Eibhling1207
New member
- Joined
- Sep 11, 2014
- Messages
- 3
- Reason
- Loved one DX
- Diagnosis
- 04/2013
- Country
- US
- State
- Colorado
- City
- Colorado Springs
Hi. This is going to start like an intro to a talk show, but first time poster, but I've done lots of searching and reading through the files in the past couple of months -so I feel as though I know many of you already.
A quick background: My mom has bulbar ALS. She was diagnosed in April of 2013 and is completely wheelchair and bed bound. She lost her ability to speak in August of 2013 and uses a tablet to talk, she's been on a PEG since October, and is on a bipap. I live in another state but come in when I can to help my Dad and my Sister as sort of a "relief pitcher". I fly out next week for 11 days, with my main goal of covering enough night shifts so they can get 2 full nights of sleep back-to-back and getting my Sister away for down time as much as I can, Dad doesn't want to leave Mom for more than an hour or two at a time. They do have night time nursing coverage through Hospice during the week, but it still requires one of them be "on duty" all night and weekends as well.
My question: Yesterday my Sister told me that Mom took her aside and told her that she thinks Dad tried to overdose her on her pain medication. He didn't. Everyone is very careful to only medicate her as prescribed and, for pain or secretion medications, only when she tells us she needs it. It currently takes two people to assist her in the bathroom, they just finished installing the lift system last week but she refuses to use it unless she is given no other option. She says it's "too uncomfortable" to use. Last weekend my sister was out of town so my Dad was on "Mom duty" alone, and my Mom texted her many times to tell her she needed to come home to help her in the bathroom because she didn't want to use the lift. Conversations will be started on subjects that Mom doesn't want to talk about and she will just say she doesn't want to talk about it and drives away or asks to be put to bed. This is very unlike her. She is normally a very kind, loving person, thinking more about others than herself.
I've started looking into information on FTD, but I'm not sure - does this sound like it? If so, what should we do? I think we've attributed her behavior to being stuck with this awful disease, but now we aren't so sure. We are just confused right now, and frankly, getting rather P.O.'d at mom and her attitude. The stubborness and paranoia are becoming a problem in provinging her dignity and loving care, and as my family is so sleep deprived their tempers are frayed.
A quick background: My mom has bulbar ALS. She was diagnosed in April of 2013 and is completely wheelchair and bed bound. She lost her ability to speak in August of 2013 and uses a tablet to talk, she's been on a PEG since October, and is on a bipap. I live in another state but come in when I can to help my Dad and my Sister as sort of a "relief pitcher". I fly out next week for 11 days, with my main goal of covering enough night shifts so they can get 2 full nights of sleep back-to-back and getting my Sister away for down time as much as I can, Dad doesn't want to leave Mom for more than an hour or two at a time. They do have night time nursing coverage through Hospice during the week, but it still requires one of them be "on duty" all night and weekends as well.
My question: Yesterday my Sister told me that Mom took her aside and told her that she thinks Dad tried to overdose her on her pain medication. He didn't. Everyone is very careful to only medicate her as prescribed and, for pain or secretion medications, only when she tells us she needs it. It currently takes two people to assist her in the bathroom, they just finished installing the lift system last week but she refuses to use it unless she is given no other option. She says it's "too uncomfortable" to use. Last weekend my sister was out of town so my Dad was on "Mom duty" alone, and my Mom texted her many times to tell her she needed to come home to help her in the bathroom because she didn't want to use the lift. Conversations will be started on subjects that Mom doesn't want to talk about and she will just say she doesn't want to talk about it and drives away or asks to be put to bed. This is very unlike her. She is normally a very kind, loving person, thinking more about others than herself.
I've started looking into information on FTD, but I'm not sure - does this sound like it? If so, what should we do? I think we've attributed her behavior to being stuck with this awful disease, but now we aren't so sure. We are just confused right now, and frankly, getting rather P.O.'d at mom and her attitude. The stubborness and paranoia are becoming a problem in provinging her dignity and loving care, and as my family is so sleep deprived their tempers are frayed.