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Posts Tagged ‘peace’

Decorated Christmas Tree

Even something as simple as putting up the Christmas tree could be a great help for Alzhiemer's caregivers.

In my last writing, I touched on attitude from those who might not feel the “necessity” of being part of a loved one or a friend’s journey into and through the Alzheimer’s experience because they couldn’t deal with it emotionally.  My response was simple:  “It isn’t about you.”

However, I thought it might be good to share some thoughts from other people.  I did receive a few comments from those who read what I wrote, and I find it amazing that this “attitude” is so common out there, but for various reasons.  Attitude is often what might drive a wedge through a loving family splitting them apart, or a supportive attitude and effort can pull that family closer together.

I also read an article from The Alzheimer’s Reading Room by Bob DeMarco where he asked several questions as to how a caregiver might feel when confronted with someone near and dear having the disease.  His last question, which really wasn’t a question, went something like, “Your life in caring for someone with Alzheimer’s has remained the same and has been unaffected with no complications.”  The first word out of my mouth was, “Ha!”  I wondered if Bob meant it as a joke or it had slipped by him in error.  More than likely it was a tongue-in-cheek attention getter.  Trust me, it got my attention and my dander standing straight up.  How can anyone who even has a remote relationship with an AD victim remain unaffected?  Then I went on to read some of the comments, various blogs, and mused previous conversations I’ve had with people.  I marvel at how different we all can be given similar circumstances.  The following are some excuses heard by not only myself, but by friends and family members:

     1.  Fear:  Friends or even family members may have some kind of distorted, sub-conscious fear that the disease is catching.  They may also fear that the caregiver might ask them to help.

     2Jealousy:  From a long-ago conversation, “Mom and Dad appointed you to be in charge of their health care, so do it.”  With that kind of attitude, it looks as if Mom and Dad were right.

     3.  Distance:  “I wish we could be more helpful, but we live so far away.”  As a retired couple, Mr. and Mrs. Wishwecould take lots of vacations, and always stop by to visit the folks for a few days and make a big fuss over AD Dad and Mom.  At least, that’s a good thing.  Could they do more?  Certainly. The Wishwecoulds need to extend their vacation for several days and suggest that the caregivers plan a respite during that time while they take on the responsibility of the folks for a few days – or more.  And, the caregivers need to assert themselves and make the suggestion if the offer isn’t forthcoming.

     4.  But I work:  Don’t we all, it’s just that many caregivers don’t get paid.  Even people who work have holidays and weekends.  They might even have some personal time coming, and then there is after work time as well.  I’m sure some kind of relief and/or help schedule could be worked out.  Caregiving isn’t an easy time for anyone.

     5.  But I do help: “Didn’t I bring you up to speed with the latest report on AD research?  Have I not become an expert on the disease?  Just ask me anything.  What?  You mean you want me to help clean him up?  Change his diaper?  Stay here with him while you go to the bank and do a few errands?  No. I’ll do my thing and you do yours.  Did I tell you what I just learned about AD on the internet?”

     6.  But I’ll give you my opinion:  “I really think you should put him in a home.  That’s where he belongs.  I don’t believe you know what you’re doing, and he could be a danger to himself and others.  After all, what experience have you had?  The neighbors think so too.”

     7.  Too educated to help:   “The adult children are either in higher education or have graduated, often appearing to be ‘above it all’ when it comes to actual help.  If they do anything at all, they become short-tempered with me and give me eye rolls at how I’m handling things at home.”

     8.  But what can I do?  When AD is diagnosed, there isn’t much to do, but as time goes on there are any number of things people can do to help.  Several years ago I was doing fine, and then my granddaughter, Katie, asked what she could do for me.  I said, truthfully, that there wasn’t much I needed.  Then she asked if she could help me put up the Christmas tree.  “That would be wonderful,” was my response.  And she did.  Several days after the holiday she called to ask if she could help take it down.  She did that too.  For those wondering what you can do, just offering to do some little thing might be the biggest help of all.

     9.  It’s all about me:  Those remarks I made in the last writing also apply, but they’ve been pretty much covered.  “It hurts me too much to see loved ones ill or in the hospital.  It’s too depressing.  I just can’t deal with it.”

    10.  I’m sorry, I just didn’t realize.  Actually, that’s not a cop-out.  Some people really don’t see the whole picture, so it is up to the caregiver to speak out.  Get beyond being hurt because you’re not getting the help you need.  Sometimes we, as caregivers, just have to humble ourselves and ask.  Furthermore, and after all is said and done, it’s important to be forgiving to those who just don’t “get it.”

I received a beautiful and positive comment on The Rusting Years from Chessa who responded by telling me that she was so glad she was there for her grandmother and now, after grandma has passed, she was able to write, “I often thank the Lord for no regrets of ‘should’ve’s’ ‘could’ve’s’….. only peace in knowing ‘we did.’”

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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, 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 he 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.”

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