Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
It's ant season...
...which corresponds to Monsoon season, here. Occasionally over the last few weeks I've been reminding myself of this, but only briefly. The reminders are: "Oh, yeah, I'd better sprinkle diatomaceous earth around the inside of our house before the ants decide to come in." Then, I've forgotten about it.
Diatomaceous earth requires a 48 hour period to take effect. I know this, but I kept deleting my reminders from my memory. This morning the ants were covering one of the cat's food dishes. So, we're using regular ant spray. I hate to do that, but I've just been too occupied to remember to sprinkle the safe stuff. Oh well. We've survived years of using the dangerous stuff. We should be okay this year. Fingers crossed.
Oxylated: Part 4
I've located a second Hospice company in this area that is also a TriCare Provider. I'm still having trouble believing that my mother's, through the local hospital, is not. I can't imagine why this company wouldn't have applied for TriCare provider status, or, if it did, why it might have been refused. But, you know, if it's not, it's not. I'll probably be fishing out TriCare billing statements for our oxygen company tomorrow, if not this evening. I tried to research wholesale oxygen prices online. Not an easy task. Didn't come up with anything usable.
I was pretty good about keeping up with election coverage until the evening of 5/14/08. Since Mom came home about all I've done is scan the Phoenix paper for coverage. Maybe my scanning facility is impaired by other concerns, but it seems hard not to notice that the issue of health care in the U.S. seems to have been buried. I think I know why it is so easy for this to happen. When one (meaning me) is caught up in Health Care Hell, it's hard to focus on anything but the concerns immediately in front of one. I have, by the way, stopped watching all doctor shows. It's extremely irritating to watch these things, notice the extraordinary levels of treatment that are lavished on the ill and the injured and not wonder why there isn't any focus on the conversations that are surely going on in the background regarding whether the hospital or clinic is going to be "adequately reimbursed" for such services, thus, should these services be extended to the patient.
Mom hasn't begun to awaken, yet, but, since she's been rousing around 1100 on her own over the last few days I'm going to try gently pushing her out of the veil of sleep in a few minutes and see what happens. She'll be an hour shy of her 12-hour-sleep-mark, but I'm counting on the angle of the sun through her window to help me. We'll see what happens.
As for me, I'm agitated and a little under-slept. But, I'm okay. As usual, I'm counting on Mom being up to lighten my mood.
This afternoon, when Mom finished her nap...
...she arose from bed on her own and shuffled, as had been her habit prior to the evening of 5/14/08, from her bedroom, using furniture, walls, appliances and counters, all the way into the dinette and sat in her chair. yes, this was more than a bit dangerous. Adding to the danger, I was so deeply involved in finally going through Mom's hospital chart contents that had been copied and sent to the intermediary "respite" home that were given to me when she left (some of the contents of which merit a post of their own) that I didn't hear her shuffling until she was halfway through the kitchen, at which point I jumped to, scurried into the kitchen with the wheelchair and followed her in case she became shaky, which she didn't. She considered it just this side of disgusting that I felt the need to spot her.
I've made a mental note to reactivate that portion of my aural scanners that used to detect her shuffling almost before it began. On the other hand, what today's activity indicates is exactly what I've been hoping: Here at home all her ingrained expectations involving the house being at her disposal are kicking in beautifully and prodding her to move and exercise those muscles that were on the verge of wasting in the hospital, the intermediary home and the rehab facility. She's not quite as free in movement as she was a month and a half ago, but she's getting there. She always begins every trek with the assumption that she'll be able to reach her destination as before. I follow her closely in the wheelchair, letting her know that I'm right behind her so that if her legs begin to feel "iffy" all she has to do is bend her knees and she'll be seated. She's been taking advantage of this a lot but today, after her nap, obviously, the wheelchair wasn't there and she persevered.
She did some walkering this morning, from the bathroom to the dinette for breakfast. She complained about the walker, though. When I asked her to be as specific as possible about her complaints she said, "It just doesn't feel right."
I figured I knew to what she was referring but I wanted to make sure. "You mean, like your other walker (the one with four wheels that I donated to the charity place where I got this one)?"
"No," she said, "I didn't like that one, but it didn't feel like this one. There's something wrong with this one, I just can't put my finger on it."
I know exactly what's wrong with it. The joints close to the top are the tiniest bit rickety and can't be fixed unless the plastic casing is replaced. The reason I know this is because when I was at the charity place the guy who manages the equipment explained this to me when I complained about the state of the walker. Her had several there of the same model, probably close to twenty. He took them all down for me and, sure enough, they all had the slightest jog to them, caused by the plastic casing expanding from age and use. So, that one goes back to the charity place. The one with which I left was the sturdiest of the lot. I think I'm going to spend some time next week canvassing the three other charity places here for medical equipment, but my hopes are low, frankly. I expect I'll end up purchasing a new walker so that Mom's will be sturdy. Funny how much this equipment costs new and how it all seems to define the ultimate in obsolescence. Medical equipment producers must be making money hand over fist. And, there must be a lot of people out there using barely adequate, somewhat dangerous equipment because they can't afford the medical equipment producers' profit margin. Jesus. The more I learn about the medical-industrial complex, the worse it looks.
Anyway, I'm heading for bed, but I wanted to mention that Mom is coming to, again: Her cold is retreating; her coughing is loose and very productive; her temperature was normal all day today; her energy is returning; so is her native initiative in her home.
I remain exhausted, short-fused, scared, perplexed and extremely discouraged by all the circumstances surrounding us, at this time. Nonetheless, Mom's recovery is the light guiding me through this treacherous tunnel and I wanted to spend a few words celebrating her.
Some of the fault may have been mine. Oxylated: Part 3
From what I've been researching this morning, TriCare kicks in on Hospice when Hospice is delivered by a TriCare approved provider. Considering that the hospital through which my mother received her pre-hospice care is a TriCare provider and the Hospice provider is under the auspices of this hospital I just assumed (yeow, I know, don't remind me) that this hospice provider is an approved TriCare Hospice provider. Looks like it may not be; although I can't be sure of this, either. Thus, the problem with the oxygen reimbursement.
So, at this point, I have to wait until Monday to check with TriCare West and with our Hospice provider. If our chosen Hospice provider isn't also a TriCare provider, there is one in the area who is, only one; and, according the Medicare/TriCare Hospice regulations, we do have the right to switch providers once during each benefit period.
And, I'm still dragging the floor, energy-wise.
My god, this is ridiculous. How in the world does anything medical ever get done in this country? No wonder we're up to our eyeballs in bad medical care! Jesus!
In the meantime, I continue, by day, to figure how many days I have left in my two week inside decision point...and my month outside decision point. This is absolutely wrenching my soul. I am truly in doubt about my strength to get through this.
My mother has walkered twice today, so far.
Once, this morning, from the dinette to the stairs leading into the living room, then descended the stairs. Once, again, from her rocking chair in the living room to the stairs leading into the foyer, then ascended the stairs (with my help, of course). She asked for the wheelchair after both runs (the first from the stairs to the rocker, the second from the stairs to the bathroom), and that was fine. When I asked her, both times, if what she'd done was "hard", she said, "No." Definitively. So, we're making some progress.
She still, obviously, has her cold, but she seems to be feeling better.
I, however, remain frayed at the edges. During a particularly churlish period this morning before she awoke I considered giving this level of caregiving two weeks at the inside, a month at the outside. The inside limit is in case I find I simply can't adjust at all. The outside limit is if it looks, optimistically, like I can adjust but I find, two weeks beyond the first two weeks, the care required seems to be ramping up more quickly than I can adjust. I'm not feeling good about this. Today, during our bathing of Mom, I was feeling so miserable about the possibilities that I confessed to Mom, in tears, yes, that I was afraid that I might have to break my promise to her to see to it that she is always cared for in her own home by me and that she is allowed to die here. At this moment this is how I feel, and I am beside myself with grief that this exhaustion has me by my previous resolve.
I don't know. We'll see. I'm concerned that I'm actually putting time limits on myself in regard to my ability to meet these new requirements of our adventure. I've never done this. And, if it happens that I can't hack this I will hand Mom over to my sisters and disappear, as I know I will not be able to witness what will become of Mom if I fail.
So, that's where I am now, folks. A long, long way from home, even though Mom is finally and securely home.
Oxylated: Part 2
Part 1 being the immediately previous post.
So, this afternoon Intrepid Hospice Nurse Team Leader (from here on to be abbreviated IHNTL) calls to tell me the following:
- Medicare, she says, reimburses our oxygen company "only" $90/month for my mother's oxygen, regardless of how much she uses (or doesn't use). I use quotations around the word "only" because this is the word she used. Someone at our oxygen company told her that my mother is using "$895" worth of oxygen a month. She goes on to confirm that, supposedly, $805 is the amount our oxygen company has been "eating" on our behalf. "This is prohibitive," she said. I agree; such numbers certainly are prohibitive. Thus, she spoke to our company's "respiratory therapist" who had another suggestion that would help us to reduce the cost of my mother's oxygen. There is a concentrator which also fills tanks with oxygen as it runs. "The tanks aren't as big as the tanks you've been using [we've been using E tanks, lately]," she told me. She also wasn't clear on how many hours of oxygen use at 3/lpm, which is my mother's current level and may or may not be reduced later, depending on a variety of factors, each tank would deliver. She told me, as well, that it takes "2 hours" for a tank to be filled and that the concentrator can only be run at 3/lpm while it is filling tanks.
- I tell her that, allowing for actual facts such as how many tanks we'd need to get through a day, thus, how much time would be spent filling tanks on the concentrator, I would be willing to try such a system, provided we also had, say, four back-up E tanks on hand, just in case. She thanks me profusely, so profusely that I'm prodded into nervousness as the conversation ends.
- The more I think about all this, the more questions float to the surface. I have to tell you, I'm not a quick on-my-feet thinker. I make up for it later, though, and am used to operating successfully in arrears. So, here are the questions that occur to me:
- We've been with this oxygen company for three and more than a half years, since October of 2004. While it is true that, for the first 2 (at least) years of our relationship my mother didn't use much oxygen, I'm sure it is also true that the company had some clients who use oxygen the way my mother does now. If it is true that this company has been eating oxygen costs left and right, you'd think they'd be close to bankruptcy. Instead, in the years that we've been with them, they've opened up a second office in Prescott Valley. Kind of puts those numbers they fed IHNTL into perspective.
- I keep all the mailings we get from TriCare regarding what they pay to our providers. One of those providers listed on the payment mailings is, of course, our oxygen company. I'm going to rifle through our "in boxes in my bedroom" filing system over the weekend to find out what Medicare and TriCare is really paying this company. You see, it's possible that Medicare, alone, is reimbursing at the rate of only $90 per month, although you'd think this would be based on the prescription, wouldn't you? However, TriCare pitches in after that. I'm curious to know how much TriCare is paying, as well.
- Perhaps, at this time, Medicare plus TriCare isn't quite covering the company's costs. However, for at least two years I'm sure that our payments were probably subsidizing other people's oxygen costs.
- Now, I'm becoming really curious about why it is hard to get any literate information from Hospice employees about how Hospice costs are covered. I mean, is IHNTL leading me to believe that our oxygen company is going to bill them for our Medicare/TriCare overages? This doesn't sound right. If they were going to bill anyone, wouldn't it be us? And, if it is us they've needed to bill for overages, why haven't they been doing this all along?
- Regarding, now, the new system which involves a concentrator filling oxygen tanks:
- What happens if my mother needs to use oxygen at 4/lpm, or even 3.5/lpm, which is what the rehab facility often had her on (they also, at times, had her on 2/lpm)? Does that mean that she has no oxygen for the next day? Even though her prescription is written for "2-4/lpm"? Say that the tanks provided deliver half of what the E tanks deliver. This means that I'd need to make sure six tanks were filled each day. That's 12 hours of filling time. Now, there are two ways I could do this. Run the concentrator constantly and fill most of the tanks while my mother is up, which would keep me from airing out her bedroom during the day to make sure it doesn't heat up "prohibitively" during her nap time. This would involve, still, filling a few tanks while she was sleeping...maybe one during her nap and possibly a couple others as she sleeps in the morning. Unless, of course, she needs to be on 4/lpm. Otherwise, I could stay up all night filling tanks.
- In addition, this also means that when I wasn't going nuts monitoring tank filling, I'd be going nuts monitoring tank usage, seeing as how I'd need to switch out tanks twice as often as I do now. As I explained to IHNTL even later in the afternoon when I told her I'd left a message for the respiratory therapist to call me before he brings out the equipment next week, "I am not interested in adding such chores to my already chore-filled schedule." She said she understood.
Not going to happen, people. At least, I hope not. I want to say, at this point, in case anyone out there is connected to any Hospice organization, the time when people need hospice is not the time when you want to present them with impossible choices for which, previous to Hospice entering the picture, there was no need.
Forgive my heightened suspicions at this point but I've noticed that each Hospice employee with whom we've spoken has made it clear, at least once per employee, sometimes more, that we are always free to sign off Hospice. I didn't, previously, find this odd. Now, I'm beginning to wonder, simply because of the problems we've had with procuring sturdy, usable Durable Medical Equipment and, now, the problem we're having with remaining with our oxygen delivery system, if the reason we are told this so frequently is that part of the Hospice Game Plan is to pummel clients with choices that are designed to make their lives harder, rather than easier, and hope that some of their clients sign off for this reason...thus keeping their costs down.
I'm sure I'll have more to add to this particular episode in my mother's and my adventure with Hospice. I will label them as "parts" of the "Oxylated" story.
Mmmm, mmmm, mmmm. Lots to think about.
I'm going to write yet another short post...
So, this morning the Hospice Nurse Team Leader called me...
...to discuss "the best system" for Mom and me involving Mom's use of oxygen. I told her that I believe I've already discovered the best system but told her to go ahead and hit me with her best shot.
Her major concern was a shocker. She told me that the way we're using oxygen (the way we've been using it for some years, in fact) "is not covered by Medicare"; specifically, the number of E tanks we use per week. Just so you know, my mother is on Medicare/TriCare for Life. This new information about lack of coverage came as a surprise to me because the way we are now using oxygen is the way we've been using it for some years and we've never gotten a bill. She told me that the company supplying us with our oxygen has been "eating the extra cost". I responded with surprise and mentioned that if they've been eating the extra cost, they've been doing this for some time, at least a couple of years if not more, and that doesn't sound right. She agreed and will look into it.
Here's the how and why regarding my mother's oxygen use:
- Her prescription is for 2-4/lpm Continuous 24 hours per day. It's been prescribed like this for several years.
- We have one concentrator in the bedroom that she uses when she sleeps (12-14 hours a day or more).
- When she is up she is hooked to E tanks I follow her around with the mobile caddy or slip them into the back of her wheelchair in a caddy which hangs from the back of the chair. At present, at 3/lpm (which may go down or may go up, who knows), we go through about 3 tanks a day when she's up.
- I nixed the idea of a concentrator in the living room for the following reasons:
- It is much easier to contain the oxygen delivery cord with mobile oxygen than with concentrator oxygen. This is important because she is oblivious to the cord and I have tripped over the cord on occasion. For us, a concentrator delivery cord is not only an accident waiting to happen, it's an accident that has already happened, more than once.
- The heat factor from an extra concentrator is enormous. This isn't a problem in winter; for instance, almost all of the heat in my mother's bedroom is delivered from the concentrator and, in the winter, my mother sleeps warm. However, in the summer it is an acute problem since we do not have central air conditioning. We have a room air conditioner for the front of the house and a portable evaporative cooler for the back of the house. When my mother is up she is heat sensitive. In the summer in her bedroom she is heat sensitive. Ameliorating the heat in her bedroom during the summer is challenging enough; having to work around the extra heat in the front rooms would probably be impossible.
- While it would seem, considering how little my mother actually moves, that a living room concentrator wouldn't be much of a problem, again, she does move from place to place on occasion every day. During these moves I would be spending some moments transferring hook-ups and securing the concentrator cord, which I don't have to do, right now. Sounds like a small thing but, when your days are largely composed of "small thing" chores, the ability to do away with a small chore here and there is reason for relief.
- The Hospice Nurse suggested a liquid oxygen tank in the living room. Although some months ago I researched the possibility of liquid oxygen with the oxygen company owner/manager, primarily because I thought it would allow us to get rid of all the tanks we use, after a long discussion which covered the possibility of oxygen burns from leaking liquid oxygen and the volatility of the product, I decided we were better off changing out tanks than risking me being injured and unable to serve my mother well for days and possibly even weeks. As well, I don't have medical insurance. All we need is for me to suffer a liquid oxygen burn, with or without complications.
The Hospice Nurse promised she would look into this further and get back to me. She agreed that it is hard to believe that a company would willingly go into the red for as long as this company is claiming they've been doing providing as much oxygen to a client as my mother uses in the manner in which it is delivered.
Although I forgot to mention this to the Hospice Nurse Team Leader, it has come to my attention within the last few days that Hospice, in a roundabout way through one's insurance provider(s), covers only prescriptions that are directly related to the client's reason for terminality, covering these fully. Although this means that only three of Mom's prescriptions, the inhaler meds, the oxygen and the Protonix (which will be changed to Prilosec) will be covered by Hospice, this isn't a problem for us since, with doctor's prescriptions, which the doctor is willing to write, Mom's insurance picks up the rest except for the minimal co-pays required by Medicare/TriCare for Life, and we can have these prescriptions filled at the pharmacy of our choice (Hospice works through specific pharmacies, some of which are mail pharmacies). Thus, if, through Hospice, the way Mom uses oxygen is not covered, it makes sense to me that, since it was covered before Hospice through Medicare/TriCare (as, I'm assuming that the information that it wasn't fully covered is not correct), Hospice can declassify the oxygen as a terminality med, reclassify it as an Emphysema/COPD med (its previous classification) and it will be fully covered, as before (assuming that it was fully covered before).
Protocol. That's the alternate name for the Hospice Rx Medication Game. If you don't want to be rear-ended by Hospice, you need to become proficient in Protocol.
It's almost 1130, Mom's 12-hour-sleep-mark. Time to check the dew point...ah, 34 degrees, okay, nominally, for evaporative cooler usage...and awaken the Mom.
Mom awoke, this morning (yes, she actually awoke in the technical morning)...
...with a sore throat sounding like a frog, so I made an executive decision. I decided, without the advice of physicians, to administer a course of antibiotics that I refilled, just in case, a couple of weeks ago while she was suffering from her second "virus, not an infection" at the rehab facility. I've had the script for this refill since the end of February, when Mom picked up the flu from me and her PCP in Mesa prescribed two courses of it back to back to keep her from developing pneumonia. He included a third refill. Since, on hospice, he is no longer Mom's doctor but he was her oblique doctor while she was at the facility, I ran the refill through the pharmacy, thinking, at the time, that if I determined, in the face of the facility's refusal to administer antibiotics, she could be helped by them, I'd administer them on the sly. I never did this at the facility, as she recovered from both "viruses, not infections"...at least, she seemed to. Today, though, I decided I'd had enough. Maybe, I considered, her sudden susceptibility to colds is a part of her cancerous decline. Maybe, though, it isn't. With the evidence of the sore throat I decided that it was time to find out...something...maybe I won't know what for a couple of days. So, I started the antibiotics today. Funny thing. Within 12 hours she was standing from her various chairs, including her wheelchair, which is a notoriously difficult stand for her, with an ease I haven't witnessed in some weeks. She was picking her feet up to move and turn herself without thinking about it, which she's only been doing with hesitation and much reminding since she began rehab. She's standing straight with ease and remaining standing without a problem. She still has her cold, of course. I didn't expect the antibiotics to whisk that away. But, I swear, something else, "[not] a virus, an infection", has probably been having a heyday in her body for some time, now. I suspect it probably sneaked in right after (or, possibly, during) her oral Levaquin course following the hospital administered IV antibiotics, which was administered by the "respite" care place she was in for five days and was given without thought to the timing of her iron supplements, even though I brought the hazards of doing so to the attention of the medication administrators twice.
I could, of course, be wrong about everything and maybe she'll just keep getting "colds" every week and a half, now, until she dies. As well, perhaps I'm setting her up for a later episode of antibiotic resistance. But, you know, you pays yer money and you takes yer chances. And, anyway, this course is obviously doing her some good. I'm hoping to continue to report over the rest of the five day course that this chance I'm taking with her is the chance that needed to be taken.
I'm still suffering from my cold. Today has been the worst day, yet. I even took a four hour nap (which pleased Mom, since she also got a four hour nap) and arose as exhausted as I was when I laid down. So, I'm not going to report much more, right now...I'm headed for bed. I've unplugged the phone so I can sleep in tomorrow. I told Mom of my intention and she responded giddily: "Oh, good! I think I'll do that, too! You can never get too much rest when you've got a cold, you know!" Today has proved to me she's right about that.
Oh, before I forget, I want to report that the ramps work well with a Mom-full wheelchair. I had no qualms about the outside ramp, as it describes a gentle angle. The one inside into the living room, though, had me freaked since, of necessity, it is short and steep. We used it today and were successful on the second try. It's not easy and, no doubt, I'll be developing super strong arms as shoulders using it, but I can negotiate it and it certainly won't hurt me to strengthen those parts of my body. Yes, I'm careful about my back. I may enlist MPNP to design a second one with a slightly less steep angle, although, frankly, the layout of our living room probably won't allow for something as gentle as the outside ramp. So far, we've only used the indoor ramp once, it probably wasn't necessary since Mom has been taking the steps since she arrived home and probably could have taken them tonight with even more ease than in the last few days, but I was itching to see if it would work for us. It did.
This is it.
Rough Tuesday morning...
...although as the day aged it mellowed. I won't go into it now; I'm too tired and I've got a 0900 appointment tomorrow to check out some charity wheelchairs and walkers. I've decided to stop fooling around with commercial companies that try to pass off defective equipment as functioning equipment in order to thin their malfunctioning inventories and have Hospice/Medicare pay for the privilege. I've found this great equipment guy through the local branch of a national charity that has a marvelous storeroom, loves to talk equipment, will tinker with his stuff in order to try to come up with what "you" need and is congenially hilarious, to boot.
Since my mother's care has ratcheted up yet another few notches and I'm not sure when I'll get an adequate block of time to even partially restore my files to my Mac, today I decided to download an FTP client on this PC, today, and have begun filling in the missing test results. Just shaking my head on this one. There's no such thing as catching up when you're a caregiver. Why even bother to pretend that there is?
The Hospice physician to whom we've been assigned showed up today. I'm fairly impressed with her and Hospice's light touch medical policies. There are several things I want to mention that I've learned, though, partly through the doctor's visit and partly through the nurses visit, so that none of this will come as a surprise to anyone who is considering Hospice care for a relative and might stumble across this site. Some of those items, posted as reminders to me, are:
- Hospice and The Dying Game, including a sub-item about what happens if you don't die on time;
- Prescription protocol, especially (but not exclusively) if the prescription isn't related to the disease that qualifies the client for Hospice;
- The role of the physician in Hospice constrasted with the role of the RN (or FPN or whatever one is assigned; we still haven't met ours, yet);
- What I'm learning about the best approaches to utilizing Hospice services.
I have got to get to bed. Guess I'd better set the alarm for the morning. Ai, yi, yi. I'm hoping for a quiet day, here shortly. On the very bright side, the monsoon rains have begun. We had a wonderful one this afternoon.
Continuing from the Immediately Previous Post
Mom's first significant movement at home + Mom's first nap at home + Mom's first dinner at home
When the wheelchair transport van carrying Mom and I (in our truck) arrived home, the Hospice Intake Nurse pulled into our driveway at the same time, closely followed by the Hospice Social Worker. I was grateful that I'd insisted that Mom do a bathroom run at the facility just prior to leaving. The outdoor ramp worked spectacularly. I wheeled Mom to our dinette table. She transferred herself easily from the wheel chair to the table chair. This, however, was not her "first significant movement". After a dual, thorough interview of a few hours, in which Mom fully participated, I decided it was time to direct Mom into the bathroom, change her underwear and maybe put her in more comfortable, cooler clothes. She was also hungry. The facility had served her lunch (her favorite, ham) about five minutes before her scheduled pick-up. When the van arrived, one of the CNAs whisked away Mom's lunch tray before Mom had been able to take a bite.
I pulled the wheelchair right up to her seat at the table and asked if she wanted me to roll her to the bathroom or if she wanted to try to walk it. She glared at me and said, "I'm perfectly capable of walking to the bathroom, thank you." Without a walker (which had been picked up for replacement by our equipment company during the Hospice dual interview, see here for details) and a gait belt, which hasn't arrived and from where I'm not sure will be coming, I was a little nervous but determined to let her do what she could, following her closely with the wheelchair. I am pleased to report that she made it, a bit more slowly and with somewhat more effort than previous to the evening of 5/15/08 (I realized last night, by the way, that I've been misrepresenting that date as "the evening of 5/18/08" in some previous posts), through the dinette and kitchen in her usual manner, passing her hands from this steadying dining chair or that steadying counter and relying on one of my arms for constant support, before her legs gave out and she decided to sit in the wheelchair. Once in the bathroom, she transferred herself from the wheelchair to the toilet in her previously usual manner without any difficulty. She also stood well and sturdily for changing and transferred back to the wheelchair as though we were simply having a "Half Wheel Chair Day".
After eating a hearty lunch, through which she exclaimed frequently, "This is the best food I've had in a long time," and watching a couple of her Animal Planet programs from her chair perch in the dinette, during which she was delightfully chatty, she plunged into an obvious fade and announced, around 1700, that she was ready for a nap. She made sure that I would awaken her "later". I told her I wouldn't bother her until "about nine", if she was sleeping soundly. She agreed to this. I didn't ask her if she wanted to try to walk into the bedroom, she didn't look up to it. I wheeled her in and she accepted this.
I kept a close eye on her while she slept. About halfway through her nap I noticed she had pulled herself onto her elbows, sort of face down, although the side of her face was resting on a pillow. I touched her forearms. They were as solid as bricks. I realized she wasn't yet relaxing but didn't awaken her at that time. A little before 2100 I decided it was time to arouse her. She wasn't particularly keen to awaken. It took me about a half hour to coax her into a sitting position on the edge of the bed. I finally bribed her with an all over body rub while she took her breathing treatment. As we were preparing everything for her treatment I asked her if she was hungry.
"Not very," she said.
"In that case," I suggested, "why don't we put off the pizza dinner and I'll make you some toast and ginger tea, we'll set you up in here in the wheelchair with the TV table, you can eat and we can chat?"
She nodded, groggily and said, "Will that toast be with jelly?"
"Of course, if that's what you want."
"All we have is cherry preserves. Is that all right?"
"You must have been reading my mind," she grinned.
By the time she finished her breathing treatment and I completed her body rub she was ready to hit the bathroom. I continued my policy of not pushing anything yesterday and she didn't resist being wheeled in and out, although she performed very well during transfers.
The entire family settled into her bedroom, she ate, drank all her tea and we chatted, I prompted us to say "Rabbit, rabbit" at the stroke of midnight ("We certainly need to do that this month," she said, "I'll bet we forgot it last month,"; we had) and played with the cats until 0030 this morning. At that point she looked at her clock and said, "My goodness, it's way past my bedtime!"
While watching her torturous nap style, yesterday, I remembered that, early in her rehab facility stay, noticing that she preferred her upper body slightly elevated during sleep, I'd purchased a low wedge for the top half of her bed. I retrieved it, set it up on the bed, she settled right down and she's sleeping like a satisfied Ancient One this morning. I plan to rouse her around 1100 this morning if she isn't up before then. I promised her ham steak for breakfast.
I have no way of knowing how much of her previous mobility she'll recover, but she's recovered enough, already, that even if she recovers no more we'll be fine. In addition, it seems I was right in guessing that being home would motivate her previous habits of movement and encourage her to use her muscles. Her performance yesterday was so much better than it has ever been at the facility, even as her first walk wasn't completed. The woman is nothing if not determined...and happy to be home, I'm sure. Actually, I asked her, last night, if she was pleased to be home, remembering how much she enjoyed her facility "vacation".
She smiled beatifically. "It's as though I never left," she said. "I'm planning on staying home, now."
I'm planning on this, too.
Think I'll putter around the kitchen a bit, set up breakfast things, and report on the equipment situation and the Hospice interview...
The Ancient One is home...
...and all is, again, right with our household. The cats are relaxed. The Mom is relaxed. I'm relaxed. It took awhile for all of us to make it here, but we're here and the problems encountered on our way seem insignificant compared to the composure in which we're now embraced.
I'm bushed and am heading for bed shortly, but wanted to tick off a few reminders to myself to write about:
- Mom's first significant movement at home;
- the lengthy Hospice interview today;
- Mom's first nap at home;
- Mom's first dinner at home, which was nothing like what we imagined it would be but was perfect, considering;
- the resolution to the equipment problems we're having, which is ongoing.
Oh, one more thing.
Over the last few days I've become acquainted with the other two advocating relatives of two of the facility clients. I find it interesting that all of us are acutely involved with the medical industry: Me, avocationally as my mother's long time caregiver, although both of the other advocates has asked me if I have ever been employed in the medical industry because of my knowledge of and ability to discuss my mother's care and conditions; The wife of a resident as a retired medical insurance manager; The son of a resident as an active pharmacist (whose mother, the client, is also a retired pharmacist). Of the 34 residents on my mother's floor and all of the other residents in the facility (which serves long term care residents as well as short term rehab/recover clients), only the three of us are active, almost-always-there advocates for our relatives. All of us, as well, have had significant problems with the facility, and, as it turns out (as we've discovered in informal meetings with one another) with the hospital prior to facility "interment". Speaking with each other when we can has confirmed, for each of us, that we are not imagining the problems we find ourselves negotiating.
We found one another simply by noticing the others' ubiquitous presence.
Just wanted to mention this.
To the shower.
Mom returns home, today.
I've been reminding her so frequently of "our" return home that, of her own accord, yesterday, she acknowledged that her stay at the facility is coming to an end. "This has been a wonderful vacation," she said. During her lunch, which was typical facility/diner (MPNP and I decided that "diner" is the perfect description of this food and probably why my mother and others of her generation like it so much) food, nothing special or different than what she's been eating there, she talked about how much she enjoyed her meal, how much she's enjoyed all the meals she's been served and spontaneously mentioned, "I must send my compliments to the chef." I will see to it that this is done. I mean, the facility food may not be to my taste, but it has been to Mom's. She has been so thrilled with it that, for the most part (except for the hot cereal at breakfast), she's eaten every bite, including eating her butter with a spoon straight right out of the tiny plastic crocks in which is is packaged.
I am so excited about her return that I'm rather like a kid on Christmas morning. I awoke at 0330 this morning, full of delicious anticipation. Although, for Mom, coming home will be like the end of a vacation, for me it will be like the beginning of one: I will no longer have to live in two places at once. What a relief!
Her return is not completely trouble free. Our medical supply company, who has been working with Hospice, delivered a load of D(urable) M(edical) E(quipment) on Friday. Over the weekend I've discovered that they failed miserably. The walker is defective and cannot be adjusted to Mom's height. The bedside roll-under-the-bed table (which we'll actually be using in the living room) is so unstable that with only slight weight on the table top it angles to the point of potentially dumping whatever is sitting on it. As well, It cannot be securely adjusted: It creeps up. Two other pieces we simply won't be able to use even though I have no reason to believe they are defective. I had thought that we might be able to use the frame of the bedside commode around our toilet, but it doesn't fit with the toilet riser we already have and which is comfortable for my mother and necessary, as well. The bedside rails, as I think I mentioned, are so long that, even completely collapsed, they end at a point that will require my mother to sleep halfway down her bed in order for her to utilize them appropriately. The only piece of equipment I haven't tried is the nebulizer machine. We'll find out if that works today.
I've also discovered that Mom probably needs a wheelchair made for a child in order to suit her knee-to-floor measurement and be appropriate for our narrow halls and doorways. This shouldn't be a problem. I'll be continuing to scout charity organizations for such a chair.
My irritation about all this, though, is minor. I'm confident that, even without the equipment which could have made our life a bit easier, in the meantime, while Mom is resettling and I'm looking for alternative equipment, we'll be fine. We're good at adapting and we know how to use this house to our advantage.
I've also made an important decision: After these five and a half weeks of various types of facility care I will not be taking advantage, again, of Hospice offered respite, even if Mom lives long enough for me to again qualify (which I suspect she will). I'm sure it is useful for some, maybe even for many, but my involvement in my mother's life and my insistence on her getting high quality physical and emotional care means that "respite" stays make my life harder rather than easier.
Still much to do. It will be a busy morning of phone calls and packing Mom out at the facility. The Hospice Nurse is due to arrive for a visit at home a bit later than we'll be arriving. Since we won't have a decent walker until tomorrow, probably, I imagine that today will be a wheelchair day and I'll probably be finding out how well the ramps MPNP built work with about 160 pounds seated in a wheelchair. There are a few tweaks to the house I forgot to perform. I'll do those once Mom is "on site". I believe I'll also be needing to pick up at least one and possibly two medications we're missing at the pharmacy, so I'll be quickly finding out if I can still confidently leave Mom alone when she is asleep. Still and all, I expect today to suddenly turn easy once Mom is home. The cats will be ecstatic. So will I. In addition, we've actually got a "new" Bette Davis movie rental to watch this evening. Mom has decided she wants pizza for her first meal home. It'll be as though she never left.
Night before last I, yet again, had to instruct the Evening Floor Nurse on duty about the correct prescription type of iron my mother is supposed to be getting: He attempted to not only give her the wrong type but the wrong dosage. When I noticed it I told him where he could find the correct type. This, despite the fact that her med instructions clearly read "Niferex-150 Forte" and almost all her meds are packaged in flat cards with burst bubbles specifically for her and filed under her room and bed number.
Last night the Evening Floor Nurse on duty discovered that Mom's Niferex-150 Forte was missing from Mom's filed meds and was nowhere else in the med cabinet, so Mom didn't get any iron. The nurse assured me that she would reorder that med so Mom would receive it in the morning.
Yesterday when I arrived at the facility between noon and 1215 I couldn't find Mom. She'd already had her OT and she wasn't in her room. A CNA found her in the Arizona Room/Resident's Lounge in front of a Big Screen TV watching what looked like an episode of John Jake's North/South, I think that's what it's called. She was deep into the episode. From about three feet away I asked her if she wanted to continue watching the movie until lunch was served. She said yes. I noticed, casually, that she was breathing with her mouth open but she often does this so I didn't think anything of it. I returned to her room, let everyone know I'd found her and was pleased that she was doing something besides sitting in front of her window. Lunch was served about 20 minutes later. I returned to the Arizona Room to retrieve Mom. It was then, when I was practically on top of her in order to wheel her to her room, that I noticed she was lightly gasping. I checked the oxygen tank. It was empty. Once I returned Mom to her room I reported the oxygen problem to the Day Floor Nurse, as well as attaching Mom to her concentrator. I also removed the tank from the tank caddy on the back of Mom's wheelchair, removed the regulator, placed it on the vanity, took the tank out of the room so it could not be reconnected, took the tank to the main nurses station, asked a nurse, there, to return it to the oxygen storage room. The nurse did what I asked, although she scolded me for carrying the tank around and not following protocol, which apparently involves signalling (with the call button) a nurse or CNA and having them return the tank. Another person, not sure of her professional identity, sitting at the main nurse's station, joined in the scolding and cited facility protocol involving liability if a tank should be dropped and explode. I acknowledged the protocol and countered that if I could be sure that Mom would not have been reconnected to an empty tank, which has happened before, I would have followed protocol and left the tank in the room to be retrieved, but I could not be sure of this. When I returned to the room told the floor nurse that Mom should no longer be put on tank oxygen or be disconnected from her concentrator, as this problem of Mom languishing on an empty tank, even in therapy, has happened before. The Day Floor Nurse scolded me, telling me that it was "cruel" that I should confine Mom to her room if she "wanted" to go someplace else. I relented but added that I was relenting only if she, the nurse, could "guarantee" that my mother would not, again, within the next two days (48 hours) before Mom's release, be connected to an empty tank, and if she would see to it that the problem was relayed to her relief staff. She responded that she could not "guarantee" that this would happen but, in essence, she would do her best.
Then, I took Mom into the bathroom to change out her brief. I discovered that not only had she leaked through to her slacks but had begun to leak through to the wheel chair pad on which she was sitting. She had also developed rather large (five inches by two inches, approximately) red spot on her left thigh where her briefs had settled because they hadn't been securely tightened up into her thigh creases. While she was on the toilet, as well, she began, with some difficulty, to have a bowel movement. Earlier during my visit I had asked the Day Floor Nurse to please check the BM records to see how long it had been since my mother had moved her bowels, because I hadn't noticed that she'd had one for a few days. She said she would. At the point at which my mother began to strain during her bowel movement, I reminded the Day Floor Nurse of this request and reported the difficult bowel movement to her. She told me that, yes, records are kept, as I was aware, but they are kept in the CNA reports and she would have to access these. As well, she said, she would give my mother a half dose of Milk of Magnesia, with which I agreed. When I returned to the bathroom my mother was still straining, although she'd eliminated a fair amount. I insisted on wiping her, even though she felt she was not "done". I noticed some minor bloody spotting on the three wipes I used. I returned to the nurse, reported the spotting and requested a full dose of Milk of Magnesia, which I saw to it was chased with a full 8 ounces of water. I also directed my mother to stop straining, directed her to get up from the toilet, cleaned her thoroughly front and back, slathered barrier cream on all red areas, briefed her, dressed her and returned her to her chair.
She ate lunch zestily without incident.
While Mom was eating I approached two of the three CNAs on the floor, reported the dirty brief and empty oxygen tank problems and launched into a somewhat emotional litany as follows: I told both that I was talking to them because it is my policy not to go behind people's backs when problems occur. I "get it", I said, about the facility being understaffed and the staff being overworked. This is why I've been at the facility so much; in order to pitch in and make sure that my mother gets the best care she can. However, I said, in these last two days I also must make sure our home is prepared for Mom's arrival and won't be able to be at the facility much. Mom, I explained, beginning to tear up, had only two days (48 hours) left at the facility. I was not interested in taking her home constipated, with urine rash and breathing problems because of lack of oxygen. By this time I was beginning to tear up uncontrollably. Please, I said, take good care of my mother in my absence. I told them I'd be back around dinner time.
When I returned to Mom she polished off her lunch. I monitored her liquid intake with some difficulty, but successfully (I got a little over 16 ounces down her before it became obvious that she would take no more. I asked her if she wanted to take a nap. She did. I put her in bed and set her up for sleeping.
I left soon after to return home to clean and take a nap. At this point I want to note that although I'd gotten to bed early enough the night before, I awoke at 0130 yesterday morning with diarrhea, which continued, every 15 minutes to half hour, until 0530, which is why I was up writing a post so early yesterday. Thus, by this time, I was severely sleep deprived. Thus, it took me awhile, during cleaning and moving things around at home, to even think of countering the very intimidating response about my "cruelty" lobbed at me by the Day Floor nurse. Suddenly, as I was cleaning in the afternoon before finally taking a two hour nap between 1500 and 1700, I realized, wait a minute: Which is more cruel? To "keep" Mom in her room connected to the oxygen she needs, when, frankly, it doesn't make any difference to her if she is in or out of her room and I am sure that the idea to go to the Arizona Room was not her idea (although, in principal, her being there was all right with me and she did enjoy the excursion and the movie), or to get her out of the room without oxygen (which I suspect ran out sometime during therapy, as these people aren't particularly keen on checking oxygen tanks, either) and allow her to gasp for some hours through an "enjoyable" excursion?
I haven't had a chance to talk, again, with the Day Floor Nurse, but I will, today. I am somewhat more rested.
My schedule at the facility will be pretty much the same as it was yesterday. I will be reporting, here, any incidents of lackadaisical care that I discover today. I hope there will be none. I also hope that the iron that the Evening Floor Nurse promised to order has arrived and Mom will be getting her prescribed iron supplement.
Just the facts, m'am.
I am, now, seriously considering, if not exactly legal action, contacting the corporate office, cataloging all my notes and posts on lackadaisical care, and sending them out. Although I am conflicted about this because I actually don't want to waste energy fighting a fight on a battleground which we will soon be leaving, anyway, at the same time I want someone in authority to at least be aware of what has been going on and what could have further gone on with my mother if I had not been at the facility as much as I have been. Energy, energy, where shall I spend thee?
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson