Using respite for the first time

Jeanne C.

One of the hospice services my husband is eligible for is respite care. We're scheduled to use it this week for a few days while I go to our nephew's graduation. I'm nervous about it. He's never done well in a hospital setting, even before the FTD (seriously, he tried to leave the ICU hours after having an MI in 2015). I am looking forward to some time with my family, but it's bittersweet because he would also have enjoyed it once upon a time. And I doubt I'll relax the entire time.

Has anyone used short-term respite? How did it go? Any advice?

SusanB-dil

We have not used anything respite, but a suggestion so you will be more at ease… will you be able to call in, just for your own peace-of-mind, that all is well? Also - be assured that no doubt they will call you if they need you for anything.

Please enjoy the time with family and friends at the graduation!

ButterflyWings

Yes, we did - I was super nervous but he did fine. They kept him safe which was my minimum. My suggestions:

• Do a visit by yourself if you can, just because it is faster. Virtual is not a bad option.
• Pre-view the site with him if you want a glimpse of how they relate to him specifically, and vice versa.
• The advance paperwork is important and I would duplicate any medicine instructions (dosage, time), etc.
• Start the stay on a weekday so his records are part of any regular status/staff meeting. Weekend wasn't good for DH to start but I had to work around the dates I needed to be gone. Short staff and not everyone even knew he was there for a couple of days 😯
• I called 2x a day. Once for a status with the nurse at the time she suggested (not meals & meds rotation)
  • and once after dinner I think it was, to talk with DH. Hearing his voice helped me get through 10 days.
• Have a couple of bullet points to ask the nurse or whomever answers the phone re: their observations, how is he doing today? It put my DH on the radar with regular staff who rotated in and had no idea who he was nor his needs, etc.
  • That's how I found out that he wasn't coming out for meals all day the 1st day (he didn't know), and was still wearing the same pull-up for 2-3 days. (And definitely not able to navigate a new bathroom and toilet by himself so it was SOAKED but I had to tell them daily to help him).
  • He was calm and quiet, so he flew under the radar. He looked fine and said Yes, no, etc at appropriate times so they overestimated his processing.
  • Biggest negative was they messed up his meds. Big time. Gave some too frequently and some not at all until his asthma flared up as a result of no maintenance meds. It took a couple of weeks after respite to get him stabilized and back to baseline.
• If you can arrange to have a meal with him before leaving that reassured me and I guess him. He thought he was in a hotel and I was fuzzy on why I needed to be away "overnight" I think I said I had a medical procedure or something, so he was getting a vacation stay. IDK.

The MC cottage was nice, and the staff seemed so as well. It wasn't perfect but they kept him safe.