new here and not sure what to expect
Posted: Mon Jan 14, 2019 12:01 pm
Hi all, I'm new here. I don't suffer from MS. My mother-in-law does and my father-in-law is her caregiver. My husband is an amazing son who helps as much as he can, visits weekly with our two girls, etc.
I'm here because I'm left in the dark a lot (understandably) but because of that, I'm just not sure about what's going to happen, or if anyone can tell us what will happen.
Let me back up and try to share our story without writing a novel. MIL's first symptoms were at age 25 (she's 68 now). However, she was not diagnosed until she was 40.
Fast-forward to 2014. She had a bad foot infection that did not heal. It got into the bone. She was admitted and it went downhill from there. (Apologies, as I don't have ALL the details) but from what I understand, they had to stop the MS drugs (no clue what they are) to treat the infection. Due to that, she started going downhill fast - she was hallucinating hard core and it was awful to watch and it was scary for her because she was so confused. She spent 2.5 months in the hospital, before going on hospice. BUT, miraculously, she ended up coming home (on hospice), but then "graduated" for lack of a better term. While we were very excited for her return home, she had lost ALL function she had previously (ability to feed herself, drink from a cup, answer the phone, change the channel on TV, etc.) My FIL retired early to become her caretaker. They have nurses come in a few times a week for IV meds.
At this point, she is confined to her recliner, or her wheelchair. She has almost no use of her hands. She is getting more and more confused.
I want my kids to see her as much as possible (I didn't have grandparents in my life at all), but I'm also concerned. I don't want my kids to be afraid of her if she's confused and hallucinating.
She did almost pass when she got pneumonia 2 years ago. She was treated and she recovered. My FIL asked my husband "what do I do to make sure she does not aspirate again" and my husband was like "you can't - she will lose the ability to swallow at some point" - after her stint in the hospital in 2014, she made it VERY CLEAR that she does NOT want a feeding tube.
Anyway, I guess my question is this - what happens next? I imagine she will get so bad that she's unable to leave her hospital bed (in their master bedroom) right? She currently is on a bowel regimen that requires her to take laxatives. She does not want anyone in the house during this time (understandable) but I'm afraid that we are going to get to a point that she does not want to see anyone anymore. Does that happen?
I'm sorry for my ignorance, but I'm just trying to understand and support more, if I can. Everything I look up when I search "end stage MS" is where my MIL was YEARS ago. I can't seem to find much about what happens from here on out.
thanks in advance for any insight.
I'm here because I'm left in the dark a lot (understandably) but because of that, I'm just not sure about what's going to happen, or if anyone can tell us what will happen.
Let me back up and try to share our story without writing a novel. MIL's first symptoms were at age 25 (she's 68 now). However, she was not diagnosed until she was 40.
Fast-forward to 2014. She had a bad foot infection that did not heal. It got into the bone. She was admitted and it went downhill from there. (Apologies, as I don't have ALL the details) but from what I understand, they had to stop the MS drugs (no clue what they are) to treat the infection. Due to that, she started going downhill fast - she was hallucinating hard core and it was awful to watch and it was scary for her because she was so confused. She spent 2.5 months in the hospital, before going on hospice. BUT, miraculously, she ended up coming home (on hospice), but then "graduated" for lack of a better term. While we were very excited for her return home, she had lost ALL function she had previously (ability to feed herself, drink from a cup, answer the phone, change the channel on TV, etc.) My FIL retired early to become her caretaker. They have nurses come in a few times a week for IV meds.
At this point, she is confined to her recliner, or her wheelchair. She has almost no use of her hands. She is getting more and more confused.
I want my kids to see her as much as possible (I didn't have grandparents in my life at all), but I'm also concerned. I don't want my kids to be afraid of her if she's confused and hallucinating.
She did almost pass when she got pneumonia 2 years ago. She was treated and she recovered. My FIL asked my husband "what do I do to make sure she does not aspirate again" and my husband was like "you can't - she will lose the ability to swallow at some point" - after her stint in the hospital in 2014, she made it VERY CLEAR that she does NOT want a feeding tube.
Anyway, I guess my question is this - what happens next? I imagine she will get so bad that she's unable to leave her hospital bed (in their master bedroom) right? She currently is on a bowel regimen that requires her to take laxatives. She does not want anyone in the house during this time (understandable) but I'm afraid that we are going to get to a point that she does not want to see anyone anymore. Does that happen?
I'm sorry for my ignorance, but I'm just trying to understand and support more, if I can. Everything I look up when I search "end stage MS" is where my MIL was YEARS ago. I can't seem to find much about what happens from here on out.
thanks in advance for any insight.