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yvonne, I could have written your post. A long time ago, I did vent. I vented so much they removed my post! I didn't use bad words or anything, but I said sarcastic things about the idiot comments peo ...Read More

yvonne, I could have written your post. A long time ago, I did vent. I vented so much they removed my post! I didn't use bad words or anything, but I said sarcastic things about the idiot comments people make, etc. I haven't posted again until now. I haven't even looked at the site. I wondered, doesn't anyone else resent the comments of others? Haven't we all "collected" the most insane ones? Well, just for you, I'm here to say I really do feel your pain, and that I haven't found a way to answer. Try a long, unflinching look - a stare - and say nothing. OK, you may have to say "shut up". Nah, I guess that's hurtful. We just can't fix these folks, and we know that at least we can do good work for our patient, who appreciates our care such as it is. XO

Of course, we all know this day is coming. If we're lucky we have kept our parents, or one of them, longer than those of some of our friends, and we have witnessed the struggle from the sidelines..but ...Read More

Of course, we all know this day is coming. If we're lucky we have kept our parents, or one of them, longer than those of some of our friends, and we have witnessed the struggle from the sidelines..but then, it wasn't us. Now it's our turn.
A whole new set of feelings, and a situation we cannot resolve for the good of everyone. But then, I try to see it from the other side, and realize that it's selfish to try to shield myself from the pain of the situation, when she has given me her all and she is truly ready to be finished with her life. I want that for her, because she is tired. She has had to give up her "things" that she enjoyed having around her. She has stretched her funds as far as they would go and she now needs services from agencies, with people who don't really know her. She is beyond the ability to choose her place, her time, her daily life. These things are all planned without her input. She is fragile, isolated, and has outlived all her friends and family, as well as her eyesight and her hearing. I cannot give her these things back. All I can really do is insist that she be regarded as a valuable, beloved and respected woman with a powerful spirit, and try to comfort her and see to her needs as best I can, knowing her time is short and praying she feels no pain.

Hugs to the two of you. mk

Oh, Yvonne! That's a good one, yes, I've heard it. Have you heard these? "Oh, you'll manage, you are so strong" or "remember, you have to take care of YOU" (a personal favorite) or "It will get eas ...Read More

Oh, Yvonne! That's a good one, yes, I've heard it. Have you heard these? "Oh, you'll manage, you are so strong" or "remember, you have to take care of YOU" (a personal favorite) or "It will get easier for you as time goes by" or "I know just how you feel" or "have you thought about hiring a live-in?" or "I don't know how you do it". Then there are those who want you to hear about the facility they know of where the patient could get such good care. I think that what happens is that we really like some of these people we talk to about our life, and it disappoints us to discover that they are probably scared this sort of thing could happen to them, and they are uncomfortable acknowledging that possibility even to themselves. So they mutter something they think is an original thought. they really don't get it.
I long to hear the one who "gets it". I wait for that one. She will say "I have a couple of hours Saturday. I want to come and have you put me to work, or take you where you would like to go, or stay while you do as you like, even nap." So far, that person doesn't exist for me, but I hope she finds you. In the meantime, know you are not alone in this, we got yur back, Sister. Mind the previous advice. Keep kicking. Don't give up. Keep networking. One benefit is that the more you share the more likely you are to find someone who has experienced similar issues and found some help or answers. I try to be that person to others, and even that helps a lot.

Marie, do I get this right? They just want to accommodate the swelling instead of addressing the swelling itself? What tha...? Her shoes are probably too tight from the swelling anyway. Diabetic s ...Read More

Marie, do I get this right? They just want to accommodate the swelling instead of addressing the swelling itself? What tha...? Her shoes are probably too tight from the swelling anyway. Diabetic sox would only (supposedly) be looser so they wouldn't cause a line at the top, but in any event she may just have to get some wide shoes. My mother has these same issues, but she is also diabetic, so Medicare buys her special shoes every year. What about good ol' Ted hose or the stronger prescription ones? Those should also be covered.

A UTI by itself can cause confusion. She may have been medicated or sedated with something that takes some time to work out of her body. Low potassium also can cause bizarre behavior/thinking. Dehydra ...Read More

A UTI by itself can cause confusion. She may have been medicated or sedated with something that takes some time to work out of her body. Low potassium also can cause bizarre behavior/thinking. Dehydration piled upon these two things only makes them worse. I know there can be resistance to drinking water when prompted. Been there. In the case of my own mother, she resisted because she was incontinent and not properly protected, therefore reasoned that the less she drank the less likely to have "leakage". Too bad we are all so "rubber-stamped" as to symptoms and condition, to the point that the patient has to have wild swings in symptoms and behavior before someone takes notice. I know it can be a slow and steady decline to where the caregiver hardly notices, becomes accustomed, (then WOW! What's this?). But medical professionals are trained and should be able to catch these things sooner if they only weren't always so rushed. If she is out of the hospital, that's the first return to normalcy. It may take her several days to rest and get the proper sleep, returning to the home routine and off meds, etc.
Try to get her to use her words to describe how she is really feeling - now - and help her think through whether descriptions she is hearing from others is actually how she feels about certain aspects. Try this every day, make notes, and ask about specific ways she is perceiving herself and her condition. This helped me a lot with my mother, then I was able to describe to medical personnel what she had told me. This helped all of us. Lots. Another thing I try to do is to have her make decisions about what she wants and when, go or stay, in or out, etc. then make it happen just how she has decided. So often she will express her wishes and someone will talk her out of it, or just say "no" not now or not this or that way. Makes them feel powerless, after spending their life making their own plans and being able to carry them out and run their life. Some of the big issues have to be the way they are, but lots of the detail can be easily planned out by honoring your mother's own decisions. This is very satisfying. I know.

Mother and I estimated her expenses for maintenance, gas, parking garage fee at her residence, insurance, etc., and figured out that she could call a taxi a few times a month, especially if she shared ...Read More

Mother and I estimated her expenses for maintenance, gas, parking garage fee at her residence, insurance, etc., and figured out that she could call a taxi a few times a month, especially if she shared with someone else (generally that "someone" was asking her to take them somewhere!". the amount she received for her car went a far way for such fares, too. We also discussed a couple of scares she had with a flat tire, and getting a little lost in an unfamiliar neighborhood where the roads had been reconstructed--she was out of her element--and had fortunately been helped by a kind stranger, but it could have been different both times.
I told her that since I can't be with her, it would give me more peace of mind if she would just not be out on her own in her car anymore. She still misses being able to go on her own if she needs to or wants to, but she did understand the fear she had those times and relented.

I've heard of a similar situation actually being escalated to the Elder Abuse Hotline, and the state stepping in to sort it out.
Another friend is a conservator, which, in that state, is overseen ...Read More

I've heard of a similar situation actually being escalated to the Elder Abuse Hotline, and the state stepping in to sort it out.
Another friend is a conservator, which, in that state, is overseen by Probate department. That has been such a nightmare for her, despite her ongoing devotion to her family member that could not manage on his own, that it has kept her poor and unable to get a full job to meet her experience because she spends so much time, not on the family member, but the conservator job. If guardianship can be arranged, that would seem possibly less restrictive, but it must depend upon laws there. In any event, the time involved to actually sort out issues and make positive changes is exhausting. Take a breath.

Bless you.

It could be that the anti-depression med has a side effect that makes him feel uncomfortable. My hubby's doctor stopped his med immediately when he heard a description of the sensations caused by one ...Read More

It could be that the anti-depression med has a side effect that makes him feel uncomfortable. My hubby's doctor stopped his med immediately when he heard a description of the sensations caused by one med. He started him gradually on another one, and there has been no problem. Did you ever read the information that comes with the various medications your father is taking? Do you know that he needs all of these, and if they interact with each other in any way? Sometimes, just a change from AM to PM (or something similar, for instance) can make a difference in their effects. Of course, he may be on a course of meds several times each day, etc., and I'm not saying to change anything on your own, just question your own understanding as to the purpose, the need, the combination, etc. Sometimes the patient can be sleepless or sleepy, have vivid dreams, have dry mouth, so many things can make them decide not to cooperate. My mom is nearly blind, and I made one page for each med,indicating when taken, what the med treated, etc. I used giant writing with a black marker, drew a big picture of the item, etc. So it wasn't just lilke taking all the pills in the organizer, she actually knew what, when, why.
Sometimes the supplier changes the appearance of the pill, which she can notice and question right away. Finally, they just need to have an explanation why they need to cooperate and what the absence of the medication can do as well as how they can do better with it. He may feel more in charge. Our elders have made choices and decisions their whole life, and that generation accomplished so much, we must not take all their decisions away unless they are asking for the relief of that as well.

It was our experience, in general, for agencies to aim for the patient that is needing the least services, especially the elderly after hospitalization, etc. Assuming we were ill-informed, the salespe ...Read More

It was our experience, in general, for agencies to aim for the patient that is needing the least services, especially the elderly after hospitalization, etc. Assuming we were ill-informed, the salespeople who hang out at the hospital would put imaginary limits on service, visits, duration, scope, episodes, etc. We would always know they were not qualified to assess properly, were not "clinical" or familiar with actual Medicare guidelines, and would imply that the agency would be in charge of decisions, frequency, etc., when in reality it is the doctor who gives the orders and the agency that must follow the orders. If you ask for any of these wild claims in writing, they will back out. Under Medicare, the Home Health Agency can schedule as many as 28 hours per week, and possibly more, up to 35 hours per week if the patient requires the care. A Medicare Beneficiary is entitled to choose to be at home for skilled nursing care, so the agency is not to "decide" that the patient needs to be in a facility. Later, if the agency accepts the patient, the marketing person who made initial intake is out of the picture and not responsible for the commitments that were made. When the patient needs immediate care, then, the agency can be in the driver's seat and only staff and supply as they wish. In my first (and even second) post, I tried not to sound as negative as our experiences have been, even though I did cite the problems honestly.
Frankly, Medicare has entrusted patient care to agencies who are empowered (or so they think) to be controlling, intimidating, and insensitive to the patient's needs. Our doctor and his assistant are worn out, and I can no longer go to them with the constant problems caused by the agency, although we are unable to just quit, as the patient needs the care. They quit us soon enough. Please know that every HH staff who has come to our home to care for the patient has been kind, professional, and outstanding in every way. The administrators are often not qualified to make decisions about the patient, but do so from a business standpoint only. They are not familiar with the patient's needs or condition, nor do they necessarily have information about the medical facts of the patient's need for service.
The patient is NOT required to stay home and never leave. The patient's family, caregiver, etc., are NOT required to learn and assume the care. The HH can "say" many fancifil things, but if they won't put it in writing, be suspicious. The doctor can and will order an aide, as, under Medicare, if the doctor has ordered skilled care under Medicare, the patient can certainly have an aide as well if necessary. This is NOT a rare case.
The less care they give to the patient, the more funds they get to keep as profit. I haven't met one yet that didn't want us to believe that the imaginary Medicare guidelines they repeated. That's why I suggested that you get familiar with terms and policies as soon as you can.

I will say - sort of. Between Medicare and Home Health, they have real or imagined "rules" that you can never predict will impede the care your doctor orders. I really shouldn't say much more becaus ...Read More

I will say - sort of. Between Medicare and Home Health, they have real or imagined "rules" that you can never predict will impede the care your doctor orders. I really shouldn't say much more because, over three years, our experience has been so gruelling that I can't be optimistic for you. I can tell you this though: if your doctor is not able to order skilled nursing for the patient, Medicare will not pay home health companies to come to give custodial care. If there is a skilled need, though, the patient can also receive aide services. Read the special book available online thru the MyMedicare.gov site to try to learn terms, etc. You can also call 1-800-Medicare to ask specific questions about various categories they offer in their recorded message when you call. Aside from these things, you can read my previous comments, bitter as they are. Good luck.

Hmmmmm. Bob. I think Medicare needs to hear about this. I do not believe that administrators of these companies are so ill-informed that they believe the claims they make regarding low payment for care, etc.
 ...Read More

Hmmmmm. Bob. I think Medicare needs to hear about this. I do not believe that administrators of these companies are so ill-informed that they believe the claims they make regarding low payment for care, etc.
I often call 1-800-Medicare with questions, like: Is it true that.....? or, How can we get the care the doctor is ordering for home health? or, Can I speak to your supervisor, who may know how we can proceed with getting our Medicare benefits?
Did you know that the spouse/caregiver is not required to do such care, and that if your wife is suddenly unable or unwilling (say, due to scary complications, or, for no stated reason at all) she cannot be required to do these cares?
Just a few thoughts, that's all. Remember, I was also writing about not being able to get the care the doctor orders, so I have heard 'em all. We can only hope that there might be some changes for the better at some point. This is no consolation now. I hate this. HH companies have way too much power, and do not have to answer to anyone. They do have a license, but I think they are all pretty safe from any kind of reprimand. I assume that, when you have called, you have asked to speak to the director of nursing or an administrator (clinical). It would also help for your doctor to do the calling in the first place. If you're ever hospitalized, or have been recently, you may find a willing case manager to go to bat for you.
Say, if you have been in the hospital, and the doctor wants you to have home health from there, I've been told the hospital cannot discharge you without having the home health in place. That was our recent experience, and the company put us thru
HLL and quit two weeks ago, four months after starting up. Seems they "couldn't staff". I am 66 and my Bob 71. The "wall" hit me, I didn't hit the wall. Boom. I keep thinking about the spinal cord nurse who told me she would "give me two years" and then I'd be done. I think she was advocating for a facility for Bob.
He barely had wrist flexion, had a feeding tube, pneumonia, massive spasms. Now he has bi's and tri's, been home for three years. His injury was three years ago last week. I maintain that facilities are where quads go when they want to give up. There may be exceptions, of course, but home is best. He has 8 doctors who think so, too. I may not be able to take over completely again. But I have a heck of a mouth on me. They call me the advocate, but we are still holding the short one pretty often. Well-meaning officials often suggest a "live-in" or "self pay". Even HH company employees will suggest these things. I merely state that my husband is a Medicare beneficiary and that there are orders from the doctor to care for his skilled needs. Stonewall treatment.
Final thought: I don't know where you live, but I hope you have a Spinal Cord Injury group closeby. The Christopher Reeve foundation may be able to help you find something. There is great learning to be had, and these groups are often led by someone with contacts for referrals for legal, disability, vocational, etc. options. Wish I could help more.

My husband's doctor certified that we needed a patient lift in our home for transfers. Medicare paid (and dearly!) for the rental of a lift for 13 months, then it was ours to keep. Also, the caregive ...Read More

My husband's doctor certified that we needed a patient lift in our home for transfers. Medicare paid (and dearly!) for the rental of a lift for 13 months, then it was ours to keep. Also, the caregiver in the home does not have to become also disabled in the effort to care for the patient. If the patient has a recognized need for therapy or skilled nursing, they can also provide an aide. I should think some Home Health Therapy (OT) may be able to help with some alternate methods or DME (durable medical equipment) to help with toileting or transfering. You may be able to pick someone's brain if you can contact someone willing to help you brainstorm about your specific situation at home. I spent hours just calling for information and help with our situation, and would receive a glimmer here, a gem there, and am still learning how to "tiptoe through the tulips" of healthcare.

Hi, Bob. MK again. My husband's name is Bob, too. If you don't mind, a couple of questions: Do you have a skilled need? In other words, does your doctor (or will he be able to) write orders for skil ...Read More

Hi, Bob. MK again. My husband's name is Bob, too. If you don't mind, a couple of questions: Do you have a skilled need? In other words, does your doctor (or will he be able to) write orders for skilled nursing for you from a Certified Home Health company? My husband needs his catheter maintained and changed by a nurse while he is in bed. If not for a skilled need, Medicare will not cover what they call "custodial care". Home Health exists for Medicare to keep beneficiaries home and not admitted to hospitals for illnesses and conditions that can be avoided or maintained at home. I'm assuming your wife was told she had to learn to do this, but it is not so. Well, I guess I could go over all the lies told (and only told, not written anywhere in the medical record or that you could prove) by home health personnel. But that would take a couple of days and fill this blog several times over. Medicare writes that this catheter care is a skilled need. If your doctor can write orders for this care, then you are also entitled to a bath aide, and Medicare pays for up to 28 hours per week provided by home health. Physical Therapy and Occupational Therapy are also skilled needs, and there are others that HH is able to provide. Simply getting this help, along with a bath aide for bathing and dressing and grooming is a huge load off. If you have not, please get familiar with some of these published facts through Mymedicare.gov. It will help you. You can call 1-800-MEDICARE for help with specific questions, also.
Here's something I always like to point out to Medicare and administrators: my husband does not have access to proper medical care like other Medicare beneficiaries have. He can not be cared for, properly examined, etc. in a regular doctor's office like other folks can...even some other disabled people can still get basic health care at their doctor's office. I also like to observe to one and all that Medicare does not address in its benefit policy manual, or examples, or CMS guidelines, or illustrations, at any point that I can find, spinal cord injuries or quadriplegia. So they have deliberately left out conditions that are specific to one of the, if not the most, disabling injuries that can affect beneficiaries. Once stabilized, quads are taught to exist, even hopefully slightly improve over time. And, yes, homebound. So homebound by every definition. But HH, again, can further push you around by saying that you cannot go out and if you do they will discharge. This is not a Medicare rule.
Let's face it. They want to take cases that need the least and make them the most money. I think they fail to hire for the best pay, the people who know how to bill properly and use codes for this extreme condition to claim proper Medicare payments.
Finally, if you are seniors, please call the Senior Helpline. It's an 800 number. They will ask you a few questions and may be able to help you find respite care at a very low cost that can help your wife with some relief. Wish I could talk directly to you. We were there, too, and it's amazing what a little social worker interaction could have done for us. It's criminal that the SW at the hospital after Bob's injury was so apathetic. The mymedicare.gov site also has a "Home Health Compare" which lists certified HH companies in your area. If your doctor won't help you, find one who will. We care, Bob.

no matter where it came from. Of course, for legal and tax reasons, she should keep accurate records and all receipts...if nothing more than to be able to show to family if there are questions. If the ...Read More

no matter where it came from. Of course, for legal and tax reasons, she should keep accurate records and all receipts...if nothing more than to be able to show to family if there are questions. If there is money in the account and your mother has additional needs, medical or otherwise, there should be no legal reason why that money can't be used. I have never heard of having to account to SS how the money was used. Holy cow, I guess I have to quit using the ATM at the casino!
If you're concerned, help set up a reasonable budget; and give her respite, too.

Here's what happens to my 99-year-old mother with the donut hole. She is in an assisted living facility. They dispense her meds. They use a separate pharmacy entity to maintain her prescriptions, obta ...Read More

Here's what happens to my 99-year-old mother with the donut hole. She is in an assisted living facility. They dispense her meds. They use a separate pharmacy entity to maintain her prescriptions, obtain them from (themselves), and they put them in little organizers or packets or something for each day's dosage, etc. They do not have a bargain rate for the prescriptions. She has even had her OTC meds taken from her, and is not allowed to obtain any prescriptions on her own. If she wants to obtain her own prescriptions, she must go get them herself and pay a fee for each prescription to be introduced into their "system" which often exceeds the original price of the prescriptions themselves. Even samples that the doctor tries to give her are confiscated and destroyed. Therefore, she hits the donut hole pretty early in the game. There is no logic to be argued here. This is the way they do it at this place. Everybody gets a piece of her pie. they point out that this was part of the contract she signed when she entered, and that these policies are for her own safety and to protect the staffers. She has nearly run out of her life savings, despite the fact that she never spends a nickel on herself. Monthly resident fee is over $3200. If anyone has some insight on this situation, I'd be glad to hear it. In a separate issue, I have described our life under Home Health, as my husband is a quad. We live hundreds of miles from my mother. I cannot go to or help her. Breaking my heart.

We have a doctor who plans to continue prescribing a couple of prescriptions for our care. He has shown particular interest in keeping us well-supplied in case he increases the dosage of the prescript ...Read More

We have a doctor who plans to continue prescribing a couple of prescriptions for our care. He has shown particular interest in keeping us well-supplied in case he increases the dosage of the prescription. Therefore, I think he might be willing to request a greater number of pills, again in case he increases, and that might help us stay supplied for a longer period. Also, I know that some manufacturers have programs where they have special pricing for individuals who have trouble paying for needed prescriptions. Aside from that, Medicare has resources, as do county and state organizations. In other words, yell "HELP!!!" With any luck at all, that nonsense aspect will be eliminated soon.
Congressmen, senators, etc., need to hear of specific cases, include your photo! asking just what are people supposed to do? We've stayed silent too long, and now these officials are sort of surprised at the upsurge of outspoken seniors who are out of patience.

Dearest Sooz and Carol,
What's criminal is that we are NOT alone. I'm sure there are lots of other folks who have fallen thru the cracks like us. The fact that Medicare directs care for these pat ...Read More

Dearest Sooz and Carol,
What's criminal is that we are NOT alone. I'm sure there are lots of other folks who have fallen thru the cracks like us. The fact that Medicare directs care for these patients who are totally disabled, and that the goal is to keep them well and out of the hospital, should be enough. Home Health agencies can abuse by claiming that Medicare will only let them send out personnel for one hour for aides, or 15 minutes for skilled nursing, etc. Then, they can ask their employees if they are willing to take on his case on this basis, and no wonder they can say they cannot staff the case. This is a minimum two-hour visit. In addition, this company committed to employees to pay for two-hour visits to do the care, then ended up only paying for one hour, again claiming that Medicare would only pay for one hour. The man who is currently substituting for our regular aide cleared $7.50 per visit for two days last week. He did show up this AM, but he had a bad headache. He says he has committed for the two weeks to substitute, so he will do so. I know how he feels, I have a headache, too. Sooz, I'll try the county, but, in the past when I have pleaded everywhere for a referral for a case manager or social worker to be for us, not for the agency, etc., I have been told that my husband is not on county services, so they cannot step in. Medicaid does not have the homebound rule, and they do not restrict billing like Medicare must...although I know Medicare will pay for up to 8 hrs per day, max 28 hours or 36 hours in extreme cases, per week. Medicare is not the problem, but not the solution, either, because they do not enforce their rules. Home Health companies happily enforce Medicare rules to suit their purposes, and they also state their version of Medicare Home Health rules, which are seldom accurate. They want their employees and patients to believe that Medicare has a one hour limit on visits, or that their obligation to provide medical supplies is somehow mitigated by their opinion or their familiarity with the condition of the patient, notwithstanding the purpose or the need for the items. Home Health companies simply do not want the responsibility of quad care, because they can't push people and their schedules around. They must step up and keep the schedule, providing the services needed. Of course, employees quit, take time off, etc., and most companies have arrangements for fill-ins. I have no doubt of this, because they seem able to stay in business, and no one is irreplaceable. Companies do go on without all employees on board at all time. The unemployment rate is huge, and this is a steady job for any company. What is really a shame is that my husband needs Home Health because there is no access for him to receive the care he needs in any other way. He is permanently, totally disabled, and cannot access facilities like other Medicare beneficiaries can, on their own. Because he needs this service, he is also a prisoner in his own home, and we have been warned that if he goes "out galivanting" that he will be discharged and termed no longer homebound. Home Health Hell.

My husband's Home Health Agency abruptly quit (because they could) when he was hospitalized and needed surgery. They had threatened and otherwise intimidated us for months before this; tried to dump h ...Read More

My husband's Home Health Agency abruptly quit (because they could) when he was hospitalized and needed surgery. They had threatened and otherwise intimidated us for months before this; tried to dump him on two other companies; cut off or delayed needed medical supplies; sent a notice saying they would discharge if any of the workers from their company who were working on his case became unavailable for any reason; lied about Medicare rules, lack of staff,had a rule about only providing supplies every other Friday, then failed to supply needed items and said it would have to be delivered in the next order two weeks after that.
Would not provide needed and necessary medical supplies for use at home until we had to purchase, then they used our supplies and billed Medicare for them as well. They did not resupply or refund for these items needed when their own employees came to our home to care for my husband. Rescheduled or laid off or fired staffers that were working out well in our home for no apparent reason, then would send others who clearly did not want to be here. They started this final campaign the beginning of 2009 when I told them I would be having surgery that would render me unable to bear weight on my foot for 3-6 months. I guess they were afraid that I would ask for night service for my husband as well. They should have been able to provide this, as they were only doing 12 hours/week and Medicare allows as much as 28. A new company came in when my husband was discharged from the hospital, but they are now quitting, only four months later. Pretty much the same problems with them as the last company. (No, we will not "give" you this; no, you do not "need" that, no, we will not send two sizes of gloves; and, the ever-popular "if that person becomes unable to continue this assignment, we will discharge". We are at a loss what to do. No company willingly takes a quad. As soon as employees come to our home, we bond. The workers are never the problem. The administrators are always guarded, reluctant to actually ackbnowledge the need for the urinary supplies, sometimes very specific ones, or the procedures ordered by the doctor. We always have to train new people to do quad care in general, but this is not the biggest problem. Administrators are the problem. They cite nonexistent Medicare rules, will not learn about their responsibilities to their patient and supply accordingly, often leaving those "details" to office clerks who are not clinical, therefore lack the knowledge to comprehend the need, the absolute urgency for the items to be supplied, then regard me as some sort of unreasonable inmate with no place in the mix. Our doctor his given up, pretty much says "good luck with that" when it comes to calling around for another company to carry out the doctor's orders. These companies do as they like and discharge without reason, except that they would have to be more responsible and just follow the doctor's orders and provide necessary medical supplies. Yes, a quad's needs are very large, and the time schedule must fit his schedule.
He is in bed by 9, and cannot be left in bed late in the morning. He cannot eat, drink, in bed, has a choking and swallowing problem, so must be up early to drink water, eat, have medication. Needs a bed bath, range of motion, and must be placed in his power chair and groomed. During all this he is very good-natured, is not abusive or deman-ding, appreciates their efforts. It is like he is being punished for this freak accident, as tho he has a choice, is trying to get away with something. Calling agencies on our own is always difficult. I cannot talk to administrators to describe the detailed care he needs. Intake personnel are often not clinical, and will say they can to the job and start tomorrow, then a couple of days later I receive a message that the company cannot staff, or there is no one available at that time. The last time, something like 26 companies were called, and they all stuck together on this. He almost didn't get discharged from the hospital, they threatened to put him in a facility, where he definitely does not belong. Sorry for going on and on. This is so humiliating and depressing. And scary.