Where can we find care for my Mom with Alzheimers?
June 10, 2010 6:20 PM   Subscribe

Mom's Alzheimer's has us almost to the breaking point and we're not sure where to go from here. Where can we turn?

Sorry, but this is going to be a little long. I'll try not to drag it out.

My family is large, and scattered across the country. Mom and Dad, and my youngest brother, who is mentally handicapped, all lived together outside Pittsburgh. Dad was retired, in his early eighties, and was the caregiver for my Mom, who was diagnosed a couple of years ago with Alzheimers. The disease was probably well advanced by the time she was diagnosed, as both she and Dad were probably in denial for a long time. Over the last few months of last year, Mom became increasingly burdensome for Dad, and he began to call us in secret, asking us to call back and engage Mom for a little while, to give him some respite. On occasion, she would fly into a rage at some imagined slight, and every so often would punch or slap him. Dad was a saint, and never once blamed her. We were in the process of convincing him to move into assisted living.

Mom and Dad came to visit us for Christmas last December, to spend the holidays with their two young granddaughters. Our hopes of one last Christmas together were dashed when Dad suffered a severe stroke in our home on Christmas Eve. He never recovered, and passed away after a couple of weeks. It was the end of Mom's world. She had lived in a beautiful home, with a loving, devoted husband who cared for her beyond his capacity to do so (in hindsight, the strain of it probably contributed to his death). Now, she had lost her husband of sixty years, her sole caregiver, and her home, which she will never see again.

Unable to send Mom home, we kept her in our home for a month. The strain nearly tore us apart, and made my little girls afraid of their Grandma. Finally, we placed Mom in a very nice, but very expensive, assisted living facility in New Jersey, near two of my brothers who are empty-nesters and have more time and more family members to share the burden.

While in assisted living Mom adapted reasonably well in some ways, but became increasingly difficult in others. She resisted attempts to help her with personal hygiene, and tended to attach herself to one or another tenant and become obsessive about being not being separated from them. Occasionally, when attendants would try to guide or help her, she would resort to hitting, slapping, kicking, or even spitting on them. Finally, ten days ago, we were informed that the facility was no longer able or willing to care for her, and that she would have to leave (until we were able to move her, we had to provide round-the-clock nursing at $500.00 per day).

Just yesterday, we were able to place her in a large, state-affiliated nursing hospital in Union County, NJ. The price is steep, and Mom's estate will dwindle rapidly. The move did not go well, and this poor woman is now even more lost, confused, and frustrated than she was before. My brothers have indicated that they're not sure if even this place will keep her, and we don't know where we'll turn if she's forced to leave.

So, finally I come to my question(s). What are our options? Where do we turn? Can a state hospital turn Mom out? If so, where can we find someplace that can care for her. What legal protections does she have? What aid is available to her or us? What resources, agencies, facilities, programs, institutions, or other entities can we turn to? What have we overlooked? How can we be as smart as possible about conserving or preserving what's left of the estate? If you have been through this, or if you work for an organization that helps people in Mom's (and our) position, what should we be doing? Are there attorneys, advocates, or other people who specialize in this sort of thing?

If possible, answers should be specific to New Jersey (with North Carolina and Texas possible options for relocating Mom). Answers posted here on AskMeFi will probably help others as well, but the throwaway email is: helpushelpmom@gmail.com. Thank you.
posted by anonymous to Grab Bag (12 answers total) 12 users marked this as a favorite
Have you contacted A Place for Mom? My co-workers who are dealing with aging parents/Alzheimer's have found them useful.
posted by mogget at 7:51 PM on June 10, 2010

Watching one's parent decay in such a horrible fashion is not easy. You truly have my sympathies here; my step-grandfather had undiagnosed Alzheimer's and it was hard enough for me, let along my mother and stepfather who lived with him after his wife died.

I can't say I can offer any direct suggestions, but I can offer some general-ish advice on who to talk to.

Her GP/other regular MD may be able to offer some suggestions on where to look, or point you in the right direction. If your mother is being belligerent about her condition (which is a VERY common theme, as many Alzheimer's patients literally can't see that they're changing) it may help for her to get information and suggestions from a neutral party, particularly a medical professional. It can't hurt to try.

Consider also speaking to general help centers in your area. They may be able to point you in the direction of advocacy, help, and counseling groups designed specifically for families dealing with an Alzheimer's relative. Help centers often exist for more than just immediate-crisis situations like suicide or assault, PLEASE don't be afraid to use them. Getting in touch with others who are dealing with a similar situation may help you decide what to do as well as figure out how to deal with what you're going through.

Those advocacy, help, and counseling groups could point you in the direction of various direct-aid resources in the form of specialist MDs, attorneys, etc etc.

Definitely find an attorney that specializes in end-of-life accounting (if that's what it's called?) that will work with you on maximizing her estate. The aforementioned groups may be able to help find you someone.

Absolutely investigate everything -- some less-than-moral companies exist that promise to handle end-of-life affairs and end up making off with most of the wealth, and of course some senior centers are better than others. When investigating any living center, ask about rules on visitation. Some centers 'clean up' their act for strict visiting hours so they appear better to families of elderly residents who can't or won't speak up. (Happy Gilmore seems a really goofy example to reference, but it's not entirely invalid.)

Good luck, and apologies for the wall-o-text.
posted by Heretical at 7:58 PM on June 10, 2010

Please contact the Alzheimer's Association, you can call them anytime at 1.800.272.3900 and someone there will be able to give you more specific information about your options (legal, financial, etc). Tomorrow morning I would also contact the New Jersey chapter directly (alz.org/nj or 973.586.4300) for a list of Alzheimer's care units in New Jersey and for a care consultation to go over all of these questions. They'll be able to meet with you in person or with your entire family over the phone and walk you through resources and other agencies that can help. For us, they were our lifeline.

I'm sorry your family is going through this. Its a long road, but please remember that changes in your mom's behavior (the violent outburst, the confusion, not wanting to shower) are all part of her disease. The more you learn about this horrible disease the better you'll be able to get her the care you need. Best of luck.
posted by zamdaba at 8:08 PM on June 10, 2010 [2 favorites]

We're dealing with a parent with similar issues.

1. A good care manager can be valuable: typically a trained nurse or social worker who knows good resources in the area, such as care giving agencies, estate lawyers, geriatricians, etc.

I've also used our care manager as a sounding board and to help evaluate my parent.

2. A State Health Insurance Assistance Program counselor can help sort through Medicaid/Medicare issues. They are free in our area, and I believe they're generally free.

3. We've also been helped by a good nutritionist. There are drugs for dementia and Alzheimers, but, in general (and note that I am not an MD), they help only a little bit (5%) and may have other side effects on aging and already stressed brains. Our nutritionist suggested we switch from prescription drugs to various supplements. They are not cheap, either, but they seem to have helped with energy level, incontinence, and some odd cravings.

I also agree with what's been posted above. Good luck.
posted by alittleknowledge at 8:45 PM on June 10, 2010

Can you get her a hospice eval? They can help with placement options. Memory care units are what they call the dementia based care sites here in Vegas, they are expensive though. For you to get help from Medicare ie nursing home payment your mom will have to have used up all her estate and then there's a waiting period. Out here nursing homes often take Medicare pending clients on the assumption that they will get Medicare but I'm not sure how it works in other states.
posted by yodelingisfun at 9:46 PM on June 10, 2010

How can we be as smart as possible about conserving or preserving what's left of the estate?

Bad news: It's probably too late for this. The Medicare lookback period is five years, meaning anything you transfer or protect now can be revoked in a government clawback if your mother takes Medicare at any point between now and June 2015.

It's very important to do estate planning if there is a history of dementia in your family for this reason, and long-term care insurance is a must; it's cheapest if acquired before age 60.

Nevertheless, speak to an elder law attorney in your mother's jurisdiction. They will know what is still available to you.

You may know this already, but the canonical guide for being an Alzheimer's caregiver is The 36-Hour Day. (You may be able to get a free copy through a local agency.)
posted by dhartung at 10:36 PM on June 10, 2010

I'm so sorry your family has had to go through this.

Area Agencies on Aging for New Jersey. In Maine, our AAA was invaluable for helping us get the care we needed for my Grandfather and for our whole family.

My brothers have indicated that they're not sure if even this place will keep her, and we don't know where we'll turn if she's forced to leave.

Are you afraid they won't keep her because she's confused and violent? Any facility with a good Alzheimer's care unit should be equipped to deal with this -- unfortunately its part of the process.

and made my little girls afraid of their Grandma

This tore me up. Be sure to put pictures of her (younger, happier self) in your home and talk with them a lot about both what they experienced and about who your mother was before the disease took hold.

Peace to you and your family.
posted by anastasiav at 10:47 PM on June 10, 2010

I would start talking to your state's long term care agency sooner rather than later, if only to find out when mom will be eligible and what will need to be done to get her into the system. As posted above, there is a lookback period, and there is a strong chance you will not be able to preserve mom's estate. (An elder care attorney in your area can give you much better info on this than I can.) Getting on the state's long term care plan (typically funded through Medicaid) can take a lot of time and work, and you want to try to get in a position where you will be able to put things in motion as soon as you know for sure that you'll need it.

I've dealt with similar family situations in the past. It's never easy and you often question if you're making the right choices. But you'll find your way through. Peace to you and yours.
posted by azpenguin at 11:35 PM on June 10, 2010

You have my sympathy and well wishes. There is one thing that's perhaps not easy to point out, and please understand that I say it with the best of intentions. AD is a terrible disease to witness, and it's heart wrenching for the family. Nonetheless, the way AD progresses, depending on type, it is entirely possible that your Grandmother will reach a semi-vegetative state that's just a lot easier from a practical point of view as far as finding care facilities; in such a state, a regular hospice is more affordable and a less expensive long term solution - and it won't make any difference to your Grandma. It probably makes sense to talk to her physician to see if they have any ideas as to the time frame for when your Grandma might progress to that state - that will allow you to plan the financial aspect ahead of time.
posted by VikingSword at 11:52 PM on June 10, 2010

You have my sympathies. We're dealing with the same issues with my own mother. It's disheartening to watch her change like this.

I also second the book The 36-Hour Day. My mom's doctor gave us a copy and it's been extremely enlightening.

I wish you luck in negotiating the maze that is elder care. One thing has become very clear to us in exploring the option for my mom...If your parent doesn't have an enormous boatload of cash, your options become very limited. You will come to know the term "private pay" quite intimately. Elder care is a huge business.
posted by Thorzdad at 4:48 AM on June 11, 2010

My deepest sympathies to you and your family.
My own mother has had Alzheimer's for a number of years, and, although she has not been combative, the care and paperwork with DSHS is not exactly simple to manage.
I just wanted to say that, whatever you do, *try* to minimize the number of times you move her. Moving is very disorienting for AZ patients, and often leads to a worsening of symptoms (sometimes temporary, sometimes not) and increased anxiety. She will likely 'settle down' some in a few weeks. Until then, try to visit her earlier in the day if possible,mornings are often when most patients are at their best, and more likely to engage.
As was said up thread, any competent care facility will be able to deal with her outbursts or any inappropriate behavior.
An AZ support group will help a lot as well, do find one you can attend regularly - you'll feel less alone, and learn lots of valuable coping and management tips and skills.
Best of luck to you and your family.
posted by dbmcd at 9:31 AM on June 11, 2010

Have you contacted A Place for Mom? My co-workers who are dealing with aging parents/Alzheimer's have found them useful.

Based on this recommendation, we just called them and had a strange experience. Upon further investigation, including this Wikipedia page on A Place for Mom, they are a bit of a sham. They are for-profit, which might be fine, but apparently the "agents" work on commission, which is paid by the facilities that they recommend! They have zero training in social work or elder services, and are basically salespeople. They only recommend places that have paid their hefty fees. So they're not just funded by the government or a non-profit. They also have bad labor practices.

Not a great resource in the end.
posted by barnone at 9:32 AM on March 23, 2011

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