"Why Won't You Let Me Go?"

Escalating Agitation Born of Confusion

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


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


Momentary Leap Into the World of Lucidity

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


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

Squamous Cell Carcinoma is One of the Dirtiest Things I Know

Well, here we are. Dad’s mental state is deteriorating noticeably. He has this annoying new habit of laughing to himself when he disagrees with anything that is said to him. I never knew a laugh could sound so painful… so hateful. He is becoming more paranoid and delusional daily. He frequently has no idea where he is and asks why we “brought him here to visit”. He is transported back in time to Louisiana and believes he still lives there. It isn’t uncommon for him to ask me to “take him back to his bride”.

Physically he is doing amazingly well. Ask anybody that knows him and they will tell you he looks better than he has in years. If you were to ask his doctors, they would tell you that he is in remarkable shape for someone with his list of physical conditions, diseases and age. He is frequently referred to as a medical miracle. It’s as if his physical state is improving as his mental state declines.
Tomorrow, we will go in for yet another surgery. Dad has squamous cell carcinoma on his right ear, again. They will do Moh’s surgery and it will be gone… until the next time.

This past week we found out my mother has squamous cell carcinoma. It’s not on her, it is inside her. She has lung cancer. It wasn’t there in April when she had a CT scan because of pneumonia but it is there now in August. I wish to God there was a treatment like Moh’s that could fix her as easily. Hers is inoperable. We are so in need of a medical miracle here. What a difference it makes to have something like this inside your body rather than outside it! I hate that I am here and not there. I hate that I constantly end up feeling like I am letting down someone in my life, someone that I love. It is all part of the curse/blessing of being a caregiver.

For those who may not know it, my mother spent the last seven years of my grandmother’s life as her caregiver. She devoted herself to her mother. She gave up her home, her time, her everything to be there and care for her mother. We lost Grandmama 5 months ago. Needless to say, Mama has been killing herself trying to settle her estate, deal with all the little things that have to be done, all while dealing with her grief. As she has physically deteriorated, we all assumed it was just a part of the insane stress she has been under. We never guessed there was a time bomb ticking inside her.

Caregiver stress weakens the immune system. A weakened immune system allows things like cancer to grow. I can’t help wondering if there isn’t a direct correlation between the amount of stress and the rapidity of the growth of her disease. I am so frustrated and angry at something so far beyond our control. But I do know that those feelings, too, will eventually pass. Isn't it odd how much of everything in our lives depends on the passage of time?

My mother is one of my heroines. She is one of my best and dearest friends. She raised me and my little sister as a single mom in an era where we were the minority. Very few of my friends growing up lived in a one parent household. If they did, it was usually because a parent had died, not divorced. Mama worked for a pittance and struggled to provide for the three of us. She held her head high and did the best she could (with much help from her beloved parents). She taught me that I can do anything I put my mind to as long as I believe in MYSELF. Most importantly, she loved us.

Over the last five months, I have thought to myself countless times that Mama finally has an opportunity to LIVE. She can finally live her life for herself… she can do the things she has never been free to do… she can live a life where she doesn’t have to answer to another living soul. I’m a bit pissed off that a stupid disease is invading her and trying to knock her down. It is a strong reminder that life is too short. It’s a shame it takes reality biting us in the butt to remind us that life is ALWAYS too short!

I have often said that I come from a long line of Steel Magnolias. It is strong, female, southern stock that always seems to rise like a phoenix amidst the ashes of circumstance. Yes, I know I am somehow mixing metaphors but I also know that the people who read this will completely get my meaning. I also know that there is always a chance my mom will beat this thing simply because she is who she is and she is a Steel Magnolia.

If you know my mother, you know what a great person she is. If you don’t know her, I sincerely wish you did because your life would be enriched by the acquaintance. But whether you know her or not, I ask that you lift her up in prayer, kind thought and wishes. Every little bit helps. And we all need a little help sometimes.

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.

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.

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.”

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.

Happy Father's Day

6-20-10

I wish that Dad were home with us (he is in a rehabilitation facility). I have been keeping notes on the events of the last 10 days and hope to catch everybody up some time soon. Life is a giant roller coaster right now and it makes it hard to find time to sit down and write. Today, I will spend more than my average 6-8 hours with Dad. I will encourage him to get stronger so that he can come home (even though I do that everyday). But mostly, I will simply love him as I thank God that he is still with us.

The Beginning (not)...The Middle (not)...

This will be one of the hardest entries I have made on here. I have kept notes and will draw on them for future reference. I will try to do this in a dignified and befitting manor to one of the last true, great "Southern Belles" of my time. Mom constantly reminded me that it wasn't where I was born, it was who I was born to...and it was obvious to anyone who met the women of my family that I was born of the hardiest, most compassionate of stock in the South. Oddly, I take great comfort in that and gladly embrace that! She taught me more than anyone could ever know about being a lady but she completely understood my need for individuality. She LIKED my eyebrow ring. She said it was a most eye-catching accessory.
I will miss her so much more than most people ever could because she was my mother-in-law, one of my best friends and one of the people who understood me most. She never learned to love unconditionally completely...

But I know, she loved me unconditionally. I am so intensely blessed to have been loved by her. I am blessed to have known her. Here is an overview of our last days with Mom, Del Herndon Felker....


We admitted Mom to the hospital on Friday with Pneumonia and congestive heart failure. Saturday morning she went into Respiratory Failure and we moved to the PCU (Progressive Care Unit).
Here we were introduced to the BIPap machine. (The BIPAP machine is a small, bedside respiratory machine connected to tubing and a face mask worn by the patient. The BIPAP machine does two things - it helps push air into the lungs and helps hold the lungs open to allow more oxygen to enter the lungs. Each time the patient takes a breath, the BIPAP machine assists by applying air pressure to the lungs while the patient is exhaling in order to hold open the air sacs in the lungs. A BIPAP machine is used when a patient cannot breathe completely on their own and needs help getting oxygen into the blood. BIPAP machine is used in an attempt to avoid using a ventilator.)

We were thrilled that she was so much better by the time they took her off it several hours later. But, for the following 30 hours or so, she would go into distress and back on the machine numerous times. By Sunday night, she was too worn out to keep up the fight on her own. We moved to ICU with the threat of a ventilator in an hour if her blood gases didn’t improve and back on BIPap she went.
An hour later, they drew the blood and we held our breath as we waited for the test results. Amazingly, they were back in record time and Mom was back in normal range. I was allowed to help the nurse get her into a fresh gown and linens and give her, her medications by mouth. She did so well, they let me feed her a cup of vanilla ice cream before we left for the night. We left the hospital with hope in our hearts…

On Monday morning, at 6:34 a.m., my cell phone rang. I knew as I glanced at the time and reached for my phone that it had to be the hospital. I was right, and the news wasn’t good. The voice at the other end informed me they had just put Mom on the ventilator. I was struggling to get fully awake and hear/understand everything the voice was saying. I was also trying to pull on my clothes. Richard had heard enough to know what was happening. ”Where are you going?” he asked.
I tried, rather poorly, to explain that I had to get to the hospital. He was confused as to why. Finally, I told him it wasn’t for her. It was for ME.
I ran through the door as they were putting the last piece of tape in place to hold the tube in her mouth. The nurse moved aside and gestured me forward. I bent over and kissed her forehead, then I stroked the hair away from her face as the nurse assured me that she had done very well during the procedure. I asked if I could talk to her and the nurse assured me it was not only fine, but encouraged.
“Hey, Ladybug,” I said loudly to Mom, “You need to hurry up and get better so we can go home.” Suddenly, her eyes opened and she looked straight at me. The recognition in her eyes was unmistakable. Then they fluttered closed and she began gagging on the tube so hard she turned dark red. The nurse encouraged me to talk to her while the sleeping cocktail they were hooking to her IV did its work, part of which was Diprivan (the drug that killed Michael Jackson).
As she gagged and silently choked, I stroked her arm, held her hand and repeatedly told her to relax. Finally, she did and over the next several minutes it worked like a charm as her body slowly began to relax. By the time the drugs had her completely under, I was in agony for her. I stood by her bed crying, feeling so scared and alone that I had to step into the hallway for a breath of air.
I was insanely relieved when I looked up and saw Richard and Dad coming down the hall toward me. It was my job to take care of her and for a moment I felt like I had let she and Dad down in that respect. I quickly realized there was nothing any of us could have done to prevent the turn of events that had brought us here. After a lifetime of debilitating Asthma, her lungs were just plain worn out.

Tuesday the daily “weaning” from the ventilator went very well. And she breathed well… it was considered a successful weaning. But her lungs just weren’t ready to maintain it long enough.

On Wednesday she failed the test… The doctor called me on my cell phone (it took us 5 phone calls between us to get to the point of the conversation). He told me we would have to find a way to tell Dad. It was time to make a decision. After lengthy discussion, we made the decision… we would wait to see the results of the next 48 hours. Beyond that, we would rapidly lose any chance of getting her off the ventilator successfully. I began calling the family and telling them this would probably be their last chance to say goodbye. We announced it would not happen until Friday (to allow time for anyone who wanted to get here or if it was possible for them to, to be here.). Nobody came.

Just Let Me Know!

April 12, 2010


Here are a few snippets of how today has gone…

Mom insisted on making pancakes this morning. She added eggs, half & half, and oil to the instant batter (just add water kind). Then she turned the skillet on high (which I went behind her and turned down). She mixed instant coffee, half & half and sugar in a cup of water then placed it in the microwave on 5 minutes when I went to the bathroom. I swear it looked like Mount Vesuvius had erupted in the darn thing. I cleaned up the mess and turned the heat down under the pancakes again. When she had 4 burnt-on-the-outside, barely-cooked-on-the-inside pancakes ready, she ate them and began to make more.
This time, when she had 4 ready she went to call Dad to breakfast. He told her he wasn’t ready to eat “just yet”, so while he was in the bathroom, she ate 2 more pancakes. I made a new batch of batter and started making him some more. Before I could get them on the plate, she came in and snagged the last 2. While she was eating, she had a dialogue going with the antique sewing machine. Her world is getting farther away.

Mid-afternoon, she exploded another cup of coffee in the microwave before deciding she wanted bread pudding. Dad insisted I let her do it herself. Unwilling to fight them, I cleaned out the microwave and stepped back until I was asked to “go away”. When I returned less than 15 minutes later, the bread pudding had exploded all over the inside of the microwave and Dad had a saucer with the sauce for the pudding on it. Mom had microwaved the sauce in its plastic cup for so long, it had melted the plastic and was now beyond description. She was insisting she was going to eat it. I informed her firmly, that she was NOT. When I pointed out to Dad that the plastic was almost entirely melted INTO the sauce, he agreed and threw it out. She was furious with both of us for wasting it!

While I was making dinner tonight (as he does every night), Dad asked what he could do to help. I pointed out there really wasn’t anything for him to do yet.
“Just let me know,” he cheerfully replied.
He sat down in his recliner and promptly got back up and came to the kitchen. “Can I do anything to help?”
“Not right now, Dad.”
“Just let me know,” and off he wandered.
The 3rd time he came in and asked, I suggested he go out on the front porch and enjoy the breeze. He replied, “I don’t feel like it. Is there anything I can do to help you?”
“Sorry, Dad. Dinner should be done soon.”
“Well, just let me know.”
The next time he enquired I suggested he go water the plants. His reply? “Nobody lets me help with anything.”
“But, Dad, I’m sure the plants need watering. It would help me a lot.”
He got the water pitcher out of the cabinet and proceeded to fill it with water. He then carried it to the bar and set it down. “Sweetheart, is there anything I can do to help you?”
“You could water the plants.”
“Sure,” he replied as he removed drinking glasses from the cabinet.
“How many for dinner tonight?” he asked.
“Four,” I replied.
He carried the glasses to the table and cheerfully set the table for 5. He then returned to the kitchen and asked, “Is there anything I can do to help?”
“No, Sir. It will be ready in just a few minutes.”
“Ok. Just let me know.”
With a smile, he retrieved the water pitcher and filled the glasses on the table. When he was done, he left the room in search of Mom (to let her know dinner was almost ready). I discreetly removed one place setting and put out their evening meds.
On his return, Dad again asked what he could do to help. I told him it was time to eat. He informed me (as he does every night) that when dinner was over he wanted me to disappear so he could clean the kitchen. And as I do every night, I assured him I would.

*** Just a side note… My 3 year old grand daughter, Ayla, has recently developed a penchant for saying not yet. To her, “not yet” means “not now, or later, or in a little while”
“Nonni, me help you?”
“In a little bit, Sweetie.”
“Not yet?” she asks.
I smile, “Not yet.”
To which she will cheerfully reply, “Just let me know!” I can’t imagine where she gets it from…

Double Trouble & "Cycling" Minds

April 11, 2010

In the mornings, I sit in my rocking chair on the downstairs porch. It is beneath the dining room and kitchen. Gradually, sounds begin to filter through the floor above me. The creaking, sort of grating sound of the wheelchair making its way across the floor alerts me that Mom is up. Today, it was only a matter of moments before I heard the steady beeping of the oxygen machine alarm (Dad never remembers to turn the machine off before he unplugs it)as he drags it laboriously along behind her.

I have heard the sounds that herald round 2 of my morning routine.

I go upstairs to greet them and see how they slept (though I already knew the answer to that one). Dad woke me up at 2:30 because she was having a rather severe asthma attack. She had been off oxygen since about 8:00 and it took a while to get her back on track. I stayed with her until we could get it under control and she was asleep.

As I steer them through their morning medical routine, I quickly realize that this is going to be a rough day.

Mom is confused, disoriented and struggling to keep her eyes open. Her mania is the only thing keeping her moving. Dad is deep in the throes of Alzheimer's. His attention span is about 10 seconds long before he forgets what he's doing. He is unable to complete simple tasks today without guidance and instruction.

I long suspected that they were somehow "cycling" their mental illnesses together. On our last visit to their doctor, I asked him about it. He believes that it's entirely possible. Mental illness can easily feed off another mental illness. It's kind of like an alcoholic or drug addict feeding off another alcoholic or drug addict.

In an odd way, it is co-dependency, but it is much more than that... It can be a coping mechanism (he can't handle her dementia or mania so he retreats into his Alzheimer's) (she can't handle the Alzheimer's, so she retreats into her dementia).

Fewer are the days that they are both clear minded at the same time. In Dad's case, a day no longer goes by that the Alzheimer's isn't present. In many ways we have been very blessed. Dad's journey into dementia began almost 10 years ago. It has been a very slow progression (though it has been an insidious presence that couldn't be hidden or controlled for a quite some time now). On the bright side, I watch him try to fight it every day.

Mom's journey has only recently begun. Until this past year or so, she has been surprisingly clear headed and sharp. But the progression of her decline over the last 6 months has been rapid and is clearly visible to everyone. Unlike Dad, she embraces her illness. She slides into her own private world that shuts out her surroundings. There, she is content to putter and play in a place where reality plays no role. Dad's Alzheimer's doesn't exist there, people don't move in to your house and do everything for you there, no one tells you to eat your dinner or take your pills there. You don't have to do... or be anything at all there. It is a place where she feels "safe".

It is getting harder and harder to pull her back to reality lately. And these episodes are becoming more and more frequent. It breaks my heart to wonder what it must feel like to her. I am watching someone who used to be one of my very best friends, slip away. Physically, emotionally and mentally, I am losing her and it hurts like hell.

These are the times I cry in frustration. There is nothing I can do to stop it. It's my job to continue to try to make their journey as easy for them as I can. And so, we will simply go on...

Dealing With Dementia Jan. - March

Jan. 8, 2010

Dad tries so hard to be helpful but it really has a tendency to backfire at times. Last night, he decided to rid the fireplace of ashes just before he went to bed. He scooped everything, including the burning coals into a 10 gallon plastic bucket. When I went upstairs to secure the house for the night, I found a small electric fan on (blowing into the fireplace itself). I bent down and was assaulted by the smell of burning plastic and wood. I picked up the bucket to place it on the hearth and was shocked to watch the entire bottom of it come off.
In a split second my brain processed what was happening. 3 pitchers of water later, I felt secure enough to run downstairs and beckon Richard to help me. A major crisis was averted. But I am now more aware of the dangers that a demented mind can create.
When I explained what had happened to Dad, I expected denial (which is usually the case). Instead his response was curiosity. "That was really stupid. Why would I leave it on the floor? I should have put it on the hearth." He is fully aware that it could have been much worse. He is also determined to clean up the mess.
I guess the only thing we can do at this point is buy him a metal ash bucket. Oh yeah, and keep praying for strength and guidance. There is no doubt in my mind that, had it not been for divine intervention, what was a minor crisis could have been a major tragedy.

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Feb. 27th, 2010

You know it's coming...the day a doctor will use the words you have been dreading to hear. But when you see it in black & white, it still takes your breath away and makes you numb inside. This past week, we finally reached that point. Dad has been officially diagnosed with Alzheimer's Disease. The funny thing is... he was diagnosed by his previous doctor, we just didn't know it.
So, what exactly does that mean? Well, for starters he has become very combative and the forgetfulness has gotten progressively worse. The slightest change in routine can send him into an absolute tailspin. And he is convinced he is losing his mind. He has been known to double up on meds because he didn't remember taking them (they are now hidden from them). And he constantly argues while stating he doesn't want to argue. Dad is a classic example as he has hearing loss, and no sense of smell or taste left. On the 10 point scale for determining Alzheimer's, he is 10 for 10. Next step, we go for a full Neurological work up.

What is Alzheimer's... It is a progressive and fatal brain disease. As many as 5.3 million Americans are living with Alzheimer’s disease. Alzheimer's destroys brain cells, causing memory loss and problems with thinking and behavior severe enough to affect work, lifelong hobbies or social life. Alzheimer’s gets worse over time, and it is fatal. Today it is the seventh-leading cause of death in the United States. It is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer’s disease accounts for 50 to 80 percent of dementia cases. Other types of dementia include vascular dementia, mixed dementia, dementia with Lewy bodies and frontotemporal dementia. There is NO CURE yet!
Just like the rest of our bodies, our brains change as we age. Most of us notice some slowed thinking and occasional problems with remembering certain things. However, serious memory loss, confusion and other major changes in the way our minds work are not a normal part of aging. They may be a sign that brain cells are failing.
The brain has 100 billion nerve cells (neurons). Each nerve cell communicates with many others to form networks. Nerve cell networks have special jobs. Some are involved in thinking, learning and remembering. Others help us see, hear, taste and smell. Still others tell our muscles when to move. In Alzheimer’s disease, as in other types of dementia, increasing numbers of brain cells deteriorate and die.

As a caretaker, it can be very difficult dealing with a loved one (or patient) who is impossible to reason with. While they may be upset or antagonistic one moment, they may completely forget an altercation the next. You simply have to learn to cherish the rare moments of clarity when they occur. And deal with the rest with patience and love. Remember, they are unaware of their own behaviors so there is no accountability for their actions. Your frustration is minor compared to what they must be feeling. You have control...they DO NOT!
We have begun a new phase in life here. It is often painful, exasperating, frustrating, aggravating, and heartbreaking. But on the rare occasions when it is none of the above, it is loving, rewarding, and special. I am blessed to be here sharing the end of their lives with them. And these notes will ensure that, should I someday be on the same path that they are, I will never forget how it was for them. Each day brings a new opportunity to learn and grow for me as they continue on their journey of forgetfulness.

March 5, 2010

Tonight in the ER, Dad told me he needed to talk to me. There was something he'd been thinking about a lot lately. I was then asked to make a promise that I know I will never honor. Dad insisted I promise that if Mom should die first I would see to it he could join her as soon as possible because he is only staying alive to take care of her. He said, "She is my breath. She is my soul. And I CANNOT have a life without her." I believe him.
But I will not do anything to hasten another persons departure from this world!
I truly believe he would die without her. I have seen it happen a couple of times in my life. Where a mate dies and the remaining mate simply gives up and dies within a very short time. In each case, an undying devotion was present in the relationship. I think that's why it happens. The connection is, quite simply, too strong. I believe it is likely he will simply slip away quite soon after she does. And he will be eternally content and happy to live his afterlife loving her.
I watch him tell her of his love (sometimes 20 or 30 times in a day). I watch how he hovers over her. Trying to help but constantly in her way. How he asks her over and over again, "Do you need anything, Sweetheart?" She considers it the height of rudeness to talk through a bathroom door but Dad will start knocking in 5 min, banging at 7 min and yelling at 9 min, "Sweetheart, can I get you anything?" Her tears break my heart. He smothers her with attention and suffocates her with love.

Without a doubt, she loves him, too. But she gets so tired sometimes. She is of frail mind and body. Far frailer than he. Her soul longs for a little peace and quiet.
She too thinks she is losing her mind. At this point she is still in touch with reality enough to understand, when I remind her, "It's just that touch of Dementia" she has. Her heart breaks as she watches Dad's mind deteriorate. And she is the most frequent recipient of his extensive, demented tirades. Though, I can say I am easily #2 on that list.

Our days are hard. Our days are incredibly complex. There are days I wish I were anywhere but here. There are days when I can't stop the tears of frustration, anger, and heartache. There are days when I feel too tired to lift my head in the morning. But I always do. My duties are numerous and my responsibilities are heavy. But they are mine because I choose it.
A friend of mine recently made me admit that I knew before I got here that it would be really tough. I did. But I could not have, in my wildest dreams, imagined how tough it would really be. You really have to walk this walk to even begin to understand.
I get it now in a way I didn't before. I came here to help them get their last wishes. They want to die at home. They want a modicum of dignity. They want a little bit of privacy. They want a semblance of independence. They want to go back to younger, better days. They want to share their memories and they want to, in some way, influence the the lives of the children in our house. The children are something they look forward to every day.
I am committed to helping them die. I am here to take care of them. I am here to help keep them alive for as long as possible. I am here to do all I can humanly do for them. But most importantly, I am here to try to understand them. I am here to listen to them. I am here to LOVE them.

I will not honor this promise. I made it because I was dealing with a need to put a demented mind at rest. I was buying us all, most importantly Dad, a little peace of mind. I hope.

This morning we went to the Neurologist for some tests. At the end of the visit Dad made a joke about being sent there because somebody thought he was going crazy. I asked the doctor, very softly, if he could please assure him he is not going crazy and explain to him what was going on. The doctor turned to Dad and said, "Mr. Felker, You are not even a little bit crazy. You have Alzheimer's Disease. Do you know what that is?" Dad explained it fairly well. The doctor pointed out to me quietly that Dad had been told at some point and either was in denial or possibly forgot. Dad sat there processing the information and thanked the doctor politely for telling him.

As of 3:17 a.m. he has so far gotten it but it is a long time til morning and he is currently asleep. That's a lot of hours to forget. If he does, we will start over again. And I will always be in awe of his love for her! And I will always be here to love them both and help them through this, the end of their lives.

March 10, 2010

Ok, Mom's list of illnesses is rather long (especially when you're 87). She has CHF (Congestive Heart Failure) and a leaky valve, COPD (Chronic Obstructive Pulmonary Disease), severe Manic Depression (Bipolar Disorder), OCD (Obsessive Compulsive Disorder), Carotid Artery Stenosis (at 60%), Chronic Asthma (with frequent bouts of Severe Acute Asthma), Debilitating Arthritis in her back and Dementia. She is confined to a wheelchair 99% of the time for 2 different reasons, the exertion of walking puts a terrible strain on her heart and the Stenosis causes her to feel light-headed and dizzy when she stands. She is on 24 hour oxygen (which she hates with a passion and calls her leash). She is frustrated with the quality of her life but at least she is alive (which I frequently point out to her).
Mom is currently in a Manic episode and it isn't hard to figure out the catalysts this time. Since Feb. 16th we have had to make 3 different 911 calls (all of which resulted in someone going to the hospital, one resulted in hospitalization) and 2 trips to the ER by car (one of which resulted in hospitalization as well). Dad was also diagnosed officially with Alzheimer's Disease and this time the doctor told him so. And, as if that weren't enough, their caregiver of over 3 years is getting ready to stand trial for criminal neglect to the elderly (most specifically my in-laws). It would be enough to drive anyone crazy. At times, I am almost glad she has an escape.
There is never a way of knowing how long an episode may last. Sometimes it is only a day or 2, others it can last a week or more. I have heard it likened to a shot of adrenaline that consumes one with boundless energy. She is unable to stay focused on any one task for more than a few moments at a time. She may have 8 or 10 projects going at the same time. When it is over, she will be exhausted for days. Together we will battle the overwhelming depression that sinks in once the euphoria has faded.
It is a vicious cycle that has claimed many great minds of our time Sir Winston Churchill, Abraham Lincoln, Theodore Roosevelt, Lord Byron, Victor Hugo, T.S. Eliot, Rudyard Kipling, Ernest Hemingway, Leo Tolstoy, Mark Twain, Virginia Wolff, Charles Dickens, Charlotte Bronte, Tennessee Williams, Hans Christian Anderson, Robert Louis Stevenson, Christopher Columbus, Bach, Beethoven, Tschaikovsky, Chopin, Mozart, Schumann, Handel, Rachmaninoff, Cole Porter, Irving Berlin, Noel Coward, F. Scott Fitzgerald, Albert Einstein, Sir Isaac Newton, Charles Darwin, Florence Nightingale, Vivien Leigh Butler, St. Francis Of Assissi, Martin Luther, Thomas Edison, and Robert E. Lee just to name a few.
Genetic factors contribute substantially to the likelihood of developing bipolar disorder. There is a history here of Manic Depression (even though the term is rather new). Mom's mother may have had it, as well as two or more of her siblings (they had the symptoms just not the diagnoses). All 3 of her daughters (one is no longer with us) have it. One of my own daughters has it, as do a couple of the other grandchildren.
The diagnosis of bipolar disorder can be complicated by coexisting psychiatric conditions such as obsessive-compulsive disorder. In the elderly, recognition and treatment of bipolar disorder may be complicated by the presence of dementia or the side effects of medications being taken for other conditions.As yet there is very little evidence-based research to guide management of bipolar in the elderly as opposed to adults in general. Mood stabilizers may significantly reduce psychotic episodes but they can not eliminate them. To date, there is no cure for this insidious mental illness. There are only treatments to help keep it in check.
As a caregiver who deals with mental illness on a daily basis I strongly advise anyone who thinks they may have Manic Depression or knows someone that may be suffering from it, to seek professional help. Mental illness is just that, an illness. There is help available (with proper diagnosis and treatment) that can improve the quality of your life and help you deal better with the illness that torments you.

March 11, 2010

I heard something so sweet today it made my heart ache and my eyes swim with tears...

I was getting the boys ready for school when Dad wandered into the kitchen. He came straight to me and gave me a big hug. "Shari, is it morning or night?" I assured him it was early morning and I was getting ready to take the boys to the bus stop. I suggested he go back to bed. With a squeeze of my arm, he turned and shuffled off in the direction of the bedroom.
As I headed for the stairs, I heard him talking to Mom. "Del, Shari says we can go back to bed. I think that's a good idea. Don't you? Let's go back to bed, Sweetheart, and cuddle for a while." For once, she didn't ask him to repeat himself.

Sometime after my return, I went upstairs to check on them. My fingers itched to take a photo as I peeked in their doorway. Sitting propped up in bed, side by side, their bodies inclined toward one another, they were sipping cups of hot coffee and obviously quite content.
I ducked back with tears in my eyes (for the second time today) and went to the kitchen. The poignancy of the moment was demolished as I turned the corner. I giggled as I took in the sight that greeted me. The freezer and microwave doors both stood wide open. The Half & Half stood next to the instant Community Coffee on the counter (hers) the top of the sugar bowl was MIA. The generic coffee was across the room with the Equal sitting next to it (his) also missing the top to its bowl. When I opened the refrigerator to put the cream away, the mystery of the missing tops was solved... Both tops were upside down in the egg holders. I picked 2 Mardi Gras cups out of the trash can and got them washed, dried and hidden. Dad repeatedly throws them away though I have explained over and over again that they are the kid's cups.
I still haven't found the measuring cup I left out to dry last night. I heard somewhere once that a little mystery in your life can be good for you. In our house they crop up daily. I can't count how frequently I hear that things around here "just move themselves". But I have a few theories on that...

March 17, 2010

Dad's doctor prescribed a cream that has to be put on his arms twice a day. When we sat down tonight to do his arms, I was quite pleased at how well it was going and felt him relax. Suddenly, he leaned forward and in a low voice, he said, "I've been having some problems with my penis, and I figured you are who I should tell about it."
I see his point, I am the one that schedules the appts and sees to it the get there. I administer their meds, I cook them their meals and I take care of them in every aspect of their lives. So, of course, he would tell me if he had a problem. He would expect me to have a solution for him. But these aren't exactly words you think you will ever hear from your father-in-law.
I continued to rub the cream into his arm as he watched my hand moving on his scaly skin. "That's it!", he exclaimed. "Can I put this on my penis? I think it just needs a little lubrication!"
To say I was speechless, is a gross understatement. I announced we were finished, told him I wasn't sure that was a good idea and assured him I would call the doctor tomorrow to see what he would suggest. Then I made a beeline for the door.
Can't wait to see what tomorrow will bring...

March 20, 2010

Ayla is 3 years old. She has connected in a way with her great-grandparents that is very unique. Though Mom (Muner) is legally deaf, she can hear Ayla quite well. More importantly, she can understand what she says. Ayla has taken it upon herself to "help" with Muner and Pop. In the mornings, she helps Mom get out of bed and into the wheelchair. She gathers a robe, lipstick, an inhaler (which she always shakes up before handing it to her), hairbrush and Mom's orthopedic socks. As soon as Mom has her socks on Ayla brings her a pair of slippers and slides them on her feet. Next thing you know, here comes Mom being pushed by Ayla straight to the scales.
There isn't much on earth more touching than watching a 3 year old try to hold the very shaky hand of an 87 year old while she steps on the scales. When Mom is back in her chair, Ayla hops on the scale so Mom can see what her weight is today. Ayla immediately pushes her to the table while I gather the blood pressure machine. Ayla pushes the buttons as soon as I have it in place and has her own notebook that she pretends to jot the numbers in. When we are done, she announces that Muner needs her memicine and breakfast. And then proceeds to hand Mom her oxygen tube and stands at the ready until it's in place. The instant it is, she turns the machine on.
If you ask Ayla what she wants to be when she grows up, she replies, "Me's gonna be Princess/Doctor." Because of her intense interest, Mom wanted to take her to a doctor's appointment.
So yesterday was the big day. We arrived at the office and Ayla insisted on opening all the doors. When we got settled in the waiting room, she sat quietly looking at several magazines until they called us back. When we got into the room, she became a whirlwind of activity. I have never seen a child so interested in EVERYTHING in a doctor's examining room. She was completely fascinated by the "other- one-kind" of blood pressure machine and asked the nurse several questions about things in the room.
It was an adventure for her and our doctor was delightful about it. Especially as he was trying to examine Mom and answer all Ayla's questions at the same time. I doubt I will do it again any time soon but it was a learning experience for us all.

Ayla knows when Dad is having bad Alzheimer's moments and will warn others that "Pop sick today". She will cuddle up to him more during these times and if he yells at her, she will simply walk away. She understands that he can't help it. On good days, he will tell anybody that listens that she is the cutest little girl he has ever seen. It really ticks Mom off when he points out that includes his own kids. Ayla is allowed to sit in his chair any time she wants to and has even been known to crawl into bed with them in the wee hours of the morning.

Mom is enchanted with Tyler and spends so much time watching him at the dinner table that she forgets to eat. She allows and encourages behaviors we are constantly having to correct. One of her favorite games at the table is to send wind-up toys across the table to Tyler while we are eating. Throwing food can cause her to burst out laughing. Running in the house is often considered a "cheerful" sound. Playing with things a child shouldn't can easily be a case of "Isn't that precious?" and can easily be a case of "Don't touch that" the next time.

Dealing with Dementia in the elderly while chasing 4 active children at the same time can be very trying. It can also be amazingly rewarding. It can be frustrating while it is fulfilling. It can be heart wrenching while it is heart warming.

And when all else fails, I call in the 3 year old cavalry. She can get the grownups to do most of the things they give me static about doing. All it takes is a little tilt of her head and an adorable smile... usually they become putty in her hands...