This weekend I was unable to frequent some of the regular places or do some of the things I had planned. I did receive an e-mail and some calls asking me if I was not out because of this reason or that person. I say this in writing...."They were all misguided and incorrect". I had some family, church and work business to take care of...the main of which was family.
Some of you might know or know of my older sister, Irma. She was diagnosed with "Degenerative Brain Disorder" when we were younger. This caused a progressive loss of her hearing, sight, and muscular control (to the point of spasticity/rigidity and difficulty swallowing). She became wheelchair bound with limited mobility by the time of High School. She was always an avid reader, keeping up to date on all the current news, scandals and Danielle Steel novels. She was a big fan of Donny Osmond and Dirk Benedict. She has read every single Hardy Boy mystery in print. She was intelligent with a bookish memory and had a good sense of humor. Her frustrations would lead to bouts of anger and tantrums. She was particular and detail oriented to the point of being obsessive compulsive. She knew what she wanted and was not satisfied until it was done to her liking. She loved rings and bracelets, especially if they were silver, diamond or blue sapphire.
I apologize if I am misguiding you into thinking that she is no longer present. She is still here, but not the way she used to be. On an evening in April of 2004, upon my return from a trip to Puerto Rico, Irma was listless and unable to communicate. An emergency room visit to Jackson Memorial Hospital and a month's stay in the hospital later, she returned home in a Permanent Vegetative State (A Schiavo State). She receives nutrition, fluids and medications through a feeding tube attatched through her abdomen. The family decision is to keep her at home as long as she is comfortable and we are able to care for her properly. If her condition worsens or we are unable to keep up the quality of care, then we will make another family decision at that time.
This week, Irma is having some respiratory distress and on an antibiotic treatment which has the side effect of (putting it nicely) many messy diapers. My mother is a registered nurse and I have the practical skills to handle some of the medical issues and daily care of my sis. We have some paid assistance, but that is on a limited basis. None of the regular home help persons were able to come in this weekend.
Part of the reason I am writing about this is that an acquaintance decided to spew his opinion and personal beliefs about "Right to Life", "Quality of Life", and what my responsibilities really should be. (He thinks I do not need to be involved in the care of family at all.) This was very difficult to listen to, being a Miami born Puertorrican in a close knit family that has always cared for one another. My anger is in someone giving their unsolicited views without offering any assistance or solutions. An educated opinion or view is always appreciated, but personal rantings are not.
There are many people, besides myself, that have to deal with illnesses, disabilities, or other issues with people they care about. Any support is always appreciated, both to the person in distress and the care taker or giver. It does take a toll on a person. What is not appropriate and not appreciated are comments and rantings that do nothing to help the situation. It only makes those involved more stressed than they already are. One needs to honor the decisions made at these times. They are difficult to make and no one is ever 100% sure they are making the right one. I am lucky that there are people in my life that offer prayers and support.
To family, friends, acquaintances and others that are dealing with any type of care giving or support: May your compassion never fail. Thank you for giving your loved one relief from pain and the hope of health renewed or peace. May you have the strength to continue and be able to take time to nurture your body and soul.
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