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Posts Tagged ‘Alzheimer's’

old man sleepingin bed

Even while asleep this caregiver gets comfort from her husband with Alzheimers; sleeping in the house.

I sometimes feel a bit isolated when the caregivers leave, but not for long.  Ken is in bed and usually asleep as the evening stretches before me.  Yes, cabin bound, but I don’t feel I’m alone in the house.  I’m not.  My husband is sleeping in the next room.  I can sit with him and read or I can talk to him if he’s awake.  Awake or asleep he doesn’t make much sense, but that’s all right.  If something entertaining is on the tube, I can sit next to his bed and watch TV, holding his hand while he sleeps – or not.

Alzheimer’s makes life such a dichotomy: at times I state that he is gone and other times when we are alone he is with me.  At night, his very presence gives me a semblance of companionship – the same feelings I had years ago when his day had been long and hard, and sleep beckoned earlier for him than usual.  He was at home although he was asleep.  If someone called I would simply ask if it was important because Ken had a rough day and had gone to bed early. I suppose that’s the feeling I have now at night:  my husband is here, but he went to sleep early.

It’s with that feeling I go about my evening – even laughing at myself for the lack of logic in some of my actions.  Ken’s caregiver, Ben, is very good to me and very considerate.  Waste Management comes to our neighborhood on Wednesdays to collect the contents of our various waste containers so Ben puts the cans out on the street before he leaves each Tuesday evening.  He also makes sure the cans from the house have been emptied as well. However, there are times when a forgotten waste basket filled with paper needs to be added to the recycle can.  I think nothing of taking the trash out to the street before I go to bed – even at midnight.  I have no fear of leaving the door open and dumping my small amount of paper into the recycle bin for pick up the next day because my husband is in the house.  If I lived totally alone, even though I am comfortable in my neighborhood, I wouldn’t empty the basket until daylight.  How rational is that?  Am I safer because he is here?  In his condition, certainly not, but because my husband is here,  I feel safe.  I know my reasoning defies logic, but feeling safe and feeling that I’m not alone is not only a comfort, but a battle fought and won, and it’s a blessing to have someone with me in the house, even if that someone could do nothing if a bad guy jumped out from behind a bush.

Bob DeMarco in his Alzheimer’s Reading Room blog often talks about AD victims still being here, and physically DeMarco, of course, is right and in some cases an AD victim’s cognitive awareness is in and out.  In reading about his experiences with his mother, Dotty, I realize that where she is with her AD is not where Ken is with his AD. During his awake time when daylight fills the room he is seldom the Ken I have been married to for more than a half century.  And when I look into his hazel-green eyes and see no response or recognition, and I’m sure others will agree, that’s when I have that feeling he is not here – he is gone.  But other times, and during those long night hours, as lacking in logic as it is, he is here with me — but we mustn’t disturb him because my husband is sleeping. And his presence fills my home and my heart.

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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?”

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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?

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Assignments from God are there to help us grow.

I miss Erma Bombeck.

While sorting through files recently I found a scrap of newsprint which I had clipped from our local paper.  Turning it over my thoughts raced back nearly 20 years when her column “At Wit’s End” was a twice weekly must read.  For those who never had the chance to become acquainted with Erma’s charm and wit, she was known, and probably still is, as a great American humorist.  I’m not sure if that adequately describes her, but it’s a start.  No doubt she was a devoted wife and loving mother because her mainstay was poking fun at child rearing, homemaking and living in suburbia.  Much of what she wrote began with a good laugh and often ended with a few tears, or she could reverse all of it leaving the reader chuckling the whole day.  Or you could just be filled with the profound and clever wisdom of it all.

The column I had pulled and filed away was so very poignant.  I suppose that’s why I tore it out and kept it all of these years.  Erma loved to play God and she was very good at it.  Well, maybe not play God; she was more like a reporter standing next to an assistant angel watching them at work.  She wrote about humanity’s relationship with God fairly often, which made us think, ponder, smile and feel good.

Special motherhood was the subject matter of my yellowed copy as Erma visualized God hovering over the earth deliberating which mother would get which spirit child as God and an angel made notes in a giant ledger.  The day’s work also included assigning an exceptional patron saint selected because of his or her strengths.  “Give her Gerald,” God instructed the angel, after assigning twins — probably two adorable, rambunctious, high-spirited boys — “Gerald is used to profanity.”

Progressing nicely in their labors, God passed a name to the angel and said, “Send her a handicapped child.”  Puzzled, the angel asked, “Why this one God?  She’s so happy.”

Explaining, God said it wouldn’t be proper to give a handicapped child to a mother who didn’t know laughter.  “That would be cruel.”

Continuing, God listed the qualities this woman had:  Patience – but not so much that she would drown in despair feeling sorry for herself.  She won’t have time for a pity party.  “Once the shock and resentment wears off,” assured God, “she’ll be fine.”  Then he told the angel how He had noticed her feelings of independence and self-worth that He found rare, yet so necessary in a mother.  The special-needs child required a mother who could do for the child what was needed and still be her own person.

With caution the angel informed God that this independent woman didn’t even believe in Him.

God just smiled, assuring the angel that He would take care of that.  “She’s perfect, with just enough selfishness.”

Stunned, the angel asked, “Since when is selfishness a virtue?”

God nodded to the affirmative, explaining that she would have to separate herself from the child on occasion, or she would never survive.  Then He went on listing all of the blessings that would come with this child of need.  How the mother would never take for granted the growth of her child, how just hearing that first, “Mama” would be a miracle, and how generous these children are with their love.  “I know that she would teach the child of my creations, seeing and knowing them as she had never seen them before,” confiding in the angel that this child would be blind. The angel agreed, and God concluded, “She will never be alone, for I will be with her every minute of each day.”

Curious the angel asked about the patron saint.  “A mirror will suffice,” God smiled.

All of this, of course, gave me cause to wonder about His assigning caregivers to an ever-growing number of people with Alzheimer’s.  For sure, there are countless members of the human family with special needs even if that need doesn’t appear until later in life.  Previously, I have talked about my friend, Madalyn.  Light heartedly, we remind one another that we don’t remember signing up for this job.  And yet, the assignment was/is ours just as parents with children having special needs learn to accept and live with what’s given to them.

So what are some of the hoped-for character traits which God might have seen in us?  Wow!  I wonder if He remembered that most of us – whether caring for aging parents, other relatives or our spouse – aren’t young anymore.  We used most of what were the best parts of “Us” bringing up that batch of children He sent to us early on.  So, now we’re running on leftovers?  No matter though.  Let’s see what those leftovers might be and what worn-out qualities we’ll have to reorder.

  1.   Patience:  Not a lot left, but I’m slowly acquiring more.  I no longer plead, “Give me patience and I want it right now.
  2.   Strength and energy:  The tank is pretty near empty, but I’m surprised how much I can muster up when required.  However, I have been known to sneak away and take a few naps.
  3.   Wisdom:   I didn’t have all that much when I had our first baby, but I managed to gather some by the time they were grown.  Whether it was enough I’ll never know.  My mom used to say, “It’s a shame that age comes so quickly and wisdom so slow.”  But what I did learn applied to children and young adults.  Now I must begin all over again gathering applicable wisdom for an adult with special needs, and it’s different.  I can’t sit down and reason with Ken about his attitude and how it might have a negative effect on his future, and then remind him he should make every effort to change his thinking.  If he listened at all he would probably say something like, “YOU!  You don’t know anything!” Any new wisdom I might receive will have to be applied to me so I can become a better caregiver.
  4.  Sense of self and independence:  I believe I still have that.  Being my own person has always been a blessing.
  5.  Tears:  God didn’t list them in Erma’s column, but tears go along with empathy, sympathy and love.  Besides, living in a state of perpetual mourning tears are commonplace, and are necessary as part of venting.  I’m sure most women, including mothers of special-needs children have a goodly supply of tears.  Typed on the prescription bottle is, “Use tears as needed,” but they often spill out during unexpected splashes of joy, and random acts of kindness.
  6.  Selfishness:  Yes.  I have my share of selfishness too.  And God’s reasoning is so good.   It is prudent to have some kind of life away from our needy charges no matter what our age – without any guilt.  We do have to take care of “us,” or we can’t take care of them.  Just as the instructions on the plane tell us: “Place the oxygen mask on you first, then the child.”  “ME FIRST” is a must-have attitude.  That advice belongs to all mothers and caregivers alike, but never “Me first and only me.”
  7.  Vanity:  That wasn’t listed either.  I would say to the angel that in this case, like selfishness, it is a virtue, and one of dire importance.  Not a narcissistic kind of vanity; I’m referring to humble vanity.  (Now, isn’t that an oxymoron?)  Nevertheless, when we look our best, we feel and do our best – at least we do better while striving for best.  Motto of the day: comb hair, brush teeth, touch of makeup and put on a clean shirt.  Get dressed every day and no sloppin’ around the house in a bathrobe.
  8.  Laughter:  I believe a good hardy laugh shakes down the woes leaving room for joy and other good feelings.  I have always tried to be best friends with laughter.  If it has slipped away, renew the relationship. Find where it’s hiding and bring it into the living room so it becomes part of the family.
  9.  Acceptance:  It may take a while, but no one can fight “what is.”  This is where life has taken me, and many of you, and there is no escape for the dedicated.  Might as well sally forth into the tomorrows and make them as good as possible.  Besides, nobody knows how many tomorrows are left.
  10.  Call home often:  God was certain we could do the job, and whenever we need to talk, He’s there.  He said so in Erma’s column: that he would be there every minute of every day.  Not only because he loves us, but He so appreciates us for doing some of his work, and caregiving is God’s work — especially when it’s done with a glad heart.

Oh!  And by the way, I believe Patron Saint Gerald has been reassigned to me for those times when my patience tank is running on empty.

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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. The rest of the family agreed she 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 celebrated 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 and entertaining. She 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/

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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/

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Getting a needle in his eye, is a difficult procedure for Alzheimer's patients.

Getting a needle in his eye, is a difficult procedure for Alzheimer's patients.

In the earlier stages of Ken’s Alzheimer’s we paid a visit to the eye doctor.  As we sat down Ken looked around the waiting room and casually said, “Funny, with my right eye I can see the wall and painting on one side and on the other side I see the door, but I can’t see anything in the middle.”  Good grief, I thought to myself, he doesn’t see the chair.   I was surprised to hear his “complaint,” and glad we were having his eyes checked, but I also thought it odd that he had never mentioned anything before about not seeing things in the middle.  It was if he had a hole in the center of one eye, which sounded like macular degeneration.Our eye doctor gave Ken’s eyes a thorough examination and seemed pleased to find his eyesight as good as it was, but sent us to another doctor who specialized in the treatment of macular degeneration.  “Yes,” said Dr. Specialist, “I do see that you are having some difficulty in the right eye.  If the degeneration isn’t too far advanced, we may be able to treat it.”

No matter what Ken’s temperament was when we left the house, his behavior was exceptional when we entered a doctor’s office.  He was like putty in their hands and at the very top in patience doing whatever the doctor asked of him.  I often wonder what would have happened if suddenly one of Ken’s other personalities emerged and socked the good doctor right in the mouth, but so far Ken was Ken with everyone in the medical field.  Dr. Specialist explained about the new treatment for degeneration and possibly Ken could be helped.  Continuing, the doctor said, “The treatment consists of shots directly into the eye…….”  I do believe the only thing I heard was “shot” and “eye.”   “A NEEDLE IN THE EYE?”  I am thinking is the man crazy?  Ken’s AD plays mind-tag with his other personalities. Does the good doctor really believe all three will sit still and allow him to stick a needle in their eye?  With the steady hand of a knife thrower, intense concentration, and my husband not moving or blinking, the doctor completed the procedure followed by a bandage over the eye to be worn until the next morning.

In a nut shell, the follow-up examination proved that Ken’s degeneration was too advanced to continue further treatments.  How many times, because of his AD, would he have allowed such an assault to continue is unknown and incidental at this point?  However, the needle-in-the-eye experience brought to mind the importance of advance warning: being told exactly what was going to happen.  Imagine the disaster it would have created if the doctor had not told Ken, or any patient, what he planned on doing, but just said, “Hold very still, don’t move and don’t blink,” then went ahead and stuck a needle in his eye.

Clearly, we all like to know what’s coming next.  “I’m going to give you a few shots to numb the tooth,” says the dentist.  You don’t like it, but you prepare yourself because you know what’s going to happen, and your mind says it’s reasonable: hence – cooperation.

Youngsters like to know what’s coming as well. “See this dangling piece of flesh,” the doctor tells our 12-year-old who had shoved the heel of his hand through a closed window.  “I’m going to sew it back in place, but first I’ll give you a shot so you won’t feel a thing.” Mission accomplished with only a few jaw clenches.

Even for major surgery, someone tells you what’s about to happen.  The first step being,  “Count backwards from ten,” instructs the anesthesiologist, “and you’ll be asleep.”   “Ten, nine, eigh………….”  Cooperation and instant sleep is the reward for advance information.

“Okay Sweetie,” I can remember crooning to my 2-year-old.  “Mommy is going to put your socks on.  Now your shoes – hold still.  Okay, other foot.  Socks and shoes on – thank you.  What a good boy – or girl.”  Even when they were little they soon learned.  Not only did their vocabulary grow, but they began to understand about cooperation – until they tasted independence and learned to say, “Me do it,” but that’s another story.

I find myself thinking of our little ones very often as Ben and I – or Criz – work with Ken during the morning routine.  “Put your jeans on,” I hear myself purring, as the caregiver guides each foot into the pant leg.  “Socks on, very good – other foot (as if he were two) now your shoes – okay.  Good boy, stand up now.”  These are all simple words, simple statements, something for his mind to absorb, wrap around and to ponder (if the thought remains long enough) in his mixed up world.   “Are you ready for breakfast?” I ask.  “Of course,” he grumbles, “I haven’t had anything to eat all day.”

Another morning we begin with, “Today, we’re going to take a shower, Ken.”  “No thanks, I took one already.”  “Good, but we’re going to take another one because you really like showers.”  In addition to the words, it takes a little coaxing, a little direction, another reminder, “We’re going to take a shower,”  leading a bit, encouraging and pushing gently, still guiding and holding, into the stall where Ken sits on the waiting stool.  “Ahhhh,” he exclaims as Ben lets the warm water splash over him, “that feels so good.”  I’m tempted to say, “See.  I told you so,” but I don’t.   Instead I feel grateful for small successes.

Does giving instruction and preparatory information beforehand help and does it always work?  Sometimes, yes – sometimes – no.  There are times when I say, “Okay, we’re going to stand up.  One, two, three — stand uppppp.”  He stiffens like a rigid board and shouts, “No,” and then begins to jabber at the top of his voice, adding yelps and screams.  So we back off until everyone relaxes and calm prevails.  When he is quiet I get close to his ear (holding his head with my hand to avoid a head butt) and repeat what we are about to do in a calm, firm voice, “We’re going to stand up now and you can help because you have good, strong legs.  Okay, one, two, three – stand uppppp.”   Finally – cooperation — and up he comes with hardly any effort from me and Ben.  At times he will remark with a touch of sarcasm, “Why didn’t you just say so?”

Sometimes telling patients exactly what you are planning works, and sometimes it doesn’t.  With AD, there is no pat answer, but I believe the conversation helps and it’s worth a try.  Who knows exactly what goes on in the diseased mind?  I am certain that he finds some inner comfort in being told what we’re doing.  Perhaps it takes away some of the fear.  In any event, his caregivers and I will continue doing what we believe is best and what appears to bring about positive results.  Besides, when it does work it makes life more pleasant for all of us, and in the long run it is comparatively easy — nothing like it would be if we had to stick a needle in his eye.

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