For Valerie

Saturday, August 25, 2012

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!

Wednesday, August 22, 2012

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!"