Respite care for vacation - does this exist?

PhillyJoe

We're looking for respite care for my MiL (mid-staged, moderate Alzheimer's) so that we can take our first vacation in nearly three years. We're having a hard time finding anyone who will take her at all, let alone for less than 30 days minimum (who can go away for 30 days and still need respite care services?). And even if we find a place and can afford it, I'm worried about her quality of life, there. She requires frequent trips to the bathroom (once or twice an hour) and I fear that they will simply slap a diaper on her and let her sit in it. Does anyone have experience with such services, positive or negative?

loveskitties

Can you tell us a location you are looking at for respite care?

Many of the long term care facilities have respite care.  The minimum time varies by facility.

Like any placement, you need to see the facility and talk with staff about expectations and what they will do.

You mention that you have had difficulty with any who will take her.  Have they said why?  Is there an issue with her needs or behaviors which don't work for them?

Wilted Daughter

As stated, some long-term care facilities provide respite and depending on the state you may have access to paid Medicaid respite (if you qualify). With that said there still may be a long wait for a bed. There are not many options. Check local elder services for health care/PCA providers in your area as they use private agencies but the rate for services is different than direct pay (somewhat discounted). 

Wish you all the rest you deserve!!

Stuck in the middle

30 days sounds perfect to me.  A week to pack and organize, two weeks away (one to decompress and one to truly relax), and a week to unpack and clean up whatever defugalty occurred while you were away.  Have fun!

willwen

I'd be happy with 30 days off if I can afford it, but I would be worried under respite care she turns into a different person. Then I would need to start all over again with my coping strategies.... sucks...

You mention frequent toilet visits. I have the same problem with my LO. Sometimes I wonder if it's a mental or actual physical issue (it's been ongoing for a couple of years so I doubt it's an infection) .

harshedbuzz

PhillyJoe-

In the before (COVID) there were a few places near me that offered shorter respite stays. (If your screen name speaks to where you live, I'm local to you). Perhaps facilities are less able to be flexible at a time when many are short-staffed. before we placed dad, I had done some research around this as we wanted to attend an out-of-state family funeral planned for May.

That said, most MCFs do look for a month-long commitment. The MCF where dad was only did monthly stays but at least one did 2-week minimums. I found the SNF more flexible in terms of being able to pay for as much or as little time as needed. Benefits of selecting a MCF aside from it being secure with no need to use wander alarm bracelets on individual residents, is that care will be dementia-informed. Staff will be trained and experienced in dementia care and activities will be appropriate to those who have experienced a cognitive shift. 

I do hear you on the cost, especially when a respite-stay for your LO more than doubles the cost of a week's vacation. Four years ago, respite at dad's MCF was about $7300/month for a private room. The SNF was close to $500/day out-of-pocket for a semi-private room and agency caregivers would have cost about $750 assuming the PWD was not a 2-person lift. You could probably hire someone privately for less, but there are so many ways that could go sideways especially if this isn't a person well-known to you.

I can't speak to all facilities, but the two where dad stayed during his dementia (a MCF and a SNF) were both very professionally run. I found approaching them expecting them to provide quality care rather than with an attitude that they'll be neglecting him more conducive to a collaborative care relationship assuming you've chosen well. This is another advantage to a month-long respite, you can place your MIL and monitor the care she's getting and make changes before you leave so you can relax while you're away. It's sort of like choosing a daycare facility or babysitter- trust but verify. 

Does her doctor have any idea why she needs to be toileted every 1-2 hours? Does she actually produce urine at each visit? Has she been screened for an otherwise symptomless UTI? Is this more of a situation where this behavior stems from a loss of orientation to time, a bid for attention or anxiety? 

Dad's MCF did check on residents hourly when they were awake and would offer to toilet them at each visit. Most residents did use incontinence underwear which was checked if the resident declined a trip to the bathroom and was known to not be independent in this area. I never happened on dad who had a visit from mom or me most days sitting in filth or with a urine-soaked Depends.

Good luck going forward. I hope you can make this work for your family.

HB

Cynbar

I had no problem arranging a respite for my DH when I had hip surgery awhile back. Local facilities here are pretty open to it, both nursing homes and memory care. There was a 2 week minimum, which worked out fine for me. I decided on memory care --- the staff went over his care needs with me before admission and were open to providing the assistance he needed. This was only our experience, but all went well and DH even enjoyed it. I felt very confident he was well cared for.

PhillyJoe

Thanks for the responses, everyone, and my apologies for the delay in getting back to you all -- I had trouble logging into the site for a few days there.

To answer some questions posed;

• I'm in the Philadelphia area, specifically in Delaware County
• Thirty days would indeed be perfect, but for the expense; at even "just" $200/day, that would be $6,000 -- that's a lot of money, at least for us
• I do worry about the changes in personality that she will undergo, but I don't know that there's any way to avoid it.
• re: many trips to the bathroom -- she has suffered from this for at least a decade, long preceding the Alzheimer's diagnosis
• I believe that a lot of the difficulty we're facing is due to staffing shortages; we've found a lot of places advertise that they offer this service but then when you call they don't, or it's the 30-day minimum

I do have a bit of anxiety around placing her in anyone else's care, especially if we're an 8-hour drive away. But I know that no decent place would let anyone sit in a soiled undergarment all day; that's just my fears and frustrations talking.

My grandfather was in a wonderful facility for almost five years, but I saw the difference in care that some residents got; those whose family members showed up often and unscheduled tended to get a little better care than those whose family members were absent. It's not so much neglect as it is advocacy and oversight.

harshedbuzz

PhillyJoe-

I'm in Bucks County, but when I was looking Chandler Hall was one of the places that offered a 2 week stay in their MC unit. I don't know if that is still the case, but their parent company Kendal has a community in Kennett Square. I don't know if they even offer MC, but you could call. 

HB

Arrowhead

My wife is in late stage, moderate Alzheimer's. I recently took a vacation without her. I left her in the care of a friend during the days and a daughter at night. Perhaps you can find family and/or friends to do the same.

PhillyJoe

Thank you, HB -- we'll check into them (in either/both counties).

Arrowhead -- for various reasons (some good, some not so good) we're on our own at the moment.