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The Twilight Years Are Here

The Twilight Years Are Here
Showing posts with label behavior. Show all posts
Showing posts with label behavior. Show all posts

Wednesday, July 31, 2013

5 Things to NEVER Say to Someone With Alzheimer's




The following link gives some great advice that would be beneficial to any caregiver dealing with Alzheimer's/Dementia, as well as the person they are caring for...

http://www.huffingtonpost.com/marie-marley/5-things-to-never-say-to-a-person-with-alzheimers_b_3662958.html?utm_hp_ref=caregiving

Monday, October 15, 2012

"Why Won't You Let Me Go?"


Escalating Agitation Born of Confusion

“Who are you?”
“What are you doing?”
“Why are you touching me?”
“Get away,” (slap, slap, slap)
“Stop!” (slap, slap, slap) “Stop!”
(struggle, slap, struggle) “Help! Call the police!”
“Get me a phone they are holding me hostage…”


(Sob) “I want my Mommy. Please.”
(shaky hand grips my wrist)
“Why won’t you let me see her?”
“Why are you doing this to me?”
(shaky hand wipes wet eyes)
“I just want to go home.” (body shudders once)
“Why won’t you let me go?”


Momentary Leap Into the World of Lucidity

“What time is it?”
(struggling attempt to rise)
“What can I do to help you today?”
(eyes focus on me, clear and comprehending)
“I miss my wife.”
“Do you think I will ever get to see her again?”
“How did everything get so fucked up?”


(shaky hand reaches for me)
“I know you didn’t sign up for this.” (sigh)
“I don’t understand why you have stayed.”
“I want you to know I’d be dead without you.”
(squeeze tightly) “Please don’t leave me, okay?”
(eyes search mine) “Can I ask you a question?”
“Why won’t you let me go?”

Sunday, April 3, 2011

Back With Things to Say

April 2, 2011

I am the first to admit it's been a while. I apologize to my readers and I apologize to myself. So much has happened since last August. I realized today that I haven't been able to write because I have been too bogged down in the day-to-day chaos of just living here. I am going to give a quick overview and tell you that Dad has been hospitalized 3 times since Aug. Once for Crohn's Disease, once for dehydration and once for his heart. Last Oct. his oldest living daughter (and one of my dearest friends EVER) died very unexpectedly and our lives again were shattered. Ironically, Dad's Alzheimer's provided him protection from the realities of it all.

Living with someone who suffers from Dementia/Alzheimer's is similar to living in a war ravaged third world country. Unpredictability and instability become the norm. At any given moment, (with no rhyme or reason) anyone can be seen as the enemy and suddenly clarity ceases to exist. It happens in the blink of an eye. Being the caregiver of someone who is completely irrational at times and requires 24/7 care is without a doubt the most frustrating, exasperating and exhausting role I have ever taken on. But the times when it is satisfying, fulfilling and rewarding makes it all worth it. Unfortunately, there is absolutely no way to find such a thing as balance when dealing with Dementia.

In essence, I am dealing with an 89 year old child most days. Frequently, he is aware that he is misbehaving but is unable to control the behavior. And if he misbehaves, his illness enables him to forget it the moment anything happens. I am firmly convinced that most of the negative behavior he exhibits is born of his overwhelming sense of frustration. The limitations that have been imposed on him by his many physical ailments, his age, and his mental instability are taking a friendly, out-going, active, humorous, hard working, life loving man and making him a shell of his former self. (Though, I have to admit, he still has an awesome sense of humor at times!) He is so seldom animated anymore that I have to be grudgingly grateful for even the bad behaviors.

Here, I'll give you an example. When we left our last doctor's appointment the other day, Dad insisted on collapsing his walker and putting it in the back seat of the car unaided. I stood by helplessly watching his struggle. After several minutes, I stepped forward to help. Out of nowhere, I received a forearm across my chest that sent me reeling backward. Dad turned to me shaking with rage and yelled, "I can f-ing do it myself!" His frustration mounted as he continued to fight with walker and I stood terrified he was going to give himself a heart attack with the strain. A couple of minutes later, he finally got it shoved in (in a position that put a wheel directly into the back of my head).
For so many reasons, I wanted to rest my head on the steering wheel and cry. My frustration at it all enabled me to see his frustration so much more clearly than I already do. Those are the moments when I can hear my heart crack a bit more in the surrounding silence. As I started the car, I glanced over at him. On his face I could clearly see his pride, his sense of accomplishment in having successfully accomplished a task he had set for himself. And I could feel the crack slowly beginning to heal.

Wednesday, May 19, 2010

Oh, What a Night

May 17, 2010

Dad has been very quiet today and it is obvious that he is not feeling well. He ate a good breakfast but he went to sit in his chair immediately after. He went back and forth between the chair and lying down on his bed until lunchtime. He ate a good lunch and promptly went to lie down.
I repeatedly told him all day that we had a doctor appointment at 3:15 with his primary physician. So when it was time to leave we slowly made our way into the car and off. The speed limit in the Village is 15 mph most of the way. The instant I inched it up to 17, Dad started lecturing me, “The neighbors want things a certain way here. You can’t go speeding through the Village and not expect somebody to bitch about it.”
I kept it at a steady 17 mph until the limit went up to 23 mph. I wasn’t trying to antagonize him, but I didn’t have my foot on the gas pedal and I didn’t feel like riding the brake. He fussed all the way to the front gate (exactly 1 mile from the house). As we were turning out onto the Hwy, he asked me how much it was going to cost to bury Mom. I explained that he had already paid for everything.
He suggested I call our pastor and ask him when he thought Mom should be buried. As soon as I agreed he announced, “I guess it’s kind of crazy to keep her sitting on the dresser (it’s actually on top of a large free standing jewelry chest). I just kind of like having her there. Tell Pastor Pete I think we should get her in the ground.”
I told him we would do it all however he wanted things done. I repeated everything I had discussed with the pastor about it the last time I spoke to him.
“Well, maybe, as soon as we get everything paid off, you can put us both in the ground. I want to be buried next to your mother as soon as it’s paid off.”
“Dad,” I said calmly. “Mom’s is already paid off. You don’t owe any more money for anything including burial. Yours is being paid for by the accountant every month. And you could easily be alive when it gets paid off. I can’t promise to bury you as soon as you pay it off.”
“But once I pay it off, there won’t be a reason to hang around. So I’m just going to have to see how long it will take to pay everything off,” he made it sound eerily feasible. “Then I will know when it’s ok for me to die.”


The subject dropped there as we finally arrived. Dad insists on loading and unloading his walker from the car. He isn’t capable of it most of the time but he is a gentleman and it rankles him to have a “girl” do it for him. Today was no exception. He struggled to unload it, pushing me out of the way, until he got light headed. He refused to use the ramp and he refused my help picking it up over the curb. When I opened doors for him, he tried to insist I go through first.
He was acting out in a rather childlike manner when we sat down in the waiting room. I offered him a magazine. He declined. He began fidgeting and glanced around the room making a variety of noises for several minutes before he suddenly exclaimed, “Oh, SHIT!”
All six of the other people in the room turned to look at him, me included.
“Dad, what’s wrong?” I asked softly.
He pointed to his feet. “I guess I should have put my shoes on to come here.”
I smiled at his slippers and touched his arm. Several people around us smiled and looked away. “I’m sure it’s ok. At least you are comfortable, right?”
“I didn’t even notice it…” his eyes were clear for a moment and infinitely sad.


He turned away and resumed his fidgeting and noise making until we were called to the back. We went into the room where he gets weighed and he proceeded to begin to unzip his pants. As he reached to push them down, the nurse laughed gently and asked him what he was doing.
He shook his head as if to clear away the fog and zipped up his pants before stepping on the scale. The nurse glanced at me with a question in her eyes. I shrugged while shaking my head. My expression clearly said, “It’s just one of those days.”
In the examining room, his blood pressure was taken. I saw the nurse’s concern and asked what it was. 108/47 and his pulse was 49… still too low. The doctor came in and did the biopsy on his cheek. When he finished, he cauterized it. When he was finished he looked over Dad’s hands and arms and decided to do a second biopsy on his wrist, he cauterized that one as well. With Dad’s bleeding history, he didn’t want to take any chances.


On the way home, Dad asked what we were supposed to do with Mom. I asked him what he wanted to do with her. “I really don’t know,” he replied. “I like having her in my room with me. But somehow, I think she is supposed to be buried. How am I supposed to know what to do?”
“Dad, you have to do whatever feels right to you. And you don’t have to decide today. It’s all paid for, so whenever you want to, we can bury her. And if you want her with you, that’s ok, too. I promise, if that’s what you want, I will bury you both at the same time.”
He looked at me as relief washed over his face. “Then I won’t decide today,” he declared as he sat back lost in thought for the rest of the ride.


After dinner, I changed the dressings on Dad’s arm, and on his biopsy sites. I was relieved to finally see signs of healing (after only 10 days this time). As I rose from the table to throw away the mountain of trash that accompanies dressing changes, Cameryn came running into the room.
“Nonni, G’dad said don’t put anything away. Jordyn cut his foot really bad and you got to bandage him up when he’s done washing it.”
I hurried to the bathroom to find Jordyn running water on his bloody foot. As soon as it was clean, we headed for the dining room table to bandage him up. I assessed the cut, knowing he needed stitches but positive I could steri-strip it and he would be fine. I was right so it didn’t take long to patch him up.
As soon as I finished with him, I noticed Ayla curled up in a chair in the living room. I asked her if she was sleepy. She shook her head no and made a funny sound. I looked up at Melissa who asked if she was ok. The words were barely out of her mouth before Ayla threw up all over the chair. Thankfully, it turned out to just be an upset stomach and she has been fine since. Wow, what a night…