Recent content by pamdemonium

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    Qualifying for hospice with a vent?

    I looked up all the hospice organizations in the area where my in-laws live. I called one of them. The woman was very nice. I explained the situation to her. She told me that they evaluate each person on an individual basis. She said they would need to evaluate my FIL and determine if he is...
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    Qualifying for hospice with a vent?

    Thank you. I will do that.
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    Qualifying for hospice with a vent?

    Hello- My PALS recently decided that he would like to use a non-invasive ventilator. Does this mean that he does not meet the criteria to qualify for hospice? Standards seem to vary so widely. It is very confusing. Pam
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    Garage Sale Story

    Love this. Love that he wanted to help you and did in such a tactful way.
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    Who to talk to about legal issue WRT ventilation

    Hello- I live in New York state. I have questions regarding the legality of withdrawing someone from a ventilator. My father-in-law has rapidly progressing PBP. He is starting to have breathing issues. He is trying to decide if he wants a ventilator. I want him to be able to make his...
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    My PALS does not want to use his eyemax

    Just to close the loop on this. My husband and I printed out the manual letter board and instructions provided by trfogey and tried them out ourselves just to get a feel for it. We liked it a lot. We took them to an office supply store and has them printed out on two piceces of colored card...
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    Caring for a caregiver?

    Thank you for all your responses. My FIL is very involved at this point. He takes all his nutrition and liquids and meds through a feeding tube mostly at night after he is in bed. He would never want me to help with his intimate personal care. He can barely bring himself to allow my MIL to...
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    My PALS does not want to use his eyemax

    Kelly- You are right up the road from me. Small world. It is really wonderful that your husband has mastered the eyemax. He sure can do a lot with it! I would love to read some of your husband's speeches and share them with my family. Would you be able to email them to me? My email...
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    Caring for a caregiver?

    Hello- My mother-in-law is the primary caregiver for my father-in-law who was diagnosed with PBP/ALS in January 2010. My husand and I live 4 hours away and travel to see them frequently. When we are there, I always try to find ways to help her out. Laundry, cleaning, food shopping, yard...
    • pamdemonium
    • Thread
    • als caregiver caregivers diagnosed father food hours love pbp support travel work
    • Replies: 7
    • Forum: Current caregivers
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    What the end was like

    I am sorry for your loss and grateful for your courage to share this with us. Thank you.
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    My PALS does not want to use his eyemax

    Thank you for the letter board and instructions. I have saved them off and will definitely give it a try.
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    My PALS does not want to use his eyemax

    CJ- I am not sure what you mean by a switch. The only movement he has left is to slightly nod or shake his head to indicate yes or no. And he can move his eyes around but he cannot blink at will. No hand/leg/body movement at all any more. Catcaniac- I did create a screen with just his most...
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    Why too late for PEG?

    From what I have read, I believe that it is when the PALS breathing has become too compromised to withstand the anesthesia.
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    My PALS does not want to use his eyemax

    First off, you have made some pretty strong assumptions based on some very limited information. My FIL used to be able to communicate with us via his ipad and no one ever got impatient with him waiting for him to type a response. We were all grateful that he was able to do that as long as he...
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    My PALS does not want to use his eyemax

    He cannot speak at all. Only nod up and down or side to side. It is really difficult to comminicate via yes and no questions when it comes to the more complex topics like emotions and motiviation.
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