The Twilight Years Are Here

The Twilight Years Are Here

Friday, October 28, 2011

Control Thy Anger

October 28, 2011

Yesterday, Dad yelled at Jordyn. I had just picked the kids up from the bus stop and sent them upstairs to fix an after-school snack. I stopped to cycle laundry. Suddenly, I heard Dad’s voice, obviously agitated. I stopped what I was doing and headed upstairs. Dad asked Jordyn, “What is that?” as I came around the corner. Jordyn said, “What, Pop, the microwave?”
I was just in time to see Dad whirl around and step in front of Jordyn. “Don’t be disrespectful, Smartass, I know that’s a f#*king microwave. What is it?” Jordyn was obviously confused by the question. Before I could move to intervene, Dad got toe-to-toe & face-to-face with him. “I will not tolerate you being a smartass to me, Boy!”

As he raised a hand, I stepped in between them, pushing Jordyn behind me. “Dad, he wasn’t being a smartass or being disrespectful. Please stop yelling at him. He doesn’t know what you are asking. Did you mean what he’s cooking?”
His fury was turned my way and I was shocked to see that he was shaking with suppressed rage. “You stay the hell out of this! This is between me and that big kid. I am not going to have anyone being disrespectful to me in my house. You are always sticking up for him and I won’t have it!”

I turned away and moved across the kitchen as he ranted. He suddenly yelled, “Who the hell do you think you are?”
I turned to make sure the question was aimed at me. “I know exactly who I am. I am the person who loves you all. I am the person who is here to take care of you. I am the person who takes care of these children and I am not going to let you treat them this way. They always show you respect, maybe you should try showing them some respect too. I love you but I am not going to tolerate YOU behaving like this to them.” By then, I was starting to shake and I was afraid I would begin to cry so I turned my back to him.

He shouted, “Now you’re being disrespectful to me!”
“You’re right, I am! The difference is, I am an adult. I have a right to show disrespect to another adult. They are children and have to be respectful of you ALL the time. And they are. You think it’s ok to treat them like this because they are children. So while you are telling us what you won’t tolerate in YOUR house, I want us to be clear about what I will not TOLERATE with my grandchildren! Are we clear on THAT?”
Dad stuck his chin out belligerently and said, “I’m hungry. All these kids have food and nobody fixed me anything to eat.”
I sighed, feeling like the root of the problem had just come to light. I began making him a sandwich as he climbed up in a chair at the bar. As quickly as it began, it was over and once I gave him his food, he was complacent again. He ate without speaking then went to his room for a nap as if nothing had happened at all.

Now this is the point that where I admit to being ashamed at myself for raising my voice to him. I am fully aware that his disease directly causes his behaviors and I know I shouldn’t get upset. Trying to balance children and the elderly is hard enough without having Alzheimer’s in the bargain. I am supposed to be the responsible adult around here and I let the disease beat me down for a moment.

This morning when Dad got up, I sat down beside him and put my head on his shoulder. I wanted desperately to apologize for yesterday’s outburst but doubted he would even remember it. I was floored when he stroked my hair and said softly, “I’m sorry I made you mad at me. I never want to make you mad, ever. You are my right arm and I wouldn’t be alive without you. I’m not sure what I did this time but I’m sorry I did it. Ok?”

I looked at him in amazement, “I’m not mad at you, Dad. I love you. And I shouldn’t have yelled at you yesterday.”
“Yesterday?” he asked. “I was talking about our argument this morning.” I didn’t even bother to point out that I had just gotten home from work and he had just gotten up so we were seeing each other for the first time today. I just smiled and asked if he was ready for some breakfast.

Monday, October 17, 2011


October 17, 2011

Fixated. Such a simple little word but it has the ability to drive a caregiver crazy. With Alzheimer’s comes the single-minded focus of fixating on something until it is the only thing you can think about, talk about or worry about. It can be a real problem or an imaginary one. It can be something big or it can be something so small a normal person would never even give it a second thought. The only way to deal with it is to just plain deal with it. You have to find a way to put their mind at rest (until they find something else to fixate on). Above all else, you have to reach to the depths of your soul to find a source of strength and patience to draw from.
Dad has an atypical fibroxanthoma (AFX). It is a rare cutaneous spindle-cell neoplasm, malignant tumor on the top of his head. With him, the concern comes in because he suffers from rapid growth skin cancers. He has been diagnosed, over the years, with every type of skin cancer there is and in every case, they have grown at super human speed. Right now, it is the object of his fixation.
“When are they going to do something about this thing on my head?” Dad asks this question 100 times a day.
100 times a day I reply, “Nov. 7th.”
“What is it? I don’t understand why they can’t just cut the damn thing off and get it over with.” His questions and comments regarding the whole situation seldom vary.
I have explained repeatedly that they are going to have to do a particular type of surgery (Moh’s) and that was the earliest they could schedule it. What I don’t explain to him is the concerns related to me by the doctor. The tumor is large and they believe it has infiltrated the outer portion of his skull. The surgery will be trickier than most but it will be successful. They will get it all… they always do. Odds are in favor that we will discover another spot of cancer that will need to be removed… we always do.
So far today he has already asked me about it twice and he’s only been up for an hour. I will continue to pray for patience as I give him the same old answers. I will look forward to Nov. 8th when he will awaken and ask me what the bandages on his head are for. In fact, I think for today, I will simply look forward and smile.

Dealing With Doo Doo

October 12, 2011

I spent an entire week buried in feces recently… and dealing with dementia. My mother had her knee surgery, finally. I went to stay with her and my grandmother to care for them. I was home for a week and it’s the longest I have been home since my Granddaddy died in the early 90’s. I can’t begin to explain how much things have changed there.
Grandmama is 92 now and her daily routine consists of being physically lifted from the bed in the morning to be stripped and bathed while she sits on the potty. For a tiny little woman that can wet herself from head-to-toe during the night, she can still be impressive before bath time is over. Really, the volume of liquids she loses puts a lot of beer drinkers to shame. While she is being bathed, all of her bedding and sleepwear goes into the wash. She is dried thoroughly, medicated and bandaged as needed (her skin spontaneously breaks now and causes bleeding which creates a huge risk of infection. All potential bedsores are treated at first sign and constantly).
When she is dressed for the day, she is moved to her recliner and handed a cup of coffee (1/2 decaf) and she takes her 1st pill of the day. She has a good breakfast (seriously, she really eats well for somebody so little), which she feeds herself. It takes a while, but she does manage to do it on her own most days. When she is done, she usually sleeps until lunchtime.
Lunch is served in the kitchen and Grandmama is wheeled to the table in a wheelchair. At this point in the day, she has to be helped to eat. It is a combined effort between her, Mama (me if I’m there) and the certified nursing assistants (cna’s) that come in for part of every day. She is fed more than she eats on her own at lunch. After lunch, she is put to bed for the rest of the day… and night. Bless her dear heart. She can’t handle being up any longer than that. For all intents and purposes, she is bedridden now.
I was startled at how alert she seemed early in the day, most days. As the days progressed, she became less and less coherent. Near bedtime, she was completely out of it most of the time. Yet again, I was seeing another form of dementia. I can’t help wondering how many different types I will be exposed to in my lifetime… how many types there actually are. Never mind, I don’t want to know the answer.
One morning in particular, she managed to cover me, the floor, herself, the potty chair and everything else within reach in feces (she had a raging case of diarrhea). In all fairness, I deal in blood and all other bodily excrements frequently. They are a nearly daily part of my life. I handle it pretty darn well. But, I must admit, I have an extremely weak stomach 1st thing in the morning. I got Grandmama up (wet head-to-toe literally, the odor was beyond belief) and to the potty, gagging the entire time. No sooner was the diaper down than she pooped all over the floor, my leg and foot. There I was desperately working to get her cleaned up, gagging to the point my stomach was killing me while apologizing over my shoulder to Mama for my reaction. I felt completely overwhelmed and helpless in the moment.

It has hit me quite hard that I am deeply frightened by that which (God willing) is yet to come here with Dad. Mama has 2 cna’s, Hospice doctors, nurses and cna’s, and a sitter to help her out (THANK GOD!). I have nobody. Melissa and Richard will help all they can but when it comes to the worst of it, I will be on my own. The best I can hope for is bringing Hospice in at the end and I know exactly how much help that is. Wow, I said it out loud, “I’m really scared!”
Being with Grandmama made me realize so much. Mostly, I have discovered I am not afraid of my own failures. I am terrified of letting them down, all the people I love and feel the need to take care of. I don’t want them to feel for a second that I can’t take care of them properly and with due dignity. I felt that I wasn’t taking care of her properly when I was holding Grandmama to my heart as my stomach lurched beyond my control. I felt that I was stripping her of her dignity because I couldn’t control my reaction to something so basic.

The day after my return home, Dad had an unusually bad attack of irritable bowels (with Crohn’s Disease this is VERY common). He excused himself from the dinner table to go to the bathroom and was gone for almost 20 minutes. When he came back to the table, he hung his head like a shameful child and told me there was a big mess “in one of the bathrooms up here”. I asked which bathroom and he mumbled, “Mine but I’m going to clean it up.” I assured him I’d take care of it and told him to finish his meal.
His bathroom looked like a war zone. Every available surface needed to be cleaned. He had attempted to do it himself. As a result, every towel had been used to either try to wipe up places or simply laid over some of the worst of it. I was shocked to realize it was even on the ceiling.
Holding my breath, I was on my hands and knees cleaning the floor when I heard someone behind me in the doorway. I turned to see Dad standing there with tears in his eyes, “I’m sorry. I tried to clean it up. You shouldn’t have to do it.” I jumped to my feet and washed my hands before gently guiding him back to the table. I assured him that it was alright. Accidents just happen sometimes. His loss of dignity in the moment crushed the breath from me.
I couldn’t stop the tears of frustration that slid down my cheeks as I resumed scraping and scrubbing the mess up. And another little piece of my heart broke at the reality of what we are facing here.
On the bright side, when I returned to the living room, Dad looked up from his chair, “Where have you been, Sweetheart? I was sitting here missing you.” Sometimes the best part of this disease is the ability to forget…