The Family Caregiver Info site is about to undergo a MAJOR overhaul.  Massive, big, big BIG overhaul.  Stay tuned, I’ll show you what I mean as soon as I have it fully figured out.

I’ve been quiet for a while because I have been fighting some nasty toothaches that keep infecting.  I got an infection in my upper jaw last month (May) and went to see the doctor at the walk-in clinic in town.  Cost me a hundred bucks to get my ass chewed out for having bad teeth, lectured about how I need to see a dentist I can’t afford, and written a prescription for penicillin and some pain killers that barely touched the pain that I was feeling.

Once the bad tooth was taken care of I had to spend some time focusing on a bit of an emergency, and as soon as that was done with my family had multiple birthdays and father’s day all hitting one right after the other, then another birthday and still another birthday in about a week.  June is a very busy month for my family.

Right now it’s almost 4 in the morning and I am sitting up with a bad toothache waiting for pain medication to kick in so I can get back to sleep.  Figured I would get out here and get a post on the site since I knew it had been far too long since I made it out here.  I better get some more work done real fast, I’m working on cataloging what  sites I need to update based on daily, weekly, bi-weekly, or bi-monthly schedules.

I just don’t know where to begin on how chaotic things have been.  I’ve been trying to get some websites fixed, and that is about to drive me batty, if they work out right though, then I might change this one to make it more user friendly – we’ll see.  I also had some trouble with an infected tooth that left me heading for the critical care clinic to get amoxacillian and pain medicine.

That is cleared up, but now another tooth in a different part of my mouth is threatening to flare up and I really don’t want another lecture from a clinic doctor about how I should go to a dentist I can’t afford to go see.

Why can’t family caregivers get Medicaid or  something to help them with health problems?

Anyway, I just wanted to let folks know that I am still here, and working my tail off catching up after being too busy to breathe for a while.

I’m not sure that fighting for family caregiver bills that are dying out in congress is actually a cause in the sense that many would consider it to be, but there is definitely a need for those bills to be fought for.

I am under no delusion that, should I win the battle, this is going to be something I will see happening within my time as a caregiver, but I’m not fighting for myself. I never have been. I fight or family caregivers in general.

I fight for those who will tomorrow find themselves in my position and have no idea how to go one day to the next. I fight for those who have no comprehension of how to stand fast against burnout and lift their heads above the chaos that being a family caregiver whirlwinds around them.

When I tried to find help for being a family caregiver I was told that the state and government would pay a stranger to come into my parents home and care for them for 8 hours a day so I could work. I can not be paid because I am related to them. Sure I do everything a nurse does, and so much more. I am equivalent to a cook, housekeeper, nurse, physical therapist, pharmacist… I am also related to my parents, so I can not qualify for any form of assistance.

There is a flaw in the system, and changing that is what I want to fight for with this website. It requires people to speak up, to write their congressmen and say they want family caregivers to be treated with the same respect and given the same assistance that non-family is. It requires people to write letters and create awareness to bills such as the Social Security Caregiver Credit Act of 2007 – which would allow family caregivers to be recognized for deemed wages toward Social Security benefits for up to five years of providing caregiver services. It means not letting bills such as the Family Caregiver Security Act of 2005, which died of neglect while in the Subcommittee on Health, die in congress. The Family Caregiver Security Act of 2005 would have allowed family caregivers to be paid as though they were nurses.

But this is all stuff that is going to take massive grass roots type efforts and while single individuals can contribute to their success, there is not much aside from time that can be donated to them. So, what causes, in the traditional sense, does Family Caregiver Info support? Anything, such as the National Family Caregiver’s Association, that would help family caregivers is nice, but I think worthy causes are:

The American Red Cross – they are there when you need them, have been for my family and for so many others when in need. I’ve donated to them myself.
American Heart Association – heart disease is the number one killer of women and has had a direct impact on my family.
American Diabetes Association – Another one that has had a direct impact on my family
Alzheimer’s Association – Thankfully Alzheimer’s has not touched my immediate family, yet, but I do know many who have loved ones living with Alzheimer’s.
The American Cancer Society – another cause I have had a chance to donate to in the past and one that has affected someone in my family.
Sterge Webber Foundation – I can not find a link to any site for Sterge Webber online, but trust me when I say that it is one of the most worthy of foundations.

A lot of things changed when my father suffered a major stroke on September 12, 2001. I had served as a part-time caregiver for my parents for most of my life, so the transition to full-time caregiver was not as stressful to me as it can be for so many. The nurses at the recovery center in Spokane felt that me and my mother were underestimating the changes that such an event would have on our lives, but both her and I had been preparing ourselves for the responsibilities of being full-time caregivers for a very long time.

The one thing that I suppose I was not ready for was the demands that being a full-time caregiver would place on me in regards to the time I would have to dedicate to being a full-time caregiver.

When someone thinks of working full-time they think working a 9 to 5 job five days a week. Maybe working an 80 hour work week with possible overtime. When a family caregiver thinks of working full-time they think in terms of 24 hours a day, 365 days a year with no sick leave or holidays.

Last night, as with so many nights, I woke several times during the night to assist my dad in getting the blankets back over him. Being paralyzed on the left side, and suffering from an impaired sense of balance, he can not manipulate the bedding. If it slides off the bed when he shifts or has to sit up, then he needs assistance getting it back over him. There is so much more to being a caregiver than just tucking your parent in, but I am a private sort that does not like sharing the actual details of what my life is like.

I began Family Caregiver Info not as a way to share what life is like for me, but as a place where I can help to make life better for all family caregivers. There are bills in congress that could assist family caregivers, and yet with every session of congress more and more of these bills die out in committee. The other day I listened to a congressman on CNN’s Anderson Cooper 360 that claimed they were not neglecting more important things as they discussed steroid use in sports. I would have thought that taking care of the elderly in this country might have been more important than rather or not some athlete is using HGH in the locker room.

My mission with Family Caregiver Info is to help spread awareness about what it means to be a caregiver, to hopefully assist those who do not know what they are getting themselves into, to provide awareness to everyone on just what caregivers go through day to day. I want to reassure those who provide care to a loved one that they are not alone, that they will not be left to take care of their loved ones without the comfort and guiding touch of those who have been there or are there. I hope to offer support and a means of finding help to those who can not, for one reason or another, speak out and ask for that support and help.Being a family caregiver is hard work, it is the highest stress unpaid job in the world. There are rewards that can only be understood by those who provide care to a loved one. Rewards of a gentle smile touching the care recipient’s features. Rewards of hearing an elderly loved one laugh, seeing them smile, knowing that you have touched their life, have made their day a little better and assisted them in finding the quality of living that they so deserve.

When I went searching for some form of assistance that might help me in providing care for my parents I was met with a cold reality. Such assistance does not exist for the majority of family caregivers. I was told, directly to my face by a public assistance worker that they could only help me if I were to go get pregnant. That was her advice. Get pregnant, then they would help me with medical, dental, food, give me money… the list went on and on as to what they could provide me if I was pregnant. My other option? Prove I was an illegal alien in need of assistance. ::nods:: No kidding. She told me flat out that they could give me medical help, get me new glasses, give me food and money and even a house to live in if I was an illegal alien. Makes me wish I was from Mars.

It also makes me sick. My last physical was when I was 16. I’m now nearly 40 and can not afford to have a physical, I can not afford health insurance because I can not work. The state and government will pay a stranger to come in to my parents home and take care of them so I can work, but I can not be paid for the same care provided. I have seen the level of care strangers provide. My mother and I refuse to consider a nursing home as an option because of abuse that we saw in nursing homes.

Family Caregiver Info is my place to stand up and say that I will not go quietly into the night. This website is a place to fight for the bills in congress that could help family caregivers. Bills such as Social Security Caregiver Credit Act of 2007 (H.R. 1161), which is currently in the Subcommittee on Social Security. And the Family Caregiver Security Act of 2005, which died of neglect while in the Subcommittee on Health.

I might not be able to change the course of any of the bills that are introduced into congress, but I can at least do what little I can to fight for the rights of family caregivers to be treated with the respect they deserve. Family caregivers do the same work as any nurse and they deserve to be given the same respect and assistance that non-family is given when performing caregiver duties.