acceptance

Blessings In Disguise

Ken, Mabel and his daughters Julie and Debbie and daughters-in-law, Mary and Sabina at his 80th birthday 2005

This is, possibly, my last guest post. My mom should be back here writing next week – or soon thereafter.  Debbie Schultz

One of the blessings that came from my turn at caregiving was a chance to become reacquainted with my dad. Obviously he is not the strong, but gentle man, who raised me, helped me through a divorce, get back into school, and proudly watched me graduate from college at the age of 41. This man is definitely different, interesting in his babbling, making sense only in fragments. He was always a great storyteller, but even that aspect is gone from his tangled brain. I see his personality in layers. Some of the facial expressions I remember as a little girl, the mannerisms are still there. When I first arrived here from my home in Utah, he was lying in a hospital bed, mumbling in heavily sedated sleep. He seemed so very old and vulnerable to me. I softly stroked his head and muttered my good byes, thinking that might be the end. But like my mother, he has a tremendous will to live, and two weeks out of the hospital, he is gradually becoming his old pre-accident, self.

The disease is horrifying, taking a person a bit at a time, but in a somewhat detached way, it is also fascinating. What makes a personality? What bits and pieces of one’s history stick, and why do they stick? What jogs memories? Why do some things stand out, while others are forgotten? When asked, he will say he has no children. He confuses me with my mother, but I correct him and tell him that I am his daughter and I love him. I  especially use the technique when I am doing things he doesn’t want done, like showers. Looking in his eyes and telling him seems to calm him. I call it speaking spirit to spirit. And when my daughter goes to move something of mine, he says, “Don’t touch that, it’s my daughter’s.” For a brief moment I am remembered.

He knows he was in an accident. The first few days he was home from the hospital he complained about being stiff and sore. He told me that he hurt because a truck hit him. He knows, when he remembers, that my mother is in the hospital. His love for her, despite the forgetfulness is so evident. Besides often asking where his wife is, there is wistfulness in his wanderings. He sleeps on his side of the bed, waiting for her to come. He asks me if she is working and if so, when will she return home?   Although my voice may sound the same, my reactions are different than hers. He is confused by the similarities.

I am grateful for the opportunity that I have been given to get to know my father all over again. I have more feelings for him as I have served him these past few months. I miss the man that he once was, but I love this frail, funny, shuffling person he has become. Who knows why we go through the things we do in this life? As hateful as this disease is, it often brings out the best in the people that it touches. I have gained a new appreciation for my mother and all she has gone through as she cared for the other members of our family, who were also struck down by Alzheimer’s. The positive side of this negative situation is the opportunity I have been given to serve my father and make some effort to understand what has happened to change him. Without caring for him, there would not have been the reconnection I have felt.  When he is truly gone I will not only mourn the man my father was, I will also mourn who he has become. I am indebted for the chance that I got to know that other man.

Originally posted 2010-04-28 03:39:46.

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: WHEN THE DAUGHTER BECOMES THE MOTHER

adult-child silohuette

It’s a heart-rending transition, but when does it happen that the parent becomes a child and the child becomes the parent?

 

 

 

 

 

May 11, 2012 — There is never a set time for this exchange to happen.  It’s not like turning 18 when you’re miraculously transformed into a legal adult or being 21 and you can toss the phony ID before entering certain establishments previously forbidden, nor is it anything like having that first baby when the full glory of inescapable motherhood is thrust upon you.  The mother becoming the child and the child becoming the mother is an act of acceptance and compassion on the part of the child and never sought after by either adult.  Furthermore, not every child has the calling, challenge or even the temperament to accept the transition.  It’s a journey stumbled into as the older mother slips into a need either through old age, poor health or falls under the dreaded umbrella of dementia, which in our family is and has been  Alzheimer’s disease.

SO….  WHEN?

Was it when my mother, Irene, broke a hip and the doctor forbad her climbing any more ladders.  She had planned on painting the kitchen and felt frustrated at not being able to follow her schedule. To get the job done and soothe her jangled nerves my sister Janet and I painted it for her.  With her strong, but recovering, body and equally sound mind it wasn’t then that Janet nor I stepped forward to become our mother’s caregiver.  Mom wasn’t ready. We weren’t ready either nor had the thought even passed through out minds.  Perhaps it was a few years later  in the car when I suddenly braked and my protective arm flew out across her chest as I had automatically done for my children before seat belts.  Could that have been a beginning or was it when at 85 my mother began to lose touch with reality.

The stats tell us that if we live long enough one half of the population will have AD. In the case of my parents, the stats were right on target.  My father was as sound as the dollar had been long ago, and it was he who made the decision to leave their beautiful country home in Sonoma County, California and move closer to us on the east side of San Francisco’s bay because he could see his beloved wife of nearly 65 years slipping away.  “I don’t want to live with you,” he proclaimed as we searched for their new home, “We just need to be near you.”

ILLS AND BROKEN HIPS

They did well by themselves in the house nearby which was a 15-minute walk or a quick ride for Ken and me.  I saw them every day and whenever Dad called which was the case one evening when the phone rang.  “I think Mama broke her other hip,” he stated.  Already deep into forgetting, the recovery took longer than it should and she never really regained what was lost. Previously, she and I had taken short walks through the neighborhood.  No longer steady on her feet I pushed her along the same route in a wheel chair. Had I become the mother then?  Or was it when I helped her get ready for bed, or pulled a comb through her tangled hair and she screamed like a young banshee, and I scolded her? Could it have been when she needed to be checked by her p.c. and I held her hand during the exam, or the time before they moved when she had a painful kidney stone and I worried about possible surgery?  Was she the child and I the mother? Continue reading

Originally posted 2012-05-12 20:14:42.

ALZHEIMER’S, HEALTH AND ANGER

Angry man

Anger is a part of Alzheimer’s, and is present in both caregivers and AD victims.

April 20, 2012 — Do Alzheimer’s patients get angry?  Absolutely!  However, I see Ken’s anger is more of a defense mechanism – a reaction to an immediate situation he can’t control: he growls,  hisses, grumbles, or shouts profanity and can be combative as part of the anger he spews upon me, Ben or Crizaldo when he feels threatened or doesn’t understand what’s happening, and then it’s quickly dismissed – usually.  He doesn’t hold onto it because his anger isn’t the same anger he may have felt when he was well, or even in the mild cognitive stage of his Alzheimer’s. Continue reading

Originally posted 2012-04-21 05:34:14.

FINDING JOY IN SERVICE

Young hand with older hand

The helping hand of service comes to young and old alike.

“Do I have to go?” whined my 14-year-old son Keith, hanging up the phone.  “Go where?” I asked. “And who was on the phone?”  “It’s that old guy from church.  He reminded me that I’ve been assigned to be his junior companion,” he continued.  “We’re supposed to go visit some more old people to make sure they’re all right.”

Although his description was lacking in cheerful good manners and enthusiasm, I had to admit it was honest and somewhat accurate.  I smiled in spite of myself knowing what he was talking about and I also knew who had called.  In our church, the goal is to have every member visited by another lay member of the congregation, representing clergy, on a monthly basis to make sure that all is well in the home, and to leave the family, or member, with a Gospel message.  The old guy to whom Keith had referred, those many years ago, was about the same age as Ken, and each old guy had a junior companion called to do this “duty” at age 14.

“You don’t have to go,” I reminded him.  “You do have a choice, but you know you should go — and with a willing heart.  It really won’t take very long, and guess what?  When you’re finished you will feel good about yourself because you have extended service to those who may be in need.  Perhaps just your visit and concern will bring someone a bit of unexpected happiness.”

It wasn’t as if he hadn’t grown up doing good deeds and giving service.  He was a wonderfully thoughtful young man.  Helping his grandparents on their little farm out of Sebastopol was service, but it was also something he wanted to do.  Carrying in groceries for a neighbor was what he chose to do.  Being kind and doing favors for others was part of his nature. Being a junior companion was an assignment by clergy, and different from what had been familiar. He wasn’t really certain if it would fit into his comfort zone.  It was also a step up the ladder in extending service.  Nevertheless, he also understood he was free to accept or refuse the assignment.  When the doorbell rang, though, he greeted his senior companion with a smile and a hardy handshake.

An hour or so later Keith popped back into the room wearing a happy face, and informing me that he “Kinda liked the old guy.”  Then he added, “You’re right mom.  I do feel good and I’m glad I went.”

Whatever the ingredient that makes us feel good following service to others appears to be a mystery; must be some kind of magic that fills our soul and lifts our spirit.  Or, possibly, it isn’t a mystery at all, nor is it magic. Wasn’t Jesus the example for extending service as He healed the sick, paused to give counsel to the wayward, blessed the children, caused the blind to see – the crippled to walk, and cured the lepers?  Could it be that our hearts are somehow touched by His Spirit when giving Christ-like service?

Many are drawn to serving others through career choices: doctors, nurses, health care providers and caregiver professionals just to name a few, but that isn’t the service to which I am referring – although greatly needed and appreciated.  It’s the giving of service without compensation that is true charity: service such as provided by the valiant sisters of the order and Mother Teresa.  While we all can’t dedicate a lifetime to mankind, it’s that spirit of charity which needs to be embraced.  For many, however, this kind of understanding, learning and making it all a part of our lives is a process.

Granddaughter Kristina and her boyfriend Chris had dropped in Valentine’s evening to say hello and stayed for dinner with me and Ken. Then they were off, but not to a party.  Instead the two visited with a disabled couple she had worked for during the past year.  A few days later she told me it was the nicest Valentine’s Day ever.  I asked her what she did that made it so special.  “I spent it with some people I love,” she answered, smiling at me.  I gave her an extra hug saying that I loved her too — and brushed away a tear.

Was her grandfather fun? Was I fun?  How about the disabled couple?  I doubt any of the four of us were a barrel of laughs.  Yet, she felt good about the visits, and I said to me, “She is learning.”  It tells us in Proverbs, “Your own soul is nourished when you are kind.”

So it is as we journey through life we mature and appreciate that our time here needs balance and is made better by many experiences, both good and bad.  It is never made whole with only pleasure and fun.  Actually, it’s just the opposite beginning with some kind of sacrifice —  extending the hand of help and service that helps build our firm foundation – the most important part of us for a truly balanced life.

Admittedly, there are times when we feel we are out of balance.  When the weight of what seems to be never-ending adversity causes us to wonder and ask, “Why me?”  The old axiom, “You have to keep on doing it ‘till you get it right” might be funny when applied to justifying your bank statement, but caring for someone stricken with the likes of AD seems to make one crumble in frustration of doing the same thing day after day wondering if you’ll ever get it right.  Will there will ever be “a time for me “ – a time when this weight will be lifted?  Maybe “yes” maybe “no,” but it’s in that interim where we can concentrate on and accept “what is,” savoring the positive which can come from the negative: the positive being the building of our own strengths and character.  Have I arrived at this destination?  Goodness no, but I’m striving daily in that direction.

Ken and I are into the eighth year in our battle with Alzheimer’s, and I’ve come to accept it as the way of our life for as long as it lasts.  His mind is without memory or reason, but his physical health is very good.  Through these past years I have felt the highs and lows of just about every emotion I can name, gnashing my teeth, shedding tears (I still do), and pounding my fist into a pillow (not anymore) with little changing except Ken’s AD becoming worse. I am certain most caregivers have felt the same anger, frustration and defeat until they reach up to Him who can bless them with peace.

As acceptance became a focal point for me I have learned to be more relaxed, relying on another sage bit of advice, “Let go and let God.”  I strive to do that for I know I am not alone.  I know that my Lord is with me bringing comfort when I despair and guiding me along this rocky path.

I am constantly learning and looking for new ways to be more helpful to the man I married; the man to whom I promised my love through sickness and health, and to care for him in his time of need.

In my role as caregiver, delivering service to Ken who has been my loving companion for more than 5 decades I am reminded, and will quote once again one of my favorite scripture passages.  This one from Matthew when Jesus said, “For I was hungered, and ye gave me meat; I was thirsty, and ye gave me drink.  I was a stranger, and ye took me in, naked, and ye clothed me; I was sick, and ye visited me. I was in prison, and ye came unto me.

Then shall the righteous answered him, saying, Lord, when saw we thee and hungered, and fed thee? Or thirsty and gave thee drink?  When saw we thee a stranger and took thee in? Or naked, and clothed thee? Or when saw we thee sick, or in prison, and came unto thee?  And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”

Originally posted 2011-03-28 02:51:22.

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