A Long, Slow Downhill Roll...
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- 1,529
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- Lost a loved one
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- 06/2016
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Updates and a true confession today.
My mom was Dx’d with Spinal Stenosis and is in an unbelievably lovely rehab facility at the moment, gratis Medicare. She will likely have surgery in a few weeks then more rehab. I am sort of envious of this facility. It’s called Aurora and it looks and acts like a hotel.
I got a friend in a few hours a day for cash at lunchtime for Brian, no more worries about him being on his own all day.he still can be, at this point I just don’t like it. We also have loaner and purchase of power chair in the works. Not only that, but we are installing a wheelchair type lift on our side steps. All of this makes me sad and relieved all at once.
Now the confession: Our housemate came home early from work today not feeling good and I got fearful she had the flu. I had no details, just Brian on the phone saying she came home sick. I got on Virtuwell and answered questions sufficient to grab an online Rx for Tamiflu for my symptom free self after I could not reach his Dr to get Tamiflu.
Well, in the end his Dr called back and said sure, does not hurt to have Tamiflu if he was exposed so he would prescribe, but to save it if housemate did not actually have the flu. By the time I came home and saw our housemate she was up eating dinner, said she had no aches or fever and was confident she just has another bacterial sinus infection.
SO, my life as a CALS has reduced me to lying at Virtuwell to grab Tamiflu for my husband he does not need now. I am saving that Rx though in case he does this season! If I do, I’ll get it from my own Dr.
Yup, my pants are on fire.
My mom was Dx’d with Spinal Stenosis and is in an unbelievably lovely rehab facility at the moment, gratis Medicare. She will likely have surgery in a few weeks then more rehab. I am sort of envious of this facility. It’s called Aurora and it looks and acts like a hotel.
I got a friend in a few hours a day for cash at lunchtime for Brian, no more worries about him being on his own all day.he still can be, at this point I just don’t like it. We also have loaner and purchase of power chair in the works. Not only that, but we are installing a wheelchair type lift on our side steps. All of this makes me sad and relieved all at once.
Now the confession: Our housemate came home early from work today not feeling good and I got fearful she had the flu. I had no details, just Brian on the phone saying she came home sick. I got on Virtuwell and answered questions sufficient to grab an online Rx for Tamiflu for my symptom free self after I could not reach his Dr to get Tamiflu.
Well, in the end his Dr called back and said sure, does not hurt to have Tamiflu if he was exposed so he would prescribe, but to save it if housemate did not actually have the flu. By the time I came home and saw our housemate she was up eating dinner, said she had no aches or fever and was confident she just has another bacterial sinus infection.
SO, my life as a CALS has reduced me to lying at Virtuwell to grab Tamiflu for my husband he does not need now. I am saving that Rx though in case he does this season! If I do, I’ll get it from my own Dr.
Yup, my pants are on fire.
Narrowminded
Extremely helpful member
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- Apr 30, 2016
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- 2,830
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- Lost a loved one
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- 07/2007
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Lenore we are probably all guilty of working the system here and there. You are not alone.
Hugs,
Sue
Hugs,
Sue
- Joined
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- Lost a loved one
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- 06/2016
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The system was definitely not made for a condition identified over a century ago that is fatal without exception and for which there is no effective treatment.
I would have a nice full wallet already if I had a $20 for every medical professional who looked back at me with that unmistakable expression of quiet horror when I said “ALS”.
We walk each minute alongside a monster. I hope this makes me stronger, more compassionate, a better person and not a bitter one. It’s what I am trying for.
I would have a nice full wallet already if I had a $20 for every medical professional who looked back at me with that unmistakable expression of quiet horror when I said “ALS”.
We walk each minute alongside a monster. I hope this makes me stronger, more compassionate, a better person and not a bitter one. It’s what I am trying for.
- Joined
- May 9, 2016
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- 1,529
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- Lost a loved one
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- 06/2016
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I am trying to hold my own here, but right now my mother is being a major challenge. She is furious that apparently the plan in putting her in transitional care is to rehab her back pain and weak leg via PT. No actual surgery was prescribed for her moderate spinal Stenosis. After 21 days, a co pay kicks in at her fancy TCU and her Medicare supplement is not great AND she is broke AND I am so not paying a 150 per day copay on her stay. She needs to apply for Medicaid and probably go to a TCU for a longer stay that accepts that, or maybe ven a Medicaid nursing home for a time.
My mom is going to a Dr this coming Wednesday, bent for leather on the idea of surgery and being “fixed”. Even if that were/is possible it’s a long road back from that at age 82, and Stenosis surgeries are a lengthy recovery in younger, healthier people. She lives alone and honestly, I see signs of mental impairment with her. She was never a particularly kind or warm person, but now she is wildly mean to caregivers, accuses me of “just wanting to dump her in a snake pit nursing home”. She refuses PT and then denies she refused PT. She is angry and confused about very basic things.
We have a care conference tomorrow. She spends so much time being negative and angry when I visit I am not sure I can take it anymore. Then she says how much she was “enjoying” that nice facility.Could have fooled me. In addition to the care conference, I AM looking forward to hearing what the Dr has to actually say next week.
My mom is going to a Dr this coming Wednesday, bent for leather on the idea of surgery and being “fixed”. Even if that were/is possible it’s a long road back from that at age 82, and Stenosis surgeries are a lengthy recovery in younger, healthier people. She lives alone and honestly, I see signs of mental impairment with her. She was never a particularly kind or warm person, but now she is wildly mean to caregivers, accuses me of “just wanting to dump her in a snake pit nursing home”. She refuses PT and then denies she refused PT. She is angry and confused about very basic things.
We have a care conference tomorrow. She spends so much time being negative and angry when I visit I am not sure I can take it anymore. Then she says how much she was “enjoying” that nice facility.Could have fooled me. In addition to the care conference, I AM looking forward to hearing what the Dr has to actually say next week.
Herdaughter
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- 08/2017
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Oh gosh Lenore - I am right there with you. I’m so sorry this is happening. I’ve had to take a huge step back from my mom and I feel awful but I was mentally and physically giving out and that doesn’t help anyone. My own doctor told me that sometimes people need to fail before they are willing to accept a terminal medical diagnosis. In other words, she’ll move (or get in home help) when it gets really bad. Good god - this is awful!
affected
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- lala land
I'm so sorry Lenore - it's like you are being pushed towards a corner isn't it. If you have to choose what you can manage and what you can do, she isn't going to like it, but you shouldn't be pushed into those choices.
I hope the doctors can really lay it on her, but if she is likely to blame you anyway I hope you can curl in a ball like a koala and let it roll right off xxxx
I hope the doctors can really lay it on her, but if she is likely to blame you anyway I hope you can curl in a ball like a koala and let it roll right off xxxx
- Joined
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- 1,529
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- Lost a loved one
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- 06/2016
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Thanks everyone. We have had an upturn in that my mom qualifies for Medicaid and can stay in the same facility for transitional care, no co-pay as long as she is making progress, up to 12 weeks. This gives us some significant breathing room.
I was also assured by our Doctor that basically on his word, Brian will qualify for 24 hours per week of homecare via Medicare. He said he has had zero issues with that in ALS as long as people don’t jump the gun and do it when they still have a lot of functionality. This will be a good back up to the full time person we will eventually hire privately. Right now, our “lunch lady” is working just fine a few hours a day.
I was also assured by our Doctor that basically on his word, Brian will qualify for 24 hours per week of homecare via Medicare. He said he has had zero issues with that in ALS as long as people don’t jump the gun and do it when they still have a lot of functionality. This will be a good back up to the full time person we will eventually hire privately. Right now, our “lunch lady” is working just fine a few hours a day.
soonerwife
Very helpful member
- Joined
- Mar 16, 2016
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- 1,571
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- Lost a loved one
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- 10/2015
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- US
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- OK
- City
- Cleveland
Glad to hear that some things are working out... any victory is a good victory with ALS.
- Joined
- May 9, 2016
- Messages
- 1,529
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- Lost a loved one
- Diagnosis
- 06/2016
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- US
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- MN
- City
- Minneapolis
I swoon these days any time someone else does something. Washing a dish inspires boundless gratitude.
Now after the death and pending replacement of our washer/dryer, the water heater is acting funny....
Now after the death and pending replacement of our washer/dryer, the water heater is acting funny....
Narrowminded
Extremely helpful member
- Joined
- Apr 30, 2016
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- 2,830
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- Lost a loved one
- Diagnosis
- 07/2007
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- City
- Pittsburgh
Lenore, I am so thankful there is some breathing room In regards to your mom.
I’m curious about Brian’s Dr saying he could get Medicare for him 24/7. Medicare doesn’t cover private duty nursing, which that would be. Is he on an advantage plan that has some extra perks? I have spoken with many social workers about Medicare and all of them say no as does the booklet we receive directly from them.
Hugs,
Sue
I’m curious about Brian’s Dr saying he could get Medicare for him 24/7. Medicare doesn’t cover private duty nursing, which that would be. Is he on an advantage plan that has some extra perks? I have spoken with many social workers about Medicare and all of them say no as does the booklet we receive directly from them.
Hugs,
Sue
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