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My mom has dementia and outside of my husband and daughters (who all work) we have no other families members to call on, even for overnight care. I’ve had her in home since March w/no break. I’m a disabled cardiac patient who has way more medical issues than she does and am beyond exhausted. Currently on the Medicaid funding waitlist. I’ve already had 1 hospitalization for myself and 1 for my mom since March. I feel so lost and am not giving full attention to my own health. I’m trying to avoid a crisis.

When I had to arrange for respite care for my mom so my husband and I could take a cruise for our 25th anniversary, I did so through a rehab center that was attached to a nursing home. You might try rehab centers by you, often they have beds available since many people stay in rehab on a short-term basis and the beds tend to "turn over". Mom had to self-pay for the time but got some reimbursement back from her long-term care insurance.

The hardest part for me, frankly, was not finding a facility, but finding an independent RN to come into our home and evaluate my mom as to what sort of care she would need. It was a requirement in NY that before any person is admitted into a care facility, they must be evaluated; it has to be done by an RN who has the proper credentials and training. Usually, people go into rehab centers from the hospital, and the hospital has the personnel to do the evaluation; it was so much harder to find someone to come into the home to do it. And there was a ***very*** specific time frame in which this had to be done, it was something like between 21 and 28 days before the first day. The facility warned me very specifically that one day too early or late, and they would have to refuse to take her.

So, my advice to you is when you find a place for mom's respite, make sure you get very explicit instructions as to what you/mom will need to do before you bring mom; don't just assume it's like a hotel where you show up for your "reservation" and mom gets shown to her room. Make sure you know exactly what paperwork you will need, if she will need an evaluation/doctor recommendation, etc. It would suck to think you have everything arranged to be able to get respite, only to have the rug pulled out from under you because you didn't have the right paperwork in order.

Good luck!
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Reply to notgoodenough
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NewlyGiving Aug 8, 2024
Wow…thank you so much for this insight. I’m definitely going to take your good advice. Be blessed
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Just a thought, what about planning on dropping mom off early, this way you can get her set up for a week, two weeks, then you get your vacation and a little time at home without mom.

Seems like that would give you time to ensure she has a place and it would give you time to feel comfortable with her care. Nothing wrong with extending respite on either or both ends of a vacation.
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Reply to Isthisrealyreal
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notgoodenough Aug 11, 2024
This is a great idea from ITRR. It also gives you a chance to get things back in order before/after traveling, laundry, grocery shopping, errands, etc.
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I signed my husband up for hospice and they pay fir 5 days respite every 60 days.the good news is it's a great break.the bad news is its in a nursing/rehab facility and both totally abused him by neglect!! It was harder on me when he came home. No more! I found a small group home here and not cheap but I can't compromise my health anymore. Good luck
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Reply to Cruiseforever
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NEWLYGIVING, I am taking a respite trip to Iceland with friends for 10 days at beginning of September. I made the decision fully aware of the responsibility I have for my husband with mid stage Alzheimers.

The administrative responsibilities of being a primary caregiver should not be underestimated. I started planning one year ago.

We are using an agency part time in the home already. I alerted them I would be needing full time care. That has changed since then. Our eldest son chose to take vacation and stay with his dad at night. (Perhaps your daughter would consider something like this.) So, aid will arrive at 8 AM and leave at 8 PM each day.

It will cost a small fortune but I have paid trip expenses over the last year.

I thank myself daily for planning the trip as my departure date approaches. I am officially burned out! I don't think I could go on without this chance to get away. But, like many on this forum, I suppose I could have if I didn't have this get-away already arranged.

I bought trip insurance.

I have increased the hours aids are here for the last few weeks to get them and my husband accustomed to me not being the one to do everything.

I hope you will find the right combo to make this happen. But, if you can't, please don't beat yourself up over the money already spent. It is a sunk cast either way. You did not know your lives would be turned upside down by your mother's illness. I realize the trip is special because it is with family. But, if I were in your situation and it did not work out, I would immediately call on those same family members to cover for you in the near future. They will be in just the right, sympathetic mindset to lend a hand. I can imagine a sister or cousin or brother saying, "I'm so sorry, Sis. I wish there was something I could do to make it happen for you." You then can say, "There is something. I want to go to ---- next month. You can stay with Mom then."

My fingers are crossed for you. This journey is not for the feint of heart. Caring for adementia patient is a puzzling challenge. One can only do what what one can. Yet, the standard seems to demand primary caregivers suffer so that their person does not. I remind myself daily that I am only human and no sacrifice will make my husband's diagnosis any less damaging. Like you, I have medical issues. Please do not compromise your health for her care. It will not change the final outcome for her but could shorten your life!
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ElizabethAR37 Aug 11, 2024
Just looked at your profile. Good move for insisting that his long-term care insurance be maintained. My husband (94) and I (87) were tempted to throw in the towel and cancel ours a couple of years ago when there was a HUGE premium increase. However, like you, we decided to keep it despite the very significant annual premium outlay. We haven't needed it yet and the premiums have continued to increase, but when/if we are assessed as needing medically necessary care, it should pay for an estimated 30-40% of the astronomical cost. At least, we hope so!
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Check with your local Council on Aging. In our area, they offer grants for respite care and the current fiscal year began either June or July 1st so it is a good time to make a request. It takes time to process the request so start checking right away.
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RedVanAnnie Aug 11, 2024
You are so right that I have no idea who might be paying for NewlyGiving's cruise, nor is it any of my business. It does sound like NGing is dealing with more than she can manage with her mother in the home. I hope her mother qualifies soon for Medicaid assistance and I apologize for my unnecessarily snarky remark.
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Ask any age care service to tell you where respite is available locally. Then contact the respite service, and find out the deal.
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Reply to MargaretMcKen
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Call local memory care centers and ask about respite care services. Many offer this in addition to full time care. There may also be smaller board and care providers in your area to check on. I hope you’ll go on the cruise and have a great trip
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Reply to Daughterof1930
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NewlyGiving Aug 5, 2024
Thank you. I’ve called a few and no one can actually put us on their calendar which is what’s so difficult
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The good news is that many facilities offer respite care.

The bad news is that someone—either her or her family—will have to pay for it. $300 a day at least, $2100 a week.

If mom doesn’t have it, ask your family if they’d all be willing to share the costs for mom while y’all are vacationing. If they don’t, yes I would cancel if you can rather than fronting Moms bill by yourself. They should be grateful that they aren’t the ones sharing their home with a dementia patient. And if they all can afford a cruise, they can chip in a grand or whatever to pay for moms respite.
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Reply to PeggySue2020
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Newly, I googled respite homes in Tampa and got lots of information. You will probably have to call every single place as some did not specify short term stays.

You can do this, you just have to be persistent until you find the place. Take a breath and dial away, you really need to take this much anticipated vacation, for your own well-being.
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Reply to Isthisrealyreal
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I live in the Tampa Bay Area also and fully understand what you're dealing with. The issue perhaps isn't the expense involved with self pay respite care, the issue is finding a facility in advance that will allow you to make a firm reservation for your LO. I've found that many local facilities here offer respite care, but generally they won't accept reservations in advance - they will accept your LO for respite care ONLY if there's an open bed on the day that you need to have your LO admitted. I found getting guidance from our local Agency on Ageing to be useless.

My personal issue with hiring a 24/7 in-home agency is worries regarding theft - I cannot lock all the valuables up when I leave the house. Also, in-home agencies will not dole out medications for your LO - so unless you pre-package all the daily meds into daily pill packets you will need to pay to have an actual RN come and distribute the meds daily.

I've been my LO's primary caregiver for 4.5 years and still have not been able to arrange a respite break for myself, as I haven't found an adequate solution for booking my own travel plans and coordinating respite care for my LO to match my travel dates.

It might be easier for you, though, depending on the level of care that your mother requires. Start by calling local assisted living facilities to see if your mother would even qualify for respite care in their facility, and then attack how to schedule it.

Please let us know if you find a way to arrange respite care in the Tampa area, because I need it badly myself.

Best wishes and bon voyage!
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Reply to LostinPlace
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AliOJ58 Aug 12, 2024
We have a home
security system -
cameras protect everyone.
also took her most valuables for safe keeping - though you can get a gun safe from Home Depot (works
for medication too)
set up pills in weekly pill boxes as well all have with no issues from agency or aid.
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