AnxiousWaiting
Member
- Joined
- Dec 18, 2016
- Messages
- 19
- Reason
- Loved one DX
- Country
- NA
- State
- DC
- City
- DC
I had posted earlier about denial among family members about my PALS ( 79 year old woman diagnosed in 2013 with ALS). I took her to the clinic yesterday. Her FVC is 36. She has decent strength in her hands and forearms; voice is strong; swallowing is worse. The neurologist recommended hospice care.
I had not even considered hospice for my mother yet! What does it entail for ALS patients? Can we still keep my mother's live in assistant? We like our live in assistant, who is kind hearted and manages household affairs and meals extremely well. However, she is not a trained medical professional and really pushes my mother with things like eating and using her hands -- the focus is on independence and miraculous recovery of strength rather than comfort. Would hospice provide oversight? How about therapy for pALS and cals?
Is hospice somehow different for ALS patients than for cancer patients? My mother was very alarmed. I have focused with her on the advantage of not having to go to the clinic anymore and that we can renew the prescription after 6 months .... any suggestions on how to keep her spirits up?
I must say that I'm at wits end with this. My siblings and I, about two years ago, got my mother's situation stabilized in terms of care. We had attendants and an agency; friends coming over all the time; cooking sorted out; PT coming home. Tough love seemed relatively harmless and was keeping my mother's spirits up. Things were sort of on autopilot. My main focus was on visiting frequently with her grandchildren. But, in the last six months or more, denial/tough love in the family has made things difficult. My siblings and I are not on the same page. Much of what I do is identified as not enough and furthering my mother's "learned helplessness." What's more, I am having to get more engaged in the day to day. For example, pushing for a switch to a Hoyer Lift is a challenge. Everything I recommend is met with "it's okay, it's okay -- see, she can do it." Except people don't see the overall fatigue it causes the PALS.
Anyway, if you guys have links to threads inhospice, would appreciate it. I feel overwhelmed. The added layer of having to filter information because of family denial or family criticism takes up so much energy!!!
Thx
I had not even considered hospice for my mother yet! What does it entail for ALS patients? Can we still keep my mother's live in assistant? We like our live in assistant, who is kind hearted and manages household affairs and meals extremely well. However, she is not a trained medical professional and really pushes my mother with things like eating and using her hands -- the focus is on independence and miraculous recovery of strength rather than comfort. Would hospice provide oversight? How about therapy for pALS and cals?
Is hospice somehow different for ALS patients than for cancer patients? My mother was very alarmed. I have focused with her on the advantage of not having to go to the clinic anymore and that we can renew the prescription after 6 months .... any suggestions on how to keep her spirits up?
I must say that I'm at wits end with this. My siblings and I, about two years ago, got my mother's situation stabilized in terms of care. We had attendants and an agency; friends coming over all the time; cooking sorted out; PT coming home. Tough love seemed relatively harmless and was keeping my mother's spirits up. Things were sort of on autopilot. My main focus was on visiting frequently with her grandchildren. But, in the last six months or more, denial/tough love in the family has made things difficult. My siblings and I are not on the same page. Much of what I do is identified as not enough and furthering my mother's "learned helplessness." What's more, I am having to get more engaged in the day to day. For example, pushing for a switch to a Hoyer Lift is a challenge. Everything I recommend is met with "it's okay, it's okay -- see, she can do it." Except people don't see the overall fatigue it causes the PALS.
Anyway, if you guys have links to threads inhospice, would appreciate it. I feel overwhelmed. The added layer of having to filter information because of family denial or family criticism takes up so much energy!!!
Thx