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Respite Care for My LO - A Good Experience
FTDCaregiver
Posted: Wednesday, April 20, 2022 2:20 PM
Joined: 12/15/2021
Posts: 44


Hello - I had to retire early to care for my wife full time as she has early onset FTD.  Both in our 50s, I've not being able to get away for 2 years now, getting our estate in order, securing Medicare, finalizing her diagnosis and enrolling her in our local PACE program, doing the legwork with our assigned PACE caseworker, finally found an assisted living center willing to do respite care, so many would not provide respite care as an option.  I did some research before scheduling a visit with the administrator for a tour.  Though they passed prior state audits, I found/reviewed a past state agency investigation report (within the past 2 years) substantiating abuse and cover up by the prior administrator.  Though I had doubts walking into the visit, after the tour and asking questions, I learned involved staff were let go.  I then shared information on my wife's challenging condition relative to the much older population present, both the administrator and I agreed we'd try a weekend visit to see how it goes. You see, my wife is still very active, a pacer, shadows and talks constantly (she has the aphasia variant).  Though she doesn't make sense when she talks and her desire to be active are therapeutic for her as she's working out her anxiety yet still communicating in her own way, yet this may pose extra work for staff and may affect other residents as well in having my bumblebee of a wife buzzing around all day.  I called the next day to learn she hadn't slept all night and shadowed the care worker throughout the night. I could hear my wife in the background...bzzzzzzz.  She finally slept a bit in a chair the next day but wouldn't use her room.  Though she's on medication for both anxiety and sleep, she's done well at home, but due to change in her environment, her behavior was expected, and I warned them this would happen.  I just spoke to the administrator today as a follow-up to see if they'll take her again and was pleased to hear that they would.  I found out she assigned more experienced workers to my wife's memory care unit as well.  Further, she mentioned that she added and extra care worker (part time during the day) to help out when my wife shows up took me up on my suggestion to get a  Spodify account, so they'll be able to play her favorite Greek music which helps her calm down.  Also told her to use YouTube on TV for greek hits as well during the evening if she's up. Overall a great experience and I think alot was learned by all on working together on a plan for care and adapt when challenges pop up.  Very positive experience!