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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.

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.




THE WAY OUR DAY STARTED


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?”




A COUPLE OF HOURS LATER

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?”




THIS AFTERNOON

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)

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!

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.

May 20, 2010

I got up this morning excited at the prospect of going for a long walk on the beach. My solitary walks have become a vital part of my mental health routine. I haven’t been able to resume the habit since 3 days before Mom was hospitalized (over a month ago).
I realized I had neither hat nor sunglasses as I headed home from getting the boys off to school. I decided to go home, change into my swimsuit (might as well get some sun) and grab both. But, when I arrived, Richard was up and getting ready to go job hunting. I, of course, have to be here so I settled on a compromise of going later when he got back home.
As usual, God had a plan. If I had gone, I would have missed a very important telephone call. Just before Richard left, the house phone rang and he said it was for me. I absolutely never get calls on that phone. He brought it to me and sat down to see who it was.


It was the State Attorney’s office calling to tell me, “In light of your mother’s recent death, we don’t have enough evidence to take Ms. M (T, the infamous ex-caregiver) to trial. Her deposition is null and void because she can’t testify now.
We want to offer her a diversion package that would, of course, include a stipulation that she can never have contact with anyone in the family again. If she did, she would be incarcerated.”
“But what about stopping her from being able to do this again?” I asked as I felt panic begin to rise inside me. “Don’t you get that she preys on the elderly? She takes their money and drains them dry!”
“Well, we do not have the authority to take away her license.”
“What license?” I was almost shrieking. “She is not licensed to practice in the medical field. She let it lapse a couple of years ago and hasn’t renewed it as of last week. Look it up on the internet. I do every couple of months! Her business license???”
He interjected, “You would have to get in touch with the licensing bureau about that…”
“Look, Mom couldn’t have testified anyway. I have tried to tell you that before. She had DEMENTIA. I want to know what can be done to stop T from going out and doing the same thing to other elderly people?” I cried, “The elderly need protection from people like her! I don’t care whether she goes to jail or not. I just don’t want her doing this to anybody else!”
His voice filled with compassion at my outburst, “I will see if we can get a condition set into motion that she can NOT work with the elderly again. I’ll see what I can do and give you a call back, probably this afternoon.”
“I’m here to help you,” he reminded softly. “If this goes forward, your dad is going to have to come in and give us a deposition.”
My voice with thick with the frustration I felt, “He isn’t capable of that! He has Alzheimer’s. He is so confused on the T issue, he thinks she was stealing their pills and going to Mexico to sell them. Half the time, he will tell you that and the other half of the time, He will tell you he thinks she is in jail. He can’t remember what he ate for dinner 5 minutes after he leaves the table!”
“If we attempt to prosecute, we won’t have any choice. His condition will be taken into consideration but he will HAVE to give us the deposition. Let me see if I can get the no elderly condition to go through first.”


As I hung up the phone, I was livid! I get that Mom was T’s main victim. I get that maybe T shouldn’t go to jail over the missing pills (I still think, with good reason, someone else was stealing them). But what about the unauthorized charges on Dad’s credit card? What about the evidence of neglect (and her poor judgment) as time went on? What about the things that were stolen from the house (yes, I know it couldn’t be proven but she and her employees were the only ones here when the items of considerable value went missing)! I do not get why she should be allowed to have ANY opportunity to EVER prey on another elderly person again.
I am indignant! I am furious! I am in physical pain at the thought that she will get a slap on the wrist after all she has put this family through. And I am sickened by the possibility of not being able to prevent it from happening to someone else…

***** If you are lost about T and how she fits in, please see “It Only Takes One Bad Caregiver to Ruin You” **** originally published on this blog on March 22, 2010.

Here We Go Again... And Again

We went to the doctor yesterday for a follow up on Dad’s light-headedness, low blood pressure and heart rate, and dizzy spells. I also wanted his arm checked out because I have been unable to completely stop the bleeding. I was reassured to hear I had done a good job debriding it and to keep doing the same stuff we always do with these types of injuries.
In light of the pain in the back of Dad’s head, the doctor was once again referring us to the Neurologist. The dizzy spells could be a symptom instead of a side-effect.
We went over his medications again, cutting several more in half. The biggest change for Dad would be cutting back his Trazodone from a whole to a half. (Trazodone is an antidepressant medication. It is thought to increase the activity of one of the brain chemicals (serotonin) which may become unbalanced and cause depression.
Read more: http://www.drugs.com/trazodone.html#ixzz0nv80eUx2.) It can be very useful for the treatment of sleeplessness. As we learned last night, Dad is not ready for a change on this medication.

Dad took his meds at dinner as usual. He was feeling off-kilter throughout dinner. My sister-in-law, Susan, and I left to go pick up Dad’s prescription. When Dad finished his dinner, he told Richard he was tired and going to bed (even though it was barely 7:30 and still quite light outside).
We got back just before dark. I went to check on Dad. His night light was off (which is highly unusual) so I leaned down and turned it on, which woke him up. I assured him it was “just me” and approached the bed. He was lying on top of the made bed without a shirt on.
I held out my hand. “I need your patch,” I pointed out.
“I took it off,” he replied automatically. His hand slid over his bare chest until he discovered the patch still firmly in place. “No, I didn’t.” He removed it and handed it to me.
I showed him that I had his credit card and said I would put it in his wallet. He nodded.
“Dad, are you ok?”
“I was feeling flukie at dinner so I decided it was a good idea to go to bed.”
“Flukie how?” I asked as I came back to stand beside him.
“I don’t know,” he couldn’t explain it. “Just flukie.”
“Dad, does your head or neck hurt?”
“No, I just don’t feel quite right… you know… I just feel kind of flukie.”
We were obviously getting nowhere with this conversation. I bent down and kissed his cheek. “If you get up, use your walker,” I reminded him. Please, Dad, I’m trying to keep you safe. I need you to help me. I need you around here.” He patted my hand and told me goodnight then closed his eyes.

I went back downstairs to hang out on our porch with Richard and Susan. About 30 minutes later, Susan went up to the kitchen for ice. She stepped out the kitchen door, closed it behind her and headed down the outside stairs.
She only made it a few steps down when the door flew open and Dad leaned out. “Susan! Susan! Did you hear me calling you???”
Susan froze on the stairs without turning around. “Yes, Dad. I did,” she replied with a sigh.
“You need to get back in here. Go in that room and go to bed!”
In her soft little singsong voice, she said, “Well, Dad… I’m hanging out down here with Richard and Shari right now. We are talking and visiting.”
His anger was palpable as she resumed her descent once more. “You don’t need to be hanging out,” he spat. “Our neighbors aren’t use to people behaving like this. Carrying on and making noise til all hours. These are decent hard working people in this neighborhood. They don’t like to be disturbed.”

Please note, it wasn’t even 9:30 yet and we had just been sitting around talking. We didn’t even have music playing. The bottom line was, Dad couldn’t sleep and the dementia was winding him up. As he closed the kitchen door, still mumbling, I made a decision. I told Richard I would be right back. I headed up the stairs and into the kitchen. As soon as I stepped inside I asked him, “Where is your walker, Dad?”
His glare softened as he looked at me. “In the bedroom. I forgot it again. But I can’t sleep with all this going on.”
I slowly began guiding him across the kitchen. I could feel his agitation bristling in his muscles. He stopped short and turned to me. “How many people are here right now?”
“6” I replied.
“You and me are 2. Richard and her are 2. Who else? That’s only 4.”
“Jordyn and Cameryn make 6,” I pointed out. Jeremy was at work so I deliberately left him out of my count. I knew where this was headed. We have been through this so many times before.
“Now, listen to me,” he implored me. “And don’t go setting pissed off. You always get pissed off when I say this.” I nodded but kept my silence. Here it comes…
“There are too many people in this house. We shouldn’t be doing anything that can draw our neighbors attention to us. They are all millionaires and they just aren’t use to a lot of noise and people running around. If we piss them off,they are going to go to the Board (Homeowner’s Association) and we are going to get thrown out of here. There are too many people here! I am just trying to make sure we don’t lose our house! Nobody wants to listen to me. You all think I’m just a crazy old man…”
I slowly counted to 10 so I would remain patient and quietly said, “I don’t think you’re crazy, Dad.” I let that sink in and asked, “Dad, when you and Mom brought your kids here weren’t there 7 of you in a house?”
“Hell,” he answered. “There were usually 10 or 12 of us. Friends of the kids, friends of ours…”
I felt him beginning to drift into old memories. I touched his arm softly and drew him back to the present.
“Was it a problem to have that many people in the house?”
“No,” he reluctantly admitted.
“Then I guess I just don’t understand what the problem is.” I handed him ½ a Trazodone and a glass of water.
He took it from me and popped it into his mouth. As he chewed it up and swallowed it, he thanked me. He said somewhat apologetically that he must have forgotten to have taken it.
“No, Dad. Dr. Hight wanted you to try taking half of your sleeping pill but that’s just not going to work tonight. You are cranky and I’m just trying to help you get some sleep. You look worn out.”
He hugged me and turned back to shuffle off to his room. I followed him closely watching him carefully for any signs of unsteadiness.
I got him settled into bed again… and reminded him to use the walker if he got up again… and kissed him goodnight again… and I told him I loved him again… and he thanked me again…
And today we will begin it all over again…

"Jack & Maurine"

May 7, 2010


The extreme down of having to go to the hospital for lab work is not being able to eat or drink after midnight. This can be excessively difficult with Dementia patients because they forget they aren’t allowed anything, they forget they have an appointment, and they forget to tell you if they slip up and eat or drink something.
The extreme up is there is a really good chance that Dad will run into at least a few people he knows and will have an unexpected opportunity to visit. It is a very social experience for him.
As we walked into the hospital this morning, Dad quickened his step. “There’s Jack,” he announced cheerfully. “I haven’t seen him in ages!”
I moved further into the room while he made a beeline for his friend. As I reached a seat, Dad loudly called out to me, “I’m gonna sit here and visit with Jack for a bit.” I nodded and smiled in response.
A woman joined them and lavished Dad with hugs and regrets… first for Mom’s passing and then for not having attended the memorial service. I could clearly see that Dad recognized her but couldn’t remember her name. The three of them took seats and proceeded to talk in loud voices as people in there 80’s often do.
A good portion of the people in the waiting room looked up when Dad told them his “drill sergeant over there was making him use the walker so he wouldn’t fall flat on his face”. Several people chuckled as he pointed to me and announced, “That’s my daughter-in-law she drives me everywhere and takes care of me.”
It only took me a moment to figure out that the couple he was speaking to were the “Jack & Maurine” that had sent a lovely sympathy card with no last name, only a return address. Only yesterday, I had done a neighbor search online with their address to determine what their last name was so I could address their thank you card. I wondered what the odds of that happening were.

I listened to the conversation (along with the majority of the people who sat waiting). Dad proceeded to tell them the story of how his dear friend (and doctor) had taken away his driving privileges and then told him they had to have someone live with them and care for them all the time. Then his doctor had abandoned them and moved to Montana to ride his motorcycle. He told them how he had hired caregivers until they had been robbed “half-blind” and had spent most of their life savings trying to pay these girls. He told them he had called his son Richard, who had come running immediately to help care for them and had moved his family here. He said Richard and I had saved his and Mom’s lives (slightly ironic to me).
He jumped forward to tell them how terrible it had been to watch Mom die a couple of weeks ago. Then he announced that Pastor Pete (he is their pastor, too) and I had saved his life because we said he didn’t have to bury Mom. He chuckled as he said, “She’s at home sitting on the dresser. I wonder what she would say about that?” The reactions to that comment around the room were many and varied. Maurine assured him she thought it was wonderful that he could keep her right there where he wanted her to be. Dad seemed appeased that it was ok with his friends that he intended to keep Mom at home with him.
Shortly after that, Dad was called to the back. Maurine immediately made her way to where I was sitting. She introduced herself and explained that she had known my in-laws since the early days of moving here. They had all arrived within a year or so of each other and had attended the same church and beach club for many, many years. We chatted for several minutes before she told me how sweet she thought it was that Dad was keeping Mom on the dresser. I smilingly pointed out that she was actually sitting on top of her jewelry box.
The elderly lady laughed heartily and shook her head, “That is so perfect. I wish the girls were still alive so I could tell them. I can’t think of a more appropriate place for Del than sitting on top of the family jewels! That is the sweetest thing I’ve ever heard”
The chair I was sitting in began to shake as the lady sitting one seat over from me, on my left, tried to contain her mirth. I looked over at her and started to shake myself. She had tears running down her cheeks as she tried desperately not to laugh out loud. It was all I could do to turn my attention back to Maurine as I thanked her so much for stopping by. “Such a pleasure to meet you and thank you again for the lovely card you sent. Please come by the house to see us sometime. Dad would love to have visitors. He gets rather lonely these days,” I pointed out. Maurine shuffled her way back to check on her husband, Jack.
I looked at my laughing seatmate and finally couldn’t help it. I began to laugh softly too as Maurine announced loudly, “I went to visit with Shari, Dear. She’s Bill’s daughter-in-law, the one that’s letting him keep Del at home. Don’t you think it’s romantic to want to keep your dead wife with you? She seems like such a nice girl.”
The lady next to me said laughingly, “I bet things are never boring for you.” I had to agree. We chatted for a bit.

After a few minutes, Dad returned. He made his way back to where I was waiting. Halfway there, he shouted, “They just wanted me to sign paperwork.” He then remarked to no one in particular, gesturing to his walker, “I don’t really use one of these things but my boss over there says I have to because I passed out the other day. I don’t remember passing out but if I was unconscious it makes sense that I wouldn’t be able to remember it. I learned a long time ago that it’s a man’s job to make the women in his life happy. What else are you gonna do, piss her off?” Shaking his head, he sat down beside me with a snort.
He caught the glance the lady and I shared as well as our silly grins. He looked immediately suspicious. “Are you two talking about me?”
“No, Dad. Should we be?” I replied.
“Of course, you should,” he grinned. “Why wouldn’t you be? I’ve had that problem all my life. Everywhere I go women just want to talk about me.”
I looked away with a big grin of my own.
He was called to the back at that moment and he promptly rose and headed toward the door. I called after him, "Dad?" He stopped and looked at back me.
"Don't you think you should use this?" I indicated the walker he had abandoned.
"Nope," he smiled. "If I pass out here, I'm pretty sure they can figure out what to do." He winked at me as he went through the door.
I had been frantically writing down quotes the entire time all of this was going on. The lady next to me leaned over and said, “He’s so cute. I bet you have such a great time. He’s very lucky to have you.”
I rolled my eyes (which I do a lot) and replied, “He’s very cute sometimes. But I’m the one who is lucky to have him.” (I say that a lot too, just about every time someone tells me my in-laws are lucky to have me, in fact). To be honest, our lives are a two way street, Dad’s and mine… we give and we take, we lean on each other and we love each other. We are a family… and we are muddling through whatever life has to hand us. And we are making it one day at a time with God's help...

No Regrets Here

April 14, 2010

I was recently asked if I regret the decision to move in and care for my in-laws full time. I can honestly say NO. What I would have regretted is not being here for them when they so desperately needed me.

Are there things I miss? Sure, I miss having my own home. I miss the life I had before I moved here. I miss my cat. I miss my possessions. But the one thing I am not missing is the chance to love them and be with them as they slowly slip away.

I heard a term today that I was unfamiliar with, “The Sandwich Generation”. It is used to describe people who are taking care of their elderly parents while raising their children. That comes pretty close to describing our situation except that my children are grown and I am raising my oldest grandchild… and taking care of my in-laws.

Life with dementia gets very difficult at times. And sometimes, no matter how hard you try you will always feel like you didn’t do enough or say the right things. But when I want to complain about the things I am missing out on, I think about all they are missing out on. They can no longer drive… I can. They have lost almost all of their friends… I have lost so few. They have to have someone buy their clothes and wash their clothes… I can go buy my own and wash them myself. They have to have someone live with them and care for them… I am still healthy and strong. They get confused and have little or no short-term memory… I am not confused and I am able to remember.

I cannot change the way things are but I hope I can make things a little bit better for them. And if someday, I am in their shoes, I hope that someone will care enough to be there for me…

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...

Misbehaving to Get Attention

April 9, 2010

On my return trip from visiting my family, I came around the curve before the house. I saw Dad walking down the road toward me. This is really unusual. Like I have said before, he rarely walks farther than taking the trash out anymore. I pulled over next to him and he leaned in the window of the car. He reached his hand out to me. I grasped his hand through the open window. He told me he had really missed me. I asked if he had behaved while I was gone. He hung his head, with a twinkle in his eye, and told me, “not exactly”. He informed me he was taking a walk so I drove on home.
When I arrived at the house, Richard immediately warned me that Dad was having a “bad Alzheimer’s day”. I went up to say hello to Mom (Richard had her out on the back deck enjoying the beautiful afternoon). She greeted me with, “RED FLAG! RED FLAG!” before she released me from our greeting hug. I knew from repeated experience that she was telling me that Dad was having a “BAD DAY”.

Richard and I sat down outside with Mom and began weeding the flowerbeds for Mom. I had been home for over ½ an hour when I asked Richard to go find his Dad. He still hadn’t returned from his walk and I was getting worried. (Giggle) It turned out that he had returned at some point and was inside the house.

We all ended up inside getting ready for dinner soon after we discovered he was home. I had to do the weekly meds so I sat down at the dining room table and got busy. They had to have their evening meds with dinner. While Dad was setting the table I again asked if he had behaved while I was gone. Everyone had already told me he had been really hard to manage at times. He instantly looked contrite and admitted that he might have misbehaved a little bit. When I asked him why, he responded, “Nobody pays attention to me the way you do unless I misbehave. So, I do it to keep them on there toes.”
He came over to give me a big hug and said he would try to do better if it would help me out. Once again, I was reminded that a demented mind is often very childlike. And just as I would with a child, I said with a smile, “You better or the next time you’ll get sent to your room.” He smiled and assured me he would try to do better as he shuffled off to get the silverware he had forgotten on his 4th trip to the dining room.

10 Dementia Elderly Recommendations

1. Consider buying Long-Term Care Insurance while everyone is healthy.

2. Consult an Elder Law Attorney to get all legalities done right: Durable Powers of Attorney for Health and Financial, as well as Living Wills, Trusts, etc.

3. Realize when your elder says and does things that strike you as strange or illogical or irrational ¾ they are! Don't wait and just chalk it up to old age or second-guess yourself. Call the Alzheimer's Association (800-272-3900) and ask for a referral to a neurologist specialized in dementia who will perform a battery of blood, neurological and memory tests to accurately diagnose what type of dementia it is.

4. Ask the doctor about the medications: Aricept, Exelon, Razadyne and Namenda, which can mask and slow down dementia symptoms, keeping a person in the early stage longer. Make sure vitamin B-12, folate, thyroid and depression are checked, which can cause dementia-like symptoms. Have the doctor evaluate all medications for interactions. Optimize nutrition and fluid consumption.

5. Ask the doctor to consider prescribing an anti-depressant for your elder if needed, which will help to smooth out bad moods. And if you need an anti-depressant for yourself-get one!

6. When dementia surfaces, live in your elder's reality of what is true for them at the moment. Don't argue, question, or try to force logic or reason. Agree and use calm non-threatening body language, while you distract and redirect their attention to things they are interested in. Get them reminiscing about the old days, capitalizing on their long-term memory.

7. When illogical demented episodes surface, realize that your loved one may be trying to work through unresolved issues of a lifetime. Validate their frustrated feelings, go with the flow, and don't contradict, which may help them bring some degree of closure to difficult past experiences.

8. Enroll your elder in Adult Day Health Care, if possible, where professionals are trained to manage dementia patients. By maintaining a daily routine and keeping loved ones engaged during the day everyone will sleep better at night.

9. Call your Area Agency on Aging and the Eldercare Locator (800-677-1116) for resources, and attend a support group regularly.

10. Shift your perspective to being grateful for the lessons you are learning, even though they are hard. Celebrate the life that is left and stop focusing on the dying. You are required to make sure your elderly loved ones are safe, that they have good doctors and the right medications, but you are not required to let caregiving destroy your life, nor would they want that for you.

By Jacqueline Marcell

What is DEMENTIA?
Dementia (from Latin de- "apart, away" + mens "mind") is the progressive decline in cognitive function due to damage or disease in the body beyond what might be expected from normal aging.
Although dementia is far more common in the geriatric population, it may occur in any stage of adulthood. This age cutoff is defining, as similar sets of symptoms due to organic brain dysfunction are given different names in populations younger than adulthood (see, for instance, developmental disorders).

Dementia is a non-specific illness syndrome (set of signs and symptoms) in which affected areas of cognition may be memory, attention, language, and problem solving. Higher mental functions are affected first in the process. Especially in the later stages of the condition, affected persons may be disoriented in time (not knowing what day of the week, day of the month, or even what year it is), in place (not knowing where they are), and in person (not knowing who they are or others around them).

"Dementia" simply means the symptom of a deterioration of intellectual abilities resulting from an unspecified disease or disorder of the brain.

Alzheimer's Disease is one disease/disorder that causes dementia. Many other illnesses or "syndromes" can also cause dementia. Parkinson's Disease can cause dementia. A stroke can cause dementia. Even dehydration can cause dementia.

Many of the things that can cause dementia are treatable, even potentially curable.

If you have taken your elder to the doctor and received a diagnosis of "dementia" you haven't received a diagnosis at all. Unless you know what is causing the dementia you can't begin to treat it's root cause.

If your physician has diagnosed "dementia" it's time for a second opinion. You are probably dealing either with a physician who is not comfortable with the truth, or one who doesn't know how (or doesn't want to bother) to differentiate between all the possible causes of dementia. Either way, a skilled geriatrician or a neurologist who is comfortable with seniors would be a good place to start.

What is ALZHEIMER'S DISEASE?
Alzheimer's disease (AD), also called Alzheimer disease, Senile Dementia of the Alzheimer Type (SDAT) or simply Alzheimer's, is the most common form of dementia.

This incurable, degenerative, and terminal disease was first described by German psychiatrist Alois Alzheimer in 1906 and was named after him. Generally it is diagnosed in people over 65 years of age, although the less-prevalent early-onset Alzheimer's can occur much earlier. An estimated 26.6 million people worldwide had Alzheimer's in 2006; this number may quadruple by 2050.

The above is provided courtesy of SQUIDOO