My partner stayed in our local hospice for 6 weeks in Jan/Feb. This was following two bouts of pneumonia, two hospital stays, retiring and not having a care package in place, and in order to get him established on PEG feeding. Also, CJ husband had just passed away in the hospice, and I was really reluctant to leave L there. But we really had no choice. Things may be different in the US but some of the things I have learned:
- Majority of staff did not have much experience with ALS/MND and required training on all of the equipment (cough assist, NIV, PEG). This was done on site, with other from L’s team delivering it (e.g. respiratory nurse came to train staff on NIV). Despite training somebody did not plug the NIV to the mains so it ran out of power in the middle of the night. Luckily, L was able to push an alarm button, otherwise he would have suffocated. This brings me to my second point .
- Make sure Bruce can alert staff and that there is a reasonably short span between an alert and somebody coming in. We tried environmental controls (provided by hospice) which allowed L to raise an alarm but in the end settled for a large, switch like button, always securely taped by L’s side.
- Beware of ‘night sedation’, that is medication given to help people sleep. We have found that this was dished out relentlessly. And on particular type is really not good for MND patients as it suppresses their breathing a lot.
- Make sure they have equipment such as hoists, appropriate slings, shower chairs etc. We had to bring some of our own equipment and they were fine about it.
- Once L was settled and staff got used to him things fell into place. But I still went to see him 3 times each day (it was only 5 mins drive) and have kept an eye on everything (and there were issues along the way with the way his care was delivered).
- L found it difficult to see so many people die around him (about 15 in 6 weeks) but has kept up his spirits.
- Food was excellent, home cooked and available 24/7. And so was gin and tonic : )
- Visiting hours were also 24/7.
I missed him terribly, took our son there every day (they had a family room) and I felt guilty. But I did get a few good nights of sleep and enjoyed just chilling out in the evening, having a glass of wine, catching up on correspondence... instead of embarking on a relentless bed time routine, night after night. His stay allowed me to have a break, for his care package to be arranged, as well as to learn what hospice stay entails, should we need to use them in the future.
All the best, Dani
