On Friday the 13th of March 2015 my mother walked for the first time since June 27th of 2014. Though she didn’t walk far or long I will bet that she walked a few thousand miles, in her mind, even though she only claims verbally to “have tried”. From the time my mother stopped walking to the time she started again she spent nearly 31/2 months in rehab or ICU (all to very little if any benefit), had a feeding tube inserted, had the feeding through the tube stopped (though the tube itself remains) to eating like crazy, spent 5 months bed bound at home, has been accepted into hospice, and is now on the verge of losing that benefit due to the drastic drastic improvements she has been making.
My father is my mother’s main caregiver and during this same time period my father has had a car accident and went from being a driver to a non-driver, had several medication reactions (actual reactions and not mix ups or overdoses) which caused falls, delusions, a black eye, bruised chest and other issues lasting several weeks to a month or longer before finally clearing up and out of his system. His colostomy has started coming out and as of March 11th, two days before my mother walked, he was diagnosed yet again with cancer. All of this, really, has occurred since January.
During this same time frame my brother also had a car accident. My sister went from unemployed to employed to unemployed yet again and my other brother has gone from one design to another on my sister’s house as that was/is where we are planning to move my parents. I have gone from driving about 30 miles a week to and from work to about 250-300 miles per week depending on how many nights a week I stay with my folks because they should really not be left alone. I also went from driving my car, to driving my dad’s because it is the better of the two cars and better for me with the additional driving, to giving that car to my brother after his accident and now driving mine again.
During many of the nights I slept at my folks’ house I have not slept. Instead I have remained awake sitting on the stairs outside my father’s bedroom door listening to his breathing, his tears, and for signs (including bumps, bangs, and falls) that he was reacting poorly to meds. Other nights I have spent awake with my mother listening to funny stories, giving her head rubs, or explaining why she can’t walk. After the car accident I spent several days checking my father every two hours for a fever, cognitive status, etc.
Through all of this I have learned to listen and not speak, to ask how I can help rather than inserting the help I thought was needed and I have prayed for the wisdom to know when to intervene and when to just be vigilant and watchful.
After the car accident it became obvious that we had to move my parents and to do so quickly. My father was trapped in a house that could and would likely hurt him more than it already has because it has stairs. My father needs flat ground if he is going to live and care for my mother and for himself. Our first plan was to add an addition to my sister’s home but licensing, permits, and cost prohibited that. Next we thought about an apartment near my sister and one for me in the same complex that way two of us would be right there. Eventually we realized this would not work as my father would still have duties to the house. Finally we settled on revamping my sister’s house and my getting an apartment right around the block that we would still have two of us right there and and an extra bedroom at my place for when my sister needed respite or other family came by to help.
Now, my father wants to halt all work as he does not feel he will be around to move or take care of my mother. He also doesn’t know if my mother will be around for much longer after he leaves. In terms of diagnosis I do not agree with his assessment. My mother has conditions and not illnesses. Her fragile state has been due to stenosis, her now fragile mind is due to dementia but that is still early yet and she is still mostly clear thinking and aware. Stenosis is not necessarily progressive and though when she first stopped walking she also had a severe muscle loss from severe weight loss. The feeding tube, for 5 months did nothing to improve that. Now that she is off the feeding tube and getting nourishment, real nourishment, the muscles are building again. She has a catheter which results in urinary tract infections so it is always difficult to know if she has dementia or an infection which can also weaken and confuse the mind. The times she is most weak minded are the times she is most likely to have an infection.
My father on the other hand is diabetic, he has only one kidney and it is failing, his knees are bone on bone and quite painful and debilitating and now he has cancer for the third time. Due to the kidney situation he can no longer accept cortisone shots and also likely due to the kidney other pain and anxiety meds are not working well. His mind, on the other hand, is as clear as can be and he does not want to burden his kids and only wants the best for his wife. What all that means practically is yet to be seen.
At times I feel as if I am in an emotional amusement park filled with all the gasps, ohs and ahhs that are found in a regular amusement park only the stakes are much higher and this is real life rather than an escape from it. It is more than a roller coaster in that it has lightness, darkness, optical illusions, things jumping out at you or changing your perspective. It is more than ups and downs with many more surprises and it lasts a whole lot longer than the day you might spend at the park, let alone the minutes you might spend on a roller coaster.
I remember the first time I went to Disney World and went on the Peter Pan ride. Once you are in the car and the car starts moving you have that moment of fear, at least I did, when I noticed that the track disappeared. I thought we were going to die until we started flying, being secured from above rather than from below. Life is like that sometimes. You lose your footing only to be given wings or lifted/carried by something or someone bigger than you instead.
I also remember as a kid being afraid to go over bridges. It took a few years for me to open my eyes to see the reality of what going over (across) a bridge means. I couldn’t understand how/why so many people did so. We used to spend family vacations at the Jersey shore and we would usually cross the Tacony Palmyra Bridge. You could see the bridge span long before you were actually near it or in line to go over it. My young mind thought that cars went over the span rather than under it. I always figured the traffic jams on Saturday morning were due to the dangerousness of going over the bridge rather than the tie up at the toll booths. The fact I couldn’t see cars going over the large metal structure just re-enforced my fear and because no one else in the car was afraid I thought I would be laughed at and simply shut my eyes rather than tell my parents I was afraid. It took years for me to finally open my eyes and see that there was a road way and that the metal was just what distinguished one bridge from another.
I am happy to say that life is still like that for me only now I keep my eyes open all the time. I know that my family is now engaged in the march towards eternity with both parents but I want to see and be surprised at all the unknowns that are still to come. Seeing my parents and my siblings take this march together, like we took our family vacations together, is full of wonder, joy, laughter, surprise, pain, tears. Like no one else knew that I had the fears I had I wonder what fears my parents or siblings have that they are keeping to themselves. While a part of me wants to take them from them I also want them to see and know for themselves that just because the track you are on seems to disappear doesn’t mean that you aren’t secured from above and are then able to fly and that death is really a beginning, not an end.
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