The Twilight Years Are Here

The Twilight Years Are Here

Sunday, April 22, 2012

Damned Spark Plugs

With this disease, time can be your friend if you choose to see it as such. On Friday, I was at my wit’s end. The ups and downs were just too fast and furious to keep up with. Dad was so far out of control, and at times, so far out of touch with reality that I was having a hard time keeping up.

The highlight of my Saturday was receiving a phone call from him late last night (he was upstairs and I was down). He had found my cell phone number on a piece of paper in his bathrobe pocket and thought I was a girl he had met in a nightclub a few days ago. LOL! He called to invite me to come over and spend the night with him! I went upstairs and assured him he must have been dreaming and he drifted off to sleep again.

Today, he woke up and came toward the kitchen. When he saw me, he stopped in his tracks and said, “I know this is going to sound stupid but where the hell are we?!?” A quick look at his face, and the cloud covering it, told me he clearly didn’t know.

I replied, “Four Mile Village in Santa Rosa Beach, Fl. We are in your house… the house you have lived in for 32 years.” Slowly I made my way to him and gently took his arm, leading him to his chair.

He put his elbows on his arms and buried his face in his hands. “Goddamn! Why am I so stupid?” He began to cry as I reassured him that he isn’t stupid, it’s simply his disease causing him to get confused. When he got hold of himself, he asked me what the name of the disease was. I told him Alzheimer’s. “That’s right. I knew that.”
Then he asked, “What is it? What does it do? Please try to help me make sense of all this.” As he stared into my eyes with the most heart wrenching of appeals, I searched frantically to find a way to explain it that he would be able to understand.

Taking a deep breath, I said, “Dad, it’s kind of like the spark plugs in a car. If one or more of them are misfiring, the engine doesn’t communicate properly. The neurons in your brain misfire sometimes. Sometimes they short out. It doesn’t make you stupid, it just makes you forget things and it makes you confused when it happens.”

He gave me a watery smile and asked, “Can’t we get some new spark plugs?”

“I wish it were that simple but it’s not.” I put my arm around him. “There is no cure for Alzheimer’s. There is no way to fix it but the medications you take are slowing it down.”

He turned to me. “This morning when I woke up, I went to the bathroom. While I was standing there, my mind started spinning, thinking about all sorts of things. It began spinning and spinning and spinning till everything ran together. When it finally slowed down, I didn’t know where I was so I came in here. When I saw you, I knew you would know the answers. I knew you would take care of me. You always take really good care of me.” He smiled, “Can I ask you a question?”

“Sure Dad. You can ask me anything.”

“Who are you married to?”

I softly replied, “Richard.” Dad shook his head and muttered, “Damned spark plugs”. In a flash I knew that we had each made a connection with the others world. It was an illuminating yet frightening insight. But one I am so thankful to have experienced.

Saturday, April 21, 2012

Battered & Bruised, Dazed & Confused

Today has been a nightmare, dealing with Dad. He is aggressive, defiant, belligerent and completely confused. This morning he lined up wastebaskets on the kitchen floor and refused to let me move them. He had no reason for his action other than he wanted them right where they were. It was over 2 hours before I could finally get them back in their rightful places.

This afternoon, he took pictures off the wall in the living room and laid them out on the floor for no apparent reason. As I was rehanging them, he asked me why I had taken them down. When I told him I hadn’t, he said the kids must have done it. I didn’t even bother to explain we were the only 2 people at home. Then he slipped out the front door and proceeded to go down the steps (which he is NOT allowed to do). I found him sitting on the steps calmly cleaning his fingernails. Bear in mind, he NEVER goes outside unless we have a doctor’s appointment or someone stops by. When I tried to patiently explain that he is not supposed to go up or down stairs, he got angry and began cussing and yelling at me. Nothing like a scene on the front steps to get your blood boiling. I simply threw my hands in the air and followed behind him as closely as I could.

During dinner, he was insistent he needed to call Richard. It rapidly became a fixation so I told him we would call as soon as he was finished eating. I dialed the number for him and handed him the phone. I was shocked to hear him cheerfully tell Richard how nice it was to meet his wife after all these years. Suddenly, I realized he didn’t recognize me at all. I’m not sure who he must have thought I was prior to that. The next couple of hours were spent trying to explain to him that he had met me for the first time today, that he has known me for 31 years and that I have lived here with him for the last 3. His comprehension of it was completely absent. This went on until suddenly, like a veil being lifted from his eyes, the recognition returned and with it came mortification at his actions.

He doesn’t want to use his walker all of the sudden and he gets angry when he is reminded of it. Yesterday, he pushed it into me on purpose. Today he actually lifted it and swung it into the back of my knees, while yelling, “If I want to use the f*cking thing I will!” It almost knocked me off my feet. If I roll it toward him, he either pushes it back at me forcefully or he snatches it away and bangs it on the floor. He is a petulant child about it. It has never been an issue before. He uses it because he knows he needs it. Surprisingly, he has been pretty steady without it. But it is a necessity to help prevent falls and he DOES have to use it.

This disease batters and bruises the heart, mind and soul (and occasionally the body). It sucks the breath right out of you. It takes you by surprise at every turn until you are exhausted and drained. It frequently leaves you dazed and confused. Now, all of this is from the caregiver’s perspective. Imagine for a moment what it must be like to be the person with the disease. Go ahead, just try. Never mind, you can’t and neither can I.

Friday, April 6, 2012

Dark Clouds Over My Head

I have seriously debated whether or not I should write about the following subject. It seems too, well, personal somehow. But I committed myself to being forthright and honest here. As much as I wish it didn’t, it bugs the heck out of me. And I can’t help wondering if anyone else has experienced such a thing…

As children we all have crushes, at some point or another, on an adult who in some way takes care of us or is kind to us. Teachers, preachers, doctors, nurses, neighbors, family friends, etc… they are all targets for admiration, affection, idolization, etc.

Dad is like a child in so many ways. Some are cute. Some aren’t. This crush he has is some of both, but mostly it’s just plain embarrassing. He will profess his undying love for me multiple times a day. He proposes at least once a day (and he is serious). When I gently remind him that I am married to his son, he usually asks me why I would marry Johnny (Johnny is his brother who died at least a decade before I married into the family). I point out I’m married to Richard (his youngest son) and he tells me I should get a divorce and marry him.

When he talks about me to others, he makes me sound like I am perfect. Perfect is something I am clearly NOT. In his eyes, I can do no wrong but that becomes a weighty responsibility in its own right. I make mistakes all the time. I make poor decisions. I am stubborn to a fault. I can be a downright bitch. But Dad never sees any of that because Alzheimer’s has given him the gift of “rose-colored glasses”. He sees what he wants to see about everything and everybody. If the situation is more than the glasses can handle, he simply forgets all about it. I find it very embarrassing for anyone to suggest perfection in another human being.

He is grateful for all I do and communicates it profusely. Now please, don’t get me wrong. It is wonderful to know that someone… anyone… really, truly, honestly appreciates the things you do for them and for others. But being told dozens of times a day is an embarrassment in itself.

I could go on and on here about specific incidents that have made me feel VERY uncomfortable. But, I won’t. Instead I want to focus on the way I handle the whole crush thing. I am gentle and slow my speech and movements down so that he can more easily follow. I thank him (for compliments and proposals alike) and point out that I am his daughter-in-law. He invariably gets sad and says, “I know but I love you and I can’t live without you.” And that, Folks, is why they call it a CRUSH.

I know there is no real solution for the situation. I know he can’t understand just how embarrassing it is for me (and would be for him, if he were cognizant). I know I can’t stop him from any of it. I often wonder if it’s wrong of me to wish I could. I remind myself I should be grateful for these sweet, loving, docile moments (and I’m sure I will be one day). But, right now, they are shadowed too heavily with the clouds of his infatuation.

Tuesday, April 3, 2012

9 Week Report Card= FAIL

I am deeply disturbed at the changes in Dad over the last 9 weeks. Since we began the Aricept 23 and the Zoloft, he hasn’t felt well. We have been to the emergency room and 2 doctors but everyone said we had to give it 6-8 weeks to allow his body to adjust to it. I called his primary physician today and requested that he be dropped back to Aricept 10 as soon as possible. We are going to try that for 2 weeks and if there is still no improvement, we will start adjusting the Zoloft. He is sluggish, lethargic, grumpy, cranky, and complains of his head, stomach, back hurting (he refuses pain meds). He gets defensive and hostile for no apparent reason.

He can’t tell me the names of his children (Melinda, Susan, Bill, Martha & Richard), when he got married (1940), when he joined the service (1940), how many missions he flew (48), how long ago his wife died (2 years on April 24th), when they moved into their home (1980), the list goes on and on. These are the verbal games we play daily. I’m not trying to teach him anything, I am simply trying to keep him exercising his memory. Lately, he doesn’t even get frustrated when he can’t remember something. He will turn to the person he is talking to and say, “I have a disease but I can’t remember what it’s called. You’ll have to ask my secretary.” To which I always reply, “Alzheimer’s, Dad.”

He fixates on things to the point I have to pray for patience, strength and wisdom. Unfortunately, it gets a bit wearing when we go over the bank statement for the 4th time in a day and the second I close my laptop, he asks me if I’m going to show him the bank statement (usually claiming he hasn’t seen one in years)! Now you do the math on this… on average, he and I go over the monthly statement at least 74 times a month (YES, I HAVE COUNTED). It takes about 20 minutes to go through it all and that’s with a paper that has the following printed on it:

+ Social Security…XXXX
= Income

Health Insurance…XXX
Prescription Insurance…XX
House Phone Bill…XX
+ Prescriptions…XXXX
= Out-Of-Pocket

To give you a bit of perspective, the income doesn’t even cover the mortgage so the out-of-pocket monthly is very high. (The number of X’s beside each, tell you how many digits there are to each item). Every time we go over it, I feel a little bit sicker. If my calculations are correct (barring ANYTHING unforeseen) we will manage to keep his roof over his head for only 2 more years. With that thought, I feel even sicker that unscrupulous, thieving caregivers caused him to have to mortgage his home to begin with. I pray that God will take care of it all because every door I have tried to open so far has slammed closed. I also pray that the sick feeling will fade away… or that Dad will someday get over this particular fixation.
He doesn’t want to get out of bed until after 1:00 pm. We argue over it almost daily. He has to be weighed, his blood pressure and pulse oxygen level taken, eat something and then take his medications. It has to be done in that order and it is MANDATORY! He seems to deliberately wait longer and longer each day. This, in turn, means I must nag him incessantly to get him up and going.

His will grows weaker and his stubbornness increases, it seems, simultaneously. There are no magic answers with this disease and there are no quick fixes… in fact, there are only delays.