Family Caregiver ... Support?

At 10:30 a.m. Alaska time, Friday, the 28th of April, I received a phone call that woke me. It was a woman calling to ask me if I wanted to thank Representative Mark Neuman for his opposition of a bill that would have placed the possession of 4oz of marijuana, even in the home, in the same class as methamphetamine possession and the possession of child pornography. It took me a good ten minutes of her patiently going over just what it was that she had just said before it sank into my sleep fogged brain what she was selling and then to figure out that she was not selling anything. I still suspected my thanks was expected to come in the form of a monetary donation and was trying to think how to politely inform her I had no money to give even if I wanted to. She explained that it was just a call to give people a chance to talk to someone in the representative’s office about this and thank him for it. No money involved. Her patience was greatly appreciated since I had spent till after 5 a.m. awake and was hardly in a comprehending frame of mind. She just wanted to connect my phone to the representative’s office since few people understood they can call up and talk to them folks.

I finally decided ‘What the hell. I’m asleep, but why not talk to the folks?’, “Yeah, put me through.”

A receptionist in Neuman’s office answered and I groggily explained the situation to her, that someone had called me asking if I wanted to thank him for voting not to prosecute marijuana possession like possession of methamphetamines and I noted that as many years as it had been legal in Alaska it certainly should no be treated like child pornography. She asked my name, I told her, then she asked if I was in area 15. I hesitated and tried to think if I was or not and told her the city my voter registration card is listed for.

Then I suddenly realized, one of those “HOLY SHIT!” eye openers, that I had a representative’s office on the phone. And even though that did little to wake me up more, it did click on one point in my head and I said, “Hey, maybe you can help me with something… I’m not sure you’re the person to ask, but hopefully you can tell me who I should talk to about getting help for family caregivers in Alaska?” My fogged brain said that was so not clear and she confirmed it by saying, “You mean representative help?” I’m not sure what a representative could or could not do, so I tried to explain again. “Uhhh… no, I just-… I’m a full time caregiver for my dad, and right now I can’t even get fifty cents, but if a stranger came in to care for him they’d get a thousand, two thousand a month.” Still not my best explanation, but she had apparently heard enough because she said, “Can I get your phone number and I’ll have someone call you back on that?” Now THAT woke me up. I readily said yes while simultaneously thinking - ‘Oh JOY! After six years of asking people this question SOMEONE is saying more than go away and… what was that click?’

The click was followed by this spirits crushing silence as I stood there - ready to give my phone number - and thought, ‘Oh God no, please don’t have just hung up on me!’ She had. I can only assume that it had been an accident on her part, but as I stood there, silently begging her to say something to me through the silence, I thought ‘Maybe it’s recording? Yeah! That’s it! It’s recording! Say phone number!’ I opened my mouth to the sound anyone that has ever held a hung up phone for long knows. That low laugh-like beep beep beep that seemed to taunt you with “And you thought someone was listening. HA!… ha… ha… ha…” Stunned disbelief hit then I think, and it is then that I decided: ‘It’s a mistake!’ She had not meant to hang up on me, she had hit the wrong button and any second my phone would ring and she would apologize. I mean, they log incoming numbers, right? (Okay, so it had not yet hit that I had been redirected from someone else’s line and she may not have got my number because of that.) My hopes held through the thought that there was only one phone number in the area with my last name associated with it. She will call back! ~please~

You guessed it. No call back. My chance had come along to get someone to listen to me and the phone had laughed its “And you thought someone was listening, HA… Ha… ha… ha...” at me. I stared at my dad’s old Springer Spaniel, who was stumbling around the front yard beside me, and told him what had just happened. Getting no better response from the deaf dog than I had the representative’s secretary, I gathered him into my arms and carried him up the stairs and into the house. Now I sit in my dad’s old recliner writing this out longhand in a small notepad and, admittedly, crying in frustration at how close I was to getting someone to listen to me and yet all I got was ‘beepbeepbeephahahahahaha…’ from the phone.

There is a moment in life when a person figures out how much of a difference they can make. I think I hit that point. I know nothing about what my representative or congressman or anyone else might be able to do for me, but I do know that I want to have my voice heard. I want to stop being a quiet whisper in the dark. I want to stand up and say “I’m mad as hell, and I’m not going to take it anymore!” I want to get the word out to others that there is a severe injustice in the system when a single Caucasian woman with ten year old glasses held together by two staples and bad teeth is told that she can not get help to pay for a doctor to see if the pain in her chest is something to worry about, and yet the same person that says “Sorry, can’t help you” follows that up with; “We only provide assistance to minorities, such as Hispanics, and women who are pregnant. Now, I’m not saying to go out and get pregnant, but, if you did, then I can give you Medicaid and you can get your teeth fixed and get new glasses and see a doctor about your chest pain. We could even give you money then in addition to food stamps and help you with rental costs to get a house.” WTF?!!??!!? Just what is wrong with this system where the only way a Caucasian woman can get the same benefits as a Hispanic woman, is if the Caucasian woman is pregnant?

I say that it is time to call congressmen, representatives, nightly news, national news, newspapers, radio stations, anyone that will listen and say “I’m mad as hell, and I’m not gonna take it anymore!” Tell them that it is time to make some kind of assistance available to the people that care for family members. The people that set their own lives on hold to make life a little better for someone that can not do simple every day activities necessary to living a normal healthy life. People that get nothing and lose so much to help someone they love feel like they are alive rather than like they are waiting to die. I can’t afford new glasses, I can’t afford to get my teeth cared for by a dentist, I can’t even afford to see a doctor for a checkup to see how my own heart is doing. It is not fair that my parents and I have to make the choice between them having the care of someone that loves them and will truly take care of them, and someone that only comes by occasionally to complain about the things they have to do. Why can a stranger that would be verbally, mentally and even physically abusive be paid in the area of a hundred dollars an hour to come into the home and care for my parents for a few hours a day, and yet there is no program to help offset my own medial or daily living expenses when I provide that care? I can not even have Social Security benefits when I am older because I can not claim the work that I have put into caring for my father toward the points needed to collect Social Security.

I’m mad as hell, and I am tired of people saying “I’m sorry I can’t help you…” “I’m sorry, if you were a pregnant minority we could help you…” “I’m sorry but we only pay people to care for someone getting Medicaid…” I’m tired of hearing ‘I’m sorry…” I want to hear at least one person say “Let me see if I can help you.” It hurts that after six years of steady hoping to hear that, the person that came close to saying it hung up on me. Where do I go from here? I don’t know. But I’m mad as hell, and I’m not going to take it anymore, so I guess my first step is to write this out and post it and just get the word out there that there is something wrong with the system. Something out of balance that needs to be fixed and made right. I don’t know how to make it right. Maybe someone else does. Maybe someone else will get mad as hell and decide that it is not right that the people like me should have to take it.

I’m sorry for the long ramble, thank you if you have read this far.