What about hospice?

[lisaohgee]

My mom refuses to go back to her ALS doctors, saying they don't do anything for her. I believe she still sees her GP.

She has no muscle function at all from the neck down. She can still eat a little, and talk very little -- it is extremely difficult to understand her. She's started to lose control of her head, and she can't even pucker up to kiss anyone.

Her breathing is in the 40s, low 40s. She is complaining about ache in her lungs.

My stepdad is her sole caregiver. As much as I don't think either of them want her living in hospice I don't know if she is at the point where she needs it. is there in-home hospice? Does insurance cover it?

they don't talk to me much about it because myself and my children are the "bright spots" so they don't like to bring it up tome.

 

[Al]

As far as I know, most hospices will provide home care. Time to call them.

AL.

 

[abbas child]

Lisa, insurance companies have different rules--something to check into with her insurance. Our ex-insurance would have quit after six months, requiring me to go off hospice, wait and then hopefully go back.

Yes, they do take care of lots of problems, but as to how much time is given to the patient, it varies from one to another. But they definitely come into the home, take care of pain and discomfort issues at the very least.

Oh, I totally agree with Al. The time has come. She would benefit greatly, I feel sure.

 

[Katie C]

Kaiser's in home hospice rules are (at least this is what we had): prognosis of no more than 6 months. This would have been reevalueated at 3 month intervals but there was no actual limit to how long we could receive hospice services. Hospice is also about support for the family, and we still receive materials on the grieving process from them . I agree that the time has come to contact her doctor and/or insurance company

 

[pjm220]

Lisaohgee, I concur, time to make that phone call. Start with your neuro. They should be able to get what information they need from your insurance company. Home hospice care is best for many people. If it's available. I am praying for you to receive sound and compassionate voices to give you guidance in your choices ahead. And thank you so very much for carrying. For your mother.

 

[notme]

HI

I won't add to what others have said other than to say that with a respiratory rate of 40 and discomfort in her chest--she might have a lung infection such as pneumonia that is treatable. No need for an ALS doc to treat or diagnose pneumonia. It's a simple chest x-ray. A home RN might be able to hear it in her lungs if you have such care at this time.

 

[smwelder]

As for ALS clinic they are useful in the start of diagnosed and during progression for the obtaining equipment and services. all other medical needs see gp. i know things can get crazy. Do talk to insurance and the social worker at ALS clinic. I wish u the patience to deal with all this