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Posts Tagged ‘distance’

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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risks ahead

There are many risks ahead for both caregivers and victims of Alzheimer's.

“Everyone is different,” said my friend, Madalyn, whenever I tried to compare Ken with her husband, Darwin, whose body succumbed to death from its own ills even as his brain deteriorated with Alzheimer’s. Darwin developed AD a few years before Ken so I suppose it was natural for me to look for some kind of gage to compare their journeys. What I was to learn, though, is that AD does not follow a precise pattern like the common cold which is usually gone in two weeks – or 14 days – if you take good care of yourself: a solid time frame if there are no complications. I wanted something like that: road signs, directions and distance as my gage so I could be better prepared for what was to come. AD doesn’t work that way. Rather than gages, I got stages: mild, intermediate and severe cognitive loss, and that’s about as good as it gets even though it still doesn’t allow us, caregivers and family, to determine the approximate sickness location until the evidence is blatant. The brain and its deterioration process are still too much of a mystery.

As we watch our loved ones slip further and further into the depths of The Devil’s disease we can only guess – with input from the neurologist — at the three stages, and when they slip from one into the other there is not much of a sign – nothing dramatic – until one day you realize the patient has moved from mild to intermediate, and somewhere down the line to severe. And in observing the changes, I have come to agree with Madalyn. Everyone is different. So is the first tale-tale sign that something may be going wrong with someone we love.

Ken’s mom and dad were our first experience with Alzheimer’s, but as I have mentioned before absolute diagnosis in the late 1970s could only be determined with an autopsy. None of our medical people suggested it be done after they passed, nor did we make the request. However, that was all right because we didn’t need absolute proof; we knew what we had witnessed. An enemy from within had destroyed their brain and it wasn’t as simple as senility or old age. It’s now, in retrospect, that I search my own memory in an effort to recall some of those first signs which may have hinted to what awfulness lay ahead.

UNREASONABLE: In many relationships unreasonable would be a shot in the dark as far as determining a disease such as Alzheimer’s. Ken’s father, Nick, could be a stubborn man, even unreasonable at times, being the patriarch of the family with a lifetime of independence and dogged responsibility, a world traveler, eight years in the Marines, a strong union member, leader and officer he still managed to remain open for discussion. Then he began to change. The episode I remember, which was beyond reason, had to do with the simplicity of watching television during the Summer Olympics somewhere in the mid to late 1970s.

“What are those young women wearing,” he complained while watching the gymnastic performances. “They may as well be naked. You would never see young women from Yugoslavia wearing something like that.”

Tito was still in power at the time, and while Nick hailed from an area which had been part of Austria, it became part of the new state under Tito. Therefore, 60 years after his immigration he considered himself from Yugoslavia, and was proud of the modesty and decorum of the country’s women – not like the shameless women from other nations, including the U.S.A.

“Dad,” protested Ken, “Yugoslavia is participating in this segment of the Olympics and all of the young women are wearing body suits. You’ll see that when Yugoslavia’s team competes.”

“Never!” grumbled Nick. “Our young women would never dress like that.” Seeing was not believing; Yugoslavia’s team appeared in body suits and participated. Nick was unaccepting saying they must be interlopers, not really from his former country. Ken’s further discussion was waved aside as Nick sliced his hand through the air ending Ken’s participation.

Even though the program had moved on to other events, Nick wouldn’t let the lack of modest attire go. Gymnastics were forgotten, but immodesty prevailed in many forms including swim suits. Ken and I talked about it on the way home, remarking how stubborn and set in his ways he was getting, and now he was to the point where no one could tell him anything. Nothing was up for discussion. He knew it all and his word was law. It was only in retrospect and continuing evidence that we had to accept as fact that something was happening to the man we had known so long. His mind was no longer functioning as it once did.

“You don’t know anything.” “Leave that alone.” “Don’t let the boy (our grandson) do that. He’ll get hurt.” “Leave me alone.” “No! I don’t need to shower.” “I don’t have to change my clothes. They’re not dirty.” “Put the lamps on the floor. If we have an earthquake they’ll crash through the window.” “I wear my coat and hat in the house because I might get cold.” “They tricked me so I lost my driver’s license.” No matter how we tried talking with him, Nick became more and more confused and unreasonable.

The diagnosis of AD was ours and arrived at some years following his death. It quickly surpassed what Rose was suffering from, and yet we still didn’t know what it was, nor did we know what to do. Wearing too many clothes, he collapsed on hot days and was taken to the hospital with the paramedics explaining he had become overheated. The doctors determined he was just getting old and demented, suggesting we find a good care facility for him. We did. He died a week later.

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