the toll the confusion and foreign surroundings brought on his wife which only added to his own despair.  Luckily my mother found a dear friend who took over much of the burden of caring for the older couple the last few years of their lives.  Despite the help, mom was very much involved in their care.  She was continually at their home doing what she could and again, the sole driver for appointments and outings, which continued until the elderly couple passed.

“Following a few years respite, the ugly signs of Alzheimer’s appeared in our family once again, this time afflicting my father.  After her experience with her mother and in-laws, one might think she would be an expert, but not so.  Everyone is different and seeing your parents change into people you no longer knew, cannot be the same as having your beloved spouse of almost 60 years, not only not recognize you, but demand that you leave your own home.

“My mother has risen to this challenge with fortitude, determination and a sense of humor.  She has become somewhat of an expert on the holistic treatment of this disease, and in a sense, she has won.  Whether it is the day-to-day battle or the full war, only time will tell.  After six years my father continues to live at home.  Each day he takes a handful of pills and vitamins that may have allowed him to retain enough of his personality to care for his physical needs, and for the most part functions as a young boy in their home, with small moments of time as my father.  The war will be over when he is taken to his Heavenly home.  Hopefully that will happen sometime in his sleep and then my mother will be victorious, as she has finished this last act of marital service and love.  I cannot imagine the emotional pain this has wrought on her, and the torture she has felt as she has lost her soul mate, bit by bit.  Her perseverance and optimism are amazing.  Her example reminds me that we are never given more than we can handle.  And through this all, she has developed her talents and her career.  The disease and her life have given her a story which she shares in a blog.  Eventually there will be a book — an example of courage and service for other caregivers and her legacy of service and love to her family.”

Originally posted 2010-01-28 05:59:25.

WHAT AM I? INVISIBLE?

care-giving granddaughter and grandfather with alzheimers

Helping Grandma care for Grandpa who suffered from severe Alzheimer’s was a challenge for Kristina, but one she learned to handle well.

November 28, 2015 — Whether while I’m caregiving or during other times in my life I’ve wondered if I was invisible. Waiting in line, perhaps in the bank and or while shopping during the holidays, when they open registers or windows with someone directing others to step forward in what should be my place, and I just keep waiting,  It’s then that I might ask another person patiently waiting behind me  if he/she can see me because I am certain I must be invisible. Then the stranger assures me that I’m not made of smoke and mirrors. If you are a caregiver, however, you may have that feeling much of the time. In a world filled with busy people who appear to have important things to do, caregivers are often overlooked to the point of feeling invisible.


 

RECOGNITION AND LEGION

In the November 2015 issue of AARP Magazine, a team of photographers and writers have made a presentation titled “A Day In The Life of The American Caregiver.” The article explains how when a catastrophic injury or shocking diagnosis occurs, the person who steps up to help is given a new title. Like it or not, that person becomes a caregiver.  While no one competes for the title and may not even consider themselves in that role they have become a caregiver. To most of us helping is just a part of life, making small contributions in a quiet and simple manner, this silent army is often overlooked.

Stats tell it all. In the United States about 40 million people provide unpaid care to an ill or disabled adult. Furthermore, these angels of mercy have been doing this service for five years or longer, more often than not they are doing it alone.

The AARP team visited caregivers of eight families across the nation, who provide care for a loved one. Stats tell even more: 16.6% of Americans provide unpaid care that would cost $470 billion annually. The amount of dollars not spent is staggering, but these caregiving duties continue day after day for these unpaid angels.  One caregiver from Wisconsin cares for both of her parents who have been divorced for more than 40 years. Under their daughter’s devoted care the two once-sparing partners get along just fine. She tells the world that it has been a period of forgiveness and healing That’s one of the joys derived when one is a caregiver.

In Palm Springs, California one woman cares for her partner following a stroke. “I live with a child some days,” she says. In Florida a woman and her husband rented a room to a former choreographer. The three became close friends, so close that the husband kidded that he wanted to adopt the younger man and write him off on their income tax. When the husband died, the “son” moved in with his “mom” friend. “He keeps me company,” she says, “and I’m here to take care of him and his COPD.”

THEN THERE IS LONG-TERM CAREGIVING

The mother of a young man who suffers from Down Syndrome  says, “It would take more energy to figure out how not to do this. He needs steady supervision to stay safe. He knows there are bad things out there, but he doesn’t know that they can happen to him.” She’s a feisty 80-year-old mother from Wichita, Kansas who recently returned from a vacation to her native India with her son. She says, “I can’t get tired of caregiving. That is not an option.”

Long-term caregiving isn’t always a parent-child situation. Many times a dementia-related illness can go on for years. One of my friends took care of her A.D. husband for more than 10 years. My husband, Ken’s illness was full-blown Alzheimer’s and it was more than 10 years from diagnosis. If I counted back into the 1990s when I first saw signs of his family disease, the total would be closer to 20 years.

A MOTTO FOR CAREGIVERS

I suppose one could be, “Hang in There,” which usually goes without saying. The important thing, though, to keep in mind is: “They can’t help what they do, so it’s our job to help them.”

Originally posted 2015-11-30 07:33:15.

CLEARING THE CONFUSION: ALZHEIMERS OR DEMENTIA

DEMENTIA – A STARTING POINT

Questions marks illustrate there is a difference between dementia and Alzheimer's.

Knowing the difference between dementia and Alzheimer’s, helps people understand the disease.

August 24, 2014 – What is dementia and how does it relate to Alzheimer’s? Years ago they said that he/she is getting senile, or he/she is entering into their second childhood. If a loved one became cross or cantankerous one might say, “He/she is having a moment of senile agitation.” Then an observer could quickly cut to the chase with “He/she is downright crazy.”

Over the years descriptive words and terms do change. It wasn’t political correctness that brought about the change from yesteryear, it was a more conclusive definition that brought the word dementia into use as the more descriptive and popular term to describe loss of cognitive reasoning. The explanation from one dictionary is “a condition of deteriorated mentality.” Continue reading

Originally posted 2014-08-24 16:54:42.

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.

HANDICAPPED MORPHED INTO SPECIAL NEEDS

wheelchair

If we live long enough we may all end up with special needs.

I noticed in Erma Bombecks’s column, which I referred to in my last blog, that she used the word handicapped in reference to children with special needs.  How easily “special needs” rolls off the tongue in today’s world.  It was one of those descriptions that came through evolution during the pre-politically correct era.  Words have made it through transition since words began, and often that’s a good thing, but the emphasis on being politically correct I find irritating, if not a paralysis of speech. I’m one for calling a spade a spade – for example: when clothes come back from camp they are covered with dirt – dirty, dirty, dirty!  They are not soiled, they are dirty – even filthy.  In other areas I strive always to be kind, keeping my words sweet in case I have to eat them, but I also believe in the 1st Amendment.  However, being p.c. is not the issue.

The word handicapped is a good word to replace when its reference is health.  Any story you may have heard about its origin beginning with beggars in London holding their cap in hand as they plead for a handout is not true – a myth – an urban legend.  Handicap has been a word used in sports dating back to Scotland and golf, and you hear it often in horse racing. Why, around 1913, someone decided to use it for children who were born less than perfect no one knows.  Handicapped was expanded to include adults and people with mental disorders around 1950. That’s another “why” question when the word was, and is, doing so well in sports.  Disabled became its replacement, and many thought less-abled was even better, and whether it’s p.c. or not, special needs seems to be the most descriptive – especially for children. I like disabled for adults rather than less abled.  The less part sounds so contrived and leaves questions hanging.

Ken and I have seven disabled great-nieces and great-nephews, all belonging to our niece, Carla, and her husband, Chris.  Following the birth of their first child, who barely made it through a very premature delivery, the doctors warned the couple that any future pregnancies would, no doubt result in more preemies.  Furthermore they were advised that this baby would have considerable cognitive loss, wouldn’t be able to see, possibly not walk, and then mentioned there may be more disabilities they didn’t even know about – if she lived at all.  Nothing mattered as the couple waited the endless weeks while the fragile life ebbed and flowed, and gradually took hold.  Strong in their faith they knew they could handle anything.  “Just let her live,” was their fervent prayer.

Amazing could be the word, but no doubt it was more faith, humility and God’s plan that brought the tiny girl into near normalcy with her whole life spread out like a blossom-covered meadow. Yes, Aurora was a miracle.  “However,” explained Carla “we now know God was preparing us for something else.  When we decided to adopt, rather than risking more early deliveries, because of the unknown factors surrounding Aurora’s birth, we had already come to terms and accepted the idea of a child with cognitive disorders, cp, seizures and the like.  When the case worker asked if we had ever thought about a child with one of these – we just cracked up. The truth is God knew our children before they were even formed, and He knew Chris and I would not be willing to step forward — too daunting.  So in his incredible wisdom, he used Aurora to prepare us.  We never knew what a blessing her birth would bestow on each of us.”   They wanted a big family so the couple began adopting children with special needs from around the world; their disabilities ranging from mild to severe – which is all in the eyes of the beholder.

As an extraordinary teacher Carla works in a school district with a wide range of students and lifestyles.  Many of the parents have more important interests  than their children – leaving their youngsters with special needs of a different kind:  some are neglected – spiritually, physically and emotionally.  Some suffer from various kinds of abuse and many are just hungry for love and a sense of belonging; all of which fits beautifully into Carla’s loving and giving nature.  Her experience—vast.

Both she and Chris have given their children the best of all gifts:  a loving family, which is number one.  Additionally, the two have never bothered making an issue of any disabilities their children possess.  “Special Needs” doesn’t necessarily mean special schooling or classes, but it could include two prosthetic legs, a hook for a hand and muscles that don’t always obey.  Yet, it’s taken by the family as almost incidental.

Their beautiful little brown-skinned girl with the dark hair and near-black eyes was found living on the streets of Puna, India and did need special classes to teach her limited mind.  She remains the beautiful brown-skinned girl with dark hair and near-black eyes.  Even experts in special education were limited in what they could teach this child from the streets.  She has, however, inched along in her progress to be the best she is able to be.  With no background and no family history, much of her remains a mystery.  Nevertheless, she has grown into a happy, functioning (for where she is) adult.

All of the children are grown and constantly buzz in and out of the Oregon family home. Their lives are very normal and they are either continuing in higher education or working at a job — or jobs.  These young adults have a different understanding of disabilities, expressed by their parents right from the “get-go,” “Our theory has been that some of us are disabled now, and the rest of us are just temporarily able.”

I think of the irony played on humanity by the fates and find this thought process very true.  I look at my husband, with his AD, and realize he is disabled: both mentally and because of his cognitive decline he is becoming physically disabled.  Ken’s parents were disabled in their old age as was my own mother.  My dad, with no mental disability still needed help physically.  We moved him from place to place in a wheel chair, and because of his worn-out knees, he relied on a walker to get him safely around the house.   I suppose that made him somewhat disabled.  Perhaps the absolute mark of disability is having a placard which allows parking in a “Disabled Parking Only” area, and even that isn’t necessarily accurate.

It would almost seem that in the cycle of life we begin by being totally dependent on others for our well-being, and at the end of life we again are dependent on others.  Following the death of both his parents, Ken was determined that their fate would not be his fate.  Consequently, he began to take extra care of his body, making sure of a goodly amount of exercise: running and gym workouts, and keeping himself in general good health.  Noticing Ken’s unusual strength and his still well-developed body, his caregiver Crizaldo has said, “Mr. Ken defies age.”  In that respect, Ken did achieve his goal.  Physically, he would still be a very able-bodied man if it were not for Alzheimer’s.

I do believe there is a message here.  Many aging adults, and I’m the first to say “but not all,” are disabled.  Disability does not always have to be part of growing old although it is the road often traveled.  For those striving to remain able bodied, we all know the best way to keep on moving is to keep on moving.  I sometimes wonder if Ken, when we are helping him out of bed and he becomes as rigid as a board (which is totally self-imposed) isn’t doing what comes so naturally for him: stretching — exercising.  In this case he’s doing isometrics, and he is making his caregiver and me his opposing force.  After a few pulls using us as resistance he relaxes, cooperates and gets up.  How’s that regimen for keeping in shape?

Originally posted 2011-10-01 03:14:53.

UNAVAILABLE: ALMOST LIKE A VACATION

hammock

Being unavailable to my caregiving responsibilities was like going on vacation.

I recently took some time off to have my gall bladder removed.  Golly, but body-part removal sounds ghoulish — even neglectful or careless although I know that isn’t true – things just happen. Furthermore, Dr. Frankenstein is not my surgeon. Replacements and repairs sound all right – like putting a new engine in a car – a pacemaker, new hip or knee replacement.  That sounds like good maintenance.  It’s the removal word that sounds menacing, discarding – like we’re throw-a-ways — like taking the car to a junk yard.

However, that comparative idiosyncrasy exists only in my imagination.  Actually, I had a good-size stone which produced some severe stabs of pain and some degree of discomfort, but never a continuing 10-on-the-chart pain, which was a good thing.  Nevertheless, a lack of urgency placed the procedure into an elective surgery category.  My surgeon’s advice:  it should be removed.  So I was faced with having a body part taken out – scary.  I mourn a tooth extraction, now I was considering the removal of this important and useful, but expendable storage/distribution organ which has been with me all of my life: a part of me.  It was time to share this news with family and allow for other opinions, and it’s times like this that I feel so alone and really miss Ken.

Years ago having one’s gall bladder removed was a major, lengthy hospital stay, long-recovery operation.  Today, using laparoscopic surgery, it’s an in-and-out ambulatory procedure requiring three small, intentionally placed slits in the upper abdomen and an interesting reconfiguration of the navel. Yet, even with family input, I debated whether I should wait for a No. 10 on the pain chart.  I conferred once again with my p.c. doctor (who believed it was warranted) my dermatologist (with whom I had a chance-same-week appointment) — she advised that I should do it — and finally I shared my hesitations with another doctor during my pre-op appointment.

I knew that it wasn’t going to get better even though many people carry a gall bladder filled with stones and never feel even a twinge. The most compelling reason for me to have it done before I was driven to consent by a siege of No. 10 pain was because I am the prime caregiver for Ken.  Everyone in the family would best be served, including me, if it wasn’t an emergency situation.  As the pre-op doctor and I were talking about my husband having Alzheimer’s one of the nurses overheard and after the doctor left, she suggested that at some time I really should get away for a rest – whether I did the surgery or not – she felt I was ready for a respite: a pause in my care-giving duties.  I assured her I was all right and that I wouldn’t consider traveling more than an hour away in case of him having an emergency.  “Then,” she said, “You should take some time off and be unavailable.”  Continuing, Nurse Nancy explained that she had cared for her mother who was a victim of AD, and her sister came periodically from out of town to relieve her.  “I never went anywhere either,” she said, “but when my sister was with my mom I was ‘unavailable.’  You’ll be surprised how refreshed you will feel.”

Following my pre-op appointment I was mentally ready for the procedure and made arrangements with our daughter, Debbie, to come from Utah to be at home with me and Ken for three weeks.  Although most of our grown children are self-employed, she is the only one who has the flexibility to bring her work with her. 

She arrived as scheduled, helped Ben while our daughter-in-law, Sabina, accompanied me to the hospital and brought me back home to my waiting bed for some R & R.  Debbie continued helping Ben and pampered me when necessary with other family members nearby as backup.  Furthermore, I happily found myself totally unavailable for anything outside of my own personal needs. 

I cannot express what an incredible sense of freedom I felt.  It isn’t that helping the caregivers with Ken is so difficult because it isn’t.  It’s just the responsibility of caregiving is relentless when done every day 365 days of the year.  Scheduling is unbroken and it’s the unbroken part that becomes not only relentless but stressful which usually goes unnoticed because it’s a silent, consistent buildup of tension.  The wise nurse knew exactly what she was talking about.

Up and about I was back checking my computer the next day.  Opening my email I found that my personal address book had been hacked and the hackers had sent out an ad under my name for weight loss.  Several of my friends sent it back with questions.  Emailing everyone on my list I stated that I had not mailed the ad, and then changed my password.  Hopefully, that will eliminate the problem of further intrusion – till next time.  Coincidentally, the timing couldn’t have been more on target lining up perfectly with my surgery, and I did see a little humor in the entire scenario.  The text read that the recipients should use the product because, as stated in my bogus testimonial, I had lost 29.2 pounds in the last 30 days.  I thought about the troublesome stone which was now gone, “It was like your father’s,” the doctor had explained, “about the size of a small egg.”  Remembering my erroneously reported weight loss, and although shedding a few pounds in never far from my personal goals, I’m sure glad my small egg didn’t weight in at the better part of 30 pounds.

You ask if I am still enjoying my recuperation.  Without a doubt, I am.  However, because I feel so good I must remind myself periodically that I am still recuperating.  Following doctor’s orders I’m not lifting heavy boxes or mowing the lawn.  Debbie and the caregivers haven’t missed a beat in Ken’s care.  Perhaps he too is appreciating a change, and I am comforted that he is well and as happy as a victim of AD can be.  From the comforts of my own home I can watch from afar yet spend time with him as a visitor, all the while making myself very unavailable for any of his needs.  If it weren’t for a few tender spots in my torso I could lose myself in a book and even pretend I was on vacation.

Photo courtsey of:  http://www.flickr.com/photos/chumpolo/511227025/

Originally posted 2011-09-11 00:02:18.

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.

SUNDAY DINNER WITH KEN AND COMPANY

lentil spaghetti

This person with Alzheimer's even enjoys lentil spaghetti

Our niece, Carla, and her husband, Chris, came to visit last Sunday.  She is the daughter of Ken’s sister, Loretta, who also is a victim of Alzheimer’s.  Coming from Oregon they had stopped in Santa Rosa to visit her mother who lives in a full-care facility before continuing on to the East Bay where we are located.  Two of our adult children and their spouses were here as well and with Ben helped Ken into the living room so he could be part of the day.

“Mom is doing well,” Carla reported.  “She doesn’t know anyone – not me or my kids, or my brother and sister.  Nor does she recognize her life-long best friend, Jean.”  We talked more – actually at great length — questioning and comparing where Loretta and Ken are as they journey into oblivion. I said that Ken seemed to be having trouble walking.  “Mom walks just fine, but has trouble eating,” explained Carla. Interesting how the disease attacks different parts of the brain in its various victims. I laughed, though, about the eating and reminded Carla it wasn’t one of her uncle’s problems.  Ken still eats whatever Ben or I put in front of him,” which brought up the subject of food and lunch which was ready and waiting.

Carla and Chris are vegetarians and have been all of their married lives (Carla longer) and I respect their choice.  When I know they are coming I prepare a non-meat meal and serve it to all invited guests, knowing that it doesn’t hurt anyone to go without meat for a meal or two.  That Sunday we had lentil spaghetti, tossed green salad and homemade rolls; lots of protein, but no beef.  My son, Keith, who raises cattle, is a good sport about eating what’s served, but I noticed he didn’t go back for seconds.  A meatless meal for beef growers makes for a lively and amusing conversation which included all of the bad meals mom (me) ever made becoming fodder for the fun.

When my mother experimented with a new recipe for my dad and he was unimpressed he wolfed it down anyway exclaiming, “Well, you don’t have to ever fix this again.”  However, experimenting with new recipes is often a joy and challenge for homemakers, and was something both mom and I liked to do.  With Ken so appreciative of what I served I was always spurred on to clip and file some great recipes from a variety of magazines. (Possibly some of those meals are what Keith remembered as every experiment wasn’t always a roaring success.  Then there was the dreaded meatloaf every Tuesday which is at the top of his ever-expanding bad-meal list.)

Yet, the quest for interesting meals went on even after all of our children were grown.  However, as Ken’s AD progressed, he no longer held much interest in what he ate; only that he ate.  For a while I continued clipping and saving recipes, and then I realized I was clipping and after a couple of weeks I tossed the clipping. My motivation for food preparation had lost its zest.  Ben and Criz usually cook Ken’s meals and I make something for myself.  It just isn’t fun to cook for only one person – me.

A few days after Carla and Chris left, I found myself reading a magazine and I tore out a recipe.  I have always been a zucchini person and the recipe I found would be great for Chris and Carla’s next visit.  It contained bread crumbs, lots of garlic, red pepper flakes, a little onion, olive oil, salt and four thinly sliced zucchinis – everything roasted and served over spaghetti.  “Perfect,” I said to myself, but I was a bit troubled thinking about all those carbs. Then I read a side-bar section printed in red which suggested that if you didn’t want to serve it over pasta, you could clean and devein a pound of raw shrimp, stir it into the zucchini-bread mixture and roast everything together.  Never mind filing this under Vegetarian.  I’ll check out what else I can do with lentils for their next visit; perhaps a lentil loaf?  That would probably drop-kick the meatloaf from the top of Keith’s bad-meal list.

My zest had a revival.  With all of the ingredients, including a package of frozen raw shrimp, in the house I prepared a single serving as a test run.  Delicious!  Two days later I made the full recipe telling Ben he could take home two servings and the two left were for me and Ken.

“This is really good,” said Ken, enjoying every bit of the zucchini and shrimp covered with garlicky toasted bread crumbs. Whether my motivation will return to the joy of cooking and continue into the tomorrows I don’t know, but tonight creating a culinary delight was really fun and the meal was appreciated by Ken as much as he is able to appreciate anything. Perhaps that should be motivation enough.

Here’s a link to a recipe similar to the one I made: http://primalplayground.tv/sun-dried-tomato-shrimp-on-zucchini-noodles

And here’s the one to lentil spaghetti: http://allrecipes.com/Recipe/vegetarian-lentil-spaghetti/detail.aspx

Photo courtesy of http://www.flickr.com/photos/85934826@N00/4267368265/

Originally posted 2011-08-07 02:43:32.

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