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 Post subject: Re: Am I Back?
PostPosted: Mon Jun 26, 2023 2:05 am 
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Oh holy shit Windy! You really have been to hell and back. :(

First, I must apologise for the very tardy reply. Things have been a bit busier than usual in the forums, and worse, I'm having problems with my connectivity meaning I frequently loose it. The problems stem from a new cable hub (necessitated, alas, by the switch to digital phone lines - i.e. via IP - and gigabit+ broadband!) that won't let me boot with my VPN (inc. Permanent Killswitch), or even to connect after boot. Fortunately, I have found a way around that - boot with the cable to the hub plugged out, temporarily drop Killswitch, then connect the hub again, connect VPN and then re-enable P. Killswitch. But 'peace' does not last, connection drops frequently and I have to start all over again, and sometimes the hub goes dead leaving me without any connectivity or telephone for in some instances quite some time. PITA. Hoping to get it sorted this week at last. But enough of my little problems.

Windy I am absolutely horrified by your tale of woes with the medics - it is truly shocking! (And I don't mean descriptions of natural functions, nothing fazes me in that respect. And I can well empathise with the pain and discomfort the constipation must have caused, and the subsequent relief post-evacuation. I struggle with it myself quite often due to my medication, albeit not as extreme.) This whole tale has had me in tears, to be honest. Those medics should not be in the profession! In fact, I feel sorely tempted to say they should be shot, sorry.

However, I am completely in awe of your actions and determination. You are a truly wonderful human being. And your dear lady mother, so strong, tough, determined and resilient - I really do hope she'll make as full a recovery as possible. It's also excellent she can still brush her teeth herself etc., a sign that the dementia also has not progressed too badly yet. (It can be very slow, or on the other hand, very quick. (With one friend it happened overnight - one day, everything was normal, the next full-blown dementia and he couldn't do anything for himself any more.) It's a good thing you know your mum so well and never gave up on her and let yourself be influenced by anyone.

All strength to you Windy! Always thinking of you both.

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 Post subject: Re: Am I Back?
PostPosted: Sat Jul 15, 2023 5:13 pm 
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Thanks for your concern Nexter. I'm sorry to hear about your connectivity problems. In these times, that’s a major problem. I frequently wonder how I and others functioned without cell phones, computers, etc.

Now for an update on my mom. Unfortunately, she’s run into some problems since my last post. I noticed a bit of difficulty when she was eating, drinking, and brushing her teeth on her own when I last posted.

Since then, she’s been downgraded to 2 days a week instead of 3 visits which are good, but she’s lost almost all of her dexterity, and her wrist is limp. I put braces on both hands to support her wrists during her waking hours and remove them at bedtime. I have to help her hold a cup while she drinks, hold her hand while she brushes her teeth, and I have to feed her because she cannot hold cutlery. Periodically I exercise her arm in hopes of fixing the problem because I noticed that a lot of muscle between her neck and shoulder have severely atrophied. She cannot hold her arm in place, and can barely lift it.

However, if she gets in one of her moods and doesn’t want me to move her arm or manipulate her fingers, she’s almost as strong as I am! I cannot open her hand, or move her arms unless I come close to breaking them! She’s as strong as an ox when she wants to be!

Another issue I’ve been dealing with is her bed sores. Because of her slight frame and being bedridden, it’s very difficult to prevent it. A new one just popped up on her “good hip” a few days ago. The wound team is scheduled to come out in a few more days. I noticed it the day after they left. It had a covering to prevent a wound, but over time, a hole wore into it, and I saw that the skin underneath was gone. I used some items I have and covered them. I called it in and was told that the nurse has to assess it first before the wound team makes an unscheduled visit. He arrived for his scheduled visit the next day and said that the wound team isn’t coming until their scheduled visit.

He removed the covering I put on it and replaced it with something else. I then reinforced it with several special clear plastic coverings that are designed to keep bandages in place and sterile.

So for now, those are the main things I’ve been dealing with concerning my mom. But, my biggest concern is trying to figure out how to increase her weight. It isn’t easy because she isn’t a big eater, and I have to be careful not to make her feel full because she’ll refuse to eat any food for several hours. The only things saving me right now are Boost or Ensure 3x per day. They increase her caloric intake.

I just bought some white bread (because wheat or other bread causes problems with colitis sufferers) and I'll serve it with peanut butter to increase her caloric intake when I give her Boost or Ensure to drink between breakfast and lunch. I don't know if she'll eat it, but I have to try what I can to help resolve her weight issue without causing harm.


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 Post subject: Re: Am I Back?
PostPosted: Sun Jul 16, 2023 9:12 pm 
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Well, my connectivity problems are half resolved by now, it's sort of manageable but giving issues with my VPN when I first connect to the router, though I have found a kludge to get around it. It's all due to this stupid (it really is!) switch of land telephone lines to IP and the new 'super speed' 1Gb+ routers. Only complete morons would move everything to the internet and put all eggs into one basket. If the ISP's network goes down - not unknown to happen! - or worse the whole internet came down while at the same time the whole cell phone system went down, there'd be zero communications! As a species, humans really are far from the brightest candle on the cake! Personally, I managed just fine before cell phones came along and only adopted a very simple one for calls and sms texts only about ten yours ago and sticking with that, rarely needing to use it. And in many ways, life was far better before personal computers came along, too. [/rant] ;)

I'm so sorry to read of your mother's added problems Windy. That really is sad. I can't help wondering if the problems of control of movement in her arm and the atrophy of the muscles could perhaps be due to an unnoticed mini stroke or even several? But OTOH, the strength your mother shows sometimes would seem to speak against that.

Pressure sores are a terrible problem. :( I permanently have them myself, mainly on and around my buttocks and also on the hips, basically due to my being wheelchair dependent nowadays and always sleeping on my sides. Quite frequently, one or two spots open up but the wife takes good care of them and they heal up again. I hope the pressure sore on your mother's hip heals up quickly, but then I'm sure that with your excellent and devoted care it will, Windy.

You're nothing if not persistent, too, Windy, and your efforts sound excellent in trying to keep your mum's calorific intake up. Peanut butter is further beneficial in providing protein and a range of minerals. (It's also given to severely under- and mal-nourished children as well as adults but I'm sure you knew that anyway.)

Anyway, I really wish you every success in all your endeavours with your dear mother, Windy, and I find myself thinking of the two of you daily.

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 Post subject: Re: Am I Back?
PostPosted: Fri Jan 05, 2024 9:35 pm 
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I hope everyone had a Merry Christmas, Happy Hanukkah, and Happy New Year. I haven’t been on for a while due to the chaos that has been going on.

In the bedroom next to mine, part of the ceiling collapsed due to a leaking PVC pipe coming from the AC unit. My brother was there only a couple of days prior but left several days earlier than planned. Being a spare bedroom, I rarely go in there. So unbeknownst to me, it was leaking for at least 10 days. I know this because of what happened one night at about 12.

I heard a crashing sound that appeared to come from that room. I immediately jumped up out of bed while retrieving my firearm, and opened the door within 10 seconds of hearing the sound. The room was very dark. I immediately looked at the window to check for glass. I noticed the blinds were not disturbed and there was no sign of glass or anyone in the room.

Because there isn’t an overhead light in that room, the light switch by the door obviously won’t work. There is only a small lamp on the nightstand by the bed next to the window. So after quickly realizing that no one had broken the window, I immediately went to my mom’s bed and checked her out, then through the house, and then outside to make sure no one was trying to break into the house.

It wasn’t until 10 days after that incident that I started smelling the strong odor of mold. For 4 days I kept wondering where the smell was coming from and my allergies started to give me hell, my chest was hurting, and I felt unwell. I finally opened the door (in daylight) to the spare room and was taken aback when I saw a big hole in the ceiling, the ceiling laying on the bed, the carpet totally soaked, the bed totally soaked, and mold on the wall, the bed, and carpet.

I contacted the AC company but they didn't respond for more than a week. During that time, the mold was getting worse. I had to purchase several bottles of special mold remover, a sprayer, a full-body hazmat suit, goggles, and a respirator to do it myself. It did remove the overpowering odor of the mold, but it was much worse than I imagined. Much of it was hidden behind the bed and furniture several inches high along the baseboard and made its way into my room which was also hidden. Mold hates light!

Eventually, the AC company took responsibility and a remediation team had to come in to get rid of the humidity, (it was so high that the door wouldn't close properly) run a dehumidifier, an air scrubber, and remove part of the ceiling, drywall, insulation, and carpet. That was months ago and both rooms are still in that state. Finally! I was contacted today and someone will be coming on Mon to assess what needs to be done.

Besides all of that, I was bitten by my mom severely. I thought that I was going to lose my finger! Both my vehicles have issues, and a host of other things. One of my vehicles is an old pickup with manual windows. The window on the driver's side fell inside the door, and with my wonderful luck, it rained heavily the next day. I noticed that the dome light was on even though the door was closed and the switch was in the "Off" position. I immediately disconnected the battery to avoid a short, and fire. I had to remove the battery because the battery drained after sitting too long without being started. I've been too busy to put it back after charging it. I might have to charge it again LOL. It’s been a week since I charged the battery.

On a good note, 2 of the 4 wounds on my mom have healed. The wound team credited me for that. They said that they wish more than half of the nurses they train did as well as I have. They gave me the green light to do her advanced wound care after seeing how I treated her wounds. As far as I know, they haven't done that with any of their other clients.

I won’t bother to get into all of the other things that happened since my last post. I’m just trying to hang in there.


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 Post subject: Re: Am I Back?
PostPosted: Thu Jan 18, 2024 5:47 pm 
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Hi Windy, good to see your mother's been improving, you deserve a medal! Sorry to read of the bitten finger, makes one virtually feel that pain.

Also sorry to read about the leak and collapsed ceiling - but at least nobody's got hurt. Hope it's all fixed and forgotten now and no trace of mold remains. Can be dangerous stuff, mold from damp, especially the black variety. Very hard to get rid of.

Sorry about late reply. First I was busy as hell, and the last two weeks almost now I've been battling a cold and a severe bladder chill due to the flat below having gone on holiday and leaving all the bloody windows open, with what for this part of the country are extremely cold conditions. Could bitch-slap that cow for weeks on end! :evil:

Got to rest for now. Keep on hanging in there Windy and best wishes for a happier New Year.

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 Post subject: Re: Am I Back?
PostPosted: Mon Jan 29, 2024 12:37 am 
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Sorry, I took so long to reply. I’ve been extremely busy. I hope that you've gotten over your cold and are better now.

nexter wrote:
Hi Windy, good to see your mother's been improving, you deserve a medal!

Thanks. The nurse, wound team, social worker, and other medical personnel who regularly see my mom all said the same thing.

I was going to work on my vehicles today, (change the oil on one, put the window back in on the other one, and see if the window will work without replacing the plastic window guides) but it began to rain. I might have to replace them to prevent the window from jumping off the track again. Unfortunately, because it's an old truck, the guides are special order. The battery I mentioned in the previous post on that old truck went bad and I had to replace it. Fortunately, it was still under warranty, and I received a new one free of charge. I'm glad I purchased the more expensive version.

The junkyard is going to send a part via mail tomorrow for my other vehicle. It would cost more in gas to get it than the shipping fee, plus wear & tear on the vehicle as it’s about a 2-hour drive one way.

The 2nd phase of repairs to the rooms still hasn’t started! They were supposed to start last week, but the AC company hadn’t contacted the repair company since the estimates were sent to them.

Now for some good news. My mom’s UTI is finally gone. It's been about 5 days since her last pill. I hope it never returns. I was a bit worried it wasn't cured because she destroyed the last one by biting it. She was in one of those unfortunate moods. The doctor prescribed a strong 3-day dose of an antibiotic. It’s been a problem since the day of her surgery 16 months ago. Because she has dementia, a UTI makes her behave erratically, hence the reason she bit me. It appears that the probiotics I began giving her a couple of months ago greatly aided in getting rid of it and keeping it from returning. All the other times she was given an antibiotic, it came back within a few days.


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 Post subject: Re: Am I Back?
PostPosted: Mon Feb 05, 2024 3:15 am 
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What a bummer re: your vehicular situation. But at least you got the replacement battery under warranty.

Hope the room repairs get sorted quickly now - not nice having to wait for that.

Glad your mother's UTI's gone now at last. Very unpleasant business, UTIs. Can even cause dementia-like symptoms when someone affected doesn't even have dementia. :( Anyway, hope it doesn't happen again, the poor good lady surely has been suffering enough.

Sorry to be so tardy and brief, but still busy as hell and very limited time online as still sick with that ghastly chill.

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 Post subject: Re: Am I Back?
PostPosted: Tue Jun 04, 2024 7:51 pm 
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Nexter, I hope by now your illness has passed.

My mom has had her ups and downs. Everything from falling out of the bed and damaging the wound on her hip, severe diarrhea to throwing up 5 nights ago, to not eating her lunch and dinner yesterday, and issues swallowing liquids.

From all of that, at least there's good news. Her wound is about 80% healed, her diarrhea is somewhat better, and she ate breakfast this morning. I hope she eats her lunch and dinner today. Unfortunately, she still has issues swallowing liquids.


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 Post subject: Re: Am I Back?
PostPosted: Thu Jun 06, 2024 4:33 am 
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Thanks Windy, that issue has gone quite a while ago thank goodness.

Hope your mother continues to get better and that you're as well as can be hoped for under the circumstances. Take care.

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 Post subject: Re: Am I Back?
PostPosted: Tue Jun 11, 2024 12:30 am 
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Unfortunately, my suspicions were right. My mom has a UTI again. I also suspect that it happened because several nurses cleaned my mom improperly when she had her issues throwing up, and when a nurse that took over when the regular nurse was not available. She insisted on cleaning my mom. I'll never let her do it again if she comes back.

Since my mom has been in this condition, I've only seen two nurses that I felt did a good job. One was in the hospital, and the other was in the rehab facility after her first stint in the hospital. Almost all of them use the diaper to wipe her, and then wipe in the wrong direction!

When she threw up several times, it took 4 hours before a nurse came.

For the catheter, it fell out around midnight. It took 3 hours before a nurse was available. The nurse that came at 3 am to put in a new catheter tried for 45 mins, but couldn't do it. They had to send a couple of nurses to come at 11 am to do it.

The visiting nurses didn't think that she had a UTI, even after I told them that I thought her urine was too dark. They said it looked fine. I told them to take a sample anyway, and I was proven correct.


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 Post subject: Re: Am I Back?
PostPosted: Thu Jun 13, 2024 4:42 pm 
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Windy wrote:
Unfortunately, my suspicions were right. My mom has a UTI again. I also suspect that it happened because several nurses cleaned my mom improperly when she had her issues throwing up, and when a nurse that took over when the regular nurse was not available. She insisted on cleaning my mom. I'll never let her do it again if she comes back.

Holy crap Windy! Surely that's grounds for a gross negligence/incompetence and compensation claim?
Windy wrote:
Since my mom has been in this condition, I've only seen two nurses that I felt did a good job. One was in the hospital, and the other was in the rehab facility after her first stint in the hospital. Almost all of them use the diaper to wipe her, and then wipe in the wrong direction!

Oh you've got to be kidding! Again, that's total incompetence/negligence.
Windy wrote:
When she threw up several times, it took 4 hours before a nurse came.

For the catheter, it fell out around midnight. It took 3 hours before a nurse was available. The nurse that came at 3 am to put in a new catheter tried for 45 mins, but couldn't do it. They had to send a couple of nurses to come at 11 am to do it.

Bloody hell! A nurse that can't fit a catheter isn't any kind of *nurse*. As far as I'm aware, that would be grounds for suspension at the very least here.
Windy wrote:
The visiting nurses didn't think that she had a UTI, even after I told them that I thought her urine was too dark. They said it looked fine. I told them to take a sample anyway, and I was proven correct.

Bummer! I'm so sorry to learn of your mum's continuing problems and suffering Windy, and your own stress etc. as a result. Further proof - as though that was needed! - that the US health system is the worst in the industrialised world. (Second worst has to be the German one, which is partly based on the US one. The best two AFAIC are the Cuban and the UK ones, although goodness knows the recent UK governments have been doing their best to destroy it.) A UTI is a most unpleasant and painful experience, and I can well empathise.

I really hope things will improve soon for both your mum and yourself Windy.

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 Post subject: Re: Am I Back?
PostPosted: Thu Jul 18, 2024 2:05 am 
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Well, here’s the latest. The UTI turned out to be extremely bad. It wasn’t the type I mentioned but a worse one. The antibiotic that was given to her wouldn’t get rid of it after 10 days, so they had to prescribe a much stronger one.

A few days after that, my mom only ate her breakfast for the next 4 days. Nothing else. I was extremely worried, especially because she began losing weight. She cannot afford to lose even 1 pound. On the 5th day as she ate the 10th spoonful of oatmeal porridge, she had a bout of aspiration that lasted more than 5 mins. So not being able to swallow appeared to make her scared to try to eat or drink again. I wanted to send her to the hospital immediately but didn’t because the wound team was coming the next day to address the wound on her hip that had some issues that needed their expertise that the hospital would not be able to handle.

The reason I sent her to the hospital was a very serious one. It was for them to implant a feeding tube into her stomach as I felt this was the only way she would be able to get sustenance. After she arrived at the hospital I requested an IV for her. They were going to do it anyway. My mom has an issue with getting an IV because of her veins. I told them to get the IV team. They’re used when a nurse has problems locating and/or insertion into a vein. They use an ultrasound machine. Like all the other times at several hospitals, they did not use the machine thinking for some inexplicable reason it wasn’t necessary. And like other places, they turned my mom into a pin cushion. I was not happy! After several jabs and attempts to start the IV, they finally relented and used the machine. They finally said they didn’t use it because she’s contracted and the veins they were trying to use are on the outside of her arm and it’s hard for the machine to pick it up. So they ended up having to use a needle that’s for newborn babies.

Around that time, I spoke with a doctor about the feeding tube. He wasn’t too keen on the idea but agreed to do it. He said he would consult some other doctors. About an hour later he came back with two more doctors. All three of them said, absolutely not! The reason they gave was failure to thrive. I told them that she wanted to eat but couldn’t, and she replied emphatically, NO when I asked her if she wanted to die. Then they said because of her age, and condition, that the surgery would be too much. They also said that she still could aspirate and die, get an infection and that she would not get sufficient nutrients and would have to have an IV along with it. So with that, they deemed her end of life and said they would release her from the hospital in 24 hours.

I didn’t sleep that night. I contacted family and friends to let them know what the situation was and it’s possible this was the end for my mom.

When she came home the next day, I decided that night to give it one last shot. I went to the store and bought a box full of 4oz containers of apple sauce. This was do-or-die. I opened the container, took a spoonful, and put it to her lips. I was shocked when she started eating it. She ended up eating 3 of them with no problem!! Talk about being elated!!

The wound team told me the day before I sent her to the hospital that they thought what caused this to happen was the antibiotic. They saw that my mom looked terrible and asked me what was going on with her. I told them about the UTI and what she was taking. I showed them what she had taken for the past three days. They freaked out! It turned out that they were correct. They told me the following week that some patients hallucinate after taking it. There’s no other explanation because if it were what the doctors thought it was, (end of life), she would never be able to swallow again.

It’s been a few weeks now since that ordeal. I’ve slightly changed her diet and the hospital gave orders not to give her pills to swallow anymore. Because of the diet change and my decision not to give her laxatives, for the first time in a year and a half, she had a normal bowel movement yesterday.

With all that, I still have other things I’ve been dealing with. I just received a check for the bed that was ruined when the ceiling collapsed, but they only gave half of what it’s worth because of depreciation. And I’ll have to buy an adjustable base with no compensation. I didn’t realize that the price I saw on the Internet that I gave them was for the mattress only. I also had to fork out money to have the floor done in the kitchen and the main part of the house.

Both bathroom floors (linoleum) have to be done along with at least one vanity due to the toilet leaking creating mold on the vanity. The other bathroom floor is ruined because the toilet overflowed many times. I'll probably switch to tile. The two bathrooms are another large expense I’m in the process of dealing with.


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 Post subject: Re: Am I Back?
PostPosted: Sat Jul 20, 2024 7:47 pm 
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I'm so sorry to read about all the complications with your mother, Windy, but glad to note that things are improving, and I wish her as full a recovery as possible and wish you well in all your efforts.

That's (one of!) the trouble/s with modern society in an ultra-capitalist, consumerist environment. If you're old and not in perfect health, you should just go away somewhere out of the way and die somewhere quietly instead of being a nuisance! Even over here one sees this more and more, alas.

I'm also sorry to note all your other problems and hope things will settle down soon.

Trying my best to keep up with things on the board - fortunately, it's the quietest time of year at the moment - but constraints on my time are very limiting at present. I'm trying hard to progress with my little 'Online Security & Privacy 101' project, for which there seems to be a greater need than ever and also more interest than ever, both here and on a couple of other boards (private ones), where there is a lot of very active discussion about it.

At the same time, I am of course not just a pretty active privacy and security advocate but also specifically an active Linux and sp. Ubuntu advocate as well as an active advocate for certain privacy and security focussed software. Fortunately, they all overlap and tie together to some extent in some way.

And then there are other things still keeping me busy as well, as well as my health issues. It's all a bit like a juggling act! ;)

Anyway, I hope things will get better really soon for your mum and yourself.

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 Post subject: Re: Am I Back?
PostPosted: Tue Jul 30, 2024 5:00 am 
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Unfortunately, my mom is not doing well. She has been barely able to swallow now for the past 5 days. After the wound team comes in the morning, I'll probably send her to the hospital. They'll be able to get an IV in her so at least she'll get fluids in her system.


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 Post subject: Re: Am I Back?
PostPosted: Tue Jul 30, 2024 4:35 pm 
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Windy wrote:
Unfortunately, my mom is not doing well. She has been barely able to swallow now for the past 5 days. After the wound team comes in the morning, I'll probably send her to the hospital. They'll be able to get an IV in her so at least she'll get fluids in her system.

So sorry your mum's still having issues. I really hope and wish her to get better very soon Windy.

Take care.

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