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ThisPresentMoment
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Happy (late) anniversary, Annie!
ARCG
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- Joined
- Oct 12, 2016
- Messages
- 218
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- Lost a loved one
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- 1/2015
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- TX
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- Houston
So, just have to share. Nurse was here today to check on DH and she said that she thought ALS was the worst of all diseases and it was just torture. She said this right in front of my DH. I am well aware of how horrible this is, living it every hour of every day and, don't get me wrong, this nurse is very compassionate and helpful, but this is so very hard to accept, even the medical professionals offer no hope. I feel so alone.
- Joined
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You're right, Annie, there was no reason for the nurse to salt the wound, and I would tell her so, as it may save someone else that feeling in the future.
You are not alone -- you have your kids, your friends, other family and us! When the darkness closes in, don't hesitate to start typing whenever you need us.
As for lack of hope, no doubt that the hundreds of solutions P/CALS buy, kludge and borrow every day, and news of incremental research breakthroughs, have to stand in for near-term expectations of a greatly-changed prognosis.
Maybe whatever happiness and peace we find under the hanging sword are all the more precious for our having made them ourselves under the most difficult of circumstances. Certainly, no one gives them to us. This disease unfairly leaves it largely up to CALS to ensure that ALS isn't a death sentence for every hope and every dream.
Best,
Laurie
You are not alone -- you have your kids, your friends, other family and us! When the darkness closes in, don't hesitate to start typing whenever you need us.
As for lack of hope, no doubt that the hundreds of solutions P/CALS buy, kludge and borrow every day, and news of incremental research breakthroughs, have to stand in for near-term expectations of a greatly-changed prognosis.
Maybe whatever happiness and peace we find under the hanging sword are all the more precious for our having made them ourselves under the most difficult of circumstances. Certainly, no one gives them to us. This disease unfairly leaves it largely up to CALS to ensure that ALS isn't a death sentence for every hope and every dream.
Best,
Laurie
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ARCG
Distinguished member
- Joined
- Oct 12, 2016
- Messages
- 218
- Reason
- Lost a loved one
- Diagnosis
- 1/2015
- Country
- US
- State
- TX
- City
- Houston
I admire all of you and the continued strength you show, not just taking care of your pals but in all the other challenges you face as well. I don't know how you do it.
Life continues to get more difficult and I find dealing with anything other than my DH's needs is more than I can handle, even though I continue on. I have to address a serious issue with o e of my DDs advisors over something we were misinformed about and know it will be like fighting city hall, but it must be done, she has already tried to address it, but is hitting a brick wall. I just don't have the energy for these things anymore. It is a bureaucratic mess.
Also, After one month on Hospice they have started hinting that my husband isn't dying fast enough for them, (they didn't use those words but that's what they mean). Unbelievable. They don't do a whole lot but the knowledge they are there to make him more comfortable as he progresses is very important to him. When I called his regular doctor about his anxiety before we started hospice, he said, just increase his trilogy time, which did nothing to help. I feel like everything is just a business and there seems to be no real concern for the patient.
There are a myriad of other things, as you all know. My other daughter went to the doctor and the nurse read the wrong chart and told her she had something she doesn't, and scared her to death before they finally straightened it out.
My younger daughter said when she runs and gets to the final bill she wants to stop but thinks, Just one more hill, I can do it. The problem with this is the hills go on and on and on, thanks for listening, I know there is no solution.
Life continues to get more difficult and I find dealing with anything other than my DH's needs is more than I can handle, even though I continue on. I have to address a serious issue with o e of my DDs advisors over something we were misinformed about and know it will be like fighting city hall, but it must be done, she has already tried to address it, but is hitting a brick wall. I just don't have the energy for these things anymore. It is a bureaucratic mess.
Also, After one month on Hospice they have started hinting that my husband isn't dying fast enough for them, (they didn't use those words but that's what they mean). Unbelievable. They don't do a whole lot but the knowledge they are there to make him more comfortable as he progresses is very important to him. When I called his regular doctor about his anxiety before we started hospice, he said, just increase his trilogy time, which did nothing to help. I feel like everything is just a business and there seems to be no real concern for the patient.
There are a myriad of other things, as you all know. My other daughter went to the doctor and the nurse read the wrong chart and told her she had something she doesn't, and scared her to death before they finally straightened it out.
My younger daughter said when she runs and gets to the final bill she wants to stop but thinks, Just one more hill, I can do it. The problem with this is the hills go on and on and on, thanks for listening, I know there is no solution.
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