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 am afraid that your experience lies well outside my own for the most part; others may be able to provide more useful input than any i could come up with!
the only things that stand out to my eye are the infection and the pneumonia. those both send up red flags for suboptimal zinc status, which tends to happen with age in general unless managed for, and which is also typical of ms patients.
in table 2 on p 693 of the attached pls note the mean serum zinc level 11.0 umol/l in female ms patients > 45 years of age; this group's mean level is deficient according to a current local reference range (11.5-18.5 umol/l). with a standard deviation of 1.9 around that mean, you can imagine the patients representing the left tail of this bell curve are in particularly rough shape zinc-wise.
(that said, the serum zinc levels and copper-zinc ratios do not look optimal for any group, whether patients or controls - a bit surprising because the control group details provided on p691 look pretty decent)
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
We are all not in a position to see what you can see. At 68, she is not elderly but often, particularly older people, who have a prolonged stay in hospital with an illness end up with an underlying infection. Urinary tract infections are very common. They can be very debilitating and present with the conditions you describe. Be very sure she has blood tests that are cultured up to check for this. It is too easy to miss but a blood or urine test invariably finds them. If she was 88, I'd say the same thing but 68 is pretty young. Don't make the mistake of dumping symptoms in to the MS bucket.
The foot infection did eventually heal. And she has not gotten pneumonia again since that last episode.
I know no one can tell me what the future holds. The planner in me wants to be ready. But, I also know that I'm not immediate family, so it's not my job to know what happens next. But, I worry about them all.