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!
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