***This is a non-knitting post that will be followed immediately by a knitting post. This is a hard post to write, and I imagine it may be difficult to read. I need your input. Your experience - if you have any.***
Thank you all for your comments and prayers for my DH. He did well during some extensive surgery to clean out his foot wound. Don't get me started. After 10 years of this crapola, I think he should switch doctors. He won't even consider it. To add to the misery, they decided to let a professional PT do water therapy every day and then attach the wound vac, changing it on Monday, Wednesday and Friday.
I refused the wound vac because we have used it three times, and each time it closes the wound too quickly leaving pus pockets that make extensive surgery necessary. This basically undid any healing and generally started him back to a negative situation. The doctor even admitted he had used the wound vac incorrectly, and it was basically his fault for the failure. (Can I have that in a CHECK PLEASE? An even $100,000 should do it..including the return of the body parts my husband is missing.) Incredibly this confession did not phase my husband, and he agreed to use this wound vac again and stay with this doctor! So - they set him up with a "professional" to take over wound vac therapy, since I refused to do so this time. This means I had not seen his wound since his last surgery in at the end of July and into the beginning of August. (I think.) I have not been able to take the medicine that keeps most of the MS fatigue at bay, because I have been trying to pay off his huge medical bills. Without this medication, I either sleep a lot, or am in a sort of fugue state much of the day. Awake, but foggy. Tonight I am rather clear. Look for a HUGE stash sale coming soon. I need the meds.
+++WARNING THIS PART A LITTLE GRAPHIC/GRUESOME+++
I have had wonderful PT's in my life, but this one let the wound go to a deep gray without sounding any alarm! DH accidentally stepped on the hose to the wound vac pulling it loose. I needed to dress his wound with a wet-to-dry bandage until he could see the doctor. I was shocked. After 10 years I did not think I could be shocked by what I saw concerning his wounds. Like the first one where they cut his foot open in a huge Y, and when it was unwrapped I could sit at a chair at the end of the hospital bed and see him through his foot. I have seen fresh open wounds that were nothing but air in the rectangle shape of 3 inches by 5 inches. I have seen the beginnings of gangrene. We have weathered it all, and I learned to do every kind of wound care necessary.
Nothing I had seen over the past 10 years prepared me for this. A huge gaping wound I could have stuck three fingers inside down to my hand, with a bone sticking out. I was livid that a professional had let it get in this condition without sounding an alarm. My DH and I had quite a disagreement about it. I had no choice but to tell him to pack a bag when he went to the doctor the following morning, because he could expect immediate surgery. They did try to do surgery the same day, but could not get it scheduled until the next day. So far, so good.
He has another, unrelated procedure to go through yet this weekend. More prayers are appreciated. The foot thing is causing a huge strain between us, because I cannot stand to see him receiving such inferior care - at a risk not only to his remaining limbs, but to his heart that as a bypass patient is under serious strain with every successive surgery. Not to mention what it does to our finances. He is out of sick days at work, so any time off now is unpaid. This puts everything at risk.
+++END OF THE GRAPHIC/GRUESOME PORTION+++
Meanwhile I am going without necessary medical care, so he can get everything he needs. None of his family, his co-workers or friends know that I have been trapped in one room for more than a year. (I've lost track. 15 MONTHS? 18 MONTHS?) Only the immediate members of our family, my caregivers and a few of Kiddo's friends know. And you guys. He tells everyone I am fine. I have no idea what he tells his family when I do not attend family gatherings. His step-son and family know some, but not all of the scope of my seclusion.
I became disabled in 2001, I'm tired of waiting for house accessibility remodeling that is never going to happen. I'm tired of waiting for a handicap van that will allow me some access to the outside world. (There is house equity among other things that could be liquidated to make these things happen. He refuses.)
In effect I am tired of waiting for my life to restart, while he and everyone else go about theirs as usual (except for his wound problems caused mostly by bad medical decisions he supports - however I would do anything to keep this from happening to him.) He was squirrel hunting last weekend. Fishing the weekend before. Not advisable with his level of susceptibility to infection and complications, but he will not listen to reason.
I hope this is not coming across as self pity, because despite my situation - many have it worse. I love God, I love life, and I love people. I love my knitting, occasionally some interesting television or movies, teachings on CD, and most of all the Internet with it's community of knitters and a world of friends. There is just no reason for me to be IN this situation. Many disabled people go on with life, and do not spend their days trapped in one room. I guess I have had to face some realities - and the reasons behind them - and it's not pleasant. I try to always think the best of people, and friends tell me I am too forgiving and allow people to take advantage of my niceness - including my family. Sigh. When did niceness and forgiveness become a bad thing?
How does a person go from being a take charge, corporate career-type - responsible for millions of dollars, to being a disabled and invisible? A shut-in their family begins to pretend doesn't exist for the most part? I eat my meals alone in my room 95% of the time. They cook them, hand me a plate and leave. Family enters when they need something - money, wound care, someone to listen, Otherwise they spend their time together in other parts of the house. My husband comes in when it is time to go to bed, abruptly, no matter what I am in the middle of doing - it is lights out and silence, NOW. I have asked for 10 minute warnings so I can finish a row of knitting, or whatever - but it falls on deaf ears. I fumble for night medications, and other necessities in the dark.
I know some of my readers are disabled, or have family who are. What is your advice? What steps have you seen them do to correct things like this? If I cannot get some cooperation and correction; I think I will have to make the difficult decision to move out, divorce, whatever can put me in a situation to receive what I will desperately need. It's difficult to swallow the fact that my usefulness the past 10 years has been to serve as his nurse and 24 hour caregiver when needed. I learned to do IV care, wound care as anyone would for a loved one. The problem is it is not a reciprocal situation.
I have a social worker who is appalled at my situation -
yet does nothing. Without my loving caregivers, I might be certifiably
insane by now. I have friends in far away places who want to rescue
me, but they don't understand the full scope of what that means. I
just can't move out into any house or apartment. It must be wheelchair
accessible so I can do more for myself, there must be programs already
in place for me (like my caregivers) as well a many other things - some
tangible, some intangible. It is not impossible by any means, but it
would take a lot of planning, mass communication and cooperation from
some government agencies. It would be a life-altering event that could
cause some family situations to worsen. It could give me unbelievable
freedom, while also putting me one step closer to nursing home care if
our Governor pulls the plug on some programs, or the Federal government
does, etc.
This post may disappear in a few hours or days - I'm unsure. I apologize to those who may see something confusing in my blog. I needed to write the reality - as much for me to see - as you. I don't like that it sounds like a self pitying whine. I have a deep abiding faith that God provides. However if we bury our heads in the sand and pretend we don't need help, he can scarcely provide it. My head is up surveying the situation, but I don't like what I see.
I am overjoyed at my sudden ability to walk a few steps. I hate that this negative post overshadows that miracle. I miss being directly involved in ministry - as I was before we married, and was able to continue for a few years until he managed to interfere and manipulate me until I left the ministry "temporarily" to work out our differences. This was against the advice of everyone in a position of authority over me, because they were afraid I would not return. They were correct. I do have opportunities to minister to people, but not in the fullness to which I have been called.
Your input is welcome. I don't need anyone to be over
solicitous, but I would take a ripping to shreds a little hard right now. I trust you will be kind as always, even if you have to tell me a hard truth.
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