Family Members in Denial
- Thread starter AnxiousWaiting
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Narrowminded
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Anxious. My Brian is now 54, so vented at 47. Much different than 79.
Assuming your Mom is on Medicare, her Dr can order Home Health, which is covered and for exactly that, the nurse to teach the caregivers. Please ask her Dr to order that.
Hugs,
Sue
Assuming your Mom is on Medicare, her Dr can order Home Health, which is covered and for exactly that, the nurse to teach the caregivers. Please ask her Dr to order that.
Hugs,
Sue
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Anxious, there are health advocacy services that employ nurses that could work by the hour to do the training you want. S/he would need to be knowledgeable of ALS and medical equipment. Look for health advocates in your area. There are also online guides for ALS care, though none is awesome. OTs and PTs might train on equipment but I think you are looking for a more holistic trainer.
Your local ALSA or MDA care coordinator may be willing to do this for an hour or two if you explain your situation.
As Sue says, if there is a good home health agency, that is another possibility.
But I think first and foremost you need to give the attendants a one-page factsheet (NIH or another site) that says ALS doesn't get better, it's a disease that requires palliative rather than curative care, and patients require more care as time goes on. And walk through it point by point. And tell them frankly that you require them to forget everything your sister told them, or forget coming in next week -- that they are starting with a new mission.
Your local ALSA or MDA care coordinator may be willing to do this for an hour or two if you explain your situation.
As Sue says, if there is a good home health agency, that is another possibility.
But I think first and foremost you need to give the attendants a one-page factsheet (NIH or another site) that says ALS doesn't get better, it's a disease that requires palliative rather than curative care, and patients require more care as time goes on. And walk through it point by point. And tell them frankly that you require them to forget everything your sister told them, or forget coming in next week -- that they are starting with a new mission.
KateEmerson
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Just a thought... seeing as your older sister is abroad and I assume not seeing your mother.....do you think if you sent a video to her of your mother struggling to do all the the things she thinks she should be doing independently it might get her to see the reality of the situation? It sounds like she is in a lot of denial and maybe seeing your mother suffering could help her accept the diagnosis.
Hoping for the best, Kate
Hoping for the best, Kate
AnxiousWaiting
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Thank you for these great suggestions. I will look into the home health agency and also nurses that could help with the situation. I have already provided materials on ALS to the attendant. But it really hasn't had an impact.
Narrowminded
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Anxious - if you can get a nurse in there, I'm sure she would have more impact on the attendant. Some people just need to see initials after a persons name to make the credible. If you mom's physician is amicable, maybe he/she would be willing to talk with the attendant in the mean time? Could not hurt to ask, and she may respond positively to the Dr. explaining things.
Hugs,
Sue
Hugs,
Sue
pdcraig
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Hi Felix,
Just checking in. Were you able to get a nurse or OT in to help explain things to the attendants?
My PALS also suffers from anxiety. He's on Clonazepam and Lorazepam to help control things now and was also on Diazepam when things were really bad. His hits worst when his routine changes, new meds, new equipment, new processes or procedures, new people working with him. His anxiety feeds his spasticity, which feeds his pain, which feeds his anxiety. A vicious circle.
He's not in denial but refuses to talk about things, very disengaged. If one person says "No, I don't think this is necessary", that's all it takes. It's how he ended up backing out of his peg procedure. Ironically, it's also how he ended up backing out of the anxiety clinic. One doctor told him no, so everyone else was wrong.
There are a couple of things that work to mitigate his anxiety.
Information in small doses. Everything is introduced as an option, something to consider. Pros and cons discussed if he asks questions. Stopping when he starts to get agitated. Revisiting it over and over and over until he's comfortable.
Equipment introduced but not pushed on him. We had an OT in on several occasions doing safety assessments. Everything from wheelchair recommendations to cutlery with built up handles for easier gripping when he was eating. No talk of ALS or progression, just plain and simple recommendations for safety after she had watched him go about his daily routine. We had equipment for months before he would use some of it. It gave him time to get used to it, it became part of the new landscape. It was funny how different his reaction was to a safety recommendation as opposed to a discussion of needing things because of ALS progression.
The hardest thing for me has been no means no. Not pushing him to do things I think he should do. It's his life, his choice, his comfort. Me biting my tongue and accepting things.
If your mother and siblings are in denial, maybe a slight change in focus will help them accept the changes a little easier.
Paul
Just checking in. Were you able to get a nurse or OT in to help explain things to the attendants?
My PALS also suffers from anxiety. He's on Clonazepam and Lorazepam to help control things now and was also on Diazepam when things were really bad. His hits worst when his routine changes, new meds, new equipment, new processes or procedures, new people working with him. His anxiety feeds his spasticity, which feeds his pain, which feeds his anxiety. A vicious circle.
He's not in denial but refuses to talk about things, very disengaged. If one person says "No, I don't think this is necessary", that's all it takes. It's how he ended up backing out of his peg procedure. Ironically, it's also how he ended up backing out of the anxiety clinic. One doctor told him no, so everyone else was wrong.
There are a couple of things that work to mitigate his anxiety.
Information in small doses. Everything is introduced as an option, something to consider. Pros and cons discussed if he asks questions. Stopping when he starts to get agitated. Revisiting it over and over and over until he's comfortable.
Equipment introduced but not pushed on him. We had an OT in on several occasions doing safety assessments. Everything from wheelchair recommendations to cutlery with built up handles for easier gripping when he was eating. No talk of ALS or progression, just plain and simple recommendations for safety after she had watched him go about his daily routine. We had equipment for months before he would use some of it. It gave him time to get used to it, it became part of the new landscape. It was funny how different his reaction was to a safety recommendation as opposed to a discussion of needing things because of ALS progression.
The hardest thing for me has been no means no. Not pushing him to do things I think he should do. It's his life, his choice, his comfort. Me biting my tongue and accepting things.
If your mother and siblings are in denial, maybe a slight change in focus will help them accept the changes a little easier.
Paul
AnxiousWaiting
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Paul -- really appreciate the post. I think I will try the approach of not identifying the diagnosis but pointing my mother in the direction of the care she needs. Small doses of information.
She is already on xanax and effexor for anxiety and depression. But these medications only go so far in helping her after she reaches a new stage of degeneration.
I continue to struggle to find someone to do an in-home assessment. She had been getting weekly PT but had to stop for 7 weeks in order to satisfy a Medicare requirement. The place she's been going to will not take out of pocket payment for home health care. The nurses and OTs that they send out for assessments can only stay for an hour because that's what Medicare covers. We really need someone to shadow for a full day.
So, we're in a holding pattern. I'm going to try to get her back to the ALS Clinic and to see a pulmanologist. It's tough to do that!
If anyone has specific recommendations for companies that might provide a PT or OT or nurse to shadow for a day, please let me know.
Also, how do I PM somebody on this forum?
She is already on xanax and effexor for anxiety and depression. But these medications only go so far in helping her after she reaches a new stage of degeneration.
I continue to struggle to find someone to do an in-home assessment. She had been getting weekly PT but had to stop for 7 weeks in order to satisfy a Medicare requirement. The place she's been going to will not take out of pocket payment for home health care. The nurses and OTs that they send out for assessments can only stay for an hour because that's what Medicare covers. We really need someone to shadow for a full day.
So, we're in a holding pattern. I'm going to try to get her back to the ALS Clinic and to see a pulmanologist. It's tough to do that!
If anyone has specific recommendations for companies that might provide a PT or OT or nurse to shadow for a day, please let me know.
Also, how do I PM somebody on this forum?
pdcraig
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Hi Felix,
To PM someone, just click on their username. It opens a dropdown list of options.
If your mother has been to clinic, they should be able to refer you to an OT. Alternatively your ALS rep should be able to help with recommendations.
None of the OT's we had spent an entire day with my PALS . Typically they wanted to see him eat, they made him walk (while he still could) watched him do various transfers and made him get on and off the toilet. They actually made the recommendation about how the toilet should be installed. It took 2 - 4 hours depending on his progression at the time and what they wanted to assess. This was all arranged through clinic and my ALS rep to make sure he was safe at home. I didn't have to look for anyone but I'm in a different country so I don't know how things work where you are.
You should be able to call into the clinic and ask for help. You don't have to wait until you are there with your mother for a scheduled appointment.
Paul
To PM someone, just click on their username. It opens a dropdown list of options.
If your mother has been to clinic, they should be able to refer you to an OT. Alternatively your ALS rep should be able to help with recommendations.
None of the OT's we had spent an entire day with my PALS . Typically they wanted to see him eat, they made him walk (while he still could) watched him do various transfers and made him get on and off the toilet. They actually made the recommendation about how the toilet should be installed. It took 2 - 4 hours depending on his progression at the time and what they wanted to assess. This was all arranged through clinic and my ALS rep to make sure he was safe at home. I didn't have to look for anyone but I'm in a different country so I don't know how things work where you are.
You should be able to call into the clinic and ask for help. You don't have to wait until you are there with your mother for a scheduled appointment.
Paul
AnxiousWaiting
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Thanks for all your help. We have a PT coming to continue my mother's regular PT sessions starting Monday. The OT and speech therapy assessments will occur shortly after that.
I took my mother to the ALS clinic. They found that her FVC is 36. (Mother does not want feeding tube or ventilator regardless). They are recommending that she use her CPAP 24/7. They are also recommending hospice. How does hospice work? I have seen a few threads on the topic but will post separately.
Anyway, thanks for your support.
I took my mother to the ALS clinic. They found that her FVC is 36. (Mother does not want feeding tube or ventilator regardless). They are recommending that she use her CPAP 24/7. They are also recommending hospice. How does hospice work? I have seen a few threads on the topic but will post separately.
Anyway, thanks for your support.
AnxiousWaiting
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Yes, BIPAP. Sorry.
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anxious would you mind very much clicking on the white link that says User CP in the blue bar above and putting in the diagnosis date? I can't keep track of these and it really helps when reading posts to see that little detail 
Dave K
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The key word here is "could." I'm pretty sure ventilators have extended some patients' lives by more than ten years. However, you may find that the average survival for a PALS on a vent is quite a bit shorter than six years, and may only be a matter of months, depending on the particular patient's condition. How a ventilator may change an individual patient's prognosis is a question for medical professionals who have actually examined the patient and fully reviewed the patient's chart (and, on an issue as important as this, preferably with second and third opinions).
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