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How to help dementia and paranoia
October 3, 2010 9:03 AM   Subscribe

My mother is suffering from dementia and interaction with her is becoming very difficult. Suggestions or advice please?

My mother, about to turn 80, is suffering from dementia and I'm losing the ability to help her peace of mind.

For background, my parents separated and divorced decades ago. Mom has, as near as I can tell, always been one of these people who operates on emotion rather than fact. As in, if something feels right then it must be true, regardless of facts. It is within that context that I spent decades having very little contact with her because you couldn't talk for more than ten or fifteen minutes without her launching into, for the bazillionth time, stories about how terrible a person my father was... which he wasn't. In later decades she would move regularly because she became convinced that my father, from across the country, was somehow spreading lies and making everybody dislike her.

Around the time that my father died, about four years ago now, she started to become physically impaired. She lost all vision in one eye and has very poor, circa 20/200, vision in the other. She also started having short-term memory problems. Her sister in law, Mary, began helping her with every day living since she could no longer drive or, because of her memory problems, manage her own bank accounts.

However, as soon as my father died, Mom apparently shifted from thinking that my father was ruining her life to thinking that her sister-in-law was doing so. Soon she became convinced they Mary was stealing money from her and event went so far as to close her bank account and send all of her money to me "to keep Mary from stealing it." Naturally, checks started bouncing. Soon she started calling at all hours, literally crying and begging my brother and I to come get her and bring her back to where we live. With Mary at the end of her rope we agreed to do so.

So now she lives about 20 minutes from me in a small 55+ apartment complex with dozens of people her own age. But it's the nature of where I live that you really need a car to get around and so she's basically trapped at the apartment complex when nobody is available to take her someplace. That said, she complains about being lonely and yet makes no effort to make friends and be social. She just watches TV in her apartment.

With that in mind, I've hired a living assistance company to help her out. Three times a week, for four hours, she has somebody to take her shopping, to get her hair done, and things like that. And it's a source of company and conversation. I manage her bank account, pay her bills, and so on.

In recent weeks, however, she has become very difficult to be with. She has become convinced that Mary, from across the country, is still trying to steal her money. In fact, she has become convinced that, in the small circle of friends and family she knows, most of us are trying to steal her money. Mary, her sister, my spouse, my cousin, and so on. Showing her bank statements that indicate that no money is missing doesn't help. She is convinced that people come into her apartment at night to steal her money, but showing that nobody can get in with the door deadbolted shut doesn't help. In fact, showing her these things, in an attempt to help, just makes her more upset. Which, in turn, makes me upset.

She's basically living in a fantasy world now. She calls me day and night enraged about something in her bank statements. She literally cannot seem to talk about anything else. If I sit with her, or listen on the phone, she will literally talk for hours and hours about how these people are doing these terrible things. I know that when she isn't on the phone she'll often sit at home crying about how terrible everything is. Plus, now she is insisting that we switch banks and that she move again to someplace where she can walk to the store and bank and stuff like that. She is clearly incapable of managing paperwork and I fear that, even if I could find a small town like that, she would wander off and get lost. Furthermore, I'm confident that changing banks, or changing residences, will just start the cycle over again since she's operating in an emotional environment, not a logical one. In other words, I'm sure her sister-in-law will, in my mother's mind, magically gain access to her bank account no matter where we have it.

I feel terrible for her because I know that she honestly feels that way and it must be terrible inside her head. At the same time, I often can't help but get angry at her for saying all these terrible things about people who are close to me, such as accusing my spouse of theft and for the way in which she is making my already difficult life almost impossible with the added burden of managing her long-screwed-up finances, endless insurance paperwork, and helping to personally care for her. She has no concept of how much I'm sacrificing to try and take care of her in the best way I can and that's frustrating too.

She is, by the way, on anti-depressants and a drug that is supposed to help slow the progression of alzheimer's disease.

I guess this is a bit of a vent, but I really would appreciate some advice from anybody in a similar situation. Difficult as she has been to me, I really do want to help her remaining time as nice as possible but it's difficult when she and I are in this situation. More and more frequently she'll call, upset about something, and in the process of trying to help her she'll get more upset, and then I'll get upset, and soon my day is ruined and she'll hang up on me and doubtlessly cry.
posted by LastOfHisKind to Health & Fitness (17 answers total) 12 users marked this as a favorite
 
You need to to talk to her doctor. My heart goes out to you; it's obviously difficult and stressful on everyone, but you need to have a wider discussion about the prognosis and potential management choices for the present circumstances and on the road ahead.
posted by peacay at 9:15 AM on October 3, 2010 [3 favorites]


If it's financially feasible she sounds like she would be much better off in an assisted living facility catering to people with memory loss. She would have more structure to her day with activities and help, you wouldn't be worried about her physical well-being and the emotional issues might be easier if she had more distractions. That said, in our area there is typically about an 18 month wait to get into a good place that takes Medicaid and the cost for plain old assisted living without the additional costs of memory care placement can be well in excess of $60K a year. I think that is very variable by location so don't take it as gospel.

I'm sorry you're going through this - it's just horrible to watch someone deteriorate and know you can't do much to ease it. You might also see what support services are available in your locale - we have a great senior center with all kinds of activities and something like that might help a lot.
posted by leslies at 9:22 AM on October 3, 2010 [1 favorite]


If you do not have power of attorney for your mom, you should talk to her about giving it to you as soon as possible. I don't know if she is of sound enough mind to still do this. Does one of you have a lawyer who can help you do this? She really needs your protection. I am sorry you are probably not going to be able to make/keep her happy anymore, but with the proper legal authority you can protect her and her finances. It sounds like she is not safe, in her current situation. Please worry about her safety before you worry about her happiness.
posted by fritley at 9:51 AM on October 3, 2010 [3 favorites]


You need to talk to a lawyer and a doctor. The doctor for the reasons peacay described, and the lawyer because you want to make sure that it's very obvious to every rational stranger who comes across this situation that you're doing everything right. Especially if she's prone to taking off, which it sounds like she might be. If someone hasn't already been given power of attorney, if she hasn't already been declared incompetent to manager her affairs, etc., that needs to happen.

(this isn't legal advice, this is "I know an old lady who lives in an unheated room because she's got dementia and took off because of stress, and won't tell us where she lives because we freaked out about the unheated room when she did call us two months later, and now we can't help her.")
posted by SMPA at 9:58 AM on October 3, 2010


I am a nurse and specialized in dementia. I worked in other areas too, but dementia was my first love.

The first thing, you need to see a social worker to help you lay out a plan on your next move. A lot of people hear social worker and think horrible things, like protective services or something like that. Social workers are on the side of you and your mother and are incredibly helpful. I worked for one for ten years and trust me, she was amazing. If possible, I recommend a social worker who specializes in gerontology.

If money is a factor, you can go through your local family and children services. They usually have a senior program and it truly is indefensible.

The next thing is find a good doctor. You need one who again, specializes in dementia. I see that you're in Ann Arbor, so that shouldn't be too difficult. Small towns can be problematic.

Don't be afraid of medication to help out. There are TONS of myths out there and horror stories, but understand that there are large variances. What doesn't work can be eliminated and replaced with something else.

There are assisted living facilities that specialize in dementia, but they can be very costly. If you have the money, then fine. If not, there are other alternatives and the social worker can help you.

It's good that you already have control of the money, that's usually the first thing families do when they notice a change and most of the time the elder does NOT want the family taking care of the finances, so you have a better start than most. :)

There is help out there, you just need to know how to obtain it. I will be willing to help you further if you IM me. In fact, you can email me direct using the user name I use here then adding @gmail.com.

There are more questions that I have such as how available you are. Do you work? What are your hours? Do you have a busy home life? All of these things are important in order to find the best situation for the BOTH of you.

Good luck!
posted by magnoliasouth at 10:00 AM on October 3, 2010 [10 favorites]


I've been through this with my mother in law and know others who are dealing with it. My wife and I resisted, for some time, placing her mother in a nursing unit specifically devoted to Alzheimer's care, but in retrospect, we probably should have done it much sooner. We tried "assisted living", but the care there was more oriented to helping with physical disabilities than with mental conditions. When she had a crisis related to several falls in her living unit's bathroom, we got her a spot in a nursing home but in the non-Alzheimer's side, which had very few organized activities for the patients. We discovered that she was regularly wheeling her wheelchair over to the Alzheimer's unit in the same place because there were group activities there that were more suitable to her condition. So finally we moved her into that unit, where she still resides. The care is exemplary and personal and she is happier than she had ever been since signs of Alzheimer's cropped up. With some hunting around I think you can find good places for Alzheimer's care without having to wait 18 months.

You need to realize that everything she is saying and doing is the result of the disease, which often changes personalities is radical ways. Don't take any of it personally. Read some books and web sites that will help you deal with it. One particular trick is that you can generally change to subject of conversations very easily - so it you don't want to talk about her financial obsessions, don't respond to what she says, but switch the subject to something else. When you mention that you show her bank statements to prove nobody is stealing, that indicates you are trying to respond and trying to reason; but she has lost the capacity to do that. So don't respond; just start talking about something else entirely.

Hopefully you have power of attorney to make these kinds of changes. It might be helpful for you to talk to a lawyer or other Medicaid specialist with regard to how to handle finances so as to maximize Medicaid qualification and minimize any loss of assets.
posted by beagle at 10:01 AM on October 3, 2010 [3 favorites]


Oops. Indefensible? LOL! That should have been indispensable. Sometimes I type faster than my brain thinks. Heh.
posted by magnoliasouth at 10:02 AM on October 3, 2010


Oh I'm sorry you're going through this. It is a long haul and a difficult one - dementia, 99% of the time, does not get better but worse. You are going to have to start thinking of yourself as the adult and your mother as a child, because now she is one. It is not just that she is thinking emotionally: her brain is actually impaired now and she can no longer make decisions. As you have found out, it's impossible to reason with people with dementia and that can make your life insanely difficult. You now have to make the decisions and they are not going to be easy. I'm not very good at this myself but I find it helps, when my aunt is repeating her story of how we kidnapped her (from 1962, as far as I can figure out) to just listen and nod and say, yes, yes, you are so right, it is awful. In my aunt's world, you see, she is fine and it is the rest of the planet that has gone crazy. That is a scary place to be so I remember that and also I remember that in a couple of hours I'll be home, phew. In other words, don't take her seriously at all anymore. Just nod and agree and say absolutely, yes, any minute now you will fix all these things for her. It's awful but it's really all you can do. This book was helpful.

I would suggest calling your local council on aging, or the closest one you can find and ask them for help. They can recommend an elder care lawyer and, if she doesn't have one, a doctor with gerontology experience. The doctor can make sure that she has a dementia diagnosis, which you will need if she won't cooperate with a lawyer to give you power of attorney. They can also help you find a social worker who can come out and give you advice on what your next steps should be. The social worker who helped us with our aunt was a godsend. As leslies says, you may want at this point to start looking into residential care. Basically, what you have done with the caregivers now is provide her with what is called an assisted living level of care; the next step is called skilled nursing and it is residential and involves 24/7 help. She may well get to the stage where she can no longer be safely at home without at least someone living there and it is best to prepare for this now.

You will need both legal and medical power of attorney - the medical in particular is vital - and all the support you can get from friends and family. It's not a fun place to be but there are resources out there and a good social worker can help you find them.
posted by mygothlaundry at 10:14 AM on October 3, 2010


In addition to the other great suggestions - I'd also encourage you to find a support group for people with aging parents with dementia or memory loss issues: there's a lot of great resources out there that can help you. (And give you advice on some of the options that are suggested above.)

Just having other people to talk to who understand the stresses (like having to stop the other stuff in your life to listen to your mom be upset for hours at a time!) can help a lot.
posted by modernhypatia at 11:23 AM on October 3, 2010


Thanks for all the help. I do have financial and medial power of attorney but it sounds like I need go to a step further with regards to have her declared incompetent to manager her affairs. I'll talk to a lawyer about that. And to answer another question: Yes, I work full time and am also cranking through a Ph.D. program so I was already really, really busy before all this started. These days I'm living the 6am - midnight work work work lifestyle. (And I'm in Texas, not Ann Arbor.) Unfortunately, her insurance will pay for some amount of skilled nursing care but not for assisted living and $4 - $6k per month for Alz care is simply out of reach.

How would I go about finding a social worker? Who do they work for?

Thanks again! You guys are such a help.
posted by LastOfHisKind at 11:24 AM on October 3, 2010


Look into getting a geriatric care manager. It's like a private social worker. My siblings and I have found it invaluable for my mom. We tried the regular social worker route and found that her caseload was simply too great to be of much help. The geriatric care manager is available instantly by phone or email, and she takes care of everything from going with my mom to doctor's appointments (and documenting what is said there) to coordinating things with the cleaning service to having a psych nurse come over on a regular basis to assess her. My mom also has a 24/7 companion (this was arranged through the care manager when the time came). The companion is cheaper (way cheaper) than assisted living; of course I don't know if it is appropriate for all but the point is that a geriatric care manager is there to help you navigate all the decisions. Best of luck.
posted by Wordwoman at 12:37 PM on October 3, 2010 [1 favorite]


My 85 y.o. mother responded very will to the drug Aracept.
posted by wsg at 12:52 PM on October 3, 2010


Hi,
So many great comments here - wonderful to see.
I cared for my father (who had dementia) in my home for 4 years because his wish never to be admitted to an assisted living facility or a nursing home. That being said, our decision would not be appropriate for everyone.

Paranoia is a common symptom of Alzheimer's Disease and certain other dementias and is difficult to combat. The paranoia will actually lessen as the disease progresses.

My questions to you would be: does your Mom actually have the diagnosis of Alzheimer's or at this point, are they just calling it dementia? Secondly, does her physician specialize in either gerontology or memory disorders? It's important to find a physician who is knowledgeable in this area.

In regards to your powers of attorney, you will want to make sure that they are durable powers of attorney and that as you consider having her declared mentally incompetent (which would give you guardianship and conservatorship), you realize that you need to seek an attorney who specializes in elder law. Both guardianship and conservatorship will require assessments by 2 physicians, a home visit by a social worker and an appearance before a judge. Your Mom will have an attorney representing her and you may choose to have one who considers YOUR best interests, as well (I'd recommend that, especially if you have family members).

Geriatric care managers are very helpful - you can usually find one by contacting your local Area Agency on Aging or through your local Alzheimer's Association. Also, attending the Alzheimer's Association support groups and classes is a great help.

There are also several support group sites available on-line : IntentionalCaregiver.com (mine), Caregiving.com, Carebuzz.com, and of course Alz.org are just a few of the sites. They offer a wealth of information.

The MOST important thing for you to remember is to take care of yourself first. Consider what the flight attendants always say: Put your own oxygen mask on first...and then help others. (30-40% of caregivers die BEFORE the person for whom they are caregiving and you already have a full schedule.)

Best wishes to you and your Mom.
posted by ShelleyWebb at 3:16 PM on October 3, 2010


I'm sorry.........one more thing: because she may wander, she should wear a tracking device or be monitored. They are many devices available. The Alz Association has "Safe Return" and "Comfort Zone" (which is a web-based GPS locator). There are several other companies who offer such services.

Yes, I realize that she may find this another reason to be paranoid. In my father's case, I ended up asking him "to do it for me", not him and that seemed to work.

Shelley
posted by ShelleyWebb at 3:25 PM on October 3, 2010


I found a link for Texas for Aging services. Indiana has a version of this which was a big help with my grandmother.

Texas Department of Aging and Disability Services

http://www.dads.state.tx.us/services/


My friend worked in a nursing home sometimes in the Alzheimer's wing. Little kid shows seemed to be really popular. I don't know if it would help but you could try giving your mom some cartoons/kid show DVDs to see if she likes them.
posted by stray thoughts at 4:22 PM on October 3, 2010


I don't know if it helps to remember this, but the paranoia stage usually (in my experience) passes quite quickly. All of my grandparents had dementia, and all went through the stage of believing people were stealing from them, expressing rage and jealousy and crazy delusional thoughts. In all cases, that stage only lasted for less than a year. The next stage was also hard to see (complete memory loss, not knowing who close relatives are, etc), but it was a little easier to spend time with them than it was during the paranoia.
posted by lollusc at 7:23 PM on October 3, 2010 [1 favorite]


On top of the support group, it would really help you to find a therapist who can help you deal with this. You're busy and you don't have time, but being the primary caretaker for someone who is changing so radically, in such frightening ways, is enough to send anybody into a nervous breakdown. Better to get into therapy while you still don't have time than to end up with all the time in the world because you can't continue with ANYthing due to the stress.

If you can find a therapist who is familiar with dementia issues, they can also help you work through things like all the emotional issues involved in precisely this question, among others. Not just things you can do for your mother, but things you can do to make it so the situation is not so stressful to you.
posted by galadriel at 2:53 PM on October 4, 2010


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