I had the opportunity of attending the Families and Health Care Project of the United Hospital Fund that sponsored a conference called "Family Caregiving in a Changing World", here in New York City. I must admit that I thought it would consist of local attendees but it drew quite a diverse audience from across the nation and Canada.
Carol, Levine who is the Director of The Health Care Project spoke about how far we have come in the caregiving arena and of the journey we still face. The program featured a diverse panel of family caregivers who described their caring experiences for their chronically ill child or parent. Other topics were Family Caregivers on the job, ADL's and IADL's; a wonderful theatrical presentation, "Caring For Me, Caring For You" that was not only powerful but informative, leaving a huge impact on those who may not have understood the needs of a caregiver, and issues surrounding the discharge from services. There was a wonderful presentation of how caregiving is growing in the media, with a heartwarming presentation by Rafael Pi Roman, who is the host of New York Voices on our PBS station. In speaking with Mr. Roman after his presentation, I commented on his openness in sharing his own vulnerability. He smiled and said, "I don't normally let the vulnerable side out in public."
During a paneled discussion on the future trends in caregiving; what we could do to pass more legislation on long term care policies, paying family caregivers and caregiver support, I found myself building such anger inside as I listened to the concepts that the Federal Government wanted the State Government to take over the burden and vice versa. Passing the buck just didn't appeal to me in anyway shape or form. I had to let my voice be heard. I went to stand online in the back of others waiting to speak at the microphones. The Moderator stated that there was very little time left and to make our questions or statements as brief as possible. One gentleman rambled on and I remember thinking, get him off. There were three more people in front of me and the moderator said this would be the last one. The woman, who already had spoken on several occasions, felt my urgency and allowed me to speak. I got nervous, thinking everyone would boo me off.
All I remember is getting up and not introducing myself as a founder of an organization but as a caregiver, sharing the horrific experiences I have gone through this past month as a knowledgeable advocate for my mother, navigating the system. I explained how I felt: Firstly the hardship of my mother being dismissed from the hospital with a low salt level which caused her confusion as she entered the nursing rehab facility who knew absolutely nothing about her needs and that supposedly her pneumonia was cleared, but the doctor assigned to her in the nursing rehab gave her more antibiotics because she had pneumonia according to an x-ray she viewed, (an x-ray from a date that my mother hadn't been in the facility and none had been taking from the time she entered until the time she was prescribed the antibiotic.)
At a daily fee Medicare was paying almost $400/day plus all the additional expenses she was incurring, her primary reason for entering the rehab was for pulmonary rehab. Rehab? In my presence upon her admittance, she was brought six nebulizers that were broken; three condensers for oxygen, which didn't work properly, and finally a dilapidated, filthy oxygen tank. Mind you, my mother was receiving oxygen 24/7 in the hospital. She was without constant oxygen for almost four days before they brought her a continuous flow of oxygen. I remember telling them that whether it be myself or a paid aid living in 24/7 at $500 a week plus under $500 a month for oxygen 24/7 at home and perhaps a couple of grand for rehab on the outside could save the government close to $7-10,000 per month. We along with millions of other caregivers were already saving the government billions of dollars, and they recklessly use monies to provide services of this nature.
My other point was that her nebulizer machine, which was at home, had not been used in almost a month since she first entered the hospital; the monthly rental fee Medicare was billed at was $75.00. My mother has had a nebulizer for over 4 years. You can go out and buy a nebulizer for $125.00. The rental fees were assessed at close to $4,000 for the 4 years. Who's fooling whom, I asked...I was unnerved… I could have gone on and on at the wasted monies I observed and not a penny was going to the caregiver who was keeping their loved ones out of these facilities. What would the government do if all of the millions of caregivers decided to put their loved ones into a facility today, all at one time? What would the government do then?
To my amazement, an overwhelming applause filled the auditorium. As I walked back to my seat, crying from the emotional release at having been heard, I thought to myself, this is so painful for so many of us, to have to use all our energies to advocate for loved ones, fighting with so little energies left inside us, but you know, it is the only way. We must all let our voices be heard. It' s easy to say I am not going to bother because it won't matter anyway. All you have to do is write one detailed letter and send it everywhere, to your congressman, mayors, president, governor, television networks. The more of us that express our needs, the more we will be heard and the more we can be assured that not only will our loved ones be cared for properly, but that as we age in place, should we need care, hopefully ours will be as well.
As we walked out for the break, men and woman from all walks in life of caregiving, came up to me, introduced themselves and thanked me from sharing for they too, were fearful of expressing their own needs as caregivers of a loved one in their work positions. They were the professionals in caregiving who were powerful enough to help change the way caregivers needs are met. Hopefully, they will now have the courage to come out of the closet and express their needs as well.
After the conference, I went up to advocate for my mother to get her into the proper rehabilitation facility. They had denied her admittance twice because of the way the nursing home worded the PRI. Without going into more of the details at 6PM a social worker covering for my mother's social worker who was on vacation until next week came in to tell us my mother had been accepted and would be transferred on Monday. My mother and I looked at one another, eyes wide open: our prayers had been answered. It was worth all the “you know what,” we went through. We giggled and laughed like little school girls with so much gratitude.... we both encourage you all to not give up...