Letter to My Uncle

I've developed a new philosophy...

I only dread one day at a time.

~Charlie Brown (Charles Schulz)

Hi !

I know you talk to Mom every Sunday. I'm sure you realize that she doesn't tell you (or Aunt June) the whole story about what's been happening. I've gotten more and more worried, and I just wanted to let you know some of "the rest of the story". Please don't let Mom know that I've let you know about this. You KNOW how she gets!!!

Daddy is getting much, much worse. He is almost completely incontinent now. His poor legs are so bad that very often he can't get his feet to move, or for his legs to hold him up. The confusion........well, all I can say is that it's heartbreaking. Mom spends 24/7 taking care of his physical needs. We have Ed coming in 3 hours a day, 5 days a week, but it just isn't enough.

At this point, I am really very seriously concerned about Mom and her health. The fact is, she is in very poor health. She looks awful, and is always tired. Of course she's 83, but she is absolutely exhausted from taking care of Daddy. She has had a chronic cough forever....I honestly have to say it's been years. She also is not breathing properly. She is often out of breath or breathing heavily...puffing, almost like she can't breathe. Even though I'm there with her, she still brushes it off when I try to talk to her about it. Well, she brushes off EVERYTHING I try to talk to her about. The situation is completely out of control.....even for control freaks like us!

I'm worried about so much. I worry about Daddy falling--which happens all the time--but I worry that he will fall and be hurt. Mom's answer (!!!!!) if I can't get him up is to call the local police. Unfortunately, they are so damned nice and helpful all the time that she doesn't realize that calling them isn't an answer. I also worry that SHE will fall. Or that Dad will hurt her, because his moods are incredibly unpredictable and swing on a dime. He's very weak, but he is still stronger than she is, and has been known to throw things from time to time....like his walker. The stress has taken a huge toll on her, both physically and mentally. I won't mention her inability to hear, or her worsening arthritis.

She won't listen to me. She won't listen to any of us. She is so focused on getting through each immediate crisis that she has absolutely lost sight of the forest for the trees.

The five of us talk constantly, and we all do what we can. Sadly, none of it is enough. I just don't know what to do anymore. I don't sleep, and have anxiety attacks and am getting TMJ. Don't ask about my stomach. That's just ME--the other 4 are all in pretty much the same condition. I know she doesn't realize how much the stress and worry is effecting us--since we keep it from her, of course. It seems that she thinks she is the only one dealing with the situation...and yeah, Daddy is her husband, but he is our father, and it is killing us, too. I know that I'm not the only one of us that cries herself to sleep at night. We all do.

The sad fact is that Daddy is dying a slow, ugly death without dignity. Mom is trying. We are ALL trying. It's just not enough anymore.

I didn't write this to upset you, although I know it has. I wrote to ask you for help. Please, when you talk to Mom, encourage (nag, berate, whatever) her to get more help in the house. If we had someone come in from 6-10PM it would make a world of difference in everyone's quality of life. By that time of day, she's exhausted and I'm just getting home from work. Getting him from the den to the bathroom to the kitchen table is a huge undertaking that can easily take 1/2 hour. Another 1/2 hour getting him back after dinner. It takes her at least that much time to get him ready for bed every night. (and getting him up and down from bed, dressed & undressed, is killing her back) If someone came in to handle all that for her, it would make her life much easier. It would also let her have more quality time with him.

She doesn't want anyone in the house. She doesn't want to pay anyone else, either. I get it. Sadly though, this is what she needs to do, and she can damn well afford to do it. Daddy worked hard his whole life to provide for us, and I know there is more than enough money for any care he needs. Sadder yet, she refuses to do it. I don't want to see either of them in a nursing home, but if either one gets hurt that's what will end up happening.

I'm sorry to have upset you. I really didn't want to burden you with this: I know you have enough on your plate. But, she DOES seem to listen to you more than she does anyone else, so maybe you can just make her see reason about hiring more help. I hope you can.

Information, please!

Something worthwhile from the Alzsheimer's Association:

http://www.alz.org/enews/033110.html

Doody, Redux OR: Sometimes Ya Just Gotta Laugh!

I used to believe in forever . . . but forever was too good to be true.
~Winnie the Pooh

One of the few parts of Daddy's personality that have survived the battle being waged in his brain is his sense of humor. Not often, but every now-and-again, a lightning bolt of comedy strikes. The other night was one of those times.

Mom, Daddy, & I had just finished dinner, and were still sitting at the kitchen table. "Jeopardy" was on, and we were all watching with varying degrees of interest. A question was asked concerning A. A. Milne and "Winnie the Pooh".

Daddy looked at me with "that" look on his face. "Winnie the Pooh, huh?" he asked me. I was already smiling, because I could see where this was heading. "Yeah, Dad, Winnie the Pooh" I answered.

With a big grin he said, "Hmmm.......so maybe THAT'S who's been stinking up my room!"

Yes, I know it's potty-humor on about a 2nd grade level. It still made me laugh out loud, which pleased Daddy to no end and made him laugh, too.

This little moments are what makes it bearable.......barely.

Faith and Blue Eyes

“Faith is a knowledge within the heart,
beyond the reach of proof.”
~Kahil Gibran

I have friends and family members who are deeply religious. I am not. I'm not even a tiny bit religious. I do not believe in God. At least, I don't believe in God in the way the vast majority of the world conceives a Supreme Being. I lack faith. I always have.

What I believe is that faith is something you either have or you don't. You can't wish for faith and suddenly have it. If that were the case, I would have already been canonized. To my mind, having faith in God is exactly like having blue eyes: some people do, some people don't. I am a brown-eyed atheist.

One would think that as I grew older (and hopefully wiser) I might have discovered at least a kernel of faith lurking somewhere inside me. I haven't.

Living here, watching Daddy die, has convinced me even more thoroughly that God does not, CAN NOT exist. How can there be a God who causes/allows anyone to die this way? How can anyone believe in a Supreme Being that permits a human being as good, loving, and wonderful as my father to be stripped of every shred of dignity, dispossessed of coherent thought, and deprived of the ability to communicate? How can there be a benevolent Father in Heaven that watches blindly as my father becomes incontinent? That refuses to intercede with a tiny bit of peace when Daddy is frightened and confused? How could a God turn a deaf ear on my father's bewilderment with the basic minutiae of daily life? How could a Divine Being watch idly as Daddy gets lost going from the kitchen to the den?

How can an All-Knowing, All-Powerful, Absolute Being allow any human being to suffer this way?

I wish I had faith. Maybe I would then be able to understand this devastating disease that is destroying my father inch by inch, day after day. I am still just a brown-eyed atheist with more rage and pain than I can cope with. Thanks, God.

"The Case of the Missing Poop" OR: "Doody Calls"

"That was the curious incident." ~Sherlock Holmes

I was visiting my sister last weekend. While we were sitting at the table on Sunday night, playing cards and joking around, our mother called. She chit-chatted with my sister for a few moments, and then asked to speak to me. What a story she had to tell!

Apparently, when she came downstairs about 7AM that morning, she found my father --as nekkid as a jaybird--sitting on the commode next to his bed, his adult diaper flung on the floor. Already this is odd, as most times he doesn't even seem to be aware that there is anything next to his bed, much less understand what a commode is and what it is used for.

Let me recreate the conversation for you......as it was told to me.

Mom: "What's going on here? What are you doing?" (you'd think this was obvious, wouldn't you?)

Dad: "I had a terrible accident."

Mom: "What do you mean? What happened?" (did she think he'd been out driving around all night?)

Dad: "I had an awful accident and made a mess."

Mom: "What are you talking about? What kind of accident? (somehow a naked man sitting on a commode wasn't enough of a hint?)

Dad: "I made a mess in my pants by mistake"

Mom picks up the no-frills brand of Depends and sneaks a peek inside. It's wet, but no poop.

Mom: "No, you didn't have an accident, there's nothing here."

Dad: "Yes, I did, too. A BIG accident."

Thinking that it may have rolled out of the adult diaper when he flung it off, my 83-year old mother now begins The Hunt for the Lost Poop.....under the bed, in the bed, under the commode......anywhere a piece of poop could possibly roll to. All this to no avail; the alleged poop eluded her.

At this point of the story, I was screaming with laughter, tears pouring down my face. Not only did I find the story a riot in and of itself, by then all I could hear inside my head was my sister singing, "On top of spaghetti, all covered with cheese/I lost my poor meatball when somebody sneezed"

The punchline? As of this writing, no rogue doody has been recovered. Daddy did, however, poop in the commode.

Hanging on

Avoiding humiliation is the core of tragedy and comedy.
~John Guare

Tonight, Daddy got up from the kitchen table and came into the den, all by himself. Instead of using his walker, he was walking behind, and pushing, his kitchen chair.

Do I laugh at the absurdity of the situation, or cry at the unspeakable sadness?

Hello, Operator

Conversation should touch everything,

but should concentrate itself on nothing
~Oscar Wilde

I spoke to Daddy on the phone yesterday. Weird, but in a nice way.

I called there accidentally, thinking I had dialed my brother's house. Not too unusual since both he and my parents have the same phone exchange. When my brother's girlfriend answered the phone and told me he was in the shower, I wasn't surprised. When she asked if I wanted to speak to my father I was floored.

It turns out that I had inadvertently had called my parents' house. My brother was having plumbing issues, so he was showering at Mom & Dad's. Mother was at church. Daddy was sitting there when she answered, so I talked to him on the phone for a bit.

I haven't spoken to him on the phone in, quite literally, years. Above and beyond the Alzheimer's, he is as deaf as a stump. He had a hearing aide for a while, but it broke and hasn't been replaced. That's another whole story. Suffice to say, this was the first phone conversation we have had in longer than I can remember.

What amused me is that I am not hearing well, either. I've had cedar fever allergies that morphed into a raging ear infection, complete with fluid behind my eardrums. I can't hear out of my left ear for love or money, and only a bit out of my right ear.

So we chatted, mostly about nothing. He was having a snack before dinner, and when I asked what he was going to have for dinner he told me "Cheese Doodles". I suggested that something more would most likely be served, and he answered that he didn't know about that, since no one had told him anything about more food. I told him I was home baking a cake, and he asked me to bring him a piece. He asked where I was living, and when he heard I was 1600 miles away he said, "Well, I guess you won't be here tonight, then". Marvelous! A glimpse of Daddy's humor, not quite lost yet.


It was fun for both of us, and it made me happy. Some days are good.