KellyC306
New member
- Joined
- Jul 30, 2013
- Messages
- 2
- Reason
- CALS
- Diagnosis
- 12/2012
- Country
- US
- State
- Oregon
- City
- Portland
Friends:
I am new to this forum, so will jump in with my pressing question: what experience have any of you had with having to make a hard decision to seek residential care for an ALS patient?
Background: my wife was diagnosed at Christmas, 2012, and the disease has come on very fast and aggressively. As I write this, the doctors tell us that we have perhaps 6-9 months left. She has already lost her ability to walk, to turn over in bed, to feed herself, we can only understand her about half the time, etc etc. I agonize with her, and for her, but realize there is nothing I can do. I accepted all that, fairly quickly, even though I hated it.
Now, I had images of her disease progressing here, with her at home, surrounded by all those she loves and who love her so much. She is so loveable and lovely, normally. But...
Over the last 60 days, to my great distress, the docs have also told us that she has been hit hard with "front-temporal dementia" which, for those of you who may not know, apparently hits some 10-30% of ALS patients so hard that it changes personality. My normally serene and gentle wife has become full of rage and panic, and is often cruel and unkind to those around her, including our child--whom she loves more than anything-- but seems only later aware of what has happened. She tells me that she has no control over these outbursts. That fact, plus the reality that she is not sleeping well--either because of the complicated cocktail of meds, including anti-psychotics, that she is taking, or something else--means that our lives here are hell. I have to work, and she cannot be left alone, and friends are starting to stay away, so as of now we have professional caregivers coming in about 15 hours a day now. This is very expensive, but, more to the point, still doesn't make any of it tolerable. The anti-psychotics don't seem to be working, no matter how they mix them around, add to, etc.
Recently, some friends--who know at least a little about ALS and a lot about health care generally--are suggesting that we may have to look at residential care, given how bad things are.
Anyone have any experience with this? I'm heartbroken to even speak of it, but I don't see many options.
Thanks,
K.
I am new to this forum, so will jump in with my pressing question: what experience have any of you had with having to make a hard decision to seek residential care for an ALS patient?
Background: my wife was diagnosed at Christmas, 2012, and the disease has come on very fast and aggressively. As I write this, the doctors tell us that we have perhaps 6-9 months left. She has already lost her ability to walk, to turn over in bed, to feed herself, we can only understand her about half the time, etc etc. I agonize with her, and for her, but realize there is nothing I can do. I accepted all that, fairly quickly, even though I hated it.
Now, I had images of her disease progressing here, with her at home, surrounded by all those she loves and who love her so much. She is so loveable and lovely, normally. But...
Over the last 60 days, to my great distress, the docs have also told us that she has been hit hard with "front-temporal dementia" which, for those of you who may not know, apparently hits some 10-30% of ALS patients so hard that it changes personality. My normally serene and gentle wife has become full of rage and panic, and is often cruel and unkind to those around her, including our child--whom she loves more than anything-- but seems only later aware of what has happened. She tells me that she has no control over these outbursts. That fact, plus the reality that she is not sleeping well--either because of the complicated cocktail of meds, including anti-psychotics, that she is taking, or something else--means that our lives here are hell. I have to work, and she cannot be left alone, and friends are starting to stay away, so as of now we have professional caregivers coming in about 15 hours a day now. This is very expensive, but, more to the point, still doesn't make any of it tolerable. The anti-psychotics don't seem to be working, no matter how they mix them around, add to, etc.
Recently, some friends--who know at least a little about ALS and a lot about health care generally--are suggesting that we may have to look at residential care, given how bad things are.
Anyone have any experience with this? I'm heartbroken to even speak of it, but I don't see many options.
Thanks,
K.