live-in caregiver

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.

ROSIE AND YELLOW CLIMBERS

yellow rose

Clipping the climbing yellow rose brings back memories.

I trimmed roses today.  The trellis had been filled to overflowing with yellow climbers; each blossom spilling onto the next until there was hardly space for the leaves and branches.  Each year they open in their entire splendor for Mothers’ Day.  Picking that first bouquet I buried my face in the aroma and smiled as my heart filled with joy. I wanted to tell them not to bloom all at once – to save some beauty for June and July — but they never seem to listen.  My consolation: they bloom again in September as if to bid a fond and colorful farewell to summer.

Many years ago Ken’s mother and I browsed through a nursery admiring, touching and taking in the fragrance of flowering plants. “Pick out whatever you like,” she said, “for your birthday.”  I selected the yellow climber, and it must have known right from the beginning how special it was because once it started to climb and the first blossoms began it produced a grand showing twice a year.

Even as a child I was fond of yellow roses remembering my grandmother’s farm in eastern Utah.  During a summer’s visit when I was eight Grandma taught me how to make tiny flower dolls with billowing skirts and bonnets from hollyhock blossoms, and whistles from the leaves of a cottonwood tree, but it was the yellow climbing roses covering her fence which I thought to be especially beautiful – and memorable.  So much so I had once began, one day to finish, writing a poem:

My grandmother’s house was set back from the road,

as much as my mind discloses,

And next to the lane was a long, long fence

filled with fragrant, yellow roses.

There were other pleasant memories pulled from the past as I clipped away under and over the trellis following a few days of playful breezes which had covered the patio with golden velvet petals.  My friend John had once said how much he liked to work with growing things and the earth, “It’s good for my soul,” he said.  “Well put,” I agreed.  And today, my soul felt good.

With Ken inside resting and comfortable under Crizaldo’s excellent care I felt warmed by the sun and relaxed, putting worries about Alzheimer’s momentarily out of reach.  However, thoughts of AD are never far away.  After all, the disease has been in and out of our lives for more than 35 years.  Even the yellow climber reminds me of priceless time lost, and the once-solid lives AD has stolen from our family.

My mother-in-law’s name was Rose, Rose Mary, but her husband Nick called her Rosie, and sometimes Roses.  Ken brought me home to meet the folks on our second date, later telling his mother that one day I would be his wife.  The bumpy road to romance was just that, but eventually we did marry and Rose became my mother-in-law.  In many ways she felt I was the best thing that could have happened to her son, yet in other ways I wasn’t, but we skipped over our differences and had a great, though a bit guarded, relationship.

She adored her grandchildren, felt privileged to babysit for us, and if we needed help she and Nick were there.  Eventually, we would be there for them.

So much of what we believe we know about Alzheimer’s is speculation.  It was during a melancholy time for Rose when her doctor, caught up with the hype about the new marvel drug, prescribed Valium.  “Calming with absolutely no side effects,” was the claim; so with her doctor’s permission, Rose would gulp down a pill as if it were candy whenever she felt blue.  Years later we wondered if the remedy triggered her entrance into AD, added to it, or if it had any effect at all.  Nevertheless, AD with all of its mystery and newness became a part of our lives. 

Nick was having times of odd behavior as well, but we never really knew which of the two was worse off, or whose odd behavior was actually a symptom, and the medical profession was of little help.  In retrospect it seems as if the couple was in a race with one pulling ahead and then the other coming from behind would be in the lead.  The one thing we did know with certainty was they needed help.

Both Rose and Nick had been avid gardeners; Nick was best known for his fruit and vegetables and Rose for the array of flowers she grew, specializing in gladiolas and roses.  Whenever they came for spring and summer visits her arms were filled with a bouquet of either – at times both.

I suppose their garden (or lack thereof) could have been one of the first symptoms of AD.  Somehow, digging the earth and growing things fell by the wayside as they became tired and forgetful.  Not working outside of our home allowed me more flex time than Ken or his sister Loretta.  I came often to my in-laws’ house where I cleaned, watered, mowed the front lawn, shopped, took them to doctor appointments, to the bank, and often cooked a few meals.  With not enough time, energy or hands to do all the chores, the vegetable garden turned to weeds, but the trees continued to produce even with little or no water – for a while.

“Do you know you have peaches on your tree?” I asked one day as I surveyed the yard.  I picked a few to show Mom and Dad, and then sliced some for lunch.  “Are you going to ‘can’ fruit this year?” I asked Rose knowing full well it was beyond her present capabilities.  “I’ll try,” she responded.  “Would you like me to help?” I continued, allowing her to believe in herself.  She was pleased and remembered where she had stored the lids, jars and bands.

I picked the peaches while she gathered everything we would need.  Together, we peeled, pitted and sliced the succulent fruit and chatted as we filled the gleaming jars for the cold-pack canner.  Her mind seemed to have cleared a little and we talked with the ease of good friends.  Laughing together, Rose told me stories about her “Buddy” and what a near-perfect young man he had been.  I chuckled quietly, knowing the whole story having heard it from the rascal “Buddy” himself.

Maybe, after all, I was everything she had wanted for her son.  Perhaps it was no more than a fleeting thing — as with many mothers — remembering my own feelings as I cradled all of my babies in my arms thinking how perfect and precious they were.  I suppose it was all about wanting the very best for our children, including a perfect and precious mate when they were ready for marriage.  Hopefully, Rose had allowed our differences and accepted me for who I was, not who she wanted me to be.

The following spring there was no fruit on the struggling tree and not much to be said about the gnarled rose bushes.  Furthermore, Nick and Rose’s Alzheimer’s had grown worse.  As a family, we knew there would be tough decisions to make – probably soon – possibly later — but all of that was long ago.

My task finished for the day I put away the ladder and clippers, and swept away the petals.  I would go inside and see how Ken was doing, all the while treasuring my afternoon in the sun basking in lovely recollections, yet recalling my first introduction to the Devil’s dreadful disease when it forced its way into the contented lives of Rose and Nick.  I also thought how interesting it is that time dulls the pain of difficult memories, yet remembering the happy times still brings joy to the heart and smiles to our lips in much the same way as a bouquet of fragrant, yellow roses.

Originally posted 2011-05-23 02:51:54.

THE IMPORTANCE OF SIMPLE

Lincoln logs

We all enter the world as little tiny people — babies; and right from the near beginning we have reached out with eager little hands for activity spurred on by our insatiable curiosity: something to examine – to touch, to taste, to feel — a challenge to stimulate our brain, to satisfy the inquisitiveness of our growing bodies and minds.  Whether it’s a bevy of plastic birds clipped to the crib, a zoo of stuffed animals to play with or a bridge to build, man has thrived on activity whether it be play or work.

When Ken and I were fairly new grandparents, our daughter left her two sons, John and Peter, with us for the evening.  “What can we do?” was the immediate question.  A closet still filled, at the time, with puzzles, coloring books, board games, cars, trucks and other toys from their younger uncle’s youthful days was the answer. “Here you go,” I said, handing one of them a bag of Lincoln Logs for starters.

Dumping the contents on the floor, the two boys began laying logs in various directions.  With Lincoln logs, though, there is an interconnecting pattern which holds the cabin together.  I helped them fit a few of the pieces and told them they could finish.  After struggling, and having their building fall apart, John said to his grandfather, sitting nearby, “Grandpa, help us build this cabin.”  Grandpa’s interest was more centered on the evening news and tactfully declined.  “Please, help us.  Please, Grandpa, please, please, please.”  With enough intense coaxing, Grandpa reluctantly agreed and in no time the cabin was finished.

With proud satisfaction the two boys tore down and rebuilt the cabin a few more times, soliciting their grandfather’s help, before asking to play with something else.  “But first you have to pick up all the Lincoln logs and put them back in the bag,” I instructed.  “Ahhhh,” was the duet reply.  “Come on,” I insisted, “you played with them and now you have to put them away.”  “Okaaaaayyyyy, but Grandpa played too so he has to help.  Even if the Lincoln logs didn’t hold their attention all evening, their curiosity led them to many new adventures coming from the game closet with instructions, “Play and put away.”

At the other end of the spectrum, activity still remains an important factor on a daily basis, including the lives of those with afflictions found under the Dementia Umbrella. Boredom isn’t good at any age. However, Ken’s level of interest is diminished to almost zero as AD increases in severity; with drive and enthusiasm nonexistent.

My friend Darline’s AD is at mild cognitive loss.  She is fortunate to live with her daughter and her family, and with Darline as Top-Totem on the Totem Pole, there are four generations living under one roof.  On Mondays and Fridays Darline spends several hours at Adult Day Care while her daughter does catch-up with errands, her own doctor’s appointments, and other family obligations. Although Darline tells me she enjoys tuning in on family conversations about all of the activities and goings-on in the busy household, going to day care, where she has made a few new friends, gives her a break as well.  She also takes part in simple activities.

I believe Ken and I missed the opportunity for day care during his Alzheimer’s journey.  Up until last February, we went everywhere, and did just about everything together.  If we visited a friend, which was often at his request, he always needed to be assured that I wasn’t going to leave him.  Not even a consideration, but when I thought day care might be good for him, I also wondered if he would be willing to stay without me.   As the past year has been filled with readjustment and recuperation, he is pretty much content to be at home among what is familiar with his interests very limited.

Yet, his caregivers and I wonder how to increase his activity level.  A true sports fan at one time, television of any sort holds no interest.  Having been an out-of-doors kind of guy, and as the weather warms, Ken likes being outside.  Weather permitting, he is content with a very short walk or ride in the wheelchair, we can do that and then sit on the front porch, which is something he has always enjoyed.

He likes looking at picture books, photo albums (recognizing no one), rustling through the newspaper very briefly having lost most of his reading skills, and walking around the house to see what’s going on in each room. If Ken sees a stack of letters or papers on my desk, he’s interested.  Quickly, I divert his attention to something else and scurry him from the room.  I would like to give him all the junk mail to carry around and hide in books, but that adds too much confusion to my life. Overall, though, his span of interest is much like that of a very young child: short.

Reading one of the numerous blogs about AD activity, one caregiver reminded us not to overwhelm our patient with “too much.”  She had offered a coloring opportunity to her mother only to have mom just sit and stare at the crayons and paper.  Eventually she removed all but one red crayon.  Success!  Apparently, there were too many objects from which to choose, so she chose nothing.  With only one, she went right to work.  Good ideas need to be explored.

With one crayon and one page to color, I placed the project on a small, narrow table for Ken to ponder.  With another page and another crayon I pulled up a chair and sat across from him and began coloring my picture.  “Wouldn’t you like to color your page?” I asked, handing him a crayon.  He looked at the crayon and decided the bright color might be something to eat.  “No, no,” I cried, taking back the crayon.  Briefly, I continued with my page making an effort to attract his attention to my activity.  He spoke in disconnected sentences looking at me as if I wasn’t there.  There was no way he wanted to color.  At other times Ben has offered him a pencil and paper encouraging him to write his name.  All to no avail — some activities work while others don’t.

I tried a puzzle with Ken, but it held no interest although there were only five pieces.  It was a Spiderman puzzle and perhaps it was the subject matter he didn’t understand.   Even in its absolute simplicity and with my help he walked away.  I’ll try again – presenting a more simplified pattern with which he may relate.  What is important, however, is that we make the effort.  Keep trying, but keep it simple.

Our game closet has changed since we were new grandparents, and John and Peter are grown men with young ones of their own. The puzzles and games, even the Lincoln Logs, are gone with a few replacements added to keep the new generation entertained.  One of the zipper-closed-handy-handled-see-through plastic containers is filled to the absolute brim with colorful snap-on plastic blocks.  Wondering one day if “building” something might nudge at Ken’s engineering past Ben brought them out.  Not as complicated as Lincoln Logs, he began snapping them together, but before long his interest waned.  A colorful wall and the remaining scattered blocks were left on the table while he leaned back in his chair and took a short nap. Yet, each time they are introduced, he is interested.

Right now, it’s time to put everything away for another day.  Too bad Peter and John don’t live close by.  Perhaps it might be fun to help their grandfather build something, and when the project was finished they could help Grandpa put away the blocks.  In that imagined scenario it would be no more than right for them to help pick up.  After all, they played too.

Originally posted 2011-04-11 00:07:36.

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.

ACCEPTANCE: ALZHEIMER’S IS TERMINAL

The first week of November is a different time of the year for a 40th Class Reunion, but for whatever the reason, I was really looking forward to having our oldest daughter, Deborah, travel from Utah for the event and spend a few days with us, as well as her children and grandchildren.  She and husband, Mark, moved to Utah when he was downsized from his graphic arts job, located just south of San Francisco, with a package deal for an early retirement.

Wisely, they took their California money, retirement from her school teaching job and settled in Ogden.  The good part for them is they have several children who also live in Ogden; hence, grandchildren.  So wherever they are — Bay Area or Utah — there is family, but we miss them.

Our other four children, three boys and a girl (correctly put, it should read three men and one woman) live no more than an hour away from us, and that’s a good thing.  In the event of an emergency for either Ken or me, someone is only moments away.

Interesting, though, whether they live a mile away or 800 miles away, Ken doesn’t know any of them.  When Debbie arrived she greeted her father with a non-threatening hug and, “Hi Dad.  I’m your daughter, Debbie.”  He viewed her with suspicion and replied, “I don’t know about that,” which is similar to the same response he gives the others, even me.  His very brief moments of knowing me are sandwiched in between his mood swings amounting to not more than 10 to 15 minutes each day.

Even if the visit is lengthy it doesn’t matter; further recognition of his children does not take place as the hours move on.  All of us are just “someone” to him, as I was only “someone” to my mother as she slipped away into the more advanced stages of AD.  It was the same way with Ken’s parents, Rose and Nick; we were nobody, welcome nobodies, a few middle-aged people who kept showing up for a visit.  Their memory of family was and is gone.

I’m not sure if acceptance is an instant thing or if it’s gradual — probably a little of both.  When those first tears stop is that total acceptance?  Or is it when the patients look at the beautiful faces of family and sees them not?  I’m also certain that the timing is different for each family member.  Furthermore, acceptance isn’t just about the disease, there is always something new to accept as the victim spirals down the bottomless staircase.

In a recent response to my Blog, a follower mentioned that when the family fully accepts that Alzheimer’s is terminal, they could better come together in determining what is best for the victim.  That’s true, but, again, each case is very different and must be carefully evaluated.

For Ken’s parents and their particular situation and condition, we found it best to place them, at different times, in full-care facilities.  My mother, however, remained in the family home which included my father (with a live-in caregiver) until she took her last breath.  These decisions even in retrospect, for all of us, were what we believed to be best, not only for the AD patient, but for all concerned.

Never meaning to undermine the wrenching decision of children being called upon to put their parent or parents in a care facility, that relationship doesn’t compare to decades of intimacy and oneness shared by a husband and a wife.  Nor does anything compare to the agonizing decision reached by the well spouse who finally must declare, “Now is the time.”  And then, it is with support of family, all agreeing, that placement is necessary, which includes that which has already been declared and accepted:  Yes!  Alzheimer’s is terminal.

Originally posted 2009-11-11 08:18:50.

ALZHEIMER’S AND A MELTDOWN

baby possum

Even a tiny possum can cause a big meltdown.

The wicked witch in the Wizard of Oz had a meltdown.  One splash of water and she was gone like my grandmother’s spit on a hot iron. Now that’s what I call a meltdown.  No, I haven’t had anything like that and I don’t mean to poke fun at an extremely serious medical condition. Perhaps I’ve wanted to collapse a few times and let them take me away. If only there had been more time, and I needed the respite.  But the days are always lacking in enough hours to get the necessities done and over.  Having a meltdown is not nor has it ever been on my to-do list. Continue reading

Originally posted 2013-10-20 04:55:06.

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