Need Break From Mom 4 More Than a Weekend

Wilted Daughter

I'm mentally, physically drained and a few hours or periodic days break is not enough. When I leave I want to keep going and never come back. I heard there are various types of  'Respite' paid by Medicare/Hospice  or Medicaid Waiver program (Home & Community Based Services (HCBS) and Frail Elder Waiver (FEW)). She has them all, so I need to know how to use the services available. 

• I need a vacation (7 days or more).
• I need mom accessed to know what stage she is in (status) and create a care plan for continued home based care included what to expect.

Mom's 89 (90 in 5 mos.) with moderate Vascular Dementia and no specific care plan for me to follow. I suspect there are other issues (i.e. hoarding, OCD) which I don't know if they are symptoms of the Dementia...it doesn't matter  at this point all behaviors/symptoms need to be managed. She receives more clinical attention for Diabetes than Dementia both issues need to be addressed. 

Any feedback shared knowledge will be appreciated. Thank you.

Deborah 

Rescue mom

Sorry, but I do not know anything about the programs you mentioned. My mom was in Hospice care and I wanted a week break. Her Hospice had a facility where she could stay (no other 24/7 care or staff for in-home care) but they only on a “space available” basis if she was not actively dying.  Plus some specific medical issues that had to be OKed by their doctors, and some payment was required, which I would have gladly paid. But I didn’t get those  details because, basically, there was never “space available.” It was always full of those truly at deaths door. Your Hospice may well be different, just IME.

 I’m sorry. I know those run-away feelings too well. From all I see here, it’s very difficult to get days of respite help unless you hire/pay somebody.

Cynbar

Hospice has a 5 day respite benefit, where they arrange for the patient to go to a facility -----hospice pays for that amount of time as well as transportation back and forth, and they supervise the care. It should be possible for her to stay a few extra days with payment either by Medicaid (if she has full coverage) or private pay. I know at least one poster (looking at you, Rescue Mom)  has said their hospice couldn't/wouldn't arrange a respite when asked. That has not been my experience, our hospice sometimes had difficulties during the pandemic but now has been able to meet all requests (although not necessarily choice of facility.) If your mother is on hospice, talk to her nurse or social worker, they will set it up. However, I am not aware of any other programs for respite except private pay (which is often done but usually with a 2 week minimum.)

Wilted Daughter

Thank you for your responses.

MN Chickadee

This depends on what state you live in. In my state medicaid does cover some respite care for those caring for PWD at home. The elderly waiver program would pay a licensed facility  for respite care under specific parameters on qualifying.  There is usually an established state wide per-day  rate they pay. And I do know of some facilities that accept the payment and provide this care IF they have room. You may have to call around.  Many have a minimum between 10 and 20 days. You might contact your local chapter of the Alzheimers Association or county Agency on Aging to see if they have information on who provides it. If the facility has a social worker they may be able to guide you on the medicaid piece.

MsReliable

Dear Wilted Daughter, I feel for you - I am one too. Taking care of Dad w vascular dementia, HBP and various other bits and bobs after a stroke. 

I am not familiar with the programs you mention. I just want to CONGRATULATE you for stating what YOU need and taking steps to make it happen. That's so hard -everyone relies on the 'dutiful caregiver' to always be there, and they really don't understand what it takes and how critical those breaks are to our physical and mental health, and our ability to have our own lives to whatever extent possible.

Find that respite and definitely take advantage of it. You have earned it.

Good luck.

rzrbaxfan

I don't believe Medicare will help with this.  Not sure about Medicaid.

We use respite care.  We are fortunate to have a place nearby with MC.  The paperwork prior to the first use was horrible.  They quoted a price, and then dinked and dunked a little more out of us. Found out that we pay for two weeks, but the two weeks has to end on the last day of the month, or they charge for an extra week, so now all of our family vacations are in the second half of the month.

All told, it's ok.  She likes it but is ready to get back home when it's done.  It's a nice trial run for when the day comes that I can't do the in-home thing anymore.

Wilted Daughter

 I’m experiencing information overload but what I do know is that depending on the type of “respite” there may be coverage under Medicare (Hospite) or Medicaid which in our state under elderly programs previously described offer “caregiver respite”. 

For Medicare I believe the term used is “hospite” (which is a respite for me) and Medicaid programs use the term “respite”. We can only get in-home care if she has full Medicaid coverage which she does not so fragmented services based on various things (age, medical conditions, nurse assessment…) qualifies for certain services funded by the state and others through Elder Services. 

The PCP can request hospite for medical conditions, evaluations, disease status, etc. (Medicare pays % ?)

Medicaid through local Elder Services provides caregivers respite but I am unfamiliar with the terms, costs, etc. So I sent an email to the case manager for more information (I expect out of pocket costs due to not receiving full Medicaid). 

This is why I don’t use these services as it’s too involved and draining to organize not to mention she is not going to want to go which causes guilt in me. 

Thank you so much for your feedback.