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…

Friday, September 23, 2011

One Week Into The New Medication

Sept. 23, 2011

Well, Dad has been on his new Alzheimer’s medication (Namenda) for a week now. The only real changes I have seen so far, is he sleeps ALL the time. I was told from the beginning that it takes 30 days to get into the system properly and once it’s leveled out, then and only then, will we see any results from it (if we even do). It can’t happen soon enough in my book.
I took Dad to the doctor on Wed. for 4 biopsies. Leaving the house for anything has become very stressful for him. I can only assume that’s what led to his outrageous behavior. On the way to the doctor, we were stopped at a red light and Dad got impatient. He kept shouting, “Go, Buddy!” to the car in front of us. When he didn’t move, Dad leaned over and laid on the car horn. I pointed out that he couldn’t go until the arrow turned green and gently removed his hand. Dad stared out the side window like a pouting child until we began to move. He honestly had no concept of what was happening.
When I was helping him out of the car, he grabbed my breast and said, “I’ve been wanting to do that for a long time. Nice set you got there.” He meant no offense and I took none though it took me by complete surprise. I simply thanked him and pointed out we were late for our appointment. Sometimes, it’s just best to stay calm and let these things pass.
He says and does things lately that make no sense. When a nurse left the room at one point, he announced quite loudly, “You know, she would be pretty if she wasn’t so fat! It makes you wonder if she ever looks in a mirror. ” I tried to shush him because I knew she had to have heard him. I wanted desperately to apologize for his outspoken behavior but I never got the chance. Sometimes, I wish I had a neon sign that would announce to the world, “HE’S NOT MEAN. HE HAS ALZHEIMER’S”! I’ve discovered that people are a lot more tolerant when they understand that he doesn’t understand.
He was never completely clear for the rest of the afternoon and evening but he kind of plodded through til bedtime. After sleeping for a couple of hours, he got up and went to the kitchen to make a bowl of cereal. Halfway through the process, he went to his chair and fell asleep. I went to check on him when I heard him stirring again in the kitchen a short while later.
He was sitting at the bar, painstakingly eating his cereal one shaky, slow bite at a time. I sat down beside him and asked if he was ok. He shook his head and said, “I don’t know where I’ve been or what has happened to me the last few hours. Why can’t I remember anything?”
I am asked this rather frequently and I still find it no easier to explain to him. I tell him it’s his illness. I tell him it makes him forget. I tell him I love him and will be his memory. There is nothing I can say to alleviate his confusion and anxiety.

He is anxious because he knows I am going out of town next week. He understands that my mom is having surgery and I need to go take care of her and my grandmother. But, he is gravely concerned about how he will get along without me for a whole week. Since I moved here, we have never been apart for so long. To be honest, I am worried about his behavior while I’m gone. Since he has become unpredictable at best, he could easily be harder to handle in my absence. I need to be with MY family. I need to be able to help my mom. But I need to know that Dad is as ok as he can be. Maybe I need too much. (sigh)
All I can do is keep reassuring him that he can call me anytime he wants to. I keep my cell phone number attached to the phone so he can always reach me if I’m not here. He is more likely to call me when I’m in another part of the house or out in the yard than he is when I’m out of town. Sometimes he swears he hasn’t seen me all day when I have been out of sight for less than 10 minutes. What I have to do is assure myself he will be in hands that are almost as good as mine (my daughter, Melissa, will be caring for him). She knows what to do, and if she doesn’t, she will call me. I have to do what I have to do and simply pray that all goes well for everyone. As you can see, I'm a bit anxious about it myself. Because...
It is never easy.

Thursday, September 15, 2011


September 15, 2011

On Tuesday, we had an appointment with Dad’s primary physician. The pharmacy called him for a prescription refill and he needed to see Dad before he could write it. I was shocked to realize we hadn’t been in to see him since last March! For the fist time in longer than I can remember, Dad’s health has been so stable. We go to a number of specialists… cardiologist, urologist, oncologist, hematologist, gastroenterologist, dermatologist… they monitor what’s going on in their particular fields but his primary keeps an overall picture on his health and mental state.

I went in armed with a list of observations and minor concerns. It didn’t take long for the doctor to decide it’s time for us to add another Alzheimer’s medication to the lengthy list of daily meds. While his health has been stabilizing, his mental state has been rapidly deteriorating.

On Wednesday, we started Namenda (Memantine). ***Memantine is used to treat the symptoms of Alzheimer's disease. Memantine is in a class of medications called NMDA receptor antagonists. It works by decreasing abnormal activity in the brain. Memantine can help people with Alzheimer's disease to think more clearly and perform daily activities more easily, but it is not a cure and does not stop the progression of the disease. (courtesy of PubMedHealth) ***Note that it must be used in conjunction with other Alzheimer’s medications (most frequently, Aricept).

Since it will take 30 days to get the full effects from it, I am watching Dad closely for any changes as well as possible side effects. I hope it can help him (even if it’s only for a little while). Dad is unable to perform the simplest of tasks now. For example, if he decides to take the trash out he may take the can to the back porch and empty it but forget to bring it back inside. Or he may bring it back to the kitchen but forget to put a trash bag in it. Twice he has attempted to put the big swinging lid into the dishwasher and once I found a full bag of trash sitting on his bed. Another example, he tries to set the table but asks at least 4 or 5 times, “How many of us will there be for dinner?” NEVER will there be an entirely correct table setting. Napkins, forks, spoons, (we only use knives when it’s absolutely necessary with Dad and 4 kids at the table) glasses, etc. something is always missing somewhere. And there is a 50/50 chance that he will simply wander back to his chair in the living room mid-task, forgetting what he was doing. To relieve his embarrassment and frustration, the boys go behind him and correct each place as needed and they now make the drinks for everyone.

It is so frustrating to be in the kitchen trying to get dinner for 7 or 8 people ready and hear, “Let me know if there is anything I can do to help!” dozens of time each evening. Knowing that there truly isn’t anything he can do to help without him getting frustrated and confused which leads to hostility and anger. With Alzheimer’s, you are in a constant no-win situation. I can’t imagine anyone who is sweeter or wants more to help than Dad. He is grateful for all that I do and tells me repeatedly every day. He tries so hard to do what he thinks is the right thing, and like a child, he glows under praise and positive reinforcement.

I am hoping this medication will help him enough to allow me to assign simple tasks to him. He NEEDS to feel useful. It gives him purpose and makes him feel like he is a functioning member of our household. It helps to keep him connected. Moderate Severe Stage Alzheimer’s comes equipped with disassociation and my goal is to keep him connected with every aspect of life for as long as possible. Our road is hard but we are walking it together and as long as he lives, I will continue to have HOPE. Hope that he can have a few more really good days and a few less really bad days. Hope that I can slow down the progression of his disease. Hope that he will always know that he is loved…

Sunday, September 11, 2011

Memory of 9/11

September 11, 2011

It’s getting so much harder lately. We can count on daily delusions, only the subject matter and duration vary. Dad is entirely too aware of his own confusion and disorientation, making it that much harder to deal with. How do you convince someone they aren’t going crazy when in essence they are?

We spent the morning together, mostly talking about 9/11. He knew exactly what the date meant and was sharp in his memories of the events of that day 10 years ago. He can’t tell you when his wife died (April 2010) or how many of his children are alive (3 out of 5) or which ones of his children have died (Melinda & Susan) or what he ate for dinner last night or what he did 2 minutes ago… but he remembers the Attack on the USA. He is disgusted we are still at war.

Several times he has stated today, “WWII was a real war! We went in, kicked ass and got out of there. I just don’t understand why this war isn’t over. It’s ridiculous!” And, “What are we going to do about that president of ours? This is a sad day and our country is in a very sad place as a whole. I’m sorry I lived to see this.”

I went out on the front porch when he decided to read the morning paper. When I came in 15 minutes later he asked if I knew it was Sept 11th. I said I did and he asked if I had slept well. In his mind the day was just starting. 20 minutes later, he asked Richard if I was “alright” because he hadn’t seen me yet today.

I am thankful we had a morning of clarity and that he shared that time with me. But it makes me sad that it is a memory for me alone. The days of shared memories is gone now for Dad… along with so, so much more.

Thursday, September 8, 2011

Delusional Day

Sept. 8, 2011

Hi there. I know it’s been a long time since I’ve written but life has basically been controlling me, instead of me controlling it. I spent the last couple of months working 12-16 hours a night, 7 nights a week, (as a caretaker no less). Funny how nice the change of pace has been. I kept the kids while Melissa, my daughter, worked and was with Dad during most of his “awake” hours. Then Melissa was here over night for them all. But, for now, the long nights are over and I am moving to VERY part time.

With Melissa and I having 2 weeks off, I have been able to spend hours on end with Dad. I am here watching him and I am shocked at his obvious slide downhill. We spent the morning together. Several times he told me he felt sick to his stomach. I repeatedly asked if it was nausea or diarrhea (he has Crohn’s disease that causes debilitating diarrhea constantly). He insisted it was just nausea. He decided to go “lie down for an hour”. I put some leftover chicken on to boil so I could make him some soup for lunch. Less than 30 minutes later he was back, exclaiming that he hadn’t meant to sleep so long! When I told him it had only been a few minutes he asked, “Why are you working here today? I thought the other girl was working. Aren’t you supposed to be somewhere else today? When was the last time I paid you?”
My heart sank as I realized he didn’t know who I was. He was obviously confused about where he was as well. Looking out the kitchen window, he asked if we had been getting a lot of rain because it was beginning to form a lake out back. There is an app. 60-acre lake behind the house!

As soon as he finished lunch, he went to lie down again. When he got up, he was more confused than ever. He thumbed through the phone book looking for a listing for an old friend that died a couple of years ago. He insisted he had seen her this morning and she told him she was moving away. He HAD to call her before she did. I still don’t think he is convinced that he hasn’t left the house today (except to get the newspaper this morning). I tried explaining it must have been a dream. To which he shook his head and said repeatedly that he was losing his mind, “I know it. You know it. You’re just too nice to tell me.”

Dad had an accident in the bathroom and had to call me to help him clean it up. He hates asking but he simply can’t do it himself. I was cleaning the toilet, floor and walls when he started talking about events that had happened today. None of them were real. I gently pointed out that he hadn’t gone anywhere today. He asked if I knew he was having “not dreams… not hallucinations…”
“Delusions?” I asked.
“Yes, I’m delusional and I don’t know why. I am seeing things and doing things and going places and it all seems so real. You keep telling me it isn’t real and I believe you because I trust you. That means I’m either going crazy or I’m delusional, right?”
All I can do is hug him and wish that he were less aware of what is happening to him. I urged him to get dressed while I finished cleaning up. On my hands and knees, scrubbing the floor, tears slid down my face.

Here I sit, calm at last, gathering strength to go upstairs and make dinner for 7. I can’t help wondering if he will know who I am by then. It’s a pretty safe bet that he will be unable to grasp the familial connection of his granddaughter and great-grandchildren. But, I can guarantee he will ask, “Is there anything I can do to help you?” at least a dozen times before I can get dinner to the table. He will ask, “where everyone is” at least twice because Richard is at work (the only person missing tonight). He will also stare at Ayla and remark that she is just too “C-U-T-E!” He will frown with displeasure at one or both of the older boys before the meal is over. And, he will look at Melissa in confusion, as if he’s never seen her before. Some things about his disease are entirely too predictable.

Turns out he asked if he could help 23 times but the rest were right on the money. He is argumentative and disoriented but he is blissfully watching the Saints game now. Thank God for the NFL! As long as he has football to watch he is at least content… which buys me a bit of respite from this day.

Friday, June 10, 2011

Top 5 Security Objects Favored by People With Alzheimer's (courtesy of

By Paula Spencer, senior editor
Last updated: April 12, 2011

Holding a security object can be calming to someone in the later stages of dementia. Don't insist that the person engage with the object (although he or she might, and that's great). Just having it around to see or hold provides the emotional link to a better mood.

You might be surprised by what works for your loved one. Some leading favorites:

Soft objects, such as a favorite shawl or a textured blanket

Animals, such as a real pet or a stuffed animal; they provide tactile pleasure

An object representative of the person's past: a newspaper, a briefcase, or a tennis ball for someone who once used these things every day, or a baby doll for a mother

A simple everyday item, such as glasses, a purse, a hat, or a watch

A photograph: Less common, since the person in the image is apt to be forgotten (but people have been known to grow attached to the frame itself)

Thursday, June 2, 2011

A Little Advice

For those who are caring for a loved one with Alzheimer’s:

I make a point of going away for a couple of days every few months. My daughter stays here while I am gone (she is a paid elderly caregiver and Dad responds well to her). I call it recharging my batteries. In my case, I go home to visit my mother and my 92 yr old grandmother, the 2 most influential women in my life. While I’m there, it allows my mother to take a break from caring for my grandmother and gives me an opportunity to spend time with my grandmother. It may not sound like much of a break to most people but it's what works for me. Figure out what works for you then do it, regularly. Preferably before you have a melt down.

Do something for yourself. Make time for yourself. Take care of yourself. It's way too easy to run yourself into the ground when you are providing the kind of care we do.

You can't help the irritation or the frustration you feel. It's a part of our lives. Imagine how frustrating it must be from the person with Alzheimer’s. Alzheimer's is the most frustrating disease I know and that's all there is to it. The trick is to find ways to deal with YOUR angst. Even if it means having someone else come in for a few hours so you can remove yourself from the situation. I frequently run to the grocery store or the pharmacy when my husband is at home just to get away from it all. Some days it's the only hour of the day that I'm not frustrated, irritated or exasperated. But I know it helps keep me sane.

It’s ok to hate the disease. Believe me, you will make mistakes. You are only human. Forgive yourself! What you are doing is the most selfless act of love anyone can ever do for another human being. Don’t judge yourself too harshly. Be your own best friend, not your own worst enemy.

Sunday, May 1, 2011

April 30, 2011

This past week has been emotionally charged beyond belief. On April 24th (Easter Sunday) we marked the 1year anniversary of Mom’s death. Now, 6 days later it is her birthday and the anniversary of her memorial service.
Dad asks daily, “What day is this?” or “What is today?” As he is asking, he is checking the day and date on his watch (as if to confirm that we are in agreement). On good days, he will only ask a few times. On bad days he may ask dozens of times.


I got up this morning to find Dad sitting silently in his chair. As soon as he saw me he said listlessly, “What day is this?” I replied around a sudden lump in my throat, “April 30th”. He took off his watch and looked at it, turning it this way and that, reading the date from every possible angle.
“There use to be something important that happened in April. I think it was on the 30th. It isn’t one of the kids birthdays because none of them were born in April.” He looked at me totally bewildered, “Why can’t I remember? I know it was something important.”
I swallowed hard and cleared my throat, choking out, “Dad, today was Mom’s birthday.”
“My mom’s birthday? No, I don’t think so. You mean your mom’s?”
I shook my head, “No. I mean your wife’s. Today is her birthday.”
The sadness oozed from his very being as he slumped further down in his recliner. A shaky hand wiped over his face. “I knew it was something important. How could I forget that?” He turned his pain-clouded eyes to mine, “I miss Del as much right this second as I did the day she died. How could I forget her birthday?”
I leaned down and hugged him, “It’s not your fault, Dad. Your illness just makes you forget things sometimes.”
He hugged me back, patting my hair and said, “I don’t want to forget her. Del was my whole life and I don’t know what to do without her but I know I don’t want to forget her.”
I wanted desperately to assure him that he wouldn’t. But in that moment, we both knew there is every possibility that is exactly what will happen. With tears filling my eyes, I walked into the kitchen to start a pot of coffee.

As the coffee maker began to drip, I asked Dad if he was ready for some breakfast. He said he thought he’d rather wait for a while. A couple of minutes later he came around the corner and asked, “Hey, Sweetheart, what day is this?”
“April 30th,” I answered quietly with my back to him.
“That’s right. I knew that.” He started back toward the living room, asking, “What’s next?”
“Nothing, Dad. We don’t have anything at all to do today. It’s Saturday.”
“Have you gotten the newspaper yet?” he asked as he sat back down in his chair.
“Not yet. Would you like me to go get it?”
“No, I’ll get it. It will give me something to do besides sitting around being homesick for my wife.”
I told him I thought it was a great idea. That I was sure a little fresh air would be good for him and it was shaping up to be a beautiful day outside.

He struggled from the chair and headed for the front door. “Dad, don’t forget your walker.” I called out to him as I poured myself a cup of coffee.
He turned around and snapped out, “I know that! I do NOT need you to remind me all the time! I am perfectly capable of remembering to use the damn thing. I am perfectly capable of remembering A G.D. LOT of things!”
He grabbed his walker, snatched it off the ground, turned back toward the door and thumped the wheels on the floor. Once again he started for the front door but just before he reached it, he turned and went down the hallway toward his bedroom.
After a few minutes he came back and asked if I had gotten the newspaper yet. I told him I hadn’t and suggested he might like to get it since it was such a lovely day. He immediately agreed as he started for the door. He reached to unlock the front door, looked over his shoulder at me and asked, “Sweetheart, what day is this?”


On the weekends I strip Dad’s bed and do his linens and laundry. Sweep and mop his bedroom and bathroom, etc. Dad is very proud that he makes his bed every day. Since this is a function that he has appeared to maintain quite well, I only ever do it when he is ill or on laundry day. I had noticed that it was even neater than usual this past week.
I went to strip his bed and the top quilt was turned back (highly unusual). I picked up the pillows on his side of the bed and stood there staring in disbelief. The bed had OBVIOUSLY not been turned down since I had made it last weekend. I was floored.

I went into the living room and sat down beside Dad. “Hey, Dad, can I ask you a question?”
“Of course.”
“Is there a reason you haven’t slept under your sheets this week?
He smiled a most serene and charming smile, “Sure. I figured if I didn’t mess it up nobody would have to make it up and nobody would have to do laundry. I was trying to help you. Did I do something wrong?”


I was cleaning the upstairs bathrooms, I had just finished the toilet, sink and tub in the boys room and gone to do Dad’s before finishing picking up both bathrooms. On my knees cleaning the toilet, I heard Dad say from behind me, “Oh, shit.”
I apologized and said he could get in here I could easily come back and finish later. He insisted he would just go use the other bathroom.
Almost 30 minutes later, I finished and took the wastebasket with me to empty. Dad was sitting in his recliner calmly flipping through a magazine. As I approached him, he glanced up. “I’ve just been sitting here looking at this magazine I found in the front bathroom. It’s rather interesting.” I leaned down to see what he was reading when he said matter-of-factly, “I think some of these girls might be sluts.”

As he said it, he angled the cover so I could clearly see it. Dad noticed me looking and told me, “It’s called Hooters. They seem to like to show them off too. I wouldn’t usually look at something like this but at least it helps pass the time.”
I smiled and nodded as I went to the kitchen. Dad continued to flip through the pages. When he got to the end of it, he turned it back to the front cover and casually began going through it again. Periodically, he would make little comments under his breath. I was delighted to see something capture his attention for so long.

He mentioned it a couple of times, “I found this magazine in the front bathroom. It’s called Hooters. I’m not sure what to do with it.”
I decided I would put it up somewhere when he left the room (out of sight, out of mind) but when he finally did, the magazine was nowhere to be found. And I’m certainly not going to ask him about it.

One thing is definite, there is seldom a dull moment with Dad around! (see picture toward bottom of the page)

Friday, April 29, 2011

Hold Onto It

April 28, 2011

I’ve said it before and I am going to say it again, “You can not reason with a demented mind. It is absolutely, positively impossible.” I promise you that any attempts to do so will result in a battle fueled by frustration for all parties concerned. No one will walk away victorious. The key is, knowing when it’s time to walk away.
Whenever possible, I try to change the subject but the level of his current fixation determines whether that will work or not. At other times, a distraction will work to sidetrack his thoughts. But if all else fails, there is simply no other choice…it’s time to walk away.
Sometimes when I retreat, I feel as if I am running away but I’ve come to understand that in reality, it can become simply a matter of my survival. When you are caring for someone you love, you have to remember to first take care of yourself. Nobody is going to do it for you, anymore than they will volunteer to take the weight off your shoulders. That’s just the way it is.
There is nothing easy when you are trying to function 24/7 with someone who has Alzheimer’s. It isn’t easy for the person living it and it isn’t easy for the person taking care of them. Hell, the bottom line is, it isn’t easy for anyone who comes in contact with it!

Dad has been more confused, more disoriented, more depressed, more uncommunicative, more apt to fall into favorite repetitive stories, and even less steady on his feet for the past few weeks. His lab work is good and he isn’t on any new meds that would be causing any more side effects than usual. His weight, Pulse Oxygen and Blood Pressure have been running consistently in very good range for him. He eats well and sleeps well. He is mentally deteriorating much faster now while he seems to have, in many ways stopped his physical deterioration.
He has been much more antagonistic than usual. He acts as if he is spoiling for an argument sometimes. I don’t know if it’s the Alzheimer’s or if he is somehow aware that Easter Sunday 2011 made it exactly 1 year since Mom died. It could easily be a combination of both or something all together different.

I can’t believe it’s been a whole year. I can picture the last 24 hrs of her life so clearly, down to the minutest details. I have often wished over this past year that I could erase parts of it. At the same time, I have prayed that I will never forget others.
Dad doesn’t have that luxury. The Alzheimer’s that plagues him is in control. It takes away as many good memories as it does the bad. Over time it changes details, people, names, dates, times, places, and events. It spins deluded, convoluted, and quite often nonsensical memories that trail in its wake.

Dad is starting to have a lot more episodes where he doesn’t recognize the family that lives locally or even in his home. Often, he becomes agitated for no apparent reason. Until recently, it was fairly easy to isolate things that disturbed him and once they were corrected to his satisfaction, he would settle down. Lately, his reasoning makes no sense so it’s virtually impossible to figure it out or to correct it.
The hardest of all is watching him becoming more delusional. Tonight at dinner, he told me an elaborate story about how he was once a weatherman. It started out that he had to learn all about weather as a pilot, “Not during the war of course because the military told you all you needed to know about the weather. It was their job to worry about it. All you had to worry about over there was doing your job and keeping your ass from getting shot down so you could go home.” I was floored when his story turned from the usual wartime memories to end up with him explaining that he was a weatherman on T.V. “for quite some time until they brought in that bald headed guy I can’t stand (Jim Cantore)”. If I had been a stranger listening to the tale he was telling, I would probably have believed him because he sounded so sure of the details. He even went so far as to say that he hasn’t liked Jim Cantore since the day he met him and knew he was going to be his replacement. “Of course, that was long before your time.” He assured me. I nodded and asked questions when it seemed he wanted me to but mostly, I just let him spin his fantasy until it played out. Sometimes, the greatest gift we can give as a caregiver is to simply listen.

At another point today, Dad wanted to know where everybody was. I explained that Melissa had taken all four of the kids home to her house. He quietly said, “I never would have thought you were that kind of woman.” Startled, I asked what he meant. He replied, “I never would have thought you were the type of woman who would give your children to somebody else to raise. I would think you would want to do it yourself.”
“Dad, three of those children are Melissa’s. Jordyn is mine. We take care of hers when she’s at work and she takes care of them and Jordyn when she isn’t. We help each other out.”
“I know that!” He interjected sharply before he shook his head sadly, “Who helps her with them? She shouldn’t have to take care of all those children by herself! That’s too much for her to do.”
“We do.” I said softly. “We help her a lot, Dad. And she helps me a lot by taking Jordyn and giving us a break from taking care of kids. I think we both need a break sometimes.”
“I love those children and I think most of them are the cutest kids I have ever seen. I want them here. They belong at home with you. Besides, she doesn’t have any help over wherever she is with them.” His agitation steadily grew, “Children should be with their mother!”
“Dad,” I quietly tried to reach him, “They are. Cameryn, Ayla and TyTy are Melissa’s children. Jordyn is mine. I am helping her raise her children and she is helping me raise mine. We are a blended family. I thank God every day that we have most of my children and grandchildren living near us but sometimes we all need a break. Melissa’s children need to be with her at their home.”
He rose from his chair and glared at me as he excused himself to go to the bathroom. On his way out of the room, he said quite clearly, “She shouldn’t have to do it alone. And if you were a good mother, you wouldn’t let her. You would be raising your own damn children.”

With tears in my eyes, I made my way downstairs. It was lost. Not a battle… not a war… but a piece of my heart. There are things about Alzheimer’s you cannot escape. There are things you cannot ignore. There are things you will never be able to forget. There are things that break your heart and attempt to shatter your very self. If you don’t have strength to draw on from the very depths of your soul, my advice to you is to get out. Put your loved ones in the hands of someone who can be detached to some degree because this a job that will breathe joy into you at times and suck it right out of you at others. I promise you this, it can be very hard to pick up the shattered pieces and go on sometimes. But if this is what you are meant to do, you will do it because it’s the only thing you can do. And if you are doing this all because you love someone then the strength you seek is already inside you. Find it… use it… hold onto it!

Wednesday, April 13, 2011

Help for Caregivers

If you are taking care of a loved one, I strongly suggest you check out this amazing website. It is honestly helpful and supportive.

Tuesday, April 12, 2011

Cannot vs. Can

The move into the beginning of the Severe Stage of Alzheimer’s kind of took me by surprise. It happened gradually. Over the last few weeks, Dad has become more confused, more disoriented, more prone to emotional outbursts, more combative, more likely to blame others for things he has done, more intense on the things he fixates on, more likely to make things up to fill in memory gaps in the stories he repeatedly tells. Then you have the things he is less… less able to recognize family members who live outside our home, less able to remember something that happened moments before, less able to complete a simple task, even with direction.

There is a wonderful poem (anonymous) that was written for Cancer patients. I am going to share it here. It is full of promise.

What Cancer CANNOT Do
Cancer is so limited---
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot invade the soul,
It cannot steal eternal life,
It cannot conquer the spirit.

Now, let’s relate that to Alzheimer’s…

What Alzheimer’s CAN Do
Alzheimer’s is so limiting---
It can cripple love,
It can shatter hope,
It can corrode faith,
It can destroy peace,
It can kill friendship,
It can suppress memories,
It can silence courage,
It can invade the soul,
It can conquer the spirit.

I purposely left out one line of the poem as it is the only thing the two have in common… IT CANNOT STEAL ETERNAL LIFE! It is a robbing disease. It steals everything from you. With Alzheimer’s, there is NO promise other than it will rob you blind.

Do I sound angry? I have a right to be! Day in and day out, I watch this disease steal a tiny bit more of someone I love very much.
I pray for strength, understanding and patience. I pray a miracle will happen and someone will someday find a cause and a cure. I pray for all the others who are in my shoes providing full time care to their loved ones. I also pray that the people who read this never have to LIVE it. I know I couldn’t do any of this if I didn’t believe in the power of prayer.

I’m not preaching to anyone. I am simply telling it the way I see it because I am here living it. I am dealing with Dementia.

Saturday, April 9, 2011

Goodnight, Sweetheart

Tonight after dinner, Dad announced he was going to watch some T.V., something he normally does. I came downstairs to take a bath after letting him know I’d be back in a little while. While I was in the tub, I would have sworn I heard Dad talking to someone. Unable to imagine who it might be, I hurried to finish and go check on him.

As I went upstair
s I clearly heard him say, “Did you see that, Sweetheart? All you ever see on The Weather Channel are people trying to sell you stuff and tornadoes.” I popped my head over the balustrade to see him sitting in his easy chair. From my perspective, I couldn’t see anyone else in the room (it is a HUGE open-air room). As I quickly scanned the room, he turned his head toward the chair closest to him and said, “I’ve really missed watching T.V. with you. I really miss talking to you at night.”

Tears welled up in my eyes as I looked in the direction he was looking. There in the chair Mom always sat in was a framed portrait of her. I ducked back and sat on the stairs for a moment to catch my breath, tears rolling silently down my cheeks, as I heard him say, “Hell, Sweetheart, I just plain miss you.”
Taking a deep breath, I crept down several stairs and made a show of stomping up them. Dad looked at me sheepishly. “I’m not crazy,” he announced quickly, shaking his head. “I just miss her so much. I miss talking to her and watching T.V. with her and seeing her beautiful face.”
Choked up, I could only nod. He struggled to rise from the chair, grabbed his walker and excused himself to go to the bathroom. The instant he was out of the room, I had my phone in my hand and was snapping pictures. I put the portrait back in its normal place and sat down wondering what I would say to him when he returned.
I shouldn’t have worried because he didn’t return. After about 15 minutes, I tiptoed down the hall to find him in bed snoring softly. As I turned away, he made a little snorting noise and called out, “Goodnight, Sweetheart.” He almost always hears me (or senses me) no matter how quiet I am.
With tears in my eyes and a smile on my face I replied, “Goodnight, Dad. Call me if you need me.”
“I will. You call me if you need me. Goodnight, Sweetheart.”

Thursday, April 7, 2011

Life on the Inside Looking Out While Living on the Outside Looking In

I am frequently told things like, “I don’t know how you do it,” or “I couldn’t do what you do,” or “I would go crazy in your shoes.” Then there are the questions like, “Don’t you ever get tired of it?” and “Doesn’t it get to you, doing all you do?” and “What are you going to do when he passes away?”
This is from someone who is living their entire life on the inside looking out while living on the outside looking in. This one is about just me…

“I Don’t Know How You Do It”
There are several answers to this. I get lots of help from above. I pray for wisdom, strength and patience constantly. I have faith that I’ll be shown the answers. I BELIEVE I can make it all work. And it honestly usually does.
My youngest daughter, Melissa, and I have created a blended family that is mutually beneficial to everyone. I have sole custody of my 12 yr old grandson. She is a single mother of three children ages 10, 4, and 2. We have found a way that works very well for us. She works 3 days a week (full time) so I have all the kids and Dad on those days. The other 2 days of the school week, the boys either stay with us or stay with Melissa depending on a number of factors. Weekends she keeps all of the kids at her house. This gives Dad (and me) a much need break from the chaos of children. I KNOW I couldn’t manage without her help. I KNOW she couldn’t manage without mine. That’s an amazing gift! And on the rare occasions when I leave town to recharge my batteries, I know that she can manage things in my absence (and has).
I have found a kind of peace within myself that I didn’t even know existed before we moved here. It’s a place where I can go and draw strength. It’s a place I can believe in myself. I can believe in what I’m doing because I KNOW it’s the right thing to do.

“I Couldn’t Do What You Do”
Trust me when I say you can’t possibly know how you would react until the situation is at hand. I wasn’t sure I could do what I do. When the situation first presented itself, I was terrified. I hated myself for stopping to ask myself if I was willing to give up my entire life as I knew it to move here and take care of, not one but both, of my elderly in-laws. I will never forget how I cried uncontrollably as I questioned why it was falling on my shoulders. And then I realized it was because it was something I only I could do in our situation.
My husband was gone less than a week after his father called to ask for our help. He moved in with them while I stayed behind to pack up our lives and get ready to move our son and grandson yet another time (we thought we were going to settle where we were after a lifetime of many moves). Six weeks later, practically everything we owned was placed into 2 storage units, I had handed our family cat (of 8 years) over to my daughter, kissed her and 3 of my grandchildren good-bye, hugged various friends that I haven’t seen since and we drove off to a whole new life.
That’s when I knew I HAD to do what I do. The funny thing is, looking back now, I know there never really was a choice for me at all. They called. They needed us. We came. And I don’t regret it for a second. I love my life and I love what I’m doing because I love the people involved unconditionally. I don’t know how to love any other way. When you love somebody, you will do anything and everything you can for them. So yes, I bet you could do what I do.

“I Would Go Crazy In Your Shoes”
If you honestly think I don’t have days where I go crazy, stick with that and quit reading this post right now (illusion is a magical thing). Trust me, there are plenty of days when I go crazy. I just try hard not to let most of them show.
For example, take today. In addition to a normal day with Dad and the kids, my son and his fiancĂ©e got stuck for a babysitter. Now, I will never pass up a chance to keep my future grandson (he’s 19 months old and adorable!) so of course I said yes. While dinner was cooking, I took the two youngest (still in diapers) downstairs for a diaper change. We then hustled upstairs to get dinner for 7 on the table.
After dinner, I was cleaning the kitchen when my 4 yr old granddaughter announced that the baby had peed in Pop’s chair. About that time he ran into the kitchen so I snagged him up. He was dry as could be but there was a definite odor about him. I shouted back, “Baby Kam didn’t do it.”
No sooner had the words left my mouth than I saw 2 yr old Ty streak past minus his shoes, socks, and pants. Snagging him up I instantly knew he was the culprit. Laughing, I asked, “Can’t you guys just stay clean and dry for a little while?” and headed for the stairs.
As I passed Dad finishing his desert at the dining room table I heard him say, “Oops,” Instantly a rumble came from the vicinity of his chair and he grinned at the babies in my arms. “I guess not.” He rose from the table and said with a twinkle in his eyes, “You change them and I’ll change mine.” I barely made it down the stairs before I burst out laughing.

Then you have the kind of crazy where you’ve been asked the same question 40 times in a day or heard the same story a dozen times in a span of a few hours (only its told slightly different each time because details are so easily forgotten), it’s the kind of crazy where you want to scream to make it stop. There are a lot of different kinds of crazy and you get to see brief glimpses of them occasionally. But that’s when I stop and pray for wisdom, strength, and patience.

“Don’t You Ever Get Tired of It?”
Honestly? The answer is sometimes, for a brief moment in time, maybe. But it doesn’t last long. I get tired of fighting against an insidious disease. I get tired of watching Dad struggle mentally and physically. I get tired of not being able to go where I want to, when I want to. Because Dad requires 24 hour a day constant care, I get tired of not being able to leave the house at all most days. I think more than anything, I get tired of just plain being tired.

“Doesn’t It Ever Get to You, Doing All You Do?”
You can bet your ass it does. It would get to anybody. But you simply do what you have to do.

“What Are You Going to Do When He Passes Away?”
Obviously, this is my least favorite question of all, first and foremost because I am sitting here trying to extend his life. Look, let’s face it. We all die. In fact, from the moment each of us is born, we are all dying. But I don’t think anyone actually wants to dwell on that fact too much. We are here to live.
I can’t answer this question. I have no clue where we will go from here. I thought we were settled just before the series of events took place that brought us here. I know we will have to sell the house and find a new place to live. I know that I won’t go too far from Melissa and her children, or Jeremy, Amanda & Baby Kam. I know I will have to find a job and figure out how to work it around my family. I know we will cross each bridge as we come to them because there is a time and place for everything under the sun. Right now my time and place is here and now and that’s all I can handle at the moment.
I had a career in Retail Mgmt., Restaurant Mgmt., was a district manager and then owned two businesses of my own (simultaneously while keeping first 3, and then 4, of my grandchildren full time at work with me). I am thinking of a career move toward caring for the elderly. There are not enough honest, dependable caregivers in the world. I enjoy the medical aspects of it all and I enjoy spending time with the elderly. I think I would be happiest if I could find a way to help protect them.
Who knows, maybe we will stay in this area. Maybe we won’t. I guess I’ll have to get back to you on it all sometime. I am living my entire life on the inside looking out while living on the outside looking in. For now, I just need to focus on the living. So that’s what I am doing.

Wednesday, April 6, 2011

Sometimes It's All About Timing

Dad was supposed to have gone for “fasting” lab work yesterday. He made it to the kitchen and a bowl of cereal before I could stop him so we had to wait until this morning to go. As soon as I knew he was up, I ran to the kitchen. He had parked his walker outside the kitchen so I wouldn’t hear him. Already, he had bread in the toaster and cereal in the bowl. I explained that he couldn’t eat yet because we had to go to the hospital to get lab work done. He instantly turned around and announced he would go get ready.

You have to understand, when he has a doctor’s appointment, I have to start getting him ready about 3 hours ahead of time. We are almost always late because he isn’t ready on time. Going to the doctor is a chore. But going to the hospital is a joy. He has been going there regularly since the day they opened the doors. He knows people there. Doctors, nurses, technicians, security guards, volunteers, administrators, maintenance men, you name it, they all know him by name and stop to talk to him. He is appreciative and touched that they take a moment out of their hectic schedules to speak to him. Most of the time he can’t think of anyone’s name but the faces spark a memory and he recognizes them. On a really good day, with someone he has seen repeatedly over the years, he occasionally remembers something specific about them.

As we were driving to the hospital, Dad asked (for the 8th or 9th time) why we were going. So, for the 8th or 9th time I explained that his Cardiologist had ordered these labs back in Jan. That we have to do this every 3 months for this doctor, it’s a way of keeping tabs on his heart. He thanked me 8 or 9 times for bringing him to the hospital and for taking care of him.
On entering the hospital emergency room (it’s where you register), we were greeted by a security guard that knows us well. Dad just had to stop and speak to him for a bit. Meanwhile, Ms. Jeanetta, an old and dear friend of his and Mom’s from church, spies us and runs over to give me a hug. She is amazingly proficient at giving a hug and asking half a dozen questions about how everyone is doing all at the same time in a tone that keeps Dad from hearing her. Her genuine concern for Dad is one of the reasons I have always liked her so much. By then, Dad has left the security guard and joined us so we have to visit for several minutes until someone comes in needing assistance. The instant we start to move away, the woman working in the admissions dept calls out to us, “Mr. Felker come on in here and I’ll get everything set up.” She chitchats with us and we are done and in the waiting area in a matter of less than 5 minutes.

There is a baby in the waiting room. He was barely past the learning to walk stage and Dad kept himself busy watching him and trying to talk to him. He kept telling everyone how cute the “little guy” was. Everyone in the waiting room was watching them. After a fairly short wait, Dad was called to the back. He leaned over to pat the baby on the head, announcing loudly, “You sure are cute!”
A guy (who’d been in a car wreck and was battered, bruised & there for extensive x-rays) that had been watching them all this time piped up from across the room, “So are you, Sir!” As the door closed behind Dad, I looked over at the guy. Tears welled up in his eyes and his voice was choked, “The old guy kind of reminds me of my dad. I really miss him. He had Alzheimer’s, too.” And in that moment as our eyes met and held, as the tears welled up in my own eyes, I felt his pain and I felt my own. “That’s my Dad,” I said softly.
And for a brief instant of time, I was connected to another human being on a level that can’t be understood unless you’ve actually walked a mile in the shoes of someone who dearly loves someone with Alzheimer’s. And I have to admit it felt good. He nodded his head and slowly stood up. With a smile of naked recognition and understanding, he limped away and somehow my day got a bit brighter.

Monday, April 4, 2011

I'm On a Soapbox (Let Me Vent)

There is no logic to Dementia or Alzheimer's. There is no consistency and so far there is no solution. There is no cure. There is little hope. At best, there are a myriad of drugs that can slow its progression but most of them are extremely expensive and many are slow to get approval by the FDA. Worse yet, most of them aren’t capable of making a drastic difference, they simply slow things down a little. Alzheimer’s is insidious beyond belief.
Recent changes to Medicare Prescription Plans have made a great many of these types of medications ineligible for coverage. Others are so ridiculously priced to begin with that the portion you are left paying out-of-pocket (for a 30 day supply) costs more than what an average family spends on groceries for a week. Dad has a monthly injection I give him that is $1485 PER SHOT! With his old insurance, his co-pay was $50 a month. With the new Medicare Plan his co-pay is currently $791.

Introducing Medicare Part D otherwise referred to as Donut Hole Insurance. There are 4 stages to this nightmare insurance policy brought to you by the US Government (via a letter Dad received a few days ago)…
Stage 1- Yearly Deductible is around $300 (we had that met by the 2nd week of Jan.) Stage 2- Initial Coverage the plan covers part of the cost and you cover the rest (in our case they cover about 35%) until you reach app. $3,000 year-to-date “total drug costs” (we’re over ½ way there). Stage 3 Coverage Gap (which I estimate we will enter within the next 4 weeks)- You will receive a discount on brand name drugs and you pay ONLY 93% of the costs on generic drugs. You stay in this stage until the amount of year-to-date “out-of-pocket costs” reaches app $5,000. At this rate it shouldn’t take us very long to move to Stage 4- Catastrophic Coverage. During this payment stage, the plan pays most of the cost for your covered drugs. You generally stay in this stage for the rest of the plan year.
***Please note the ambiguous wording given by them. Phone calls are even more frustrating because everyone insists this is the best solution for someone who takes as many different medications as Dad does. Currently, he takes 29 different medications orally and 2 different types of injections at home.

How exactly does the government expect to prolong the lives of the elderly when they allow the pharmaceutical companies to pillage, rape and plunder the American people? How do they expect the elderly to pay their rent or mortgages, buy groceries, while paying outrageous costs for medical care and prescription medications? How can they hold their heads up knowing that there is no such thing as a decent government run nursing home in this country (and if there is, I stand corrected and am amazed)? How can they close their eyes to the injustices, neglect and abuse that the American elderly are subjected to without punishing the offenders to the highest letter the law will allow? I often wonder what these people do with the elderly in their own lives (parents, grandparents, etc.)

If I were an elected official, I would bend over backward for this dwindling segment of the population. I would bust my ass to keep them alive as long as possible. You see, unlike subsequent generations, the elderly still have faith in the government. They always pay their taxes, they don’t ever cheat the government, the elderly go out of their way to follow the very letter of the law. They have unwavering devotion to our country and yet most government offices seem to relegate them to the back burner in every case. You get better health care assistance if you are a crack addict with 5 kids living in the projects and selling sex for hire than you do if you are elderly.

It infuriates me to see the way so many Americans treat the elderly, when they aren’t ignoring them entirely. Our nursing homes are more often than not substandard and the funding is so sparse (no matter who it’s run by) that there is a shortage of both Registered Nurses and LPNs (the ones there are, are overworked and usually underpaid), a shortage of doctors who give a damn, a shortage of Caregivers that have more than the minimum qualifications. I can’t think of a single country in the WORLD that treats the elderly so poorly!

I am angry and I am going to keep making it my business to demand answers from the medical people we encounter regularly, our insurance companies, Medicare, Social Security, the Federal Government in general.
I am going to continue to fight a government that allows crimes against the elderly go unpunished. A system that will allow someone to neglect or abuse an elderly person and then let them open a business that provides elderly care is a system that needs to change. I am only one small voice but I will S-C-R-E-A-M to be heard!

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.