Most of you know this fact. My brother, Darrell who is 45 years old, suffers from an incurable and debilitating mental disorder called Schizophrenia. He has the paranoid version of the illness. That means he will not touch you or be touched because he is afraid of giving you a disease (that he does not have). He struggles with thinking that you can hear his thoughts. He may think that you are not safe and will harm him. He regularly loses weight because he is afraid that the food he is given is rotten, poisoned, smells bad or tastes bad.
He is also kind, smart, funny and will ask you questions about yourself because he loves people. When he is not afraid he wants to get to know you and converse. He will tell some witty jokes and you will probably laugh. You will leave feeling important because he will make you feel that way.
Most recently Darrell has lost 30 lbs on his 6’2” frame. He went from 178 to 148. This caused my father to worry enough to have him moved, again, into another facility that he felt would tend to his needs better. We disagreed over the move. This is a typical issue of caring for the mentally ill. I viewed his last home, a house of 11 men, as a place where he would not get lost and his issues would be quickly tended to. My father, concerned about the loose rules of his last place, saw this bigger place as better regulated and a more structured environment with better accountability. Since my father is still his executor he won that battle. In the end, I think he made a good decision. Again, this is typical. When dealing with an illness that has few answers, no one makes a perfect decision.
Last week I called the director of his new facility, Glen Park at Valley Village, and asked her what they needed. I told her that I took up a collection last year for the residents and caregivers of Darrell’s last home. I also told her that because Glen Park has 80 residents that I would not be able to collect for that many people and asked if there was something that the facility needed that I could get that.
She told me that the caregivers are on minimum wage, and no one remembers or gives to them for the holidays. She is correct. I know this as I have seen this over and over again in my years of negotiating the world of the mentally ill. I thought about giving to NAMI, a non-profit organization that provides education, support and resources for the mentally ill, their families, and their caregivers. I decided that the biggest impact I could make at this point was to give directly to the caregivers at Glen Park. I am sure that each of us can remember a time when someone gave a little something and how touched one felt for being remembered.
Last week when I saw Darrell for our weekly visit I met Armando (in the photo with my brother) . He is a 28 year old male caretaker who still looks like a boy, but has the maturity and compassion of an old soul. I introduced myself to him and told him I was Darrell’s sister. He got excited. He said, “Oh, your brother is really cool. I try and help him because he has some issues with eating”. I told him I was aware. He then told me how he takes Darrell every day to look at the menu so he can pick out what he wants to eat. He tells Darrell to let him know if he wants to order something special so he can tell the kitchen in advance. This small act of kindness has allowed my brother’s paranoia to reduce and he has put back on 4 of the 30 lbs in two weeks. Again there are no easy answers, but acts of kindness always help.
In the world of the forgotten there are people who care. Caretakers of the mentally ill are a special group. They make minimum wage and often times they get grief all day long. I want my brother to receive good care. Sometimes his Schizophrenia makes it hard to care for him. I want the caregivers at his new home to go that little bit extra for him. I want them to go that extra bit for everyone that they care for.
I am taking up a monetary collection to give to the caretakers at Glen Village for the holidays. There are 31 caretakers. I would like to raise $1550.00 to give each caregiver a gift certificate of $50.00 to go buy what ever they like. This is not a tax-deductable donation. It is only an act of kindness for the people who take care of the forgotten and disregarded, the severely mentally ill. This donation will probably do more for a group of 80 residents than any other gift one could give to the residents themselves. It will let the caregivers know that they are doing an important job. It will let them know that people care about people who are doing an impossible job.
I hope you when you are looking at places to give this holiday season you will concider making a donation to this.
With love and compassion,
- Diana Carter
- Jane Pope
- Erica Arrendondo
- Dina DiGenova
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