Mom's dementia is getting worse, now what?

In My Humble Opinion
1

I really would like some practical, actual instruction as to where to go from here.

Basically, my mother has Lewy Body dementia (which is different from Alzheimers). She lives in her house alone, except for a paid sitter (through an agency) a few hours a day. Just for companionship, to do any errands, make sure she takes her pills and has something to eat in the refrigerator. We took the knobs off the stove, had her car taken away. Mom is pretty lucid, is not unhappy, but her mental state is getting worse. She is convinced my father and brothers are living in the house (moved, father dead for years), the neighbors won’t come over to see her (they moved months ago), and basically I am running a kind of puppet show. I bring over food, clean out the refrigerator because she won’t eat stuff because she’s ‘saving it for Dad when he comes home later’, I pay her bills, buy her things. I have to shovel her steps and driveway. I am run ragged, it seems every day. She has no concept of time or day or night, calls me at all hours yakking about I don’t know what. She’s fallen down twice in the house.

I think it’s time to start looking into putting her somewhere, but I don’t know how to do this, who to call, where to start. How do I start? Who do I call? What about paying for all this? (she gets SS and a pension, Medicare.) I heard I have to get her on Medicare - how? What about her little savings nest egg, I can’t just take it. The house is in my and my brothers name for several years. We have her will and health care proxy.

I want to know what I should do next. When the weather gets better in a few months. I don’t think things should go on like this - should they? Should she go into a home? If so, what kind?

I’m so confused. Its eating me up and ruining MY life. Should I call a lawyer? Her doctor is of no help, says “you should put her in a nursing home”. I called the office for the aging, they didn’t seem to know what I wanted and I gave up after being transferred arond a dozen times. My friends and what relatives I still have here say, “you should do something soon.” Yes, a great idea - WHAT?

Surely some SD posters have been through this. Any practical suggestions?

2

First, call the Alzheimers Association. They have been very good to me, with my 2 parents with ALZ. Sometimes you can get a really good person on the phone, if you don’t, ask for someone else. They have a lot of volunteers answering the phones, some good, some not so good-be persistent.

Her doctor, unless he is a gerontologist or geriatric psych, will not be helpful. Find one of those to get your Dx, and treatment.

I wish you luck, it’s a horrible draining thing to deal with. My Dad died of it, and I am still dealing with Mother.

I can’t tell from what you said if she is or not on Medicare-how old is she? And once you have your Dx, look into State aid programs which may get her someone in the home more than a few hours a day. And/or help you getting her into a facility.

Be sure she has no access to her finances, or nest egg. You can make sure she has $$ but she doesn’t need to have access, if you know what I mean by that.

There are, what’s called Memory Care places for these patients. Perhaps you need to check that out and call. If she needs state aid or whatever, your Dx from a gerontologist or geriatric psych will be needed.

3

I’m sorry about your mom. I know this is really tough to go through.

Most communities have resources for you to start with. I know when we were looking for assisted living for my uncle, we found a magazine where all the nursing/retirement/assisted living places advertised. It was a beginning. We had to learn the differences between what each kind of place offered. These magazine/brochure things are usually free and are available at grocery stores, community centers, etc.

Investigate a couple of places, and call for a tour. Yelp was actually good in that we learned one of the places we liked had a bed bug problem.

Your town/city will have local area aging resources. In Phoenix, its the “Area Agency on Aging”. Find the agency for your town and see what’s available.

Good luck. My uncle is in a great place now. Unfortunately, he has a hoarding problem and I live in fear that they are going to kick him out.

4

I have literally just been through this. If I could do it all over again, I would do as follows: Get her into a Senior Living Facility with a memory care program ASAP.

Not sure where you live, but google “Assisted living facilities in (your city)” and start calling or looking at websites to get an idea of services offered. IME websites did not list costs–you have to call for that.

Is the house owned free and clear or is there a mortgage? If there is a mortgage, apply that expense to your mom’s monthly Assisted living bill and rent or sell the house. If you can sell it, see if your brother would agree to use the proceeds for mom’s care.

They will also need to assess your mother to see what level of care she needs. Level 1 (most basic) is cheapest. Level 4 is most expensive.

Good luck and do NOT procrastinate. Things will not get better or easier. Trust me.

5

If you can manage it, an elder care lawyer is a useful person to talk to. They can help you figure out the best way to protect some of your mother’s money so it doesn’t all disappear before she can go on Medicare. And they will know the best ways to maximize the assistance available to her.

Good luck, and take care of yourself.

6

It’s clear to me that people in this thread are confused about the difference between Medicare and Medicaid. Medicare is for people over 65. If your mother is over 65, she is eligible for Medicare. You say she already is enrolled in Medicare, but then you ask later how to get her enrolled. First, you need to give a clear answer about whether she is enrolled in Medicare.

Second, you need to know that Medicare does not pay for long-term care for seniors, except for some limited benefits for people who go into a skilled nursing facility after a stay of at least 3 days in the hospital. Your mom is not currently in the hospital, so Medicare is not going to pay for her to go into a nursing home, assisted living, or any other kind of care. Medicare does pay for limited in-home care.

Medicaid, the program that covers poor people, does pay for some kinds of long-term care for people who qualify.

How do people pay for long-term care? First, they pay out of pocket. That means, your mom will spend her own money first. Does she have private long-term care insurance? (Few do.) If not, she will spend her savings. People sell their houses to pay for it. Then, once they spend down all their personal assets to the point they qualify for Medicaid, then Medicaid will help to pay for long-term care. A person can be on both Medicare and Medicaid at the same time–this is called dual eligibility, and a lot of old people end up being dual eligible after they spend down their own assets.

This is a general overview of how the system works. Your mom’s specific situation may vary a little.

If your mother has been diagnosed with Lewy body dementia, she almost certainly needs skilled care. She’s also going to need someone to take conservatorship of her affairs when she is no longer competent to make her own decisions. You need to prepare for that ahead of time. The advice to talk to a lawyer is a good one. You also need to start talking to your mom about it. Some people are willing to work with their children and voluntarily give one or more of them durable power of attorney over their financial and health affairs while they are still competent to do so. I highly recommend that route if possible because it is less expensive and time-consuming if she agrees. I do not recommend waiting any longer. You want to avoid more falls.

You also want to conserve your own energy. Being the person in charge of someone with dementia is extremely draining. Taking care of her with little help, and taking care of her house as well, is going to take a lot of energy and money that could be spent getting her the best kind of care/living situation.

I am both a lawyer (not yours) and am earning my Masters of Health Administration currently.

7

Q.N. Jones is right, I always mix up Medicare and Medicaid, and I named the wrong one. That said, the Elder Care Lawyer was able to show me some (legal) ways to put aside some of my aunt’s money so she didn’t have to spend it all before we could start getting assistance.

8

I will give you a synopsis of what we have done with my mom. My wife and I have been my mom’s caregivers for 12 years since she broke a hip. At that time, she had been suffering for many years with crippling RA. As time progressed, the level of care increased. We went from picking up groceries, cleaning house, etc to essentially covering daily (and often nightly care). What began as helping with things physically demanding has transitioned to things more mental AND the same level of physical care.

At some point, it was too much and we obtained services from a company. They sent a CNA every day from 9am to 5pm and this lessened the demands.
BUT BUT BUT
CNAs vary dramatically in quality. Some are really lazy and some can be downright dangerous. I have had to fight every kind of financial fraud you can think of. If you get pro healthcare in your mom’s home, you MUST get durable POA and a Healthcare Surrogate. Do this while mom is capable because once she is not competent, no lawyer will touch it and you have to get a overseer through the courts. Once you have caregivers in the house, YOU MUST remove anything financial - checks, credit cards, bank statements. We have had checks fraudulently written, credit cards used, identity stolen, you name it. The bad caregivers essentially are identity thieves.

You will see a change in behavior. Think of it as childhood in reverse. She will go from the adult you know to a badly behaved teenager and at times to a sulking 4 yo. This will begin infrequently, but will increase. Learn to divert and if need be, google that and become an expert at it.

We were going to let my mom run out of money and go into a home under Medicaid. We assumed that about the time that she ran out of money, she would be loopy enough that it wouldn’t be horrid. Wrong-o! My mom’s physical condition is truly tragic, but while she has her out of her mind, where did you come up with that moments, she is for the most part, quite competent. Actually, right now, my mom seems happy. Thus, we have changed our minds.

We are house shopping now and will be moving mom in with us. Neither of us can bear the thought of her in a nursing home. We will sell her house and continue as long as we can with skilled care during the day and us the remainder of the time.

I have lots of family and they are all sympathetic. Unless you have exceptionally loving family, that is typically the extent of any assistance you can expect. People don’t like the mentally ill, the alz patient and the old as I think it makes them afraid. It simply is a slogging event with good day and bad days. If you aren’t driven with love for your mom, get her pro help.

Your mantra must be that you must care for yourself. Once you do too much, once you burnout, you are just done. You must set limits and get help and get away as much as you can. You must take care of yourself to take care of them and do not let your entire life become being a caregiver.

At my core, I HAVE to do this and my wife feels the same way, but it is tough.

Feel free to ask questions, but we have experience with everything except the intricacies of the government services (ha ha).

9

There are local groups such as VINE that offer courses for families of the elderly. I took a six week one that provided me with a lot of useful information. Plus it gave me a chance to socialize with others in my shoes and share ideas.

It’s valuable to learn the most comfortable way to interact with your parent when their brain isn’t working correctly. That, alone, will save a lot of frustration.

It’s surprising how little we know about these things until we find ourselves right in the middle of them. There are many things I would have done differently if I’d have known about the choices and resources.

10

OP, listen to Q.N. Jones. I was confused when you said she wasn’t on Medicare…Medicare is automatic for anyone over 65, I believe. Medicaid is whole other thing.

My mother had ALZ, and we spent the first five years of our marriage caring for her. Without trying to write a book here, I’ll explain what we did:

  1. Started with our town’s council on aging because they’re the clearing house for any and all elder services available locally (ditto for other COA’s, btw) They referred me to the county Elder Service which has social workers, counselors, referral programs, etc. It was through them that I got a list of adult day care places where my mother could go during the day to give us a break. There aren’t very many in my area, and most places have a waiting list, but I got on one of those lists. I believe it was maybe a two or three month wait. I was later told that openings happen only because somebody is going to a NH.

  2. That said, the day care was a godsend for our sanity and a welcome change for my mother, even though she never could remember why she was there or what she did there. She met the income guidelines for reduced fees, and I paid that from our joint account.

  3. SPEAKING OF FINANCES…my situation was a little different because I lived with her and the house was free and clear except for taxes, and we held all her accounts jointly. To get her on Medicaid, I had to spend down everything in our accounts until there was 2K or less left. Her care, utilities, and taxes took care of that. I kept every single receipt in case Medicaid had any questions. I was also told to find a lawyer specializing in elder law. I did so, again thanks to the county elder service. They also assigned a social worker to my mother to help me navigate through her general care.

  4. It was the social worker who helped coordinate in-home care for my mother. Through her we found out that my mother was also eligible for X hours of such which included bathing (I didn’t trust myself to bathe her because I was afraid she’d fall, etc.) Twice a week we had a young woman who’d come to the house after my mother returned from day care. One day she’d bathe my mother. The other day she’d help my mother make dinner, or they’d do a simple craft, or take a walk if the weather was nice.

  5. It was also the social worker, as well as my mother’s doctor (who, btw, specialized in geriatrics) who helped transition her to a NH. As with the day care, there are very few NHs around here who also have a dementia unit, and those with the units have waiting lists a mile long. I put my mother’s name on a number of those lists and prayed that there’d be an opening at one of the NHs closer to our house. It was almost a year before her name came up, and we were told to take it. The NH was two towns over from us.

As for your sanity…wow, that brings up a LOT of baggage. The “rummaging” , or the “too-well-to-be-placed-but-too-affected-to-do-anything” stage, is one of the most frustrating, most anger-inducing, most exhausting phases of any kind of dementia. My mother sundowned during this period, and there were nights we’d find her literally tearing apart her bedroom (she actually tossed half her jewelery down the toilet because she didn’t know what anything was). We were told to think of her as a toddler in an adult body – keep her occupied, let her nap if she wants, engage her whenever possible. We took to spending time at a local restaurant/bar where the owner has known both her and me since I was a kid. He let us hang out there. She was happy sipping a 7-up and watching the TV if she wasn’t saying hello to everyone walking in. I looked after her while my husband did some paperwork; he looked after her when I’d be on the laptop or reading the paper.

It’s tough. OMG…I still have the occasional nightmare about that period. There was a time where neither of us slept more than 3-4 hours a night because we’d hear her crashing around. Thankfully she didn’t wander. She did, however, destroy a lot of stuff in the house. I honestly thought I was going to have a nervous breakdown during all this.

I hope I’ve helped, OP. I don’t want to draw this out any longer than I already have, but if you have any questions, please feel free to PM me.

11

(forgot to mention in my other reply)

We received a lot of sympathy but NO HELP WHATSOEVER from family because “they” didn’t want to be stuck taking care of her. I’m still pretty bitter about it. When another relative was diagnosed maybe a year or two after my mother passed, all I could think was, “Isn’t karma a bitch?” with a great big evil grin.

And no, we weren’t asked to help care for that relative. We didn’t expect to be. We later learned it was because we’d already “been there done that”.

12

Kiz,

It is amazing how consistently our experiences can be. I can recall having to search for several hours of several days for my mom’s passport because she would be jailed for not turning it in.

She consistently argues that her air conditioning is bad, it is going to burn up, etc. She asked me last night to go into her attic because the AC guy stole her roof insulation. I responded with gee, how do you think that Bama game is going to go. Breathe, divert, breathe, calm her worried mind, breathe, try to divert again. I get so frustrated and angry, but I have to remember, she is just so afraid and just needs to know that we are going to be okay.

It sucks at times, but you know what? It is worth it because that is my mom and she spent forty years taking care of me when I was an idiot and sometimes still when I am an idiot.

13

My mother’s paranoia period took shape of thinking people were watching her from the nether corner of whatever room she was in. There was one night where she wouldn’t let me help her get ready for bed because “they want me to take off my clothes”. That spiraled into me making up a story about how “they” were getting bored waiting for her so “they” decided to watch my husband (who was in another room doing something-or-other) instead. To this day I don’t know if she believed me, but it eventually worked.

The fear…oh lord, the fear. She knew something was wrong, but she could never articulate it. The day she ceased knowing who I was was horrifying, but at the same time the I knew the best thing I could do was to continue to support her, even though I was now the “nice woman who visits me every day”. As you said, she spent a good forty-plus years taking care of me through thick and thin.

14

Thanks for your input. I should clarify, I was told mom has to get on MedicAID. She’s already getting MedicARE, has some insurance to pay for prescriptions. She gets a pension and SS every month and has a few thousand in her savings. I’m told we have to spend down that money, to a certain amount.

I’ll tell you one thing I did at my brother’s suggestion. I am on her checking account so I write out checks for her, and this Christmas I bought Visa gift debit cards for each of her children and grandchildren as Christmas gifts (spent about $1000). (I was told to hold onto those cards and buy more at birthdays and holidays and just hold onto them. They expire in 5 years or so.) Is this a kosher way to withdraw some of her savings? I’m unsure and before I take out more, thought I would ask. Maybe I should contact an eldercare lawyer then?

15

You want to be very careful regarding spending. Your mother must receive some value for anything she buys. Medicaid goes back five years. She can invest in her house or buy a car or whatever.

Just be careful not to spend her down too much. It can take some time to actually find and qualify for a nursing home.

Just to reiterate…a very good elder attorney is a godsend. You have to know what you are doing and get good advise. There are things that you can do that sound okay, but are actually incredibly illegal.

As an example, if mom goes to a nursing home and you rent her house, that is fraud and they mean it.

16

Cue sharp intake of breath.

I was the guardian for my aunt before she died and I had to show that all gifts and presents were within previously normal bounds. That is, if she had normally given £100 to someone, then I could buy something worth £100 for her to give to them, but if she only gave £10, then £10 was it. And I had to account for it. Of course, I’m in the U.K.

17

Even in the US, gifts can be problematic. I will also say that if you are writing checks without a power of attorney, that can also be dicey. Let me tell you whom to fear in all of this.

Let’s say that you are the ONLY one in your family that wants to do anything for mom. You do everything you can the best you can. At some point, someone in your family is going to need money or mom is going to have a crippling stroke or die. At that moment, those same individuals full of sympathy and little action will come out of the woodwork and they will pounce on EVERY SINGLE remotely questionable action. You had better be prepared to PROVE every single thing you did was totally aboveboard.

You really need to get the advice of an elder attorney ($500-$700), a power of attorney ($500) and a healthcare surrogacy ($200-$500). You want to do all of those things now!!! Once the wolves come out or mom reaches a level of comprehension that is too low, you are done. Trust me, a lawyer now is cheap compared to later in court.

Not only that, but you want someone like yourself who CARES deeply about your mom to be making decisions in her best interest. Nobody else will because they aren’t now.

18

Also, remember…without a healthcare surrogacy, if your mom goes into the hospital and is incapacitated, the decisions that will be made will be made by others. The doctors may not even be able to talk to you about her condition. Also, these are things that your mom can spend her money on. It is a surrogacy for her health and a POA for her care.

I will say that I am very proud that there are others who do step up and care for the elderly. It is tough, but I cannot think of a kinder thing to do.

19

One BIG word of warning: once your mom is in an elder care facility, meet her nurses and caregivers and any on-site doctors and tell them this:

My mother does NOT have Alzheimers’. She has Lewy Body dementia. If you try to give her Haldol or haldol-type drugs (anti-psychotics is the generic term) for times when she is agitated, they will push her into a state of PERMANENT DEMENTIA. So, I don’t care how many times the drug rep has taken you out to dinner: I expect her chart to say that these drugs are** forbidden** and may not be administered, even if the staff deems there is an emergency, without consulting ME first. If I learn that they were given to her anyway, there will be Serious Legal Trouble.

I speak from bitter, bitter experience. My wonderful dad had LB and spent the last eight months of his life completely bewildered and terrified after a jerk night nurse wildly overdosed him with an anti-psychotic to get him to quiet down. He was fine one day; the next he was essentially gone mentally. Not a stroke. The emergency room doc admitted what had happened after seeing the charts and blood work, but in a small town, nobody will testify–and we were too busy moving my dad to a much better facility over an hour further away to pursue the bastards who did this.

20

I had it down on my mother’s chart at the NH to CALL ME if they wanted to give my mother a new medication for whatever reason. For the most part they complied; however, there were a few times when they sneaked in a random antipsychotic “to quiet her”. My husband threw better fits at the staff than I did.

And then…wow. At one point my mother was refusing to eat, so the NH doctor thought it might be a good idea to send her to the hospital for some tests to see if it was something physiological as opposed to the ALZ. I gave the OK, she went there, went absolutely nuts (she kicked a doctor, IIRC) when they went to administer the first test, so they gave her Haldol. She went quickly downhill from that point on. I later learned that, in many hospitals which don’t ordinarily deal with dementia patients, Haldol is the magic bullet because, compared to other meds, it works quite rapidly.