Recent content by Hewitt

Cheers to you, Karen, for emerging from this difficult gauntlet with such steadfast grace and faith. May you be richly rewarded on the other side--

Pete, in addition to giving you an opportunity to vent, your posts and honesty are helping so many CALS help to understand what their loved one is going through. My sister was mute and unable to communicate at all for the last year of her life, and we never really knew what she was going...

My sister presented with foot problems - cramping, some sensation loss, and pain on walking, and she bounced between podiatrists (dx plantar fasciitis), neurologists (dx Raynaud's disease), physical therapists (who prescribed stretching) and her internist. She gave up her daily hikes aned...

If you go to PubMed at pubmed.gov and type in 29021775[uid] in the search box, you can access a free article from Frontiers in Neurology that discusses some cardiac findings in ALS (click on the PMC Full Text icon). It sounds as if this article is describing a more severe scenario than yours...

Pete, you are so much stronger and braver than you give yourself credit for. Your concern for you wife and your daughter are testament to your love and empathy for those around you, all while you are fighting one of the toughest battles there is. Please don't dwell on perceived failings in the...

Sorry I mistyped the first line of that lovely old hymn - my laptop has tiny fonts that are difficult for my aging eyes to read. It goes "the strife is o'er, the battle is won", and its message of triumph over physical adversity and death has cheered me up many times during this long struggle.

My beautiful sister died very unexpectedly of complications of ALS in the middle of the night last night. She had just been in the hospital for replacement of her feeding tube, and the Hospice nurse had examined her a few days ago, and no red flags were raised except for the fact that her blood...

Yes, I have been able to talk very freely with the SILs, and I have already pointed out several things they can address while they are there (keeping a careful journal of morphine administration, for example, so that the father and son don't administer it independently - something they didn't...

She has Hospice aides coming in three times a week for bathing and a weekly visit from her Hospice nurse, but my BIL has dismissed the home healthcare aide that was coming in 3 nights a week (much less than the amount Hospice had mandated) so, no, she is not getting enough care. Fortunately...

My sister has had ALS for two years and has been under hospice care for the last 9 months. She has just recently started experiencing occasional pain (as evidenced by increased respirations - she can't communicate otherwise), for which she is given morphine. This has only happened a few times...

Thanks, Lkaibel. You're absolutely correct about their assessment of the situation, unfortunately. I'm supposed to be the payee for the healthcare services, and with today as the deadline for starting home healthcare, it would appear that nothing has been set up yet, so I am waiting for a call...

[If they are listening to you, you should not underestimate the amount of outside help your sister may need.] Actually, I would never suggest to Hospice that 4-6 hrs of daily assistance would be sufficient, but I'm trying to get my BIL to agree to at least a few hours of care a day, and he's...

That's an interesting observation, Kate. I have only spoken to the nurses and social workers involved, and they seem reasonably knowledgeable and committed to my sister's comfort. They have also solicited my input frequently and included me in team meetings to get my feedback. I am a bit...

you really need to have a senior/disability services person involved in your sister's residential jurisdiction. Do you know what sort of agency typically deals with senior/disability services? Elder/Senior Services or Social Services? I tried searching the state and locality website, but it...

Thanks so much - you have given me much to think about, and I really appreciate it. I do live in NC, but my sister is in MA, and the Hospice there has chosen to work with me because they have a very difficult relationship with my brother-in-law. It has been hard to try to make arrangements for...