The Twilight Years Are Here

The Twilight Years Are Here

Friday, September 23, 2011

One Week Into The New Medication

Sept. 23, 2011

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

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

Thursday, September 15, 2011


September 15, 2011

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

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

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

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

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

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

Sunday, September 11, 2011

Memory of 9/11

September 11, 2011

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

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

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

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

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

Thursday, September 8, 2011

Delusional Day

Sept. 8, 2011

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

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

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

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

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

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