Sidebars and Med Changes

I think we’ve established that Alzheimer’s is frustrating at best. But sometimes, the sidebars are even worse. In January, Dad’s primary physician and I decided we needed to change his anti-depressant. He had gotten to the point where he was sleeping an average of 19-20 hours a day. When he was awake, he was deep in the throes of a crushing depression. Frequently, he would cry but couldn’t tell me what was wrong.

At the same time, the decision was made to switch him from Aricept 10 to the new Aricept 23. ARICEPT does not cure Alzheimer's disease. All patients with Alzheimer's disease get worse over time, even if they take ARICEPT 23 mg. But it has proven effective in many cases, to slow the progression of the disease. For those who respond, ARICEPT 23 mg may take several weeks or longer to work. Knowing all of this, we began the new drugs.

Since the switches, Dad has been sleeping less and has been more alert. His outbursts of tears are fewer and fewer. He has had fewer delusions and seems to be clearer minded. The down side is, as he frequently remarks, he “feels like shit”. After about 10 days on the new medications, he insisted he needed to go to the hospital. I had just begun cooking dinner so I turned everything off and sat down beside him. No matter how hard he tried, he couldn’t tell me what the problem was or why he wanted to go to the ER. I decided it was in his best interest to do as he asked.

I loaded Dad and all 4 kids into the car (I dropped the kids of at my husband’s work. I am thankful that I didn’t have to take them with us and thankful that my husband helps when he can) and off we went to the emergency room. When we arrived, I couldn’t tell them any better than he could what the problem was. As soon as he was settled into a room, I stepped out to speak to the doctor. I explained that he has Alzheimer’s and about the recent med changes. With great patience, they began running blood, urine and feces tests. Several hours later, it was clear that his test results were good. They explained to him that the medication changes were probably responsible for the way he felt and that it should improve in 4-8 weeks.

The following week we had an appointment with his kidney doctor. Dad vehemently told him his complaints (he believed that was why we were there). I asked if, perhaps, we should consider changing back. The doctor assured us that he was better off on the new anti-depressant than the old one (in terms of kidney damage) and that it would take several weeks for his system to adjust. Dad was NOT reassured at the news.

We are now over the 1 month mark and he still tells me daily that he feels bad (my wording not his). I keep trying to remind him that we have another month to go in the transition. All of his lab results are amazingly good considering his many health conditions. I wish I could fast forward time for him so that he would feel better, but I can’t. I have to believe that this is all for the best and that the doctors are correct when they say he will start feeling better soon. Sometimes, it is impossible to know what the right thing to do is, but I have to keep trying, praying and believing. There is simply nothing else I can do.

Balls in the Air

When we are born they take care of us. They feed us and change us and see to our constant needs. They keep us safe and teach us right from wrong. They hold us when we are frightened and comfort us when we are hurt. They don’t ask for anything in return, they do it all because they love us.

Being a family caregiver to someone with any form of Dementia is the most difficult job you will ever have. You have to step into the role of parenting a parent or grandparent. We do for them, as they did for us, because we love them.
Like a baby, they often cannot express themselves well enough to tell where it hurts or why they are frightened. They rely on us to make it better. They are no longer capable of knowing right from wrong so we must gently guide them in the right direction. They have no concept of what is safe and what is not so we must do all in our power to keep them from injury. It can drain every bit of energy from you, leaving you exhausted almost constantly, in a much more wearing kind of way than being a new parent.

There are always times when you will be exasperated. For example, when Dad brings me a handful of light bulbs (removed from every lamp in his bedroom) and says he doesn’t understand why they all burn out at the same time. A couple of times a week, at least, he accidentally turns off the wall switch and suddenly, they no longer work. We have been over this more times than I can count but he just doesn’t understand. So, I smile and put them all back. With the flip of a switch, his world is momentarily right again. And I am an undeserved heroine.

The examples of exasperation are so great in number I could easily write an entire book on that subject alone. So can any caregiver. It is a common bond we all share along with exhaustion, worry, prayer, at times anger, and frustration… the list is never-ending.

Then there is the other side of the coin, the rewards we get from what we are doing. The love we give and receive in return, the joy at the tiniest of accomplishments. The satisfaction of doing something right, something that prolongs the life of someone we love. Here too, the list is never-ending.

We caregivers are jugglers. And we sometimes drop the ball. We wouldn’t be human if we didn’t but the trick is learning to not beat ourselves up for it. The people in each of our lives who never pick up the ball to begin with are the ones who are losing. They will never know how much they have missed. Odds are, they will never care. Some people care too much. Some people don’t care enough. That’s just the way it is.

As for me, I’m just trying to keep my head held high and my balls in the air. And if I shed a tear or two along the way, I know it is alright. I will wipe my eyes and keep going for as long as I am needed.

"Where's Shari?"

I didn’t think I’d be back this soon, but here I am. I belong to a couple of Caregiver support groups (all via internet since most of us can’t get out of the house). On Wednesday, I posted on one of them in an attempt to express something most of us (caregivers) have been through at one time or another. I am copying and pasting it exactly as it was posted…

Some days are good. Some days are not so good. And then there are days like today...
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm right here, Dad."
"Where's Shari?" "I'm Shari, Dad."
"Oh."


Unless you have walked in the shoes of someone who loves and cares for someone with Alzheimer’s, you can’t possibly know how much this hurts. Nor can you imagine how painful it is to watch happen. Please understand this went on for most of the afternoon until almost dinner time. We had been at this for several hours when I posted. Please reread the first line of the post carefully. I wasn’t saying today was a good day or a bad day. I really hope no one else thinks I was implying anything other than it was what it was.

Someone I have come to think of as a friend was a bit harsh in their response and I will be honest enough to admit: I was taken back by their words. I completely understand that it must be the most painful thing ever to love a spouse as much as my friend loved his only to lose them to this horrendous disease. I can’t relate to that, and God willing I won’t ever have to but, I care for the only father I have had in my life for the last 20+ years. For me, this is tough enough to deal with. My heart goes out to my friend but anyone who is dealing with this terrible disease should have a right to occasionally be frustrated. I read and reread my own post trying to see where I had complained (as I felt he was saying to me). I am copying and pasting his response but I am removing his and his wife’s name as it is not my right to divulge personal information about anyone in any of my groups…


“The day will come when you will look at days like this as good days...the last two years for my wife were days that she was non responsive and hardly opened her eyes...I would have welcomed the exchange you report...”


Many of the comments that followed were supportive and loving but just as many were people talking to “my friend” (with no mention of the post itself). As a rule, I rarely post on any of the groups I’ve been involved with and I suddenly remember why. For every loving, supportive person out there, there are just as many people who want to knock others down or simply ignore them. Personally, I just plain don’t like the odds. I have a few people in my life (very few) that I DO talk to about my day-to-day world. While they can’t completely comprehend it, they support me unconditionally. Every caretaker needs at least one person who is capable of unconditional love in their lives, someone other than themselves. To be honest, I don’t think my friend intended anything other than to express his opinion but, at the time, I felt he negated mine. The downfall of being a caregiver is sometimes being too sensitive. I'm sure, for me, this was just one of those times.

Later That Evening
As many of you know, I work part-time as an over-night caregiver. For the most part, it works well with Dad’s schedule. I am able to get him settled for the night and I am home before he wakes in the morning…usually. After the day I had with Dad not knowing who I was, but asking for me constantly, I was already tired when I left for work.

The lady I care for was released from the hospital (after her second bout of pneumonia and a urinary tract infection this year) just hours before I arrived. When I got there, I was informed she was trying to decide if she needed to go back to the hospital because she was so weak and dizzy. It took me 2 hours to convince her she should be after being hospitalized for nearly a week. Between her falling asleep and 9am, she had to go to the bathroom 7 times. She had a very bad night which included wetting the bed 3 times (change sheets and gown, put back to bed, do loads of laundry) and wetting the floor twice (nothing like scrubbing the carpet at 3am). When she was awake, she wouldn't let me out of her sight but kept telling me to do things and get things that required me leaving the room. Then she would call out, "Shari, Shari, Shari, SHARI!" She doesn't even take a breath in between and gets louder as she calls me.

The Next Morning
When I got home Dad was trying to call the police because, he insisted, everybody lies to him and hides things from him and he wanted the police to come "put the dirty bastards" out of his house! Then he told me an elaborate story about Richard pulling a gun on him last night and threatening to kill him so he could "run things" (which, of course, never happened). It took me an hour to get him settled down and to get him to stop cursing at me and shaking his fist in my face. It was difficult trying to clean the kitchen, put together a meal for him, get him to climb onto the scale, take his blood pressure and pulse/ox, record everything and get his meds all while he ranted and raved.

When he woke up from his nap and he didn't know who I was again. As a safety precaution, I sent the kids downstairs to watch TV. I am so glad I did. He apparently had a dream that shook him up and became convinced that EVERYONE is out to get him (me included). He was angry and belligerent, telling me stories that made no sense. Like a fool, I tried to reason with him and explained as gently as possible the many reasons why none of these things could have happened. He yelled at me to shut up. I tried to reassure him and he brushed me off. He slammed his hand down on the arm of his chair and struggled to his feet. At that point, I decided a breather for both of us was in order. I cocked my head and announced I heard “one of the babies” (they are 3 and 5) crying and said I should go check on them. As I started to leave the room, he grabbed my ponytail and yanked it, nearly pulling me off my feet. When I stumbled backwards, he did, too. He landed in his chair with a “plop” and tears welled up in my eyes, the pain in my head secondary to the pain in my heart.

Concern flooded his. “Are you feeling ok, Sweetheart?” he asked as if nothing extraordinary had happened.
“I’m fine, Dad. I’m just tired,” I admitted with a deep, shaky breath. “I have to check on the kids.”
“I’ll be here when you get back,” he smiled so innocently. “Hurry back, ok?”
“Sure, Dad, quick as I can,” I replied before running downstairs and locking myself in my bathroom to cry for a minute…or two. And before I could even blow my nose for the second time, I heard him say, “Where’s Shari?”

But I Love Him

I know it’s been a while since I’ve posted. Things have progressed quite a bit since I was here last. Most days, I can’t write a word because the reality feels so harsh. Dad’s memory has obviously worsened. His ability to care for himself has lessened. Getting through the depression that set in just before the holidays has been impossible to describe. This normally non-emotional man had taken to daily bouts of tears. He frequently asks me how I would feel if everybody I loved died before me. I can’t begin to imagine.

In January, I sought help from his primary physician. In an attempt to address these problems, he was taken off Namenda and moved from Lexapro to Zoloft. The Aricept 10 was replaced with Aricept 23. So far, the changes have been rough. While he seems a bit clearer most days and his depression has lessened considerably, he does not feel well and can’t articulate how or why. We have had follow-up visits with his primary, his kidney doctor, and the ER (Dad insisted I take him though he couldn’t say why). They have assured me that we simply need to get through the 4-6 week medication adjustment and we should see a drastic improvement in his overall sense of well-being. Side effects from both of the new drugs include a general sense of feeling ill, loss of appetite, etc. I often wonder if it’s worth it but the doctors insist it is. Because I do see signs of improvement, I am doing just that for now.

When I agreed to come here and care for my mother-in-law and father-in-law, I couldn’t possibly have imagined all that it would entail. No one ever can. The cooking, cleaning, etc. are the easy parts. But I have discovered we all have our breaking points. Recently, I sat on the laundry room floor and cried after I put the 8th load of “soiled” laundry into the washer for the day. Then there was the night I cooked dinner and Dad asked me if there was anything he could do to help 69 times. I’m serious 69 times, I counted. He can’t complete the simplest of tasks and if I do ask him to do something, he usually forgets it a second later. His willingness to help is overwhelming at times. I am blessed because I know how grateful he is for every little thing I do but it can be a bit much at times.

Often, he feels as if nobody cares (though he always points out I’m the exception). Frequently, I wonder if he is right. I know that he is loved but that palls compared to being feared. When I married into this family, I was rather shocked at the reverence this matriarch and patriarch were given by their family and friends. People flocked around them. They were social butterflies at the height of flight back then. Now, Mom is gone. Seldom does the phone ring, and if it does, it is usually not for him (though frequently it is regarding him for example, doctors and such). The visitors we have are our friends, not his. Granted, most of his friends have passed on but you would think his minister or someone from the church would at least drop by occasionally. And I won’t even go into the deplorable lack of communication from his family outside this house.

I know it’s hard to deal with someone who tells the same stories over and over and over again. I know it’s difficult to be asked the same things day in and day out. I know it can be virtually impossible to interact with someone who seems so out of touch with reality. But I know it is important to reach out to these people, to help them prolong their tenacious grip. Avoidance and denial so often go hand-in-hand.

I hate that I am his only lifeline. But I love him. I hate this disease that is attacking him. But I love him. I hate that he feels so alone. But I love him. I will continue to love him and help him through it all because it’s the only thing I can do. I will be by his side until the bitter end.

And I will always thank God for giving me the opportunity to do all I am doing. Without Him, it just wouldn’t be possible.

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.

Fixations

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…