My goal everyday is to remain calm, brave, and to recognize something positive in my life. This is harder some days than others, as I am sure it is for most people. The last couple of weeks have settled into an uneasy routine. Uneasiness because Mikes health remains a day to day challenge, and the equipment and support staff I have to work with need a lot of work.
I need to give you a little background information. My mom owns a DME (durable medical equipment) company in another state. My sister also owned one, and sold it when it got to the point where she had to turn away long time patients because the amount she was being reimbursed by the insurance company for equipment was less than what she was paying for them from the vendors. If you know anything about business, you have to sell your products for more than what you pay for them in order to make a profit. I was an officer in mommas company, and time after time we had to discontinue services because of Obamacare cuts, medicare audits, insurance shenanigans, and it goes on and on..
So, I get it. I really do.
But wait.. wait.. where does patient care come into this?
Every single piece of equipment that has been brought into this house by the health care professionals has quit working in the 3 weeks we have had it. Why is that? Well I can make an educated guess based on the information I shared with you above. Our insurance rates go up, up, up, and the quality of care keeps going down, down, down.
I mean we had the feeding tube pump for 36 hours when it quit working. I had an engineer, and electrician, and an all around mechanic working on it, and it was dead. Did anyone but us care that my husband hadn’t had any nourishment in 2 weeks while in the hospital with the NG tube? No. It took 2 days to get another working pump. The DME dropped it off, and left. It was up to me to figure out how to use it, with the help of the nurse who was here who had no idea how to use it as it isn’t something she typically works with.
Then this past sunday the pain pump malfunctioned. Not only did it malfunction, it gave no indications anything was wrong. I had to figure it out on my own, when my husband was so weak he couldn’t get out of bed. He was so weak in fact, that he didn’t get out of bed all day. It took 7 hours to get another pump out here. I had to manually give him pain meds every hour to keep him comfortable while we waited for the DME to drop off another pump. Then, after they dropped it off, I had to coordinate a nurse to come back out and reprogram the new pump.
I am not a nurse. I am not a medical professional. if you are thinking, gee what would we do if this happened in our family, you should wonder. If you are waiting on the medical community to give a shit, start going to nursing school now, because you are it. You are the medical professional.
The medical professionals being paid to do this can’t do it. They are over worked, and even if they wanted to actually change your loved ones bandages, they have 5 other people they have to see that day and they don’t have time. If you seem reasonably competent, guess who the new wound care person will be? Yes, that is right. It’s you. Make sure you pay close attention to that course in nursing school.
You are probably thinking well what company did they hire to help? I interviewed and hired the largest company of this kind with a good reputation to handle Mikes case. I like every single nurse, and professional that has come out here. It boils down to dollars and cents. They are short staffed, and literally don’t have time to give the care that our loved ones deserve.
I appreciate your support, but I don’t need your advice. I have spent hours and hours researching, and advocating for my husband. If you think I just must not be doing something I should be doing, I challenge you to actually come walk in these shoes a day.
As a spouse, I should not be coordinating this team. I should be able to hire the best that I can afford, and count on them to do what needs to be done. That is not how it is. Now I am worried about firing this company, and getting another company in here because what if the next company is worse? What if they have even more inferior equipment? What if asking for working equipment, and thinking you should give a shit if my husband gets nourishment is just too much to ask? This is what I am grappling with right now. Life or death decisions.
Angry? Your damn right I am angry. You should be angry too. I am not unique or special. Cancer doesn’t discriminate. Being a full time caregiver is so beyond stressful, the last thing I should have to do is worry about things like pain pumps suddenly stopping working! What are we as a country going to do about the medical crisis we are in? This is all of our fault. We let the media and the politicians distract us from what is really going on in this country. All the while the special interest groups, and political figure heads owned by other people with agendas slip in these laws that take away our services and rights.
Doctors should be able to council patients without worry, DMES should be able to provide new working equipment, and get reimbursed for it, home nurses should be able to change a bandage without worrying about getting to the next person, and caregivers should be able to rest, and spend time with their loved ones instead of literally having to keep their loved ones alive.
We have to do better as a country.