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!