A Caregiver Faces The Perfect Storm

 We had been through this before. Sort of...

At the end of August 2011, we were getting prepared for Hurricane Irene.

I care for my wife Valerie, who has Alzheimer's Disease and is bedridden. Her ability to speak is very limited, so I look at her body language, especially facial expressions to try and understand how she is feeling. When the weather is sunny and bright, it is a challenge to care for her. Routine is the only stabilizing force in caring for my wonderful wife.  When routine breaks down, for whatever reason, there is a cost that is paid, usually by my wife. I had gotten my wife on Medicaid in 2011 and she had Home Care aids 12 hours a day, 7 days a week for over a year now. They are the lifeblood in keeping the routine stable.

The weather forecasters and news commentators love a good story, a scary story, a story that has blood. That is usually the headline.  But many of us here in the New York City area, are well aware of the many times everything but frogs and locusts were forecast to rain down on us. Last years storm was bad, but not as apocalyptic as Hurricane Sandy turned out to be. So we all thought they were crying wolf again. Not this time.

Well, it wasn't just one wolf, it was a pack of atmospheric wolves that came at us on Monday, October 29th, 2012.  The perfect storm is more powerful than any enemy you can imagine.

At about 7:15pm Monday evening, one of the wolves ate the lights! Power was out. I was in the bathroom. Perfect timing I thought. I looked out the window and saw what looked like lighting. It wasn't lightning , the "lightning" I saw was from transformers exploding and lighting up the sky with the most surreal light I had ever seen. The wolves were feeding on everyone's lights and power.

I went into the living room where my wife was in her hospital bed and turned on the battery-powered lanterns I had set up in the living room and one on the dinning room table. I turned on the batter-powered, hand-cranked radio to listen to what was going on in our now darken, scary, windy bloodied world.  This was the big one. Our cats, Sam and Dave took cover under the bed. They don't like tempests. I don't blame them.

I had supplies to last 48 to 72 hours. I had water, Ensure, fruit, peanut butter, milk, bread, turkey slices, cheese and juice. Food for Sam and Dave. I had a survival kit with a first aid kit, water, food, Mylar blankets (keeps in 90% of your body heat), the kit even had a whistle. I had a small, but very strong flashlight in my pocket. I had all these things since last year preparing for the storm that wasn't as bad.  I had put water in sandwich bags and put them in the freezer. When the power went out, I put them in the fridge so that it would stay cold for awhile. Living through the blackout of 2003, I thought we'd be with out power for no more than 12 to 24 hours. I was wrong. Very wrong.  We all were.

The Home Care aid did not come Monday. The home care agency called to let me know. That was the last time I had heard from the Home care agency. So, we were on our own.

That night I put on some music as I always do for my wife and got ready to give her a sponge bath after she had some dinner. The hospital bed and the air pressure mattress were not working without power. The hospital did have two, manual cranks to adjust the hospital bed so I was going to have to use them.  Even with the two lanterns, it was still dark, so I used a flashlight under the bed so I could fit the cranks into the grooves to adjust the bed. I was doing all of this, and trying to stay calm, and keep my wife calm as winds approaching 60 to maybe 80 mph, were engulfing our home. I heard things being tossed around the house. I thought for sure many branches were coming down off the trees and god knows what else. I stayed next to my wife the whole night, with a very large comforter at the head of the bed to throw over her if any windows broke and glass shards became airborne. My wife did not know exactly what was going on, but she did know something was going on and she seemed very agitated, talking in monosyllabic, and unintelligible phrases.  I knew exactly what she was saying and feeling. Nothing was helping her stay calm, so I started to sing to her. I sang "You Are My Sunshine" and she got very very quiet, almost completely calm. I sang it to her all night. It was the only thing that was helping her stay calm. Routine had taken a powder and this was the new routine. You have to adapt to survive. I counted the number and length of each of the scary bloody wind gusts. 15 to 20 gusts an hour, lasting 15 to 25 seconds.  Although concerned, I wasn't scared. My wife was. This went on until the wee hours. At about 5 am, the gusts had died down and my wife was sleeping on and off. I got no sleep and would not get much more over the next 3 days. I took a look out of the window just after dawn and what I saw was a mess, but not to the degree of mess I was hearing about on the radio in other parts of NYC.

Surprisingly, our aid came Tuesday morning to help me. It was a miracle that she showed up. God bless her for caring and making the effort. She stayed until 1pm and had to get back home to her family. I could not get anyone on the phone. Cellular phone service was sporadic at best.  I was able to text my wife's family and they were able to drop off some food and supplies since their power had come back on for them. I was in contact with my step-daughter who was sending friends over to give us any assistance we needed. A few of my friends came over to drop off  some supplies and support as well.

I was calling ConED every few hours to see if they could give me any sort of update. They couldn't. I told them of the situation.

I said "If you were in a rescue helicopter in the North Atlantic and you found a lifeboat with 12 people who had life preservers on and baby was in the water with no life preserver, who would you try to save first? The guy on the phone understood what I was saying, but that ConED was not prepared to take on anything like this.

So now, Tuesday became Wednesday and still no update from ConED as to when power was going to be restored.  We were quite literally on our own. When you are a caregiver for someone like my wife, the type of help needed is more than most people are aware of. It's not their fault, they won't know until they do it themselves.  I started to think about rationing the food and water we had, since I wasn't sure how long this crisis was going to last. This was war and I didn't have basic training so I could only rely on what was left of my tattered wits.

Since the house was getting too cold for my wife to stay in the house any longer, on Thursday morning I called 911 to get her out. ConEd still could not give me an estimate as to when power was being restored. And from what I was hearing on the radio, things were bad, very bad. Worse than anyone had thought or prepared for.

We ended up at the ER at Richmond University Medical Center on Bard Ave. It was warm. Thankfully again, our aid came Thursday morning to help us out. The social worker who was working in the ER, got us a room at a facility later that day as beds were scarce.

I had left my porch light on when we left for the ER. I had asked my brother-in-law Bill to drive by the house when he could, to see if the light was on. I got a call later that day that he had driven to our house and saw that the light was on. That meant that we had power. Taking my wife out of the house I knew would be difficult, but I knew I had no other good alternatives. Anyone who cares for someone with Alzheimer's knows that any break in the routine, any hospital stays, or long hours waiting in an ER, has a negative effect on them. Most people in the Health Care System, do not know that. They should. Nor do they have any expertise in caring for a person with Alzheimer's Disease. We caregivers do know that, and no matter how many times we try to explain that, we get the puzzled look on the faces of health care professionals. 

So, after I spoke with my brother-in law, I went home and the power was in fact on. I called the facility and spoke to the supervisor and she coordinated getting an ambullette to take my wife back home. I asked my family to call a plumber to check the stove and gas line. I wasn't taking any chances. I may have been overreacting, but given the circumstances I didn't care, and wanted to make sure we weren't going to have another scary problem to deal with when we got home.

What I saw while driving  between the facility and our home was alarming. Cars waiting to get gas in long lines, traffic snarled, tempers on edge, a gloomy sky, and the threat of power lines and trees falling around me got my attention, so even driving was perilous.  But I couldn't dwell on that, I had a job to do and that was to make sure my wife got back to her routine as soon as was humanly possible. No easy feat.

We got home to a warm and lit house. The one guy in the ambulette said, "Don't beat yourself up, you did the right thing getting her out today, even though the power came back on several hours after you left. You could not have known that. None of us could."  I have to say that all crews who helped us that day, were nothing short of phenomenal.

I knew that it wasn't just the storm we were going to have to deal with, but the aftermath.  It seems we are all pretty good during a short term crisis, but in a long term crisis, not so much. I had to prepare for the aftermath.  We all do.

When everyone is in a foxhole, trying to stay alive, you have no alternative but to fend for yourself if you can, because they probably can't come to your aid.  But how do you prepare for something like a Perfect Storm when you are caring for someone who cannot run and fend for themselves?

One plan I would like to see put in place as soon as possible, here on Staten Island and in all of New York City, is a plan to evacuate anyone who is home-bound and whose mobility is non-existent. So that, during a storm of such a powerful and destructive force as Hurricane Sandy, doesn't destroy our collective ability to care for the most vulnerable of our citizens.  I'm not crying wolf.

 










 

The Memory of A Day I Wish I Could Forget

The Memory of A Day I Wish I Could Forget.

by Guy Michetti on Sunday, September 11, 2011 at 6:55pm ·

I moved to New York City in August of 1993. The first attack on the World Trade Center was in February of 1993. I wasn't sure I should move to New York, but I did.
After about a year and a half, I started working in Manhattan. Whenever I would take the express bus into work, I would pass by the World Trade Center. I would look up and say, "they're still there". In the back of mind, I had a suspicion that they would be targeted again.
September 11th, 2001.

Most people who lived through that day here in New York City will never forget the events of that day. I wish I could. Val and I had just gotten back from vacation the week before. We were on a cruise to Nova Scotia. It was a great vacation.
I don't remember anything about Monday September 10th 2001. I can't forget Tuesday, September 11th 2001. I really wish I could.

Val went to work earlier than me that day. Always trying to get some overtime at the law firm she worked in midtown. I went to work an hour later. We took the same bus most days. Not this day. It was the same bus route. Neither one of us got to work that day.
I was on the bus going over the Varrazano-Narrows bridge re-reading Huckleberry Finn. I actually had two books with me that day. Can't remember the title of the other book, but I picked it when we were on vacation. It was about a young girl and her experience living in Italy during World War II. My mom lived in Italy during the war and I wondered what it was like for her, and my Dad, to live in a country that was a War Zone. Ironic when I thought about later. Maybe my mom was trying to get me ready.

I always got a window seat on the bus if could. I did that day. As I was reading and going over the bridge, as I always would do, I would look out and see the New York City skyline. On a bright day, the skyline was beautiful. Not this day.

What I saw when I looked out the window did not seem real. A very LARGE black plume of smoke was coming out of the top of the World Trade Center. This was the North Tower. It was about 8:55 give or take a few minutes. I almost looked away thinking it was a major electrical fire. Never thought it was an explosion, never thought a plane had hit the tower, never thought it could be terrorism. Of course, those thoughts occurred in about a split second or two. I could not STOP looking at what I was seeing and trying to understand all. It wasn't until the bus was off the bridge that someone said they heard on the radio, that another plane hit the south tower. Now I knew. It was an attack. The bus was diverted. We were in Brooklyn. Another report, a plane had hit the Pentagon in D.C, and another plane was "on its way". On its way where? We were going back to Staten Island. I got off the bus to tried to get the subway to get to work. The subway was not running. I could not get through to Val on my cell phone. I got a page from Val on my beeper that the World Trade Center was on fire and that she was going home. Where was she? At the office, still downtown? I didn't know.

I went into a diner to try and use the phone. Didn't work. I looked around at the people in the diner. They didn't know what was going on in the past few minutes. I was about to tell them to turn on the TV when I thought, "I gotta find Val!!"

I caught another express bus. They still were not going to go into Manhattan. I thought they would try to go over the Brooklyn or Manhattan bridges. They were going back home. Damn! How am I going to get to Val in the city??

When we got to Staten Island, I caught a local bus hoping to get down to the Staten Island Ferry terminal. Val always said, "The ferry runs all the time. No matter what." It was going to be my only chance to get to her. I had to get to her.

After about 15 minutes, the bus stopped at a red light. It was right across the street from a fire house. A fireman got on the bus and said, "By the order of the Fire Marshall of New York City, we are taking command of the bus. Please get off the bus and wait for the next one". As I got off the bus I put my arm on the Fireman's shoulder and told him, "Be careful. God bless you!"

Now I was on my feet. Walking. Where was I going to go? It would have taken me an hour or two to get to the Ferry Terminal on foot. I walked up a hilly street to one of the main streets here, Victory Blvd. and thought I would catch the bus there. I was a bit out of breath. I thought, "this is not what it feels like to be in a war zone, New York City NOW IS a war zone!"

No buses were going to the Ferry Terminal. Damn! Ok, get back to the house, get in the car, and go down to the Ferry. That's what I did.

I was still trying to get Val on the cell phone. Nothing. I didn't have a minute to think that there might be more planes coming in, all I knew was that I had to find Val.

I took Bay St. to get to the ferry terminal. From Bay st. You can see the Manhattan sky line. Not today. At that point, both Towers had fallen. All I could see was smoke. It engulfed all of the downtown area. It was as if the towers had fallen and destroyed all of downtown Manhattan. I thought to myself, that's where Val is. Damn! Gotta find her!

My plan was to get on the Ferry and try to find her. The ferry was running. The local news on the radio said it was. But, it was ONLY letting fireman get on the ferry. Damn!
Ok, well firemen are great guys. My next door neighbor was a fireman. They won't try to stop me. They will let me find my wife.

Parked in the ferry parking lot. Ran to the ferry. I see the firemen getting on. Ok, I'm in for a fight, but this is war. I gotta find Val.

As I was getting to the ferry, I tried my phone again. All I got was voicemail. It was Val. There were two voice mails. The first one she sounded like she was in a panic. She saw the second plane hit the south tower. She was coming out of the Brooklyn Battery Tunnel downtown. She was in the area now engulfed by all that smoke. The voicemail cut off. Not sure why. The phones were not working that well on that day. For a split second I thought I had lost Val. DAMN!!

The second voice mail "Guy, I'm on the 62 bus. I'm 10 minutes from the house. Where are you?"
At that point, the tension in my soul was released. I bent over and let out a wail of some kind... one of the fireman said, "Hey man, you ok??" I said "yeah, I'm ok now. Please be careful. God bless you all!"

I drove home. Still could not get Val on the phone.
I walked in the front door and Val and I embraced for what seemed like hours. She was ok, we were ok. For now.

The rest of the week is a blur, but we could not get to work for the rest of the week.

Val was helping people as they were waiting to board the ferry back to Staten Island. She saw a friend of hers who had gotten hit with all the debris from the towers. He was in a panic. Val did the best she could to calm him down and clean him up. Val's cell phone was working that day. She gave to to anyone who needed to make a call that day. From what I remember Val said she saw the plane hit the south tower. She was waiting for the ferry when the first tower fell, and she was on the ferry going home when she saw the second tower fall.


What Val saw was horrific. I know that it affected her deeply. I hope that memory is erased from Val's mind. But something tells me, that at least the emotional turmoil of that day still lives with her.
I still cannot remember Monday September 10th 2001. I wish I could and forget Tuesday, September 11th. Of course, I never will.

The Semantics of Emotion

It seems that when people who have symptoms of dementia express very strong emotions, if they are at the stage where language is impaired, those strong emotions do something to make language magically appear.

This is something I've noticed and want to keep a record of. There must be some research in this area,  and I'm starting to look for any case studies.

In the meantime, I will keep track of those times when Val, when feeling very strong emotions, comes out with a full phrase.


Val hates getting washed up. That is one of the times where she feels most, well, violated and stripped of her dignity and independence.
At times I as Val, if you don't want to do this, would you prefer to take a shower.

I asked her that last night, she said, "No, that takes a long time!"



Perfectly clear sentence that expresses exactly what she is feeling at the time when her emotions are fired up and she is either very happy, very sad or just sick and tired of getting washed up and not being able to do it herself.
So when you say the "person" is gone. I have to start questioning that. Because once you say they are gone, then what's the point?
They are already "not there" to many family members and friends. But that's simply because, in my opinion, they are just too selfish to keep the relationship going. What was it Christ said, " If you do unto the least of these."

People with AD should not be considered the least of these, but they are. And you know what, I think they know that, and  that behavior may account for some of the aggression they display.

Val Loves Chocolate, Dad, Being Stubborn, Cooking, Polio and home

Spring 2011

I took some Videos of Val in the spring of 2011 on our back porch. Getting her to talk and remember.

Val 2011 At Home... A snapshot of Life

A few fleeting moments out of our day last year(2011) Val asking if there was something(unclear) she could do for me!

The Two-Edged Sword of Lucidity

There are fewer moments when my wife Val is lucid. But they are still there.. everyday.

Yesterday she looked at me and said, "Are you OK?" She knew, she knows what she is going through, and knows it must be hard for me at times. She always cared for other people, no matter what was going on in her life.

That was/is the kind of person Val is, so I know what she meant by that meager sentence and the look on her face.

Later that day Val's aid said to me, "Val tried to sit up, and stand while she was sitting in the chair. Realized she could not stand on her own, and started to cry."

That is the other edge of the two-edged sword of lucidity. Although I've never been stabbed, that is what it must feel like to be cut right through your heart.

The Aphasia and the Crying

How do you comfort someone when they are crying and you cannot understand what they are saying? Of all the difficulties and challenges of caring for someone with Alzheimer's Disease, this is the most heartbreaking of all.



The difficulty speaking is already apparent as far back as January 2011. It was already starting before that back in 2010, but we were in and out of the hospital so many times I had no time to focus on recording what was happening.

The past several months Valerie has been crying more than I can remember. She was always a very sensitive person. She would cry when she was happy, she would cry at the movies when there were touching scenes. She'd cry every time she would watch those commercials for homeless pets. She would always cry at the end of the Betty Davis movie "Dark Victory". (You'd have to watch to whole movie to understand.) It was one of her favorite movies of all time. The story of a woman who found out she was going to die, so she sent her husband away, not telling him. She did not want to put him through the turmoil.

Val has known what is happening to her. Before anyone did. She did her best to "cover". I remember when we were at an appointment with a neurologist where she said under her breath, "The jig is up!" Later after that same appointment in Manhattan, we were leaving and on the street she just broke down. She kept saying over and over again, "I'm Dead, I'm Dead, I'm Dead!" One of the difficult moments in my life. How do you reassure someone when they are told the have this disease. She knew there was no hope. She had wanted to be a nurse when she was young, but couldn't because she simply was too sensitive. She would cry.

Over the past 4 years Val has had moments when she was very aware of what was happening to her. I couldn't even bring it up anymore because she would act as if it were the first time she heard it. That is torture.

So now when she cries, and it comes out of nowhere, at anytime of day or night. I know she is aware, even now. She is concerned about her daughter. And I know there are times when she cries for me. Even now, she is worried about others more than for herself. There is an audio recording I have from Jan. 2011 that is over an hour long where she is so upset about us. It is difficult to understand listening to it, but I remember that night, and I know what she was saying. She was sad that we didn't have more time to be together, they way we always were. We talked about growing old and opening up a bookstore, reading to each other in front of fireplace somewhere in New England. Val loved Boston, loved Vermont (our default vacation spot). The simple life. The quiet life. A life spent in conversation.

That's not to be. At least not the way we thought.

So when she cries now, I have a hard time trying to comfort her. It's nearly impossible. So what do I do? I hold her, I tell her I'll always be with her and that I am only happy when I am with her. It doesn't help much. She just continues to cry and when she tries to speak, I can't understand. It is torture for me. What can I do? What can anyone do. I just listen, and I cry with her, without showing any tears. That's hard to do. But I have to share this with her. We always shared things together. We were literally two peas in that proverbial pod of life.

We have known each other almost 19 years. Where has the time gone? It feels like I met her last week. That's how vibrant I feel our life has been. Never a dull moment, with Val always filling our days with the joys of living. The simple joys of every day life. She was a master at it. She made a house a home and she made a marriage heaven on earth. Despite my being a difficult man. That's a testament to Val's strong character.

The crying now, will one day be silenced as well. These will be the good times, as when she may one day no longer even have the ability to utter a sound or shed a tear. When that day comes, I will be the one who will cry. And the echo from the void will be of little comfort. But again, I will be there, we will be together. I will hold her close and the distance between us then, will be vast. At that point, Val's voice will only be heard in my heart.

Stream of Consciousness

I'm starting to post some of my thoughts on what has been going on since (and before as it relates) Val's diagnosis of Alzheimer's Disease.

They are not in any formal order, or edited very much after I first wrote them down. Just thoughts about what life has been like since Valerie was diagnosed with Alzheimer's Disease, at an age where most people don't think you can. 

I hope it may help some who are facing this at such an early age.

First signs and the clarity of hindsight.

My wife Val never had a good sense of direction. I remember her calling me after dropping off her daughter during her first year of college at Carnegie Mellon in Pittsburgh. Val called to say she was lost. When I asked her where she was, she wasn't sure, but it seemed that she was coming back to New York City via Boston from Pittsburgh. I told to get off at the next rest stop and ask someone for directions. I kept in contact with her the whole time until she was on the New Jersey turnpike, heading in the right direction to arrive in New York City. I told her to call me if she needed some help, and to make sure she called me when she got home. This was in 1994.

So her getting lost, even back then, was probably a sign of things to come.

She went on disability back in 2002. The diagnosis was Post-Polio Syndrome. Memory problems were becoming more apparent and forgetting noun.  And there was also a marked lack of initiative and her ability to reason seemed to becoming impaired. When forgetting the word, I would say Val, “You left out the antecedent, what the hec?”

Now I wish I knew then, what I know now, but what seemed more prominent in Val was her inability to reason out an issue. Now, as a man, I thought, well don't go there, cause maybe it's me that is having a problem understanding her point of view. I didn't know then, but I know now, that the ability to reason is a dementia symptom. This was the first sign, before the more frequent lapses in memory.

Val was very strong willed and had a fierce independence. When we would get into these “arguments” her response was not only to disagree with me, but to laugh derisively at what I was saying. It was very frustrating and I kept thinking, it must be me. The simplest example was her never wanted to clean up the house before we had company. She was hoarding and the house was really a mess. I would offer to help clean up. “No, don't do that. It's fine. Why are you always complaining about the house. You never do anything.” Well she was right, I wasn't doing anything as far as she could see, because every time I brought up the subject she would get VERY upset with me and tell me I'm crazy, the house is fine. Everybody lives like this.

I had the temerity to say “Well I don't think so. Maybe homeless people live in a dumpster, but I don't think our friends and family do.” That, as you can imagine, did not go over well. I would beg her to hire someone. No, I don't need the help. Now, she was doing what she could, but it was very tidy. I would wait until she went to bed, do the cleaning up. But I went to work the next morning, and by the time I got home, it looked like a tornado had hit the living areas. No matter how much I tried, I could not get her to understand this was a problem. In my opinion, she was slowly, but surely losing the ability to reason it out. Nothing I said made sense to her and she would just get enraged. I told her at one point that she needed to see a shrink. I wasn't kind about it, “I said a cluttered house is the sign of a cluttered mind, you need to see a shrink!” How well do you think that went over? Yeah, you're right.

If only I knew then what I know now. I would have been more understanding of her. Maybe... At least I would have known that it wasn't me. We did seek counsel, but it was Marriage counseling. Which of course the outcome is

“It's always the man's fault”. <--- That's a jest... calm down girls!!! :>)

Knowing that someone who has dementia has a diminished ability to reason, should not only cause us pause, but our reaction should be measured based on what we now know. We shouldn't forget that. If only we knew then what we know now....

So it is NOT always memory problems that show up as the obvious first sign, it is behavioral problems that more than memory lapses, that were more prominent as evidence of something wrong. But what? If only I knew then...

Rambling Thoughts To Myself...

Rambling Thoughts To Myself...
(Winter 2012)

Quality of life

Most of my time is spent caring for Val. I'm concerned about her quality of life. As the disease gets worse, it becomes harder for her. Yes I have aids, but I read somewhere, and it's true, life is more than a dry butt and a hot meal. So with all that I have to do, I spend time with Val. Listening to music, reading her the paper, talking and just BEING with her at times is all I can do. I know this disease robs you of the quality of your life, but I keep having to ask myself, what I am doing to make Val's quality of life better.

Busy

I have to do things that take me away from Val. The chores around the house, which never end. The bills gotta be paid. The laundry, the cooking, the cleaning the endless phone calls for this and that and the other thing. Never stops. It has to be done, but it takes time away from me being with Val. I hate it hate it hate it! It's gotta get done. And I gotta fine some time to take care of myself and do things that relax me.

Jobs and Money

If I do get a job, that also will take me away from Val. What about a vow of poverty? Marriage is a holy sacrament. It is even more than that to me. I know people give up their lives to care for their spouse. How do they make ends meet? Val has social security and long term disability income. That is now being put in a pooled income trust and we can use it to pay the bills. The bills HAVE TO BE in Val's name. Just got the package. More friggin' paperwork that I don't understand. If I could get 8 hrs of sleep at night, I could make my way through this. I don't get that much sleep. Working on 4 hours for the past month. I'm starting to feel it. They say take care of yourself. How? The system, medical and society at large, has no effective way, none whatsoever, to support the caregiver. The support and treatment for the patient is meager at best and once in the gulags we call Nursing Homes, you are faced with a living hell. And some caregivers don't have a choice, simply because they cannot do it anymore. It becomes physically, emotionally, financially impossible.  It is hard for Val's family to see her so diminished from the fireball of life she was. But the more I think about it, the more I realize it isn't as hard on me, our family and friends as it is for Val.

Unemployment benefits will run out soon. How soon? I don't know. Ask congress... The economy is not getting any better any time soon based on what I have seen. I hope it does sooner than later. So what does a poor house feel like? More importantly, what does it smell like? The food, if there is much, will probably be really bad.

The Future
Can't think about that now. All we have is today.

My feelings

Ha! Last night I was watching a TV show. At the end there is a piece of music that I love. Very beautiful. It made me wail like a baby. I had to leave the room and go to the bathroom so I wouldn't wake Val. I felt better aft wards. It's been almost 10 years since Val went on disability. It's been just about 4 years since the DX of Early Onset Alzheimer's Disease. I went through the death of my mom over 20 years ago. She was in the hospital for a month before she passed. I remember the tears and the pain. Now, I feel that level of loss and despair at least once a month now. It isn't anticipatory grief. It is grief and hopelessness of a kind I have never felt before. Yes because Val is slipping away, but for me, it is because of the extraordinary person Val is. She was so full of life and such a powerhouse of a human being that I feel fortunate that I met her. She amazed me in ways I can probably never ever describe. She has always been my hero for how she lived and what she did with her life. Surely God could use more people like that in the world. And yet there she goes... I so want to understand why God does what he does. I know I will never understand. However knowing that I do not understand and will NEVER understand and probably am not meant to understand... drives me out of my mind.

What I Will Do

Always be there for Val until I drop dead. I don't really care about what the future holds for me. I am self reliant enough to know, to know deep in my soul, that I will deal with whatever the future holds for me after I care for Val. I'm not worried. Yes I am apprehensive.

A friend told me I was depressed. He said "How could you not be?" Well maybe a bit, but I know that I am not clinically depressed. I'm not in denial about it. I know life is hard. My Dad taught me that when I was growing up. Yes I am sad, but not for me, for Val. She could have done so much with her life if God would have let her. I wouldn't even come close to what her potential was. I need to feel my pain. It's OK. I have to work through it. I am working through it. If you fall and hurt your back you are going to yell in pain, but you will get up, get through it and move on. It's the laying down that will kill you. I'm not laying down. Ever. I have more paperwork, more cooking, laundry to do. Val needs to see tomorrow's paper. I need to read it to her. I will. God it's going to snow on Saturday. Merde!

Do you want something Val?

Do you want something Val?

Despite the fact that my wife Val now barely says anything intelligible most of the time, when I talk to her, I always try to understand how she is feeling and if there is anything she wants or needs. Doesn't always work as her speech now is well, it's a gibberish, almost Jabberwocky. But she does understand me most of the time, and there are moments where she does come out with a phrase that is understandable.

I ask myself, how much does Val have in the way of congnitive ability. What does she know? Is she really still in there or has this disease removed all traces of who she was.  Cogito ergo sum , "I think, therefore I am".  Does Descartes'  famous phrase still hold for Val??

I also try to determine how what she is feeling by observing her body language, I especially look at her eyes. But there are times...

It was this past Monday afternoon when I asked, "Val do you want something?" She said "yes". I asked "What you is it you want Val?"

She said with absolute clarity, "I want me!"

Somewhere in New England

I took this shot of Valerie when we were on Vacation somewhere in New England.

Smile Val!

Trying to get Valerie to smile on a Saturday...





Eventually she did...