Family

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.

I PRAY FOR YOU ENOUGH…………

Just after I finished my previous writing, “Through The Storm,” I received a lovely email from my cousin, Penny, in Oregon.  I could see by the enormous block of addresses that she had, indeed, sent it to all of her friends and family.  It was one of those emails worth forwarding titled “I Pray For You Enough…..”  After reading it my thoughts were, “How nice.”  I had received a similar one a while back titled “I Wish You Enough……”  The contents were the same, the story line the same, but a little different in that the prayer story involved a mother and her daughter, while the wish email was about a father and daughter.  I wondered if an original story had been written by the talented writer anonymous, and during the little email’s travels over the waves of the internet, the various recipients tweaked it just a bit to suit their own fancy, with change happening in small increments.  In any event I’ll briefly relate the story in first person, but I’m not the person:

At the airport I was waiting for my flight when I noticed two women standing nearby.  So close, in fact, that I couldn’t help but overhear their conversation.  As the daughter said goodbye before rushing to her flight she said, “I pray for you enough……”  The mother returned the phrase, “and I pray for you enough……”  Tearfully, the daughter scurried off to catch her plane as the forlorn mother watched.  I could tell she was near tears, but I didn’t want to intrude.  However, she caught my eye, knowing that I must have heard their conversation and asked, “Have you ever said goodbye for the last time?”  I answered that I had, many times.  Tears began to flow as she sat down next to me, her sad words revealing that she had a fatal health condition and her daughter’s next visit would be for her funeral.

While her explanation allowed me to know she was dying, I wondered about the phrase used by both women.  Timidly, I asked, “What did you mean when you both said I pray for you enough?”  She went on to tell me of a family tradition which had been passed along for generations, praying that their loved ones would have enough to meet their needs and to bring  joy to their lives.  Then, as if memorized she said,

“I pray for you enough sun to keep your attitude bright no matter how gray the day may appear.

“I pray for you enough rain to appreciate the sun even more.

“I pray for you enough happiness to keep your spirit alive and everlasting.

“I pray for you enough pain so that even the smallest of joys in life may appear bigger.

“I pray for you enough gain to satisfy your wants, but especially your needs.

“I pray for you enough loss to appreciate all you possess.

“I pray for you enough hellos to get you through the final goodbyes.”

Seven simple prayers covering just about anything one would need, except when life changes dramatically as it does with illness.  The mother was ill.  What would she need in the way of, “I pray for you enough……” for her condition?  And I thought of AD and Ken, and myself as a caregiver.  Not only us and our needs, but the needs of caregivers all over the world who have accepted this awesome responsibility of caring for the dying no matter what the cause.   (Please note I am not including prayer for healing because I’m only considering terminal illness where there is no hope.)  So for the patient, these six are a beginning:

I pray for you enough peace of mind to get you through the day without — or at least with only a minimum — of anger, agitation and mood swings.

I pray for you enough memory so you can take care of your personal needs: a shave and a shower without help.

I pray for you enough friends and family so you can talk, even if it’s only ramblings.

I pray for you enough strength so you can walk a short distance with your caregiver, and get from one room to another without help.

I pray for you enough respect and love from others, that they remember who you were and not what you have become.

I pray for you enough medication to keep you free from pain, to calm your nerves and allow you to relax and sleep.

As a caregiver, the most often-asked question I hear is, “What can I do for you?”  I have “Ken sitters” a phone call away.  I have friends who drop by with a meal for two, cake, a plate of cookies, a book to read, Monday night dinner at Jayne’s house, phone calls so I can sit and chat, friends who invite us to social events even if Ken acts strange, notes in the mail telling me they are thinking of us.   How blessed I am, but even with such awesome support we caregivers need all the help we can get — including prayers.  I have listed a few for starters:

I pray for you enough sleep and rest.

I pray for you enough knowledge, skills, support and help in handling stress.

I pray for you enough friends with soft shoulders to cry on.

I pray for you enough patience to get through the day.

I pray for you enough memories of the good times in life and enough erasers to dim some of the bad.

I pray for you enough love and devotion from all those who know you, and enough remembrances to know you are cherished.

I pray for you enough faith to remind you that there is life after Alzheimer’s (and all of those other disease horrors).

Originally posted 2009-10-24 06:44:13.

THE LIES WE TELL

“Everyone went home.”  That’s one of my stock lies.  Depending on the time of day, Ken has pretty much programmed himself with certain questions, various fixations and anger moods.  First thing in the morning he comes from the bedroom yawning and asks, “Where is everybody?”  My answer is always, “They went to work.”  Then he wonders what day it is, and if it’s a weekday he agrees that, of course, they do need to be at work.  On the weekends, if he asks about the day, I tell him they are working overtime, or say it’s a weekday.

In the evening when he asks, “Where did they go?”  That’s when I tell him, “They all went home.”  I go further to explain that all of our children are grown and have families of their own and they don’t want to stay for dinner because dinner is waiting for them at their own homes.  “Oh,” he replies.  Often he asks about the little ones, assuming we have been baby sitting.  “Their parents came and picked them up.”  That, at times, annoys him because no one came in to say goodbye.

“I have people coming for dinner,” Ken insists.  In the beginning, I would make an effort to convince him that we were not having company only to have  him go into a heated debate about the guests he had invited and why wasn’t I making enough food.  I have learned to suggest that when they get here I’ll cook another dinner.  “Meanwhile,” I say, “I will be cooking for just the two of us.”  He is happy with that and soon forgets about the imaginary company.

Lies aren’t always about food, company or the whereabouts of people who aren’t here.  At times I lie to avoid a hurtful truth.  Ken’s mother was also an AD victim.  Ken, his sister, Loretta, and I conferred about her bladder cancer, and her growing dementia.  It was decided that following surgery and convalescence, their mother would be transferred to a full-time, partial-care facility.  A widow and alone, Rose had managed with Loretta close by, but as illness, both physical and mental, became a part of the mix, she needed more supervision that any of us could provide.

Surgery went well and Rose happily adjusted to her new living situation, but that glimmer and desire of home remained.  Loretta and I were visiting one day when Rose asked, “When do I get to go home?”  In great detail Loretta explained to her demented mother all about her illness, her incapacity to care for herself and that her home had been emptied and was rented.  Saying nothing, but with great sad eyes, Rose looked puzzled and hurt.  A whisper away, I quietly said, “Lor-ettttt-ta.” Glancing back at me she said, “I just want to be honest with her.   I mumbled, “Why?”  When Rose had asked me the same question, which she did each time we visited, I would tell her that as soon as her doctor said she was strong and capable enough to care for herself, she could go home.  I suppose, by a very big stretch, it wasn’t a lie, but it made her feel good, if only for a little while, and it was a more comforting answer than the awful truth.

The scriptures tell us, “and liars shall be cast out.”  In his Alzheimer’s world Ken will say, “I haven’t heard from my mother lately.”  He doesn’t accept the truth, so I tell him, “She and your father are on vacation in Colorado.”  I have become very quick with the answers.  For instance, I sewed the front pockets down on all of his jeans so he couldn’t walk around with both hands deep inside.  I knew if he fell he would be flat on his face.  Thrusting his hands downward while groping for the pockets of his altered jeans, I tell him that having no pockets in front is the latest style.  Flat-out lie!  At times I feel a tad of guilt for my constant lies, which come so easy in our conversations, but on second thought I could call my deceptions in dealing with Ken’s demented mind — fabrication.  Yes, that’s it.  All day long I fabricate, or better yet, perhaps I’m just speaking fiction.

Originally posted 2009-10-04 06:31:18.

VALUE AND RESPECT

“You’ll have to take me out of here in a box,” said my mother many years ago.  She and my dad had retired to a lovely piece of land just a few miles west of Sebastopol, California in beautiful Sonoma County when they were in their early 60s.  My dad, who had worked at Hunter’s Point Naval Shipyard received an early retirement because of his worn-out knees which made it next to impossible for him to continue climbing up and down the ladders of America’s former war ships.  He was also one of the “older” employees so it was easier for the Navy to just retire him rather than to be concerned with Dad’s aches, pains and restricted duty.  Besides, the war had been over for many years and keeping up the fleet was becoming a thing of the past.  In their search, my parents found a small piece of God’s amazing planet, built their dream home and settled in to enjoy the rest of their lives.  We, three daughters and our husbands, could only have hoped that their fabulous retirement years extended into nearly a quarter century.  Little by little, however, Father Time collected his toll from both of them.  Dad developed several conditions including congestive heart failure and Mama had recovered from a broken hip and kidney stones, but was becoming a bit forgetful.

As a family, we would often organize and spend a weekend at their acre and a half, trimming, weeding and trying to keep up with the demands of their little farm — an impossible task — but a fun getaway for us and helpful to them.   All the while, they stubbornly stuck to the earlier declaration of living where they chose until they died.  Even though there was concern from friends, neighbors and their church leaders, we three sisters allowed our parents their own decision.  My two sisters lived in Washington state and so the responsibility of Mom and Dad was, basically, mine.

Mama still picked from her garden, canned fruit from their trees, froze a few vegetables, and the two took care of each other.  My father could still drive during the day so they met their doctor’s appointments, shopped in town for their needs and actually got along quite well.  My one sister and her husband came from Washington for a visit and decided while they were there, she would do some “scudding out.”  With my father’s permission, and while my mother was engaged elsewhere, my well-meaning sister took it upon herself to clear out what she believed to be “older” jars of fruit and canned goods.  Loading half of my mother’s summer efforts into the back of her car, she took it all to the dumps.  Among the loss was Mama’s favorite Raw Tomato Relish.

It wasn’t until my sister and her husband were gone that Mama went to her storage looking for a jar of her favorite relish and found the cupboards half bare.   Puzzled, she asked my father if he knew anything about the missing supply.  Reluctantly, Dad had to confess his part in the vanished jars, explaining my sister meant well and had promised to toss only out-dated storage.  Mama was not only furious, she was crushed at not being consulted; at being treated as less than a thinking, reasonable and responsible adult.   A person without value; a person who, in Mama’s eyes, was no longer respected.  “What are we,” she said, “if we have no value and no respect?”   Feeling betrayed by not only her daughter, but by her husband as well, she fell into a long period of depression.

Eventually, she came out of her sadness, buoyed up by forgiveness, and life resumed for the two of them.  I certainly wouldn’t imply that her forgetfulness escalated because of the incident, but she began to slip further and further away.  To compound her declining health and memory loss, she developed leg ulcers (not successfully treated at the time).   One October day, Ken and I drove up for a visit.  I found her sitting on the patio, enjoying the last bit of an Indian Summer and reading.  Her legs were outstretched on a lawn couch and I noticed she had been self-treating an ulcer on her ankle, but the entire leg was an angry red and swollen.  “Has Greg seen your leg?” I asked.  Greg was a local doctor who lived next door with his wife and two daughters.  The family was devoted to my parents.  While he was not their physician, he watched over them, suggesting at times they see their own PC.  I knocked on his door and asked if he would take a quick look at Mama’s leg.  “She has a bad case of cellulitis,” he said, “and she needs to be in the hospital, now.”

My father declined our invitation to come home with us while Mama was in the hospital claiming he could care for himself and if he needed something he had neighbors.  We made certain she was comfortable and cared for at their HMO in San Rafael before we headed home.  I called my father during the week and visited Mama as often as I could.  At week’s end she was well enough to go home.  As we entered their house my father sobbed like a child proclaiming his loneliness, admitting they needed to give up their wonderful home and move closer to us — not live with us — just be close.  He realized that he could no longer care for his wife without help, especially after acknowledging the fact that her dementia was Alzheimer’s.

We found a nice little house less than a mile from where Ken and I lived, only a telephone call away, a 15 minute walk or a quick ride.  After a time, and with my mother’s advancing AD they required live-in help in addition to what I could provide.  But I still managed their affairs, and understanding the importance of “being master of one’s own ship,” I allowed my father to believe he was the one in charge.  He reviewed the mail and studied the bank statement, a job which had been my mother’s all of their married life.  I doubt he understood what he was perusing, but doing so returned to him his sense of independence.  Dad was still in command — the head of his household.  I never made a decision without consulting him, never took away his authority which allowed him to be a person who stepped up to the plate, taking on the responsibility in providing for the care of his beloved wife until her death, at home in her 90th year.   He died six months later at home — also in his 90th year — a man of honor, a man of value and respect.

Originally posted 2009-08-25 08:26:49.

THE DINNER ROLL RECIPE

“It’s time for us to move back to the Bay Area,” said my father.  “We need to live closer to you — not with you — but near you.”  At 85 he finally admitted to himself that my mother was slipping away and she would need more care than he could provide.  Not yet diagnosed as having Alzheimer’s disease, she was showing all of the signs.  I had noticed her failing as well, but the decision to leave their lovely home located between Sebastopol, California and Bodega Bay which boarders the gentle Pacific had to be theirs.

The little farm as the family lovingly titled my parent’s retirement home had been a gathering place for more than 20 years and tradition at Thanksgiving.   All of that time she and my father bought the bird from a local turkey farm while the rest of us brought the side dishes.  The one thing, however, that no one even ventured to duplicate were the dinner rolls straight from Mama’s oven.

Whether the recipe was her own, her mother’s or one clipped from a magazine we never knew.  What we did know was the roll recipe was tucked away in her black, loose-leaf binder among the other clippings and hand-written cooking treasurers collected through all the years of her married life.  My sisters and I never asked for the recipe because the rolls were Mama’s speciality.  Being a wonderful cook she prepared other specialities as well when there was an occasion or if she felt inspired, but when she was busy, food was plain and simple, “and better for you in the long run,” she assured us.  So it was that we grew up experiencing a few culinary delights as well as steamed potatoes still in their jackets and vegetables cooked in “waterless” cookware.

With their final decision to move absolutely firm, Ken and I looked, and found, an ideal house for them just a few blocks from us.  Four months later I drove the two-hour trip to begin packing with the family coming the following week for the big move.  Mama saved everything.  My job with the help of my niece Denise was not only packing, but also included sorting through some 60-plus years of accumulation.  Dad’s job was to keep those empty boxes coming, and Mama’s job was to see that we were all fed and happy.  After all, she was a wonderful cook.

As we sat down for dinner Denise and I looked at one another with the same thought, “What is thisssss?”  Tasting did not answer the question.  Too much spice, too much salt and too much of whatever else it was that she found in her food supply which made up the mystery dish.  My father, who usually wolfed down his meals in a matter of minutes, ate everything on his plate, but it was an obvious effort, and because he was hungry.   Denise and I dabbled with our food then went back to packing.  Mama, we agreed, had forgotten how to cook.  Following that first night one of us worked with her preparing dinner and I told my dad that he would have to help Mama in the kitchen once they moved into their new home.  Either that or he would have to get used to guess-what dinners.  I had known that Alzheimer’s was stealing away my mother’s thoughts and memories, but I hadn’t realized it was stripping away her skills as well.

When I packed the kitchen supplies, I placed all of her cookbooks in one box, sealed it up realizing that it would be unlikely she would ever use them again.  At the new home I placed the box on a shelf in the garage, planning to glean the best of her recipes and to browse through the black binder at a later date.

The later date didn’t come until after she was gone.  Picking up the dilapidated binder I thought about the aroma of her freshly baked rolls which had beckoned us to the dinner table on so many memorable occasions.  Page by page I searched, but to no avail.  There was no recipe for the rolls I remembered.  Instead of being tucked away in a book it was no doubt tucked away somewhere in the corner of her mind.

Even after  nearly two decades I find that every so often a thought races through my head, “I’ll call Mama and ask her about …..?”  But just as quickly reality follows; Mama isn’t here and a thousand little questions will never have answers.  Nor will I ever make rolls as delicious as the ones she made.

Originally posted 2009-06-04 06:23:00.

LETTING IT GO

If we could look back on all of the people who have helped make up our life’s tapestry what would it look like?  Colorful, I’m sure — often brilliant in its scope and varied in texture.   Supposing all of those people were represented by a different color — not a racial thing — colors from the Crayola box and no one can choose the same color.  Now look to see how those colors come and go — in and out of our tapestry —  each entry bringing new vibrancy, contrast and dimension.   At times,  though, our people must pack up their color and move away, but there are times when the color is gone because of a misunderstanding, lack of compromise, anger, grievance or whatever?   The reasons friends and often family members leave our lives isn’t important.  It’s what we do about it that counts.  Do we hang on to the anger/frustration/hurt or do we let it go, and in letting it go is the loom of life left open for more weaving with those colors later on, or it is closed?

On that tapestry there is a major section where there are two dominating colors:  him and her — male and female — husband and wife.  There are times when those colors are bright and other times when they appear dull.  While it is natural to not always agree — and that’s all right — the colors can be dimmed even more over little neglects, hurts, offenses or lack of appreciation just to name a few of the myriad of complaints that are a part of two people living together.   Take note, however, this isn’t about the serious crimes in relationships and marriages which might bring about breaking up or divorce.  It’s about the little irritating (and sometimes not so little) things and about letting them go.  I suppose this is all about forgiveness.

In the beginning of our marriage I was, admittedly, a pouter.  And I was very good at it.  Whenever there was a slight (and believe me I can hardly recall what most of them were) I would pout for a while — perhaps even a day or two.   Ken agonized while I pouted and finally he would apologize.  That’s what I was after:  “I’m sorry.”  Not only did his words say what was important so did his big, sad, hazel eyes.  An apology was always followed by immediate forgiveness on my part.   We never exchanged harsh words or names, nor did we yell at one another.  I pouted and he apologized:  our m.o. for years and years.

One evening at our home after a neighbor secretly spiked our already delicious punch, Ken got a bit tipsy (along with several other unsuspecting guests).  Recognizing his carefree state of being he announced to everyone in the room that I was going to be really angry with him.  Then he added,  “Well, at least this time I’ll know what I did wrong.  I’ve been apologizing for the last 15 years and I never knew for what.”   After that declaration I took note.   When he offended me I told him immediately why I was angry.  Total communication.  I was mad and he knew why.  Furthermore, his apology didn’t come as quickly as they had in the past because he now had to recognize what he had done and make amends.  Pouting — perhaps.  Apology — probably.  Letting it go — forgiving — eventually.

Alzheimer’s has taught me differently — just let it go — now.   When you live on a roller coaster, emotions carry you to highs and lows you never thought possible.  At times I have seethed with frustration and often feel anger to a point where I have to leave the room over things my stricken husband says or does.  Then a few minutes or hours later when he has forgotten he’ll seek me out looking so bewildered and with sadness in his eyes will ask, “Did I do something to make you upset?”    I know he can’t help not remembering, he can’t help being arrogant at times, he can’t help lashing out at me in his own frustration.  Then I hear his words as he recognizes me once again and he says, “If I have upset you, I’m sorry.”  I am swept with a feeling of calm, and to my own surprise I can truthfully answer, “No.  You didn’t do anything wrong.  Everything is okay.”  I have learned to let it go even when there can be no apology.

As I review my life’s tapestry there are a few earlier threads which have clashed with my present color scheme and in retrospect I don’t miss their shades and hues.  My tapestry is beautiful without them.   The past is gone and all is forgiven.  It’s just a matter of letting go and remembering the advice of a dear friend who said, “True forgiveness is remembering without pain.”

Originally posted 2009-05-04 02:09:34.

BRIEF ENCOUNTER

Today I took Ken to our HMO for his monthly vitamin B12 shot, now a necessity in his life after having three feet of intestine removed about 12 years ago because of severe blockages caused by chronic Crohn’s disease.   He has done well in that avenue of his health, but as memory continues to fail, he becomes resistant about me taking him in for the shots.   When I can catch him in the right personality he comes with me willingly, almost remembering how he teases the girls in the lab with his Navy-days tattoos.

I pulled a number and we sat down to wait our turn.   Sitting close by in a wheel chair a merry sort of man struck up a conversation.  I could see that he had lost his foot and a good portion of the lower leg.  A few minutes into the exchange I thought to myself, another victim of Alzheimer’s.  He and Ken chatted back and forth enjoying their moment.  I heard the man mention his wife as he motioned toward the desk.  I assumed she was signing in for him.  She was, and momentarily appeared from around the corner looking a bit startled that we were all talking.

She looked around Ken and over to me mouthing the word:  Alzheimer’s.  I knowingly nodded pointing to Ken and said, “Him too.”    We did not exchange names although I wish we had.  As our conversation continued  I observed that the man was nice looking, possibly with a mid-European background.  His olive complexion was in excellent condition and nearly wrinkle-free.  Mrs. Merry man appeared to share a similar heritage, yet she looked drawn and weary without the same sparkle in her eyes as he had in his, but after all she was the caregiver.

I asked how long he had been afflicted.  She answered, “Four years.”  “Five for me,” I said.  Commenting on his jovial manner I continued, “Is your husband always this happy?”  The woman rolled her eyes and I said, “Nor is he,” nodding again toward Ken.

The nurse called the merry man’s name and he rolled himself into the lab.  She and I continued to talk with Ken still sitting between us.  “My husband is also diabetic and has lost his foot,” she said.   “This makes it even more difficult to care for him, but we persevere.”  “Are there times when he forgets that it’s gone?” I asked.  She nodded.  Like us they had children who do what they can.

We concluded our short acquaintance as her husband rolled himself out from the lab, joking now with the laughing nurses.  I could see such similarities in both of our men.  Had we four met a few years back I wondered if we might have become friends or was it the disease that made me feel a kinship with her.   As she took hold of the chair handles I couldn’t help asking one more question, “He looks so good,” I said.  “How old is he?”  “72.”    “Wow,” I exclaimed.  “That’s young to be where he is.  Ken is 82.”

I thought of her later — and him.   Did they have any time to enjoy retirement?   Had they traveled at all?  Did they get to do any of those things they may have dreamed of when planning for those “Golden Years?”   This terrible disease steals lives, marriages and futures.  Between these two men there are nine years of lost productivity, contributions to society and just plain living.  Alzheimer’s is no respecter of persons or of age and I still feel anger that it’s taken the medical profession so long to begin research.  Research that could have started in 1906 when Dr. Alzheimer’s wrote his first paper.   What did it take to finally get their attention?   An epidemic?  Or is it that people of note are becoming afflicted?  While I am grateful for the research underway it’s too little and too late for Ken, Mr. Merry and countless others.

Originally posted 2009-04-10 05:50:01.

BROTHER-SISTER TUG-OF-WAR

Ken is sleeping longer now, but by ten in the morning I begin the waking process.  Opening our bedroom door and with my best cheery voice I call out, “Wake up sleepy head, it’s shower day.”   Moving across the room to pull up the blinds I am greeted with a grunt.   “Shower day,” I repeat.   “Not today,” he grumbled.  That’s a first from a guy who once showered twice on a warm and sweaty day.   “Okay,” I tell him, “it’s all right stay in bed a little longer.”

I was certain that when I returned in 10 to 15 minutes and suggested showering again he would be ready and willing.  He did not.  Taking his jeans and shirt into the bathroom, he shaved and dressed.  The next morning I went through the same routine, but again there was no shower.  He made excuses such as, “Why should I shower, I’m not dirty.”  It wasn’t two days, it was actually three because I have been scheduling his shower every other day.

I’m never really sure which of Ken’s three personalities I am waking in the morning?   Is it Ken, Mr. Hyde or is it Buddy?  All three are grumpy, but before Alzheimer’s Ken would have been up for hours.   Gradually the disease has put an end to Ken as a morning person and to make matters worse, he has developed shingles.  The sporadic pain plagues him with a vengeance all through his back and across the front of his upper torso.  The doctor tells me that when older people get the ailment it  usually stays the rest of their life.  It would appear that’s the case with Ken.

No matter which of the three personalities are present in the morning he still complains about pain.   In an effort to bring him some comfort, I tell him how sorry I am that he hurts.  He answers with, “It’s not your fault.”   Hoping to change his shower refusal to “yes,” I counter, “The warm water will make you feel better.”  And actually it does, but he answers, “No it won’t and it’s not your back.”   I leave him alone and return later to try again.  He is insistent, “No.”  It’s day four without a shower.  “You’re beginning to stink,” I tell him as he passes me in the hall fully dressed.”  “So do you,” he shoots back.  “No I don’t.  I took my shower.”  I’m losing this battle and I’m not sure what to do next about his personal hygiene.

It’s day five without a shower and Sunday.  Sleeping as late as he does we haven’t been getting to church.  In the past when I have greeted him with, “We’re going to church, you had better shower and shave,” he was always willing to shower before getting into his “good” clothes.   Even in his demented state he wanted to be at his best to enter the Lord’s house.

This particular Sunday I too slept late.  As we lay in bed I mentioned that we had been invited to our daughter’s house for an early dinner.  “You had better take a shower,” I said.  “Why?” he questioned.   “Because we’re going out and you need to be clean.  Remember?”  He thought for a moment then said, “I’ll see what mommie wants me to do.”  With that I knew he was 12-year-old Buddy, and possibly an even younger Buddy with his reference to  “mommie.”   Picking up on the clue I decided it might be in my best interest to take on a third personality for myself; that of his sister, Loretta.  I began, “Mom left me in charge today and she said I was to see that you took a shower.”  So, in addition to Carla, Mr. Hyde’s housekeeper/cook/caregiver; I am also Loretta, Buddy’s older, bossy sister.   Apparently, it all worked.  Buddy took a shower.

The shower problem might have been just a phase, a momentary pause in his personal care routine, but to be on the safe side I now suggest that he shower every morning.   It’s for certain that he won’t comply on a daily basis —  and if  he does that’s all right.   If not, then at least my chances of success are considerably increased.   Furthermore, when Buddy is present, I have also decided to take on the role of Loretta  and make every effort to address him as “Buddy” rather than Ken.  He seems to take comfort in hearing the “family” reference.   The top advantage of my being Loretta is that it will give me the authority to answer any “Why” questions.  As the big sister in charge I can just say, “Because mom said so!”

Originally posted 2009-03-16 05:05:58.

JUST BECAUSE

Tonight I made cookies, something I haven’t done for a while.  Why would I start baking after dinner?   Did I have a sweet tooth now that all of the Christmas goodies are gone?    Or was it that Ken really enjoys dessert and I didn’t have anything on hand.  Actually, I don’t really know.  I suppose I could say, “Because.”   

Whenever I hear the word “because” used as an answer I am reminded of  a time when my children were young and they thought it was the end-all answer to everything.   There were four of them then: Debbie our oldest, Julie our second, Kevin, our first boy, and then Keith who was the baby (for a while). 

The two older girls had been involved in doing something rather naughty but now, after all this time, I don’t even remember what it was.  Nevertheless, they were being scolded by a very irate mom (me).  Looking down on their innocent faces all three looked up at this  giant of a woman (from their very short vantage point) shaking her finger and asking the universal question, “Why did you do that?”  They were speechless.  Kevin, while not involved, looked at the twosome with great concerned eyes.  Again, I asked, “Why?”  No answer.  Then Kevin elbowed his sister and whispered his advice.  “Because.”  Hearing no response, he whispered it once again but with more emphasis, “Because.”  His thoughtful wisdom had shattered my annoyance.  I walked away; incident transformed into a muffled laugh.

I mixed the cookie batter adding all the good things in the recipe.  Ken came wandering into the kitchen, looked into the bowl and smiled, “Cookies?”  For that moment, he was so my husband.   Being sly, just the way he had been during all of those years in the past he reached into the bowl and pinched off a bit of dough.   “Mmmmm,” he said, “good.”  And from the past I said, “They’ll be better when they’re baked.”  “I can wait,” he replied, pinching off another bite.

So why did I bake cookies tonight?  I was pleasantly rewarded by a sweet moment, but I suppose that in this life we do a lot of things just “because.”

Originally posted 2009-02-02 07:06:28.

HAPPY ANNIVERSARY

It’s January 21, 2009 which is Ken’s and my wedding anniversary.  During the day he took turns being any one of his three personalities — as usual. Some time around 4:00 he seemed to be Ken so I asked if he would like to go for dinner and, perhaps, a movie to celebrate our anniversary.  He looked at me with a questioning smile then asked,  “When did that happen?”  “A long time ago,” I answered, but mention food and he is ready to go.

We went to a small, intimate restaurant owned by our daughter, Julie, which during these economic times is struggling to stay open.  We sat in what has become my favorite corner and ordered dinner — a small dinner.  He becomes agitated when he has to wait very long for anything.  Usually we have been going to some fast food places where he gets instant food.  Even before our meal arrived he became Mr. Hyde and wanted to hurry because he had to get home for his wife who should be home from work.  I rushed as much as I could, considering it was hot soup, telling him we would leave as soon as I finished my dinner.  He began pacing around the restaurant and I could see that he was becoming agitated.  Rather than have him bother the other customers, I decided it best to leave.   Asking for the check our server said it had been taken care of.  Leaving a tip on the table I picked up my coat and purse and peeked into the kitchen saying,  “Thanks for dinner, Julie.”   “Happy anniversary,” she sighed, and we left.

Son-in-law Tim caught us as we were driving out of the parking lot.  “I thought you were going to hang for a little while,” he said.  “No,” I replied.  “Ken has to get home to find his wife.  I came with my husband, but shortly after we arrived the evening turned into a real bummer of a blind date.”   Try a little humor, I thought, to cover the pain.  We said our good evenings and I drove home.  I cried all the way.  Ken didn’t notice.

Foolish woman, I thought to myself.  I knew better.  What did I expect?  Perhaps a miracle — a lucid evening — when he would remember who we were and our life together.  It didn’t happen.  Of course not.  After five years, his Alzheimer’s is well advanced.   On his blog, Dr. David, mentioned “a rotting mind.”   I have called it the same thing and it might as well be as there are hardly any reference points remaining; just a mass of tangles and plaque.   It’s almost as if my husband has died and I’m taking care of  what’s left.   However, I know  I am fortunate that I can still care for him at home.  I just won’t plan — or expect — any romantic evenings with my husband.  But every so often, when the sun is bright,  he will remember just a little and ask, “You know what?”  “What?” I answer.  “I love you.”  It’s not an evening out, nor will it fill the whole day, but for a moment I have my husband back.

Originally posted 2009-01-30 06:14:02.

Sign-up For Our Newsletter

Sign-up for our free newsletter and receive expert tips from Ann Romick, a woman who has cared for 4 different family members with Alzheimer's over a span of 30 years. Be the first to get notification of her forthcoming book, Journey Into the Fog, based on her experiences.

We respect your email privacy

Email Marketing by AWeber