A call for information might produce some results for you. Letting them know you are NOT satisfied would be good. Can you first ask hospice what they are doing so you are as fully informed as possible? Is there a communication breakdown somewhere? Sometimes asking questions gets you further.
Dad has the small, thick round tanks (I think D), and he's only on 2L. Dad takes the small tank when he goes to ADC or we go out to breakfast and he's on the bigger floor model at the ALF. The ADC has one of the floor models in house, so they just disconnect dad from the smaller one and hook him to the floor model.
Dad was on a battery operated concentrator before, but when Hospice came in, they switched him to the "traditional" kind because Dad complained that the battery powered unit beeped so much (I think his breaths were too shallow).
I begged the hospice people not to switch him (Dad is afraid of the cylinders), but they eventually got Dad acclimated to it. Unfortunately, the cylinder has been a HUGE hassle. Only certain ALF personnel can turn it on and off and refill it. Hospice said he was on a conserving device but it ended up being a regulator, so his tank was running out in about 45 minutes. Dad can't see well, so it made him anxious overall.
Anyway, the cylinders have been more trouble than anything. Dad uses his 2.5 hours on ADC days because the ALF staff turns it on at 7 AM when he goes down for breakfast. He then keeps it on until his ride arrives around 8:30, and his driver has to pick up other people. He normally doesn't arrive to the ADC until around 10 AM which means the tank is definitely empty. Of course, I didn't think of that until the social worker from hospice explained that it would make sense that Dad is coming home without air.
In addition, the ADC uses a LOT of interns, so I wouldn't be surprised if they weren't turning off the tank when Dad arrived -- kinda a moot point since it's already empty...
And TRUST ME... I would LOVE to pull Dad out of ADC, but the social worker from Hospice heavily advised against it stating that his health would probably decline faster since he looks forward to doing that every week. So, for now, I'm leaving him in out of guilt. Besides, he just holes himself up in his room on the days he doesn't go. He truly embodies a Narc. It has to be EXACTLY like he wants it or he shuts completely down.
... and I'd rather someone just say "we can't get the concentrator" rather than stringing us along. I tried to call the provider and their line has been busy all day. The hospice person can't get a call back. This is awful. I'm half a step away from visiting the place. I wouldn't go postal or anything. Sometimes it helps to see that there is an actual PERSON attached to the oxygen.
The saga with getting my Dad a portable oxygen concentrator continues.
Recap: We determined that the small tanks that hospice switched Dad to (after me begging them not to) were not accommodating his needs. They only lasted for about 2.5 hours and Dad was running out of oxygen on the days that he visits the Adult Day Center. They would switch Dad to a room unit once he arrived at the ADC, but this meant that he has to come back to the ALF without oxygen and he has literally fallen into the door upon arriving back in the evenings because he's so out of breath.
Hospice has said that they're handling it, but it's been almost a month and still no portable tank. The hospice person says that the oxygen provider is dragging their feet blah, blah, blah, but now I'm getting ticked off. It took them about three different conserving devices / regulators to get the tank he currently carries to hold air more than a half hour, and due to PTSD, dad is deathly afraid of the cylinders. Getting him to take another one with him to the ADC is out of the question.
I'm at a point where I want to call the oxygen company and let them have it!! I mean, it's just oxygen, right? It's not like Dad needs it to LIVE or anything!!!
There's so much more to this story (like we had no idea that Dad was arriving to the ADC without oxygen. The director of the ADC just happened to mention that Dad was arriving with no oxygen after about two months of this nonsense! I'm no expert, but it would have been nice to know that)...
Anyway... as a codependent, I am naturally wired to care TAKE, and it is my hope that Hospice is doing all they can to rectify this matter, but this is beyond unacceptable.
Should I call the company and BLAST them or just wait and hope that Dad isn't hurt in this whole process?
I’d speak with hospice and the oxygen provider both. One month is unacceptable. There may be other reasons this is happening as well - maybe the doc hasn’t written the order or the oxygen provider doesn’t have the equipment and cannot get it. Maybe they simply don’t have the capacity to stretch the oxygen out time wise due to your dad’s order for liters per minute & the size of available tanks. Do the staff at daycare know how to shut the tanks off once he gets there to preserve the oxygen? Is anyone inadvertently upping the liters per minute gauge? After you’ve done your “investigation “ proceed from there. Have all your ducks in a row. Guessing dad’s quarantine has ended?
Get the name of the oxygen provider and call them yourself to figure out what is the problem. Get a new hospice company if necessary. You are entitled to switch one time during each entitlement period. Call the ombudsman for your state. Cal the Area Agency on Aging, if it's different from the ombudsman. Keep notes. File complaints. Let each entity know that you will not let this go until it is resolved.
Thanks for all the info guys. I HATE that this is happening, and sadly, I don't have the time or energy to deal with it. I have gotten into trouble in the past for being on "personal" calls so much trying to deal with Dad's stuff. I can't afford to lose my job. I thought Hospice would help, but I find myself being way more involved than I have to.
Oh how I wish I had the money to pay someone else to deal with all of this stuff (or maybe Dad shouldn't have smoked himself into oblivion and treated people so badly when he was younger),
Lately, it's like a new wave of resentment has started to set in and I find myself being even more impatient. I'm afraid that I'm starting not to care anymore. It's not a good place to be.
...and I LOL'ed about the $1500. No, we don't have that kind of money.
You should be able to call your hospice rep any time any day, if not you should find a new company. No two ways about it. When my sister went on hospice we had a similar situation with her oxygen and after 6 phones calls I stated that if it is not fixed or a really good, traceable, in writing reason for not being fixed then I will be changing companies and filing all complaints to ensure they don't get to harm one more persons loved one. I wasn't ugly I was firm and I was done. Low and behold within 2 hours we had a new machine and everything we needed to make it work for her specific needs.
It sucks but, sometimes we need to stand up and say enough, what the h**l is the real problem. Honey draws more flies than vinegar but I don't want flies, I want oxygen for dad.
I hope you can find time after work hours to call your hospice rep.
Dad was on a battery operated concentrator before, but when Hospice came in, they switched him to the "traditional" kind because Dad complained that the battery powered unit beeped so much (I think his breaths were too shallow).
I begged the hospice people not to switch him (Dad is afraid of the cylinders), but they eventually got Dad acclimated to it. Unfortunately, the cylinder has been a HUGE hassle. Only certain ALF personnel can turn it on and off and refill it. Hospice said he was on a conserving device but it ended up being a regulator, so his tank was running out in about 45 minutes. Dad can't see well, so it made him anxious overall.
Anyway, the cylinders have been more trouble than anything. Dad uses his 2.5 hours on ADC days because the ALF staff turns it on at 7 AM when he goes down for breakfast. He then keeps it on until his ride arrives around 8:30, and his driver has to pick up other people. He normally doesn't arrive to the ADC until around 10 AM which means the tank is definitely empty. Of course, I didn't think of that until the social worker from hospice explained that it would make sense that Dad is coming home without air.
In addition, the ADC uses a LOT of interns, so I wouldn't be surprised if they weren't turning off the tank when Dad arrived -- kinda a moot point since it's already empty...
And TRUST ME... I would LOVE to pull Dad out of ADC, but the social worker from Hospice heavily advised against it stating that his health would probably decline faster since he looks forward to doing that every week. So, for now, I'm leaving him in out of guilt. Besides, he just holes himself up in his room on the days he doesn't go. He truly embodies a Narc. It has to be EXACTLY like he wants it or he shuts completely down.
... and I'd rather someone just say "we can't get the concentrator" rather than stringing us along. I tried to call the provider and their line has been busy all day. The hospice person can't get a call back. This is awful. I'm half a step away from visiting the place. I wouldn't go postal or anything. Sometimes it helps to see that there is an actual PERSON attached to the oxygen.
Recap: We determined that the small tanks that hospice switched Dad to (after me begging them not to) were not accommodating his needs. They only lasted for about 2.5 hours and Dad was running out of oxygen on the days that he visits the Adult Day Center. They would switch Dad to a room unit once he arrived at the ADC, but this meant that he has to come back to the ALF without oxygen and he has literally fallen into the door upon arriving back in the evenings because he's so out of breath.
Hospice has said that they're handling it, but it's been almost a month and still no portable tank. The hospice person says that the oxygen provider is dragging their feet blah, blah, blah, but now I'm getting ticked off. It took them about three different conserving devices / regulators to get the tank he currently carries to hold air more than a half hour, and due to PTSD, dad is deathly afraid of the cylinders. Getting him to take another one with him to the ADC is out of the question.
I'm at a point where I want to call the oxygen company and let them have it!! I mean, it's just oxygen, right? It's not like Dad needs it to LIVE or anything!!!
There's so much more to this story (like we had no idea that Dad was arriving to the ADC without oxygen. The director of the ADC just happened to mention that Dad was arriving with no oxygen after about two months of this nonsense! I'm no expert, but it would have been nice to know that)...
Anyway... as a codependent, I am naturally wired to care TAKE, and it is my hope that Hospice is doing all they can to rectify this matter, but this is beyond unacceptable.
Should I call the company and BLAST them or just wait and hope that Dad isn't hurt in this whole process?
There may be other reasons this is happening as well - maybe the doc hasn’t written the order or the oxygen provider doesn’t have the equipment and cannot get it. Maybe they simply don’t have the capacity to stretch the oxygen out time wise due to your dad’s order for liters per minute & the size of available tanks. Do the staff at daycare know how to shut the tanks off once he gets there to preserve the oxygen? Is anyone inadvertently upping the liters per minute gauge?
After you’ve done your “investigation “ proceed from there. Have all your ducks in a row.
Guessing dad’s quarantine has ended?
I'm surprised you still have him going to ADC. This time, what they said really helped you out.
Oh how I wish I had the money to pay someone else to deal with all of this stuff (or maybe Dad shouldn't have smoked himself into oblivion and treated people so badly when he was younger),
Lately, it's like a new wave of resentment has started to set in and I find myself being even more impatient. I'm afraid that I'm starting not to care anymore. It's not a good place to be.
...and I LOL'ed about the $1500. No, we don't have that kind of money.
It sucks but, sometimes we need to stand up and say enough, what the h**l is the real problem. Honey draws more flies than vinegar but I don't want flies, I want oxygen for dad.
I hope you can find time after work hours to call your hospice rep.