Medicare respite

JDancer

Has anyone used the 5 days of respite provided by Medicare? Was you LO on hospice at the time? What type of facility were they in? How did it go?

Jeanne C.

We used Medicare hospice respite just this past week. It was a bit of a mixed bag. The SNF that was arranged was unacceptable and I didn't leave him there (literally turned around and marched him right out). The next day, I took him to the inpatient facility run by his hospice agency. It wasn't really an appropriate setting for him. They kept him safe, but struggled with his pacing and agitation. Frankly, they gave him too many PRN doses of his comfort meds. They called me on day 3 of 5 saying they were going to put him on IV sedation and I refused and picked him up as soon as I could get back (a couple of hours later). I took him home, but 2 days later he's still feeling the effects of the meds - too unstable to stand on his own and quite a bit more out of it than usual. I don't want to dissuade you from using the service. Just be aware that it may not be perfect.

ButterflyWings

I did not take DH's comfort kit with him, because the intake questions were so focused on access to meds that we never used at home, and I feared they might start experimenting. I also did not grant permission for the respite Dr. to prescribe or change any meds. I wanted to be notified in advance if there were any issues because he was only late Stage 4 or early 5 and super stable when he went in.

As it is, they messed up his standard meds anyway. Not giving them in the right quantity or schedule which of course threw him off. Seroquel. The worst was skipping his asthma maintenance medication for several days which (of course) resulted in asthma exacerbation and required the nebulizer 4-6 times a day, which should not even have been needed had they read and followed the instructions I was required to write down and submit in advance. And that meant MORE work for the nurse, not less — I did learn they prefer to administer meds between 10a and 8p, which meant his best schedule was agreed to when we interviewed but did not pan out in real life once there.

Advice - Ask to see the care plan notes for your DH before you leave them there, including the med list and schedule. That way you can correct any errors then. If you have a trusted family member or friend who can visit while you are away, that can help make sure the facility takes good care of your LO. You have other eyes

Setting- The MC cottage setting was great and in theory allowed for respite patients to be there with PWDs at a similar stage.

Personnel and service- Staff was super nice and seemed qualified, but he wasn't there long enough for them to get to know his needs and he was a little neglected honestly(not horribly), but he would answer the question "are you all set, or do you need anything?" with a "yes" or "no", not really understanding what they were asking. So they left him to his own devices. When he urinated all over himself on Day 4 in the public room they realized he wasn't changing his own pull ups (duh). The aide who told me, realized he was embarrassed and said she got help to get him cleaned up and changed.

Overall - If he didn't need help, he wouldn't have been there so those experiences were disappointing. I never expected that and couldn't have known to ask in advance. And I spent a good 2 hours over the preceding week, reviewing with both the intake director (sales/marketing), and part of that time with the lead nurse so… I feel like my expectations were reasonable and definitely not met in that regard. They assumed he was fine, and in MC of all places I expected more awareness of dementia needs, apart from the stereotypes.

They kept him safe, and as a wanderer that was key. But I spent a couple of weeks getting him back to baseline for med mismanagement, on top of just getting him reacclimated to having been away from home. YMMV. If you need a break, I say take it.