Respite care for someone with a colostomy?

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Respite care for someone with a colostomy?

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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!

Care Decisions Family Caregiver Home Health Care Respite

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Have you contacted a facility in your area to see if they offer respite care? Some areas offer this. They may not during Covid but you could ask them.

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There was one facility that would, even in COVID, but they required a two week minimum stay, which 1), I can’t afford, and 2), he has really bad delirium (which compromises his safety) in new situations, so I was trying to keep him in a familiar setting in the hopes that it would help him stay oriented.

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It is your father who needs to be able to afford care, not you.

Is his delerium being managed by a geriatric psychiatrist?

Have you gotten him qualified for Medicaid?

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That’s true, Barb. Her dad should pay for it.

Wholeheartedly agree about meds.

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Is your dad on Hospice? If so Medicare does provide for Respite for Hospice patients.
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.

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One word: COVID.

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You might try contacting the company where you get his ostomy supplies, and ask to speak with their ostomy nurse. She may be able to give you some ideas. Also, there are ostomy support groups, they too may have some ideas. My mother has an iliostomy and Alzheimer's. It's such a wicked combination to deal with. I am blessed that my parents elected to move to a graduated care facility when their doctor told them it was time. But until mom's AD advanced to where she needed memory care, helping her deal with the ostomy (no nursing care for that in independent living, nor assisted living) was a daily struggle. During that time I found I got my best tips from ostomy nurses. Sadly, there just isn't much knowledge on dealing with ostomies and dementias as this seems to be the first large scale generation of ostomy patients to have lived long enough to develop dementias. My heart goes out to you. Also, the suggestions to get your dad on medicaid are good suggestions. This too can be a stressful process, and you'll want to get some help, probably from the area agency on aging. It sounds cold to say it is your dad's responsibility to pay but it is true that it is his finances that determine what help you can get. You cannot be held financially responsible for his expenses the way you can for your child's. It is important to keep his finances separate from your own. Your role, aside from loving him, is to advocate, case manage, and care coordinate. Not something any of us are generally prepared for, but support groups help. You will remain in my thoughts.

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Respite care can cause problems. Changes in routine can make a person with dementia go crazy, and start pulling things out like his ostomy bag. Depending on his level of function, they can start kicking staff. They can also stop eating.
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.

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Respite care is a NECESSITY for 99.9% of caregivers. The patient will live for a few days w/o eating if the family goes on a camping trip. And I've never read about anyone getting scabies or lice while in respite, give the OP a break! COVID is also on a drastic DECLINE these days everywhere.

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Call his doctors office. Quite often doctors are invested in or have ties to certain facilities. Maybe able to find you a bed for the days you will be gone. More than likely private pay, but if dad living with you his income should be able to cover a few vacation weeks a year. Dr may have contacts with nursing services as well. You would probably do best to do a trial run with someone first to see how they manage the care your dad needs based on their own nursing experience. There are quite a few older people who have retired from FT employment, but continue to do sitting/caring services.

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

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This is a sad situation and I am sorry you have to endure this. But you and your family must think of YOU first as you are all younger and still supposedly will still be around for a long time. When no one wants to care or can help, you have to consider placing him into a facility where he can be cared for - if you don't want to do this on a permanent basis, find one where you can place him while you go away. You have no other choice I can think of. When people who are ill mentally or physically with demanding needs or bad behavior, there is no choice but to place them - think about it.

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Going with Grandma1954's suggestion, the VA has expanded its caregiving support.    I haven't followed all the changes, but I do recall reading something about respite care.

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.

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Have you tried hospice care. Or put in hospital or nursing home for respite care. You do need to take care of yourself And your family in order to care for your father. I had hospice care come in 2 or 3 times a week. They helped with putting him in hospital so I could rest I slept for almost a week I needed that in order to take care of him when he came home .it was a blessing . He passed at home which was what he wanted. Take care and God bless.
I am shocked at the home care you tried. Try hospice care they do come to the home.

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Hospice care is not elective service that can be used for a temporary situation. If the patient already is on hospice care payable by Medicare then they will come to the home as needed, but they will not provide room and board services.

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Unfortunately it is true most caregiver services will not handle certain medical conditions, particularly if they require constant attention. Your only alternative is to have a family or friend that knows how to handle the patient’s situation. Otherwise you can look for a Nursing Home that will provide the services as a temporary “respite” resident, but it will be expensive, and not covered by Medicare.

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We had a similar situation in seeking Board and Care for my MIL following a hospitalization. None of the B&C homes were prepared for, or licensed, or whatever for an iliostomy. When we mentioned this at the hospital the suggested we talk to the ostomy specialists in Wound Care. We did that and found that they would go to the B&C home to teach them how to care for the ostomy divice as needed. Although MIL did not have dementia and was accustomed to handling her own device, we did need B&C to know what to do, and how often it needed to be done. The B&C was open to that and an ostomy specialist went there and had a session with them prior to MIL moving in. Then the specialist visited a couple more times to see how things were going.

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.

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You deserve a two-week respite from caregiving and time to be with your family. How much was the facility quoting for your dad to stay there for two weeks? He should be paying for that respite care stay for himself.

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$16K for two weeks, which was their minimum. He doesn’t have it. He gets $1500 monthly after Medicare supplement, too much for Medicaid but like $500 leftover after he pays for meds/specialty food requests and bills from last 2 rehab/hospital stays.

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Most agencies hire out aides, aka CNAs. They are not nurses, so they wouldn't be doing anything with a colostomy bag. They aren't even allowed to dispense medication. The are mostly glorified babysitters, with perhaps some minimal cleaning, food prep or bathing/toileting.

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.

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I have only done online Medicaid calculators and they all say he makes too much, but trust me that there’s only a couple of hundred bucks left over each month after he pays for meds/supplies, and rehab/hospital bills. I will see if I can get a free consult meeting with an actual person.

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Imho, you should contact the colostomy company in your town of Manchester, MD. Also, you're not very far from the Baltimore area and you MAY find help there. Respite is a needed avenue for caregivers.

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Some nursing homes will provide respite care. Check local ones. Their nurses are LPNs and can handle ostomy bags as well as medications.

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Why not get a caretaker one day a week so that your Dad can get accustomed to her or him and you can get to know her/him. And then try this person for a week or a few days so that you can get away. Is there any family who can check in on the situation while you are away to make sure things are running smoothly, so that you will feel more comfortable?

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My brother lives 90 minutes away and works 12 hour days and then is dispatching from home until later in the evening, when all the trucks are back in to his company. He is literally working himself to death and gets only 5 paid vacation days a year, so while he’s willing, I’m very adverse to having him get off work at 5, drive 90 minutes here while dispatching and then dispatching here with Dad till midnight, to get up at 5AM and go back. My situation stinks, but so does his and his is every day since COVID (significantly understaffed, no one applying). He comes up on weekends occasionally (while on call, so I see how much he’s on the Phone and working constantly) so I can catch one of my kids games, and does what he can, but really his situation is terrible.

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Respite care for someone with a colostomy?

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