Almost Three years

In just 5 more days we will see the 3rd anniversary of Daddy's death. I have come far in that time. The pain is no longer so raw and vicious. I miss him still, and I imagine that feeling will never go away.

My life has changed, as life does. I have moved from my home state back to my adopted state, and here I will stay. I may visit from time to time, but this is my home now. I have my true love, and have made a good life here.

I have made a new friend, and it is she who has prompted me to come back to this blog. She is an amazing and delightful woman who lives in Spain, and we have become friends through Facebook.  I feel a strong connection to her, as we are in many ways kindred spirits. Her mother-in-law is now suffering the horrors of Alzheimer's Disease. Please pray for her, and for her loving family, that they have the strength to endure. 

Mourning

The deep pain that is felt at the death of every friendly soul

arises from the feeling that there is in every individual

something which is inexpressible, peculiar to him alone,

and is, therefore,

absolutely and irretrievably lost.

~Arthur Schopenhauer

Grief and mourning are two different things. Grief is the immediate emotional reaction to the death of a loved one; mourning is the continuing pain that goes on far longer.

I have passed through the grief part, and now I mourn. I mourn every day for my father. I mourn for the wonderful Daddy that I have lost. I lost him first to Alzheimer's, and now I have lost him to death. How much loss can a person carry? I know that this is too much for me. I would give my own life to be able to see him one more time, to tell him once more how much I love him. The emptiness that his death has left in my heart and in my life is a black hole of pain.

We have endured Easter and survived his 89th birthday without him. Mom made it through their 64th wedding anniversary. Now we have to face Father's Day next Sunday, and my soul is bleeding out already.

Updated Facts & Figures

With Alzheimer’s, it is not just those with

the disease who suffer. It’s also their

caregivers.

• In 2010, 14.9 million family and friends provided

17 billion hours of unpaid care to those with

Alzheimer’s and other dementias.

• The economic value of the unpaid care provided to

those with Alzheimer’s and other dementias

totaled $202.6 billion in 2010.

• More than 60 percent of Alzheimer’s and dementia

caregivers rate the emotional stress of caregiving

as high or very high; one-third report symptoms of

depression.

Alzheimer’s is not just memory loss.

Alzheimer’s kills.

• Alzheimer’s disease is the 6th leading cause of

death in the United States and the 5th leading

cause of death for those aged 65 and older.

• Alzheimer’s is the only cause of death among the

top 10 in America without a way to prevent, cure,

or even slow its progression.

• Deaths from Alzheimer’s increased 66 percent

between 2000 and 2008, while deaths from other

major diseases, including the number one cause

of death (heart disease), decreased.

**Alzheimer's Association, 2011

Gone

Daddy died at 9:25 last night.

Updated Facts & Figures

This article, from USA Today, is a wealth of knowledge. It is also terrifying, shocking, and depressing. Sadly, I also found it unsurprising.

http://www.usatoday.com/yourlife/health/medical/alzheimers/2011-03-15-alznumbers15_ST_N.htm

Walter's Willie

Wee Willie Winkie rins through the toon,

Up stairs an' doon stairs in his nicht-gown,

Tirlin' at the window, crying at the lock

~William Miller

There is a resident at Daddy's nursing home named Walter. Walter is a very little old man, and looks astonishingly like the man from "Monopoly". He spends most of his time curled up quietly in his wheelchair, bothering no one.

That is, until one day while I was visiting Daddy I heard Walter muttering to himself. I happened to glance over, and Walter was sitting there with his pants completely down! I damn near died. Thankfully the nurse saw him, came over and yanked his pants back up, admonishing him NOT to do do it again. Well, she had no sooner turned her back than YANK! Walter had his pants down. She came back over and YANK! pulled them back up again. Once again, she turned away and YANK! Walter's pants were around his ankles. YANK! The nurse pulls them up. YANK! Walter pulls them down.

This went on for fully 15 minutes, until the nurse finally moved poor Walter out of the sitting room and into his own room, where presumably he could be happily naked. I was greatly relieved, to say the least. Any more of Walter's willie peeping out at me and I think I may have gone blind.

Apparently this is Walter's "thing" (no pun intended) because others in the family have been treated to the same vision as me. It's darkly funny, of course, but imagine how the poor man would feel if he were aware of what he was doing. Unless he used to be a flasher..........

Suggested Reading

"I don't understand a word I'm thinking"
~Frances Nora O'Connor, Ph.D.

I have recently finished a book that I think would interest anyone who is reading this blog. It is titled "Still Alice" and is written by Lisa Genova. It is a novel that tells the story of a 50 year old female Harvard professor who is diagnosed with Early Onset Alzheimer's Disease. It is beautiful, lyrical, heartwarming, and ultimately hopeful and inspirational. I can not recommend it highly enough.

Surviving the Holidays

“The best of all gifts around any Christmas tree

is the presence of a happy family

all wrapped up in each other” ~Burton Hills

Yeah, right, Burton. We had no Christmas tree, and the family sure as hell wasn't happy. We WERE all wrapped up in Daddy, though. Does that count as a merry Christmas?

Sigh. We tried. We really did. We all put on our game faces and muddled through the holiday season. It was fairly dreadful, although not quite as suicide-inducing as I had feared.

Thanksgiving was easier than I had hoped for; Christmas Day was as well. I found the preparations for both; the anticipation, the second-guessing, the angst was nearly unbearable. In each case I was coping with my own emotions as well as those of my mother and the rest of the family. In the end, we tried to do some things the same and some things differently. As attempts go, it was a good damn try by all concerned. What was missing was Daddy -- both physically, since he couldn't come home, and in all other ways since he has no awareness of special days; if he had he wouldn't be able to remember.

Each of us dealt with it on our own level. I made Daddy a crocheted blanket for his bed. He loved it when he saw it, then promptly forgot where it had come from. I'm OK with that. I made it to keep him warm, and to warm my own heart by knowing it would cover him every night. The other gave him presents he could use and enjoy -- candy & treats, warm clothing, and so on.

At dinner, while saying Grace, my youngest brother mentioned how sad he was that Daddy wasn't there, but how happy he was that our great-nephew was with us. That truly summed up how I felt, too. I am so very, very sad that Daddy -- the Daddy I always knew, loved, and looked up to -- is not with us any more; instead we have this small, frail, forgetful old man who often doesn't recognize our faces. The Ying to that Yang is this beautiful baby boy, Daddy's great grandson, who is not yet two years old; he is new life and hope. Maybe the baby really IS the true meaning of Christmas.

Voices of the Damned

"...tormented souls I see around me wherever I move,

and howsoever I turn, and wherever I gaze."
~Dante, "Inferno"

A nursing home is never a happy place. At best, it is sad and vaguely lonely; at worst it is hideously depressing.

My father's nursing home is a "good" one --it is clean and bright, bustling with activity, and the staff is loving and attentive to the residents. It is as fine an example of this type of facility that you are likely to find anywhere, and I am happy that Daddy is receiving exceptional care.

That being said, a locked Alzheimer's ward can be horrendously heart-wrenching. Alzheimer's patients frequently wander, so the door is locked and has key-pad entrance and exit, a task too difficult for the patients to master. It keeps them safe, and that is a good thing. Many of the residents are end-stage, and thus are lost, lying in fetal positions, and apparently unaware of the world around them.

For me, the worst are those who are lost, yet still capable of some type of vocalization. There is Gertie, who giggle disconcertingly in a high-pitched squeal. Then there is Margaret, who moans and cries out "helpmehelpmehelpmehelpme" Most unnerving is Sheila, who shrieks like a banshee, seemingly without the need to breathe. There is no comforting these poor women when they are in this type of crisis, although the staff tries valiantly.

Are they merely acting spontaneously, without any causation, or are they reacting to remote memories? Worse yet, are they railing against the injustice of their disease? Do they somehow see how damned they are, from now until their ultimate death?

Whatever the cause, it all shatters me to hear and be unable to ease their misery. Like a coward, I cut short my visit and run home to sanity.

Fuck the Bird

Some hae meat and canna eat, -
And some wad eat that want it;
But we hae meat, and we can eat,
Sae let the Lord be thankit.

~Robert Burns

Why should I thank God, Robbie Burns? For fucking what--each holiday being worse and more stressful than the one before? What a great damn benevolent God ye hae' laddie.

I hate holidays. I've hated them since Daddy got sick. This bloody Thanksgiving makes me need to scream and rage. Daddy isn't here: why celebrate? He's dying slowly: why celebrate? He's spending his Thanksgiving--and every other holiday--in a nursing home: why celebrate?

I can't bear the thought of Thanksgiving without him here with us. If he were dead it would be different; this is a torturous limbo. I can't picture the table without him at the head. I can't picture him eating ground-up turkey in the group dining hall of a locked-down nursing home wing.

I hate this shit. And I can't "pray to a God that I don't believe in" to give me faith and love and joy. Fuck that noise. I'm just angry and depressed and not coping at all.

I have to stop. I"m crying to hard to see and shaking too much to type.

Damnable Metaphor

You can't pay enough money to cure that feeling
of being broken and confused.
~Winona Rider

Daddy has moved to his new nursing home, closer to home. He is even more discombobulated than ever, since he is in new surroundings. He doesn't have a sense of belonging to this place yet. That will come; of course it will just take some time for him to become acclimated.

He wanders around in his wheelchair. In his old placement he was safely comfortable, and knew everyone. "Rambling Man could have been written for him. He wanders here, as well. Here, though, he doesn't know how to get back to his room. He doesn't even know that his room is HIS.

In an effort to keep him from getting lost, I took a picture I had made and wrote his name and room number on the bottom. I posted it on the wall, at wheelchair-eye-level, so he can find his way back to his place. The picture I added to this post is the one I used for Daddy's sign.

Now if only I could find a way to post a sign that would direct his brain back to good health. Instead, I feel, once again, like I'm putting a Band-Aid on a gunshot wound. My Daddy's brain is lost; nothing I or anyone else can do will bring it back.

I cried all day today. Again.

The Nature of Reality

Cold hearted orb that rules the night,
Removes the colours from our sight,
Red is gray and yellow white,
But we decide which is right.
And which is an illusion?
~The Moody Blues

I have been thinking more and more about the word "reality" these days, so I dusted off my Webster's and looked to see what they had to say. Webster's defines reality thus: "the quality or state of being real". I found it to be an intriguingly philosophical definition.

For most of us, reality is multi-layered; the tangible bits of our busy days, the anticipations and expectations of tomorrow, and the regrets and joys of yesterday. That is reality, no?

Maybe not. Maybe Daddy is the one with the firmest grasp of what reality truly is. He has no sense of the past or the future, he has only the "here-and-now". As a result, his reality is very tangible: how he feels at any given moment, what he sees, hears, thinks is all he is aware of.

Whose reality is real--his or ours? I have no idea at all.

The Green Dress

No sensible decision can be made without taking into account
not only the world as it is, but the world as it will be.
~Isaac Asimov

When one helps a toddler get dressed, a wise person asks, "do you want to wear your red shirt or your blue shirt today?" The child then has the independence to make a choice, thus affirming his developing decision-making skills. The child also can't decide she wants to wear her fancy green Christmas dress to pre-school, since it wasn't one of the options given.

Point? Only this. The red shirt is keeping Daddy in a nursing home, the blue shirt is bringing him home with 24/7 care. The entire family knows, intellectually, that the red shirt is the best option. Sadly, though,we all want the green dress--for Daddy not to be sick, for him to remain the vital, active, vibrant nucleus of our family. And that is never going to happen.

Today I am crying and screaming to wear the green dress.

Where Do You Put The Pain?

They who go

Feel not the pain of parting; it is they

Who stay behind that suffer.
~Henry Wadsworth Longfellow

Daddy has ended up in a nursing home after all. He had fallen again and was hospitalized for four days, then sent to a local nursing home for rehabilitation. He has been there for two months now, and will soon become a permanent resident there.

Sigh.

This is where he belongs. He is getting very good care. He is kept clean and no one yells at him when he forgets things. He gets tons of stimulation all day long, from physical and occupational therapy to watching the business of this small world buzz around him. He interacts with people all day long, be they other patients or the wonderful people who work there. He is popular; he has friends; everyone loves him.

So why do we cry? We cry for the Daddy we have lost. The man who was the little league coach. The man who taught us to drive. The man who took us on vacations and bought us boats. The man who disciplined us without ever raising his voice (much less his hand) to us. The man who spent countless hours amusing children by telling silly jokes, performing magic tricks, impersonating TV characters, and making funny faces. The man who taught us, by his example, what kind of people to be.

My brother and I cried together last weekend. We cried a river of tears, and it wasn't nearly enough to release the pain inside us. Our father has always been the glue that held us together. He has always been strong in a quiet, gentle sort of way.

Now it feels as if we are standing on the shore, watching Daddy sail off all alone, drifting further and further away from us every day. So maybe now all we can do is stand together on the shore, holding hands, and giving each other the strength and love we need to get by...the strength and love we learned from Daddy.

I love you, Daddy. And I love you, too, Brother.

Angels Among Us

Sit down, shut up and listen. * First things first *
Easy does it * One day at a time * Just for today * Hang In There
* Let go and let God
~Alcoholics Anonymous

I chose those quotes specifically because sometimes my intellectual arrogance gets in my way. In other words, I can be a big, fat, know-it-all. I have found that when it comes to Daddy's disease, I know next to nothing.

I spend a lot of time at the nursing home. I was resistant to him going at first, but now I see that there is no other viable option. I watch things closely, having a naturally suspicious mind. I not only watch how my father is being treated, I watch to see how all the residents are cared for.

I now shut up and listen, take it easy, and try to get through one day at a time. I can do this because of the wonderful people who work at the nursing home. They are, without fail, kind and gentle souls who honestly love their patients. The are tender and kind with the patients, friendly and helpful with the families.

I could not do what they do. I can hardly bear to see what they deal with some days. But I swear, if I had to pick the people to watch over my poor, sick old father, it would be the men and women at the nursing home. They are, without exception, angels on earth.

The Light at the End of the Tunnel is a Train

Patience. A minor form of despair

disguised as a virtue. ~Ambrose Bierce

I can not go on any longer.

I am grown woman and have had a lifetime of experiences, both good and bad. I have always coped, albeit sometimes better than others.

I am not coping now.

Alzheimer's Disease isn't just killing Daddy. It's killing our family. It's killing me.

Daddy is in the end stages of the disease now. He is incontinent. He has lost most of his verbal skills: he often speaks gibberish, and frequently has difficulty understand what he hears. He sleeps most of the day, but is frequently awake at night, confused and frightened. Worst of all, his mood swings are out of control and he has become combative and violent.

This past week was a horror. On Tuesday night, after midnight, he got up out of bed and ended up falling in the kitchen. He started yelling, and Mom & I found him laying in a pool of blood. I couldn't get him up. Mother's solution was to (once again) call the non-emergency police line. The responding officer couldn't lift him either. Over Mom's protests, Dad was taken to the ER to be checked out. He wasn't seriously injured, and the cuts on his arm and hand didn't even need stitches.

The rest of the week was a nightmare of morning aggression. It's difficult to describe to anyone who hasn't seen it, but his moods shift on a dime, and never for the better. When the aide tries to get him to bathe, he literally freaks out, screaming and yelling (though generally not words; more like snarling and growling). This week he hit the aide, tried to hit Mom, and yesterday he spit at the aide. In between these high spots, he was nasty with me every morning.

Here is the issue. Well, maybe part of the issue. A BIG part. Maybe. Whatever.

Mother has become so mired in the immediacy of each crisis as it occurs that she has lost sight of the larger picture. She believes she is doing the best thing for Daddy all the time. News flash: she ain't.

She didn't want him to go to the hospital the other night because she didn't want all the emergency vehicles coming up to the house. What would the neighbors think? (hellooooooooo...........there's a sick, elderly man needing help?) She refused to go to the hospital with him, and wouldn't let me go, either. This horrified me. All I could think of was him being frightened and alone, or becoming aggressive and them needing to tranquilize him. the best she would permit is that I drive out there at 4AM to pick him up.

The violence in him frightens me. Not for myself--he's frail old man and I am a strong, healthy woman. However, I am afraid our wonderful aide will finally reach the breaking point and quit. I won't blame him when he does, but it will be a disaster of major proportions when he does. I am afraid that he will become violent with Mom, and hurt her. Also a major disaster.

I spoke to her about having him medicated for his moods. I have spoken to pharmacists that I know and trust, and have researched this myself. I have emailed the Alzheimer's Association. There are medications that may help stabilize him. Mother finally said she spoke to the doctor (a GP) who discouraged her from trying any medication, telling her that they will increase his risk of death. This is not necessarily the case. There are more than a few drugs available, and careful monitoring would certainly be in order. However, Mother again is doing her ostrich impression. Does she think this is going to get better???!!! She also has unwavering faith in this doctor, who is not a specialist and sees Daddy only twice a year. God knows Mother won't tell him the whole truth. So, Daddy won't get medication that may help. He won't have even a chance of trying something that may ease the problem.

And so I will go on being unable to sleep and having violent headaches and earaches from clenching my jaw, while feeling my stomach burn a hole in itself...all from stress. I will scream only inside my head, and try to maintain a calm exterior to the world. I will do this for as long as I can, but I know I can't do it much longer. I am on the edge of the cliff, looking down--and not hating the view.

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.