NewlyGiving Asked August 5, 2024
How can I “schedule” respite care during an upcoming family cruise. I'm fearing cancellation.
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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.
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You will be on your trip so can’t take him back home until you return.
Also, check with your homeowners insurance.
I would ask her doctor to make the referral to place her in a care facility.
Use her income to pay for it. You may have to pay additional, which is worth the cost, if you can afford it, for the peace of mind that she is safe and cared for.
Do it before you leave, so you can help her adjust and be available if the staff has any additional questions.
When you return from your travels, you can either have her transferred back to your home, or if the arrangement is working well, you might consider letting her stay there long term. If she is on a waiting list for another facility, that may soon become available.
In my experience, it is a mistake to ask the care facility to admit a patient for a short term respite stay. Many do no want to do that. However, you are free to take her out of there any time you want for any reason. Just get her admitted - with the doctor's help, and make the decisions that are best for her later.
Make it CLEAR to the doctor, and to the case manager, if there is one, that YOU CAN NOT CARE FOR HER. If she is deemed a vulnerable adult, the county case manager will work to help find a suitable arrangement to ensure her needs are met.
i would recommend setting up a regular weekly schedule for respite support - then when you go away you will already have had the chance to vet the aide and try to continue thereafter for everyone’s sake.
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!
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.
best of luck!
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!
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.
If you cannot afford to pay for Respite care, maybe you cannot afford to go on a cruise.
She said she booked it before her mother moved into her home. Respite Care is often way more expensive than most cruises!
She also said it was a family cruise... perhaps someone else has paid for it? Perhaps she won it? People go on cruises all the time at someone else's expense. How she paid for it was not necessary info.
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.
While expensive, they offer 24-7 overnight care-givers.
Additionally, you need to do local outreach:
- Churches
- Friends ... friends of friends
- Multi-media, i.e., Facebook. Ask friends to list/help you list
- Anywhere you can post this 'caregiving' needs - any bulletin board.
Don't understand what you mean, adding you mom in home? Adding her to what - the cruise?
You can get cruise cancellation insurance-I am not clear if this was done or why not, if you didn't get cancellation insurance.
Perhaps the cruise was not 'a good idea' - and perhaps more local stay-vacations would have been more appropriate considering the needs / responsibilities required to care for your mother.
Have interview questions ready for any / all caregivers. Have a list of 'to dos' available and ask for references. Then do call references.
I understand your exhaustion. You need help yourself. However, if you do not get the care you need, you will not be available to help your mom. You must take care of yourself.
To avoid a crisis, you need to plan in advance.
You do sound like you are in overwhelm and need more support.
See if you can find a social worker or local respite care agency.
If you do not know how to research, find a student in high school or college to help you - ask your friends for referrals to these 'kids' who are whizzes with these things (computer / multi-media).
* Be careful with posting. Do not post your address.
* When you have a caregiver there, hide all valuables. Some do steal.
Please take care of yourself.
Gena / Touch Matters
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.
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!