"Ask a hospital social worker" means what, exactly?
July 26, 2017 8:20 AM   Subscribe

I have an older relative who has a rare dementing disorder - the end result is similar to Alzheimer's although the process is very different. At this point, my relative's condition has deteriorated to the point where her partner is having trouble caring for her but would like to keep her at home. How can they find and access specialists in this type of care?

My ill relative is fairly physically healthy, but has reached a point where they are confused, have hallucinations, express a lot of hostility to the caring partner and do not want to do things like get out of bed or be fed. In the past, the caring partner could take them with on errands but now even relatively familiar places outside the home are frightening.

The caring partner would prefer to keep my ill relative in the home as long as possible - to the end, if that works out. At this point, there is some money to hire a part time carer for respite care.

Questions:
1. How can they find the best carer? Someone who has experience with dementia and has more professional qualifications would be best.

2. What kind of specialist can give them advice on things like managing the ill partner's panics and meltdowns, or what kind of home set-up will make it easiest to manage things like bathing when the ill partner does not want to bathe but really needs to?

3. It seems like they need to consult about what state resources are available and what can be paid for through Medicare. (They are not ready for the Medicaid spend-down at this time.) Who can they consult?

4. How can they find a good lawyer or financial adviser? It isn't entirely clear how all this is going to work financially - whether a Medicaid spend-down and a nursing home will become necessary or whether in-home care combined with family care would be best. They also have a child who is not on disability but who has health concerns which make full time work very difficult, and both partners have always wanted to be able to sequester some money for that child in their estate. I know that this may not be possible at this late point, since it seems like you don't really end up with an estate if you do the spend-down, even taking into consideration the assets that can be set aside for the surviving partner.

They are in Indiana. I am able to make some phone calls for them, but it would be much better to give them advice and then have them direct me about what to prioritize.

They have fairly good actual medical care in terms of a neurologist and other doctors.
posted by Frowner to Health & Fitness (8 answers total) 4 users marked this as a favorite
 
A good neurologist or primary care doctor should be able to help with referrals for some of these, especially #2. And the Indiana Alzheimer's Association has a helpline (for "memory loss, dementia and Alzheimer's," so they should be able to help in this case as well).
posted by Mr.Know-it-some at 8:44 AM on July 26, 2017


The Alzheimer's Association, yes. Also there are local agencies who provide advice and support, both publicly funded and privately-run. You want to look into elder care services, specifically for a geriatric case manager.

I'm not sure how much in-home care would be covered by Medicare other than doctor visits etc. But medical costs can be deducted from their income taxes, up to 47% of their income, if they meet certain criteria -- and these costs can include the cost of in-home care. (I would recommend checking with a tax professional on that question, I am not a tax professional.)

I also recommend checking out the blog The Alzheimer's Reading Room. There is some very supportive advice there on how to deal with people with dementia without resorting to medication.
posted by suelac at 9:00 AM on July 26, 2017


If there is an Alzheimer's Association chapter, that may be an excellent resource. There may also be a city-wide or county-wide council on aging which can provide or refer to some resources.

If your relative's primary care physician is not a trained geriatrician, you may consider making the switch to one, or at least having a consultation with a geriatrician. They may in turn refer for neuropsychiatric testing. They also may make other referrals and have ideas on what additional resources may be available. University of Indiana has an excellent geriatrics program, and there are several excellent options in the Chicago area if that is closer to them (PM me if you'd like a name).
posted by honeybee413 at 9:10 AM on July 26, 2017 [1 favorite]


I don't know about yours, but my county has an absolutely wonderful agency called Office for the Aging. If you were living here, they would absolutely be the ones to go to.
posted by The Underpants Monster at 9:15 AM on July 26, 2017 [1 favorite]


I agree with The Underpants Monster -- it looks like you can find the contact information for the appropriate office for your parents' county here.
posted by tivalasvegas at 9:27 AM on July 26, 2017 [1 favorite]


Is there a national, state, or local organization for your relative's specific dementia disorder? If so, that would be one of the resources to check for information on how to find resources and provide care for your relative. My mom has Lewy Body Dementia, and through the national organization's website I was able to find a caregiver's support group in our own town. The support group has information about a lot of local resources and recommendations on how to handle the legal stuff, as well as knowing who are the best local medical practitioners for providing diagnosis and care.

Through the local support group we also get news about new local resources as they are being planned or become available. Frankly, talking with people who are in the same situation is often more helpful than starting with agencies, because they've been through it already and can help you prioritize and know in advance what to expect.

Finding good home care can be exceedingly difficult, because, frankly, the field pays so poorly and there isn't much in the way of training. In my state, home care agencies have often hired people with criminal backgrounds simply because they can't find anybody else. So screen the prospective caregivers carefully and have cameras set up to remotely monitor the situation. A relative by marriage with dementia recently died; we discovered only then that his caregiver had gotten him to take out a credit card and add her to the account. She ran up over $40,000 in credit card debt in his name on an account no one but the caregiver knew he'd had.
posted by Lunaloon at 9:36 AM on July 26, 2017 [2 favorites]


Depending on where in Indiana, ping Thorzdad. He got some good advice in this thread and may have other information that might be able to help even though the situations aren't exactly the same.
posted by TravellingCari at 10:17 AM on July 26, 2017


I am a social worker, not in Indiana. I have not worked with older adults, but there are social workers that specialize in this area. If your relative is currently hospitalized, her partner should be able to ask a nurse or doctor involved in her treatment about speaking with a hospital social worker experienced with gerontology regarding discharge issues and maintaining your relative at home. That social worker should be able to provide referrals to agencies and services to follow up with after discharge, and may schedule intial appointments. If your relative is not currently in the hospital, the other suggestions in this thread are very good--I would try the local Area Agency on Aging first, as they're likely to be able to direct you to most, if not all, of the services/providers you need.
posted by epj at 4:21 PM on July 26, 2017 [1 favorite]


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