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Rejoice, ye faithful readers, for this post will not be illustrated with pictures!!
I am not going to claim that the following is the sole reason for my long absence. No, that would be dishonest. I was also being lazy. But it certainly is the main reason.
My father is a greedy man. When the illnesses were handed out, he kept jumping up and down, waving his hand and shouting “Here, here!!!!”
High blood pressure, high cholesterol, stroke, heart attack, you name it. And - the worst of them all - diabetes.
He was diagnosed around 40 years ago, something I myself have only been aware of since very recent times. I thought he’d only had it for a few years. Why tell his daughters about something silly like that when all the family doctors since back then failed to really tell him how serious an illness it was. “Have a blood check every couple of months (!), take your pills, bye-bye.”
Looking back I’d say just about the only thing the diabetes did not damage are his eyes. (Not that his eyes are good. But for other reasons than diabetes damage.) He - mysteriously - developed several more illnesses like itching hands (”Must be neurological damages caused by the paints you worked with as a carpenter back in the days before work safety measures.”) and renal insufficiency.
When his kidneys finally had become really bad, doctors in a clinic told him he had to stop taking those diabetes pills because they’d damage the kidneys even further. Yeah, maybe one of the many family doctors during those 40 years should have known about that as well….?
Even with insulin and a good family doctor who sent him off to diabetes and kidney specialists practically from the start, the decline could only be slowed down, not stopped.
So at the end of July the actual story started.
His kidneys finally quit enough for him to have to start dialysis.
Unfortunately, there was also a lot of water in his body. If they have to draw out a lot of fluid during dialysis, this can lead to (thankfully temporary) dementia. Which we didn’t know.
So he came home from his first dialysis, kept asking “What’s up?” and proceeded to try and eat his watch and the pill box. He was not very happy about us calling the ambulance….
The second dialysis had the same result but at least he was already at the hospital then.
At that point no-one could guarantee that he would not return like that from every dialysis.
Quite apart from that complication and the fear that things might stay this way he was, well, old and could hardly walk far enough to complete the round through a small supermarket without feeling close to collapse or getting pain in the legs - or both. I had started doing more and more without actually noticing how much it actually had become. Until then it had never seriously crossed our minds that we might be eligible for help.
A very nice woman working for the social service inside the hospital arranged for an official evaluation of his level of care and for us getting the help of a mobile nursing service at home.
And home they did send him after the third dialysis. Thankfully in good mental shape.
To this day though he has no recollection of his earlier odd behaviour.
When the evaluation finally took place he was found to meet the requirements for the lowest level of care. This qualified him for having the health insurance pay for a mobile nursing service for up to a fixed monthly amount of money. Alternately he could have someone else (like me) do the “nursing” and receive about half the amount they’d pay for a service to distribute as he sees fit. You can also mix these options. If - say - 100 Euros are left over after they paid the nursing service at the end of the month, they’d then transfer 50 Euros to you. I am not sure how anyone expects this to work out if you’re not doing a lot of the work yourself. The cheapest mobile nursing service of the area is situated in our village. Just having them come over each morning to help with washing and dressing would have surpassed the allotted amount of money.
Unrelated to that, the health insurance would pay in full for the nursing service to check his blood sugar levels thrice daily, inject the insulin and fix his meds.
So far, so good.
Instead of the promised three faces he’d have to get used to a total of about twelve mobile nursing service employees (we lost count…) paraded through our house.
I think once in all that time they managed to correctly fill the pill organizer.
One of the male nurses was unfamiliar with his blood sugar tester in the beginning and instead of measuring his morning blood sugar level, called up the saved value from last evening - and injected insulin accordingly. Good thing nothing bad happened….. We only found out about that because I was at home during his next visit and witnessed his confusion at my father - again - having the same blood sugar level as before…..
They did not stick to the fixed times. That did not only mean that we couldn’t dare go shopping in the afternoons, for fear of missing their evening visit, it also meant that - until I learned about it and complained - that some days they’d come two to two and a half hours after breakfast to inject the insulin for lunch. At 11:00 or 11:30 am. Excuse me, did anyone expect him to eat his lunch then? Seriously?
Then one day during dialysis my father’s left foot and ankle kept hurting and itching, tempting him into rubbing the offending foot with the heel of the right one.
Did I mention that decades of improperly treated diabetes lead to a diabetic neuropathy which can totally confuse the way you sense pain in your limbs? You may feel pain, itches or similar which aren’t real, yet if you really hurt yourself you’ll likely not notice. (”Oh, where did that pool of blood come from…?”)
Thus he came home with two huge blood blisters. Of course they soon shed the loosened layers of skin and opened up. Not very long after that the wound got infected despite our best efforts and we sought the help of his diabetes doctor.
It wasn’t possible for me to get him there several times a week, so the doctor suggested that he take a taxi; she’d fill out a form for that.
“Um, but he isn’t eligible for taxi rides…”
*bluster* “Well, if the health insurance has any problems with that, I will gladly send them some photos and ask them to do the wound care themselves!”
“Oh, um, well, ok.”
So it was decided that on dialysis days he’d also go there for rebandaging, thus requiring only a short detour, on the days in between the nursing service would see to that.
The nursing service…. I don’t know if any of them, not even the one lady we really like, has the proper qualifications for wound care. Which in itself is not really a problem if all you do is help wash and dress a person. But if your client requires wound care…. well.
The one who used to be a nurse at a hospital certainly should be qualified. Yet she merrily watched another young lady cutting the old bandage off, peeling the sterile wound dressing out of its wrapping (or maybe she didn’t, as all of the women kept putting leftover dressing aside for the next time…) and cutting it into shape, then slapping it onto the wound and bandaging it. Er, ladies, the disinfectant…. the expensive disinfectant we had to pay for ourselves…. why did you think it was sitting on the cupboard among the bandages and stuff? This was the last straw, and the doctor agreed that from then on I’d take over the wound care at home.
He was also suffering from severe pain in different parts of his left leg and ankle (never the foot), so the doctor tried out some epilepsy medication that is also used to treat the symptoms of neuropathy. After only a few days he slept way too much, developed short term memory problems and started to get tremors in his arms. We threw the pills away and informed the doctor. She then tried an opiate patch which seemed to show better results.
A bit earlier than that we had received a bill from the taxi service for the September detours to the doctor. The taxi service told me that the health insurance had refused to pay for anything but the dialysis trips.
The doctor had forgotten all about her earlier promises and had one of the wound care nurses tell me to send the taxi forms to the health insurance.
I somehow doubted that sending the already once rejected forms to one of the insurance’s offices would get me anywhere, so I started phoning around and got the number of the man in some totally different branch from the one usually taking care of my father who is responsible for the payment of taxi rides.
“Well, no, of course the office would reject those forms.”
“Is there any way to make an exception to the rule, as he really has to get there and I can’t drive him.”
“Yes, of course, but the doctor has to request such an exception beforehand, and I then have to approve it. For how long do you think he will require to see that diabetes specialist?”
“Well, for several months at least, it seems.”
“Ok, I’ll authorize those taxi rides until the end of the year, and then we’ll see. If you could possibly fax those taxi forms and the bill to me…?”
Somehow I think doctors should be aware of those rules. Those simple rules. *headdesk*
Meanwhile despite all our best efforts the wound just kept on growing. We trusted the doctor; she had successfully healed a wound before. Maybe we shouldn’t have, and maybe what happened was inevitable, I don’t know. I am no doctor, and I am no psychic either. But one can’t help but wonder if they treated the wound for too long there, too sure of their eventual success. Especially our usual doctor’s elderly colleague seemed very relaxed concerning the growth rate of the wound.
When by the end of October it had finally reached a length of almost 10 cm and the interested observer could watch a sinew at work she decided to transfer him to a clinic with a department that specializes on diabetes related foot problems and wounds. To me it seemed she immediately lost interest in the care for her patient afterwards. On a Friday she printed out the transfer form and arranged for him to be admitted at the hospital the following Tuesday. Normally he’d have gone there again on Monday (dialysis day), but no. Over the weekend and on Monday wound care was solely my job. During that short additional period the length of the wound started to outgrow the size of the dressings they had prescribed. It was now a good 10 cm in length. On Monday the depth had increased dramatically as well; I could see the sinew for the whole length of the wound.
I also had to provide him with a correct list of the drugs he was taking. Thankfully I had read through the one they had given him at the diabetes doctor’s to take to the hospital. The anti cholesterol medication was listed with double the correct dosis, and two vitamin pills he has to take because of his kidneys had been left out.
The anti epilepsy drug he didn’t tolerate too well was on it. They had also scrawled the opiate patch (which had replaced the anti epilepsy drug after all) on it as an afterthought - leaving out any mention of the dosis.
At the hospital they really did their best for two weeks: cutting away necrotic tissue, putting maggots on the wound, doing extensive examinations of the blood vessels in the leg - and unfortunately finding the problems with the latter inoperable.
So when the wound just kept on growing and the sinew was long since gone as well, they said they had to cut off the foot and do it quickly before they’d only have the option to cut off the leg.
The x-ray showed that at least one foot bone had already started to disintegrate. Their plan was to cut off about half the foot, a bit more or less, depending on what they found going on inside the wound and with the bones during the actual operation. They wanted to leave the heel of the foot - risking that the operation wouldn’t be going far enough and requiring another one - to give him the chance to still hobble around a bit on his own two (well, 1.5) feet. Not the words of people who do amputations lightheartedly, so we trusted their judgement and still do (the photos and x-ray sure helped….).
During the operation fluids drained out of the ankle, forcing them to forget about their plan. They had to amputate the whole foot then.
He was discharged shortly before Christmas. For reasons unknown, my father decided to keep seeing the same diabetes doctor.
To the first check-up he went without me, and later complained that the wound care nurse had seemed totally out of her depth when being confronted with the stump and the bandages. It certainly didn’t help that one nurse cut off (How about unwrapping it to see how it was done…?) the bandages and padding and another one was then supposed to put the new bandages on.
I was none too pleased either, neither with the material they had used and prescribed nor with what I found under the removable cast. The material stuck to the wound and was too thick. The bandage was wrapped around the leg so tightly that even after two days you could still see the depression it had left in the skin and tissue.
By the second visit - to which I drove him - the wound had become infected. The end of the stump was red and so swollen that the stitches seemed to disappear in the skin. And we got the elderly doctor again.
I have no clue if she disinfected her hands before entering the examination room; she certainly put on no gloves before poking around on the stump close to the wound. And the nurse did indeed show a lot of the traits of a headless chicken while dealing with the leg.
The doctor was totally relaxed concerning the stump, what with my father taking antibiotics anyway and these things just taking time, you know. Unfortunately he was not taking any antibiotics, not since leaving the hospital, which was clearly stated in the report they got. Plus, I had heard the talk about having patience before… when she had been talking about the foot. Sooooo I told her that and suggested we’d maybe better consult the clinic.
*icy look* “Well, if that’s what you prefer….”
I called the clinic that same evening and talked to one of the nurses.
She said the way I described the stump I should definitely come over there the next morning and present him to their outpatient bandaging department. If I was just being overly anxious there’d be no harm done, and if it indeed looked like it sounded to her they’d keep him there and take care of him.
Well, that clinic is the leading one here in Germany. Beds are always in high demand. They kept him.
I also asked if we could have waited for a few more days (Daddy was none to happy about having to spend New Year’s at the hospital then.), and their answer was a very definite “No!” coming from all the doctors present in the room.
On a side note, on the last day before I took him to the clinic the mobile nursing service set a personal incompetency record. The former hospital nurse and a young man in training were there. She seriously suggested that my father walk over to the bathroom. Walk. Right. Did you bring Jesus, nurse? Just asking…. Why she had to wash him in the bathroom, when it was way more comfortable for him to be washed in bed I don’t know.
So he got wheeled over. On his sparkling new wheely potty chair. This chair will still feature later on for the real whopper.
That done, she wanted to change the dressing on his stump. It had been agreed that the diabetes doctor and me would be doing that. My father really had to put his figurative foot down to make her desist.
The potty chair. Which he got because he could not use the old, disabled-unfriendly toilet. It is parked beside the bed, and my father puts the emergency call button we got because I am away so often on the seat overnight. He also puts his urine flask and a roll of toilet paper on it. Makes sense, hm?
So next time I was home I found he had had to wheel all across the room to get at his toilet paper which someone had put onto a cupboard far away from both bed and chair. The emergency button was on the same piece of furniture, but with his bad eyes he was unable to see it there among the clutter. The urine flask had been shoved under another piece of furniture. Took me a while to find it. And my eyesight is excellent.
He has been home again since almost two weeks now, and so far the wound looks good. As good as such wounds can look. With his diabetes, bad circulation in the leg and the dialysis it will still be months until the stump is properly healed. If it heals. There are no guarantees yet. But the way it is looking now, chances are pretty good.
We are seeing a different diabetes doctor now, and he immediately criticized the inner layer of my bandage. He’d have used the stuff they use at the hospital. When I told him that I hadn’t been provided with the necessary prescriptions and that I had already bought a better type of sterile compress myself he said he’d write the necessary prescriptions. Which he did. We have the good stuff now. Weeee!
Oh, and today he asked me if I was still ok with doing the daily bandaging in the evenings, or if that was becoming too much for me. A doctor worrying about his patient’s daughter’s level of nursing stress. Hah.
My father has also become a lot more mobile now, as the clinic provided him with a temporary prosthesis. They have found this to assist the healing process.
So things are looking up?