I am caring for my bedridden father in my home (for almost a year now) and I just would like to take a short break with my family (wanted to try a three day camping trip, close by in case he became delirious with the change in routine). I cannot find any respite caregiving services for him, because he has a colostomy he can’t manage independently (due to dementia). None of the caregiving services I’ve contacted will do this (I’ve tried the 3 biggest companies in the area- I don’t want to advertise privately because I’m afraid I’ll leave on the trip, and someone won’t show up and he will be all alone- with no way to tell me no one came.) I really don’t mind all the work of caregiving, but the thought that my kids and husband and I can never go on a trip together (or even leave the house all together at the same time for a day trip, because his output is very unpredictable) is overwhelming and frankly depressing. Any ideas or leads? Thank you!
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Have you tried searching for 'private duty nurse in' {STATE}
This is one that popped up on search:
http://www.nursebankofmd.com/
They do list respite care and dementia, among others, and are RNs, so they should be able to match you up with someone. Of course they don't list the hourly cost, which may be prohibitive.
On the issue of Medicaid: I didn't have to use Medicaid for my mother, so I'm not aware of everything about it. I do know there are income limits, but those are different in each state but also different for the type of Medicaid: Medicaid insurance (vs getting private insurance), Long Term Care (LTC) and Medicaid Waivers for in-home care. I haven't been able to locate anything yet, but I would think that excessive medical care would be deductible (aka income would be the adjusted gross because of qualified deductions.) Have you spoken with anyone in the Medicaid office or to an EC atty (many will give a free initial consult - just be sure to have all questions and relevant information ready for that consult, to get the best bang for your buck - it should be dad's buck, if/when it comes time to pay.) It might be worth exploring this further. Even if you prefer to keep him home, he might qualify for some in-home care, giving you a break.
So, maybe talk to your insurance provider within Medicare to see if they have ideas, or a hospital social worker, or any support groups for ostomy wearers.
I am shocked at the home care you tried. Try hospice care they do come to the home.
https://www.va.gov/GERIATRICS/pages/Respite_Care.asp
I don't know how COVID affects this program though.
Your post reminded me of one of the stories in a Chicken Soup series: Tough Times, Tough People. The situation was different; this was during the 2008 financial crisis. A couple chose an inexpensive alternate to a vacation, stayed home, and explored their own area, learning more about it as well as meeting people, and enjoying themselves w/o having the leave the area.
I found some very long, huge links, but you could get more just by searching on "Sally Friedman, In Praise of the Staycation". One adaptation that could be made is that either you or your husband spend some time away from the home, while the others stay there to help with your father.
That way each person gets a small vacation, but the family is still available to help him. Rotating vacations also gives your family something to look forward to.
Can you pitch a tent in your back yard, and pretend to be camping out...and away?
Another inspirational story is by Deanna Lowery, "Better than a Tent". Neither are directly related to home care, but they reflect how people in very difficult situations find ways to cope.
And it's not my intent to trivialize your frustration; I can certainly understand it. I'm just applying some techniques I learned in the Alz. Assn. "Creating Confident Caregivers" educational series. One very helpful technique was kind of a geometric equation: A=B but A can also = 1/2 B +1/2 C, which is why I suggested taking different relief times.
If doctor is of no help, call your area Aging Services. Or check online to see if they advertise short term facility care. Taking him out of the house would be my Plan B. Plan A would be to bring someone in to his familiar territory so as not to create confusion for him
And whatever contagious disease is going around in a nursing facility like nursing home, it spreads around. Scabies, lice, COVID, are among a few things he can get.
You can contact an Assisted Living or Skilled Nursing facility and ask if they will take him for 3 days, 5, days however long you expect to be gone.
Dad pays for respite not you.
If dad is a Veteran the VA may also provide some help. (and depending on when and where he served that could truly impact the amount of help you can get. If he is a Veteran contact your local Veterans Assistance Commission they will provide the information and the service is free.
Is his delerium being managed by a geriatric psychiatrist?
Have you gotten him qualified for Medicaid?
Wholeheartedly agree about meds.