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Archive for the ‘help’ Category

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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My adult children were relieved when they were told that Ken and I would, ultimately, with time, rest and therapy; recover physically following our automobile accident last February.  There were no guarantees, but the prognosis was good. While I remained in intensive care for a week, and then was transferred to our HMO facility, Ken was released from the hospital in five days. Weakened and changed by the accident and his stay, the volunteer wheeled him from the hospital to the waiting car while Debbie took photos of him each step of the way as he struggled from hospital care, to car, to walker and up our driveway.

“I don’t want those pictures all over Face Book,” instructed our son, Keith, who had stepped into the role of CEO for the family during my absence.  Needing to do what needed to be done, he outlined a course of duties, assignments and restrictions for each of our five grown children.  “Dad’s been through enough without having him look less than who he is, less of the man than who he was.  There is no need for the entire world to see him on the Internet as he looks right now.  My father deserves better.”

I doubt if it was the intent of Debbie to display Ken for everyone to see.  She knew her already disease-stricken father had received a double whammy with the accident piling more traumas on top of his already debilitating problems.  The photos were for family.

Not only is Keith a fixer of whatever is broken he is also a fiercely private person: kind, compassionate, sympathetic, and more – empathetic and beyond – as he often steps quietly out of his comfort zone to “lift up” his fellow man.  At the same time, don’t cross him, because he can draw a line in the sand which is not to be crossed or treaded upon.

He also has a motto, “Never put anything in writing unless you don’t care who sees it or reads it.” That goes for photos as well. I agree with him totally.  Many times those feathers – words, photos — which have been cast carelessly into the wind, may at times, manage to flutter back and “bite you in the butt.”

I read a lot about Alzheimer’s from many sources, always looking for how others are managing, new ways and encouragement on how to be a better caregiver – a better person — even though life becomes more and more difficult as the disease progresses.  I also read various blogs about many of the diseases under the Dementia Umbrella.  They all touch my heart, some deeper than others bringing tears to my eyes, especially those who are victims of Early-Onset Alzheimer’s:  Young people, some still in their 30s, who have a lifetime before them with growing families, goals to accomplish and careers to fulfill; their lives — never to reach full realization; their minds — never to reach full potential, and through it all I read of a devoted spouse, adult child or relative, any of whom is often the author of the work.

When I was younger, one of my neighbors called and asked if I could help with her husband.  Stan was in the last stages of cancer and she was caring for him at home.  Other than medical people helping with showers, Val was his sole caregiver except when she might need aid from a friend or neighbor.  “I just need some help turning him,” she explained.  I was glad to be of service.  I could see she was quite capable of caring for him by herself as his disease had ravaged his emaciated body to where nothing was left except skin and bones.  He greeted me, even managed to mumble, “Thank you,” as Val and I carefully shifted him from one side to the other.  Her work with him was such an act of love.   Watching them together, I marveled as she chattered in answer to his bits of labored conversation.  She continued fussing over him, with Stan thanking her profusely for doing for him those things which he could no longer do for himself.

Looking around I noticed the house was immaculate, as always.  I used to tell Ken that Val was so clean she even swept the dust from the dirt in the backyard.  Keeping it all up, she must have been exhausted, yet, never did I hear her complain or tell about some of the dreadfully unpleasant duties her care giving demanded.

Stan was her third husband – the third one she would bury – nursing all of them through their various ills until death led them away and Val was able to pick up the pieces and move on.  Even when she spoke of the first two men in her life and their illnesses, it was without complaint – and no details.  She never mentioned what it was that took each of them only that she was the caregiver.  While Ken and I were filled with admiration, we were much too young to be totally appreciative of her efforts, neither of us having experienced the overwhelming and extensive effort she had performed.  Val chose that those years of caring were to be her memories – unshared – unspoken.

No matter what the illness, there are aspects of caring for the infirmed which are, to say the least, extremely difficult – private – and, perhaps better left unsaid – unwritten.   That’s been my decision whenever I write anything about Ken and our shared journey through this disease; I always ask myself this question, “If I were the one who was ill, would I want him to share each and every facet of my failing health on his blog, with society and all of the neighbors?” My answer would be, “No.  Please — be discrete.”  Discretion is the word I keep in mind.

Someday, after it’s all over, and Ken has been laid to rest – the Lord willing as often the caregiver goes first — I want him remembered for who he was, not for what the monster AD has done to him. Long ago I decided that everything – every labor of this journey – every detail of caregiving — will not be posted on my watch.  As Keith has said, “My father deserves better.”  So does my husband.

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