KatieNBoyd
Distinguished member
- Joined
- Oct 17, 2015
- Messages
- 151
- Reason
- Lost a loved one
- Diagnosis
- 11/2015
- Country
- US
- State
- MT
- City
- Boyd
Good morning,
I would like to know if any of you have used respite care for your PALS with FTD? I know that with our Hospice care that they allow a few days respite at our little hospital. I also know that our hospital and its staff have never cared for an ALS patient let alone one with FTD.
My PALS cannot talk (occasionally will use a boogie board to write hardly legible words/sentences that are not coherent), he doesn't eat, only drinks sips of water or juice, he walks with his walker, his weight is about 98 lbs. He ate a little bit for Thanksgiving dinner and seems to have renewed his longevity.
His meds are morphine (.25) and ativan, then at night rimorion (sp). He also has a scopimine (sp) patch behind his ear for the mucus/phlegm. He consistently scratches it off then I have to find it and tape back on. He only uses his trilogy at night for a few hours before he pulls it off and won't put it back on.
His OCD habits, scratching and picking at his body, getting up and going into the bathroom and sitting for 40 minutes (he has to only have three squares of TP to wipe himself), then standing at the sink, sipping water and spitting it all over for another 20 or so minutes. His blankets have to be arranged just so, he prefers to sleep in the buff. His clothes have to be put on and taken off just so. During the day he goes back and forth between (our bed room) his hospital bed, the bathroom and his computer. (I am pretty sure there is an impression being made in the wood floors with this repeated pattern).
It is just me and our 15 year old daughter at home with him (she has been a jewel!) Of course Hospice comes out regularly. Part of me wishes for a break. Part of me knows he will hate me for taking him there (not to say anything for the reaction from his children and his family).
Just wondering how it worked for anyone else. Thanks Katie
I would like to know if any of you have used respite care for your PALS with FTD? I know that with our Hospice care that they allow a few days respite at our little hospital. I also know that our hospital and its staff have never cared for an ALS patient let alone one with FTD.
My PALS cannot talk (occasionally will use a boogie board to write hardly legible words/sentences that are not coherent), he doesn't eat, only drinks sips of water or juice, he walks with his walker, his weight is about 98 lbs. He ate a little bit for Thanksgiving dinner and seems to have renewed his longevity.
His meds are morphine (.25) and ativan, then at night rimorion (sp). He also has a scopimine (sp) patch behind his ear for the mucus/phlegm. He consistently scratches it off then I have to find it and tape back on. He only uses his trilogy at night for a few hours before he pulls it off and won't put it back on.
His OCD habits, scratching and picking at his body, getting up and going into the bathroom and sitting for 40 minutes (he has to only have three squares of TP to wipe himself), then standing at the sink, sipping water and spitting it all over for another 20 or so minutes. His blankets have to be arranged just so, he prefers to sleep in the buff. His clothes have to be put on and taken off just so. During the day he goes back and forth between (our bed room) his hospital bed, the bathroom and his computer. (I am pretty sure there is an impression being made in the wood floors with this repeated pattern).
It is just me and our 15 year old daughter at home with him (she has been a jewel!) Of course Hospice comes out regularly. Part of me wishes for a break. Part of me knows he will hate me for taking him there (not to say anything for the reaction from his children and his family).
Just wondering how it worked for anyone else. Thanks Katie