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 Post subject: Am I Back?
PostPosted: Wed Feb 15, 2023 6:30 am 
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Hi everyone. I’ve been off this site since July of last year. My mom was in the hospital for a couple of months since Sept, and then at a rehab facility until one week ago today.

I started noticing issues with her mobility in July. Soon after that, I had to take her almost every day for tests, x-rays, and scans, until her surgery in Sept. Her hip surgery isn’t the reason she’s bedridden. I spent 4 to 6 hours a day in both places, mainly to facilitate her eating and drinking.

Unfortunately, lying in bed for several months created a few problems. It’s been a fortuitous undertaking due to my mom’s inability to walk, and other issues, but I’m trying my best to see it through.

Since she’s been home, I’ve been stretching her and doing various forms of exercise. My ultimate goal is to get her up on her feet again.

I'll also try to once again be active on this site, but it will be tough.


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 Post subject: Re: Am I Back?
PostPosted: Wed Feb 15, 2023 4:53 pm 
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Nice to see you again, Windy. So sorry to read of your mother's health issues. I hope she'll get better again soon. It must all be very hard on you in every way, too, and I have to say I really hugely admire and respect you for the way you look after your mother.

As you may (or may not) have noticed, it's all been very quiet around here since the autumn. Much more than usual, it seems to me. It really would be nice to see someone intelligent chipping in again now and then, but even DD_Ric has been AWOL since September, and one rarely sees any of the more regular users even logging in. But, I completely understand how difficult it must be for you to find the time to come here, so don't worry and just take it as it comes. Hope you're well yourself and finding at least some little time for yourself. That's important.

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 Post subject: Re: Am I Back?
PostPosted: Sun Feb 19, 2023 5:26 am 
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Thanks. It's been really tough since this ordeal started. I'm not sure if I'll be able to participate much for a while. It's quite a lot involved. Being that she can no longer walk, I have to transport her from one location to another to eat, change her clothes, diaper, etc.

The amount of time and energy it takes is flabbergasting. I've been told by several people that I've lost weight since this whole thing started, and that's not a good thing being that I've never been overweight a day in my life. Stress takes a serious toll on the body!


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 Post subject: Re: Am I Back?
PostPosted: Mon Feb 20, 2023 2:25 am 
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Windy wrote:
Thanks. It's been really tough since this ordeal started. I'm not sure if I'll be able to participate much for a while. It's quite a lot involved. Being that she can no longer walk, I have to transport her from one location to another to eat, change her clothes, diaper, etc.

The amount of time and energy it takes is flabbergasting. I've been told by several people that I've lost weight since this whole thing started, and that's not a good thing being that I've never been overweight a day in my life. Stress takes a serious toll on the body!

Don't worry Windy, it's perfectly understandable that you won't have the time to participate much at all for now. And I can well empathise about the time, effort, and stress involved in caring for someone on a very personal level as I need quite a lot of care myself from my wife due to my disabilities, albeit not quite as intensively as you have to provide. Do take care of yourself, physically and mentally, as best you can, you wouldn't be the fist carer to end up seriously ill yourself.

I'm sure everyone here who knows you would wish you well and hope that you'll be OK.

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 Post subject: Re: Am I Back?
PostPosted: Tue Feb 28, 2023 7:51 am 
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I'm sorry to hear about your mother's health struggles and the challenges you've faced in caring for her. It's admirable that you've been so committed to her well-being and are working to get her back on her feet. Remember to take care of yourself as well during this time, and don't hesitate to reach out for support if you need it. It's good to hear that you'll be trying to stay active on this site, but prioritize your and your mother's needs first. Best of luck to both of you.


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 Post subject: Re: Am I Back?
PostPosted: Fri Mar 03, 2023 4:42 am 
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nexter wrote:
Don't worry Windy, it's perfectly understandable that you won't have the time to participate much at all for now. And I can well empathise about the time, effort, and stress involved in caring for someone on a very personal level as I need quite a lot of care myself from my wife due to my disabilities, albeit not quite as intensively as you have to provide. Do take care of yourself, physically and mentally, as best you can, you wouldn't be the fist carer to end up seriously ill yourself.

I'm sure everyone here who knows you would wish you well and hope that you'll be OK.


I'm trying my best to take care of her and myself. Unfortunately, my mom is back in the hospital. I don't know when she'll be discharged. She has colitis, and at the moment she's on a liquid diet and meds to treat it.


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 Post subject: Re: Am I Back?
PostPosted: Fri Mar 03, 2023 4:44 am 
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robertjaxson wrote:
I'm sorry to hear about your mother's health struggles and the challenges you've faced in caring for her. It's admirable that you've been so committed to her well-being and are working to get her back on her feet. Remember to take care of yourself as well during this time, and don't hesitate to reach out for support if you need it. It's good to hear that you'll be trying to stay active on this site, but prioritize your and your mother's needs first. Best of luck to both of you.


Thanks, I'm trying my best.


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 Post subject: Re: Am I Back?
PostPosted: Sat Mar 04, 2023 2:13 am 
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Windy wrote:
nexter wrote:
Don't worry Windy, it's perfectly understandable that you won't have the time to participate much at all for now. And I can well empathise about the time, effort, and stress involved in caring for someone on a very personal level as I need quite a lot of care myself from my wife due to my disabilities, albeit not quite as intensively as you have to provide. Do take care of yourself, physically and mentally, as best you can, you wouldn't be the fist carer to end up seriously ill yourself.

I'm sure everyone here who knows you would wish you well and hope that you'll be OK.


I'm trying my best to take care of her and myself. Unfortunately, my mom is back in the hospital. I don't know when she'll be discharged. She has colitis, and at the moment she's on a liquid diet and meds to treat it.

What a bummer - sorry to read that Windy, and I wish your mother a speedy recovery and you, less stress and worry. Hope things will improve for you both soon.

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 Post subject: Re: Am I Back?
PostPosted: Mon Apr 17, 2023 3:53 am 
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I brought my mom home today from the rehab facility. Unfortunately, this won't decrease my stress. While in the hospital, something went wrong via her IV.

Instead of the IV fluid going into her veins, it went into her arm. She was filled with so much fluid her bicep looked like the Hulk. She weighs under 80 lbs.

Then, later in the rehab facility, the physical therapy person left orders for a brace on her leg to be removed at night and placed back on in the morning. Unfortunately, the instructions were not followed. The leg brace was left on for the whole weekend. As a result, my mom incurred several wounds on her leg.

The only way things will improve, all of the stress gone, or at least lessen, is if my goal to get her weight back up and get her walking again is met.


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 Post subject: Re: Am I Back?
PostPosted: Mon Apr 17, 2023 3:19 pm 
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Holy shit Windy - both those incidents are clearly cases of gross negligence! :( They really should be sued for this. And of course, I'm really sorry to read of both the pain and discomfort it must have caused your mum and the stress and distress it must have caused you. But, alas, this sort of affair doesn't surprise me at all. It's the attitude, 'oh hell, it's just old people, time for them to go away and die anyway', that kind of thing. I've come across it in relation to some older friends and relations who experienced it first hand, especially those living in continental Europe. The worst case yet was that one of them was prescribed a totally inappropriate medication that would have 100% killed him if he'd been daft enough to take it! Fortunately he sued and the quack responsible not only had his license withdrawn but also is facing a criminal prosecution for attempted murder.

This sort of thing is, however, relatively rare here. All the cases that I know of here involved quacks that came from places like Germany, Austria, and eastern Europe.

I'm also very sorry that the stress etc. doesn't end for you. I hope that you'll be successful in getting your mother's weight back up at least to something approaching 'normal' - 5 st. 10 lbs is no kind of weight for any adult. I also wish you every success with getting her a bit mobile again. Both of you deserve every success.

Take care of yourself as well.

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nexter - so, what's next?

Just a volunteer Moderator, not connected to or affiliated with Winstep Software Technologies, and not an official part of customer service though I do try to help when and where I can if my scarce time permits


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 Post subject: Re: Am I Back?
PostPosted: Fri Apr 21, 2023 10:56 pm 
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nexter wrote:
But, alas, this sort of affair doesn't surprise me at all. It's the attitude, 'oh hell, it's just old people, time for them to go away and die anyway', that kind of thing.


You hit the nail on the head! Last year in Oct, several doctors said that my mom wasn't going to make it. They simply wrote her off. If I hadn't been there to advocate for her, their so-called prognosis would have come true.

nexter wrote:
Holy shit Windy - both those incidents are clearly cases of gross negligence! :( They really should be sued for this.


I am considering litigation against one of the rehab facilities. In particular, the one that sent my mom home in Feb with a very large severe bedsore, and 4 serious infections that ultimately led to her bleeding again and being admitted to the hospital. It took more than a month of antibiotics to rid her of them.

Unbelievably, they sent my mom a huge bill that I refuse to pay. They pulled a fast one and kept her past the limit so that it kicked into self-pay and kept her there for several weeks at $365 per day. Medicare pays up to a certain amount of days, and she was supposed to be billed $10 per day until those days run out, and then discharge her.

I feel seriously betrayed because the person in charge of that at the facility appeared to be in my corner and was doing everything they could to help. Instead, he has put this issue into a highly stressful situation. Either he was ignorant about how many days there were before it ends, or he flat-out lied.

nexter wrote:
And of course, I'm really sorry to read of both the pain and discomfort it must have caused your mum and the stress and distress it must have caused you.


Thanks!


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 Post subject: Re: Am I Back?
PostPosted: Sun Apr 23, 2023 4:45 pm 
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Windy wrote:
nexter wrote:
But, alas, this sort of affair doesn't surprise me at all. It's the attitude, 'oh hell, it's just old people, time for them to go away and die anyway', that kind of thing.

You hit the nail on the head! Last year in Oct, several doctors said that my mom wasn't going to make it. They simply wrote her off. If I hadn't been there to advocate for her, their so-called prognosis would have come true.

:( Yes, it's all too typical really isn't it, alas. Where in all this kind of thing is the principle of medical empathy left, one wonders. These kind of quacks don't even seem to take into account that - if they're lucky! - they might get old themselves one day and get into the same sort of circumstance where they need medical help and care! :|

And when, in all this, is the world going to wake up and realise that things like health services simply cannot be run for profit!? We've been lucky here that after WWII the government was enlightened enough to create the National Health Service aka NHS, a free public health service, free for everyone at the point of access, financed directly from general taxation which is how it should be. Sadly, since the late 1990s it's become more and more poorly financed and with more and more parts being handed to private contractors so politicians' cronies could make profits, at the expense of the NHS. All the same, except perhaps for Cuba, I think we still have the best - or at least, least bad - health service on the planet.
Windy wrote:
I am considering litigation against one of the rehab facilities. In particular, the one that sent my mom home in Feb with a very large severe bedsore, and 4 serious infections that ultimately led to her bleeding again and being admitted to the hospital. It took more than a month of antibiotics to rid her of them.

Unbelievable and outrageous! Good that you're considering suing.
Windy wrote:
Unbelievably, they sent my mom a huge bill that I refuse to pay. They pulled a fast one and kept her past the limit so that it kicked into self-pay and kept her there for several weeks at $365 per day. Medicare pays up to a certain amount of days, and she was supposed to be billed $10 per day until those days run out, and then discharge her.

I feel seriously betrayed because the person in charge of that at the facility appeared to be in my corner and was doing everything they could to help. Instead, he has put this issue into a highly stressful situation. Either he was ignorant about how many days there were before it ends, or he flat-out lied.

Another outrageous affair! Most likely pressure to keep shtum or lose his job. Terrible, anyway. :(
Windy wrote:
nexter wrote:
And of course, I'm really sorry to read of both the pain and discomfort it must have caused your mum and the stress and distress it must have caused you.

Thanks!

I can't tell you how deeply I really feel for you and your mother Windy. What a horrible, horrible situation. I really hope the stress will lessen soon, and that you'll win loads of deserved compensation. Keep your spirits up and take care.

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 Post subject: Re: Am I Back?
PostPosted: Thu Apr 27, 2023 1:30 pm 
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Unfortunately, I think the main reason my mom has had these problems is evident in society the world over. Most people nowadays don't take pride in their jobs like they used to. I notice it in every job, no matter how big or small.


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 Post subject: Re: Am I Back?
PostPosted: Fri Apr 28, 2023 4:45 pm 
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Windy wrote:
Unfortunately, I think the main reason my mom has had these problems is evident in society the world over. Most people nowadays don't take pride in their jobs like they used to. I notice it in every job, no matter how big or small.

Alas, you do have a point there, Windy. But I don't think it applies to everybody. Fortunately, I'm sure there are still 'some' people who take pride in what they do. For a start, we both know at least one. Jorge takes the greatest pride in his 'baby' and in doing the best work that he can with the Winstep apps, I'm sure we can agree. DesertDwarf, from what I've learned from him, likewise seems to take pride in what he does. (The reason he's been absent here since last September is that he's working on a new project and had to learn two new languages including Python as part of that.) And I think it goes without saying that both you and I take pride in what we do.

Sadly, the world as a whole appears to have lost that particular quality. Ultimately, that comes down to the extreme individualism that we've fallen prey to since the end of WWII and especially from the 1970s onwards. It's the total 'me, myself, and Irene' society and the extreme consumerism as well. Everyone seems to have to have everything, and instantly. That is what people as a whole live for, and everything else doesn't matter any more. Including pride in doing what they do. And sadly, as we both know only too well, that includes even people in supposedly caring professions, even doctors. :(

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 Post subject: Re: Am I Back?
PostPosted: Fri Jun 02, 2023 1:07 pm 
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Well, I’ve been through hell and back the last two weeks. I woke up and went to my mom’s bed to tend to her. When I removed the covers, I felt the heat radiating off her like an overheated engine. I took her temperature and it was 102.5 degrees. I called the on-call nurse line and was told to apply cold compresses which helped to drop her temperature down a bit. The nurse arrived in about an hour. The normal average is 98.6 degrees Fahrenheit (or 37 degrees Celsius).

When she arrived, she checked my mom’s vitals. Her pulse was three times higher than normal and her oxygen level was extremely low. Because of this, she broke out what I call the “death kit.” It’s a kit given to everyone in hospice. The kit has morphine and other drugs that are used when someone is about to expire. It’s used to put the person in comfort so they won’t experience pain, etc. The morphine also slows down their pulse, heart rate, etc, so it was the only way to get her pulse rate back to normal at that time.

After a short time, her vitals became close to normal. For two days, I had to wake up every 3 hours to give her morphine, and every 6 hours for the pain medication. I had to give them to her via a syringe orally as this is the best way to administer the drugs in that situation.

However, for the next two days, the temperature readings (I took several times per hour) showed that her forehead temperature was normal, but her chest and armpit were still close to 102. At this point, the nurse made the decision and said that my mom had 24-48 hours left to live. The other staff members came to the house and agreed. They offered to have a nurse stay from 8 pm to 8 am to give me a break, but I declined. I was afraid that whoever the nurse is, they might double-dose my mom to “help” her passing.

After 2 days, her fever started to break, so I decided to reduce the doses and frequency after noticing as the drugs began to wear off, she became a bit more lucid. The nurse and social worker came and spoke with me for an hour. They explained how they know it’s a tough time for me, and are trying to help me with accepting her passing with dignity. In other words, I should stop trying everything I could to save her life, and just let her pass peacefully with the morphine because she was in a lot of pain.

Instead, I stopped giving my mom morphine, and only the pain medication, but greatly reduced the amount. I asked for a urine test but was denied because they said she was going to pass away. Finally, when it became evident that she wasn't going to pass away in 24-48 hours, they took the sample. It came back that she is positive for a yeast infection, but the doctor said they will not treat it because she was going to pass away soon.

My mom has dementia. She was constantly groaning in pain since last year Oct, (many times yelling out incoherently) even while she was in the hospital and rehab facilities. They were giving her all sorts of drugs. As I noticed her lucidity increase, I stopped her medication. At this point, she was able to swallow again. I had her drink large amounts of fluid. In the morning I had her drink 2 8oz bottles of Boost. Throughout the day she drank about 34oz of water, and another 2 bottles of Boost in the evening.

Now here comes the key part. GRAPHIC ALERT!! Some people might not be able to handle what I’m about to say, but this is something everyone does and is a natural part of life.

Because she became more lucid, she told me that she had to use the bathroom and didn’t want to do it the bed. She has a catheter and wears diapers because she cannot walk. It took me 20 minutes to convince her to go ahead. Minutes later I checked her diaper and I was shocked at what I saw. She was groaning to get everything out, so I helped her by pushing her stomach. I had her lying on her side. As I began pushing she stopped groaning which told me that it was a huge help. What came out of her was enough for at least 3 people. I was surprised that she didn’t bleed again because of the circumference. I’m sure that all of the fluids I gave her, and the fact that I stopped all of her medications made it happen, without bleeding.

It’s now been a week since that happened. Since that incident, I haven’t given her any medication, and she hasn’t let out even a whimper (unless I’m moving her around to exercise or change her). A few days ago I started to introduce a bit of solid food as I was only giving her fluids for a week. She’s back to brushing her teeth and drinking on her own. I’m still feeding her until she gets her full strength back.

She’s been downgraded from visits every day to three times per week. If she stays on the path she headed on and nothing bad happens as it has in the past just when she started to improve, (many infections, fear of falling that severely hurt her physical therapy process) she could recover. She has no terminal illness such as cancer, heart problems, kidney problems, diabetes, etc. Dementia is her only debilitating disease.

BTW, everyone including friends and family thought I was being extremely overly optimistic about saving my mom, and were trying to find ways to politely tell me to accept her passing. I know my mom better than anyone else. I knew she wasn’t ready to pass away. She’s a strong, tough lady!


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