Everyone –
OK–I need your help–please read this description of my mom’s condition and help me answer the questions at the end:
My mom’s cognition has rapidly changed for the worst since March 25th, and she has been completely and totally incontinent since May 19th. I’ve visited her family doc and her geriatric psychiatrist, and we’re beginning the process of figuring out what’s happening.
All tests looking for physical issues have come back negative.
So far, her Geriatric Psychiatrist has said let’s just tweak her existing meds to improve her cognition–which, we’ve done–with no improvement in outcomes. He is reluctant to treat her for Dementia because he believed she had a UTI. (She doesn’t).
Just to give you an sense of what’s happening, mom went through 4 Depends in less than 12 hours and still managed to soak 2 pairs of pants and her bed. And she has plastic covers over her Depends and is sleeping on a waterproof special incontinence pad. And the bathroom is like 10 feet away.
I did manage to get her to take a bath yesterday, which was great for her.
And, she’s agreeing to shoot for bathing everyday.
Next step is for her Family Doctor and Geriatric Psychiatrist to coordinate on her test results–and hopefully have some workable suggestions for us.
In the meantime, I am visiting facilities who my be able to admit her–despite her incontinence–that’s a deal-breaker for a lot of them.
And, it’s only an issue for me because of the BEDSORE issue. Apparently, those can become very dangerous, very quickly, and with the baby, the dogs, and what I already do for my mom, I’m afraid I won’t be able to manage that too. The key is to keep her clean and dry, and that takes like hourly monitoring. Beyond my capability at this point with my other responsibilities.
QUESTIONS FOR YOU:
–what’s going on with this incontinence? Mom says it’s mostly happening at night and by the time she wakes it’s just streaming down the bed.
–how could it be penetrating her Depends and plastic covers?
–are there extra strength super-dooper Depends?
–is there any treatment beyond hourly trips to the loo? They aren’t working.
–how quickly do lesions/bedsores go from stage #1 to really really bad if she keeps sitting in wet?
–do the Depends actually keep moisture away from her tooosh? We are using a special cream and medical wipes to keep the moisture at bay.
–how can my husband and I protect our own finances? We’re in around $100,000+ at this point and I understand that Dementia/Incontinence care facilities are $6,000 + a month. Mom makes $2,000/month. Dave and I want to provide for our own aging and our own family and are feeling very tapped out. Everytime I talk to the Area Agency on Aging, or try to sign up for Medicare or social services, they say she makes too much to qualify for any help.
But then, other people say with her blindness, that she should automatically be on Medicaid or some other services? She is on SSDI. ????????
Who can I talk to about the finances? We’ve sought help from a family lawyer to pursue making my mother a ward of the state financially (even though I felt like I was giving my dog to the pound, which I would never do), and the lawyer’s first question was, “how does that help your mother?”—answer, it doesn’t. It’s awful and gut-wrenching. And yet, so is the idea of me being dependent on my own children eventually because I spent all my retirement savings on helping my mother. Having been in this spot, I’m LOATHE to do this to my own child. (Everyone, please buy yourself Long Term Care insurance today.)
–Are there facilities that accept people with incontinence?
PLEASE share your experiences and knowledge with me. Thank you!
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I wish I had answers for you, Tara. What a nightmare this must be for you. I will be praying for you. I hope others will see your post and be able to give you direction or that the drs. will be able to give you direction.
Sharon
Tara, it seems to me that the AAA and the attorney should be able to provide you with better information than what you’re getting. Is this an attorney that practices specifically in elder law? The social workers at the facilities should be providing you with the information you need. Here are some random thoughts to consider, but some of the answers may be State specific.
1) There is no reason you should have to make your mother a ward of the state. That’s for people that have no one else in their lives able to act as power of attorney.
2) $6,000 a month is probably accurate, but just because she can’t afford that doesn’t mean she can’t go. YOU do not have to pay the difference. You should speak with a variety of facilities. Some are strictly private pay while others are a mixture of private pay and Medicaid funded. I’ve never heard of a dementia specific facility that does not take someone with incontinence. It comes with the territory.
3) “Facility” is a very general term. Different facilities provide different levels of care. So how would the 6k cost be covered if she only has 2k a month? What would happen (again, specifics depend on your State’s rules) is that she’d probably be tested for her level of care needs and qualify (or not) for a specific level of care. With her blindness, incontinence, bedsores and dementia, she “should” qualify for something, but that’s hard to say without knowing many more details. So, saying she qualifies, the 2k a month she makes would go to the facility and Medicaid would pick up the difference.
4) Consider speaking with an eligibility specialist at your State’s Office on Aging, which you can find here: http://www.elderguru.com/resources/ – they should be able to provide state specific information. Each state has its own requirements for long-term care under their State Medicaid Plan.
5) Has she officially been diagnosed with dementia? I worked with a woman once that we all thought had severe dementia. Turns out after her thyroid was corrected with medication she turned completely around and no longer qualified to stay at the nursing home. It sounds like you’re on top of this between your doc and geriatric psychiatrist (psychologist?), however.
I provide these thoughts somewhat reluctantly, because it’s exceptionally hard to give good advice without knowing your State’s requirements and seeing your mom. It’s one thing to hear a family member speak about the condition, quite another to assess it for yourself. My next steps would be to speak with social workers at long-term care facilities, speak with someone in your State’s Office on Aging, and keep pushing the doctor. The Area Agency staff may be looking at other in-home care programs, not long-term care facility eligibility – ? Again, very hard to provide online advice without personally knowing your situation.
Lastly, long-term care insurance is smart, but only for certain people. People that are in low income brackets, it usually doesn’t make sense, because Medicaid kicks in. People in very high income brackets, it usually doesn’t make sense, because they can afford it anyway. It’s (generally) the people in the middle income tax brackets that have assets they want to protect where LTC insurance makes the most sense.
I hope this has helped. Good luck – keep us posted.
- Derrick
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Hi Tara!
So glad you reached out for help. Just want to add a few suggestions: We did a talk show last week on incontinence and answered some of your questions; here’s the link to the show: http://www.blogtalkradio.com/Caregiving/2009/05/28/Managing-Dementia-on-Your-Caregiving-Journey
Even though you’ve struggled with getting answers at your local Area Agency on Aging, call back again and ask to speak to the caregiver specialist. Explain your situation and ask about applying for Medicaid for your mom as well as information about facilities that may be appropriate. In addition, ask about any home care benefits your mom may receive–it would be great to have a home health aide help out a few days a week.
My other suggestion would be to consider hiring a geriatric care manager, who can come to your home, complete an assessment and refer you to local facilities that would be best for your mother. She also can refer you to a elder law attorney who can help as well as help tackle the red tape involved in applying for Medicaid. Often times, it’s money well spent for a professional who can save you from spinning your wheels. You can search for a care manager at http://www.caremanager.org. You also can search for elderlaw attorneys here: http://www.naela.org/
Because your mom has limited resources, it’s important to begin looking for facilities ASAP. You may find waiting lists at facilities.
Please keep us posted!