Changing of the guard

Changing of the guard

From POA to Guardianship

As of yesterday at 2:55pm I have been appointed Guardian of my mother by a Judge in a court of law, and it wasn’t even my petition for Guardianship. It was my sister who petitioned the court. So pay attention and remember it could happen to you. This is how it happened to us…

My mother appointed me POA over her financial and medical issues after I moved back to Arkansas 3.5 years ago, from California, to be her full time caregiver. My niece had been begging me to come home and take over because something was wrong with mom. Even though I had 3 siblings living in the State, I was chosen and accepted the duty. We had a 3 year plan to get mom ready for the inevitable nursing home at the end of her life.

Alzheimer’s is a fatal disease. No cure. Slow it down some, but something will eventually cause your death. There is no happy ending here, and if you have been following along you know my story. I went public. I had to. Nowhere to turn, so I put it out there for everyone to read and expose the good, the bad, and the ugly, hopefully to make some change happen. We almost made it to 3 years, but that wasn’t our luck. Mom got sick and went into the system: hospitals, rehabilitation, and then the dreaded nursing home.

Briefly, her assets had to be limited to $2000, her home, and her car. That’s it, just to apply for Medicaid, not get it, just apply. Then you wait… And wait…. January 16th is when we applied. April 1st was her approval date. That’s a problem if you have bills and acquire new bills during that time. How do you pay them? No one would tell me.

None of my siblings were directly involved with my mother’s care. My oldest brother helped a lot on the house at first, and would stay with mom when I took some time off. The other 2 were not there for her. A visit, or a phone call, or a card was about it. It would have been nice if all three were helping mom, but that’s not our reality. It was up to me, and I did it. My niece was helpful and supportive along the way, too. So why would an uninvolved sibling want to take over at the end, and go so far as to petition the court for Guardianship? I believe it was for her ‘inheritance’. Money she assumes is out there for her. See the above paragraph on that.

A year ago my sister started criticizing my caregiving to our extended family. I got wind of it and called her out on it, but she would not respond to me, and still wanted to talk to mom. I said not until she explained her concerns. That’s when she called the sheriff on me for ‘welfare checks’ on mom. 4 times. The last time mom was in a nursing home and I told them that. What I heard from family members was that Vivian wanted to take mom to Fort Smith to live with her, not in a nursing home. Regardless of mom’s need for 24 hour care at that point, so I tried to restrict my sister’s visits to mom so she wouldn’t attempt to remove mom from the nursing home and take her to Fort Smith.

The nursing home was aware of the family situation and recommended that I get Guardianship. The POA did not restrict Vivian’s or Michael’s ability to visit her or take her out if mom wanted to go with them. I did not want to petition the court for guardianship as it is expensive, and most decisions have to be made by the Judge. I should have taken their advice and gotten the Guardianship. It would give me the absolute power to protect mom from anyone including family members.

Fast forward to June and I get a call from the nursing home that Vivian is obtaining Guardianship and wants to remove mom from the facility. Talk about jumping the gun. No, she cannot do that as she doesn’t have Guardianship and I have POA. Vivian goes on line and prints out a change of POA document for mom to sign. She doesn’t. Then she prints out a petition for Guardianship and files it with the Garland County Court.

She also filed a document to probate the will of the deceased (mom?). I find out less than 24 hours that the hearing is planned. To be honest I did get 2 phone messages from Vivian a couple of days prior about it, and that I didn’t have to appear. And to not pay the nursing home for the next month…. You bet I showed up to the hearing, and brought Fred and Melissa (my niece) with me. And my milk crate of files on mom. And her picture I took with me to the State Capitol. And my purple bowtie! I didn’t however have council with me. Fortunately, as Vivian was the petitioner, also sans council, the Judge couldn’t do anything but advise her to bring council and serve mom and me properly the petition, which she hadn’t done. Our Judge at the time didn’t ask anything of me except for a new evaluation of mom in his hands in 10 days. I was a day early on that. In the meantime, a second hearing date was issued. And sadly our Judge had a family crisis, and was replaced with another Judge. I passed the hat in our family and retained council. The very next day, our Judge was out of the picture. My council filed a petition contesting Vivian’s petition for Guardianship that explained if the Judge saw fit to appoint a Guardian it should be me.

The second hearing went just like the first one, except I had council to speak for me. Vivian did not. Even with this Judge offering her to get a continuance, and get council, she went ahead. The Judge read the filed documents. It was sad to watch, not surprisingly, she interrupted the Judge enough times he had a female bailiff come in and told her if she continued he would have her removed from his courtroom. ‘Call your first witness,’ the Judge said. Vivian didn’t have any witnesses. She did however call my brother, and my niece, who came with me, to the stand. That didn’t go well for her. Then she called me to the stand. That didn’t go well for her either. Then she got on the stand.

As you know, when you call a witness to the stand, both sides ask questions, and redirect. Bottom line was Vivian didn’t have a plan of care for mom. She didn’t have a clue what it would take to move her to Ft. Smith, care for her, and put her in a nursing home. How much it costs, or how to pay for it.

The Judge announced we had 7 minutes left as he had a juvenile case at 3pm. He said there was a need for an appointed guardian in this case and that he ruled it was to be me. Not her. Vivian asked what she could do, and the Judge suggested she get council. Then it was adjourned.

After a stiff drink at Maxine’s, my first e-mail was to the nursing home. Then I spoke to my neighbor. Today I called my dad to explain the outcome and warn him of what was coming for him next.

I wish there was a roadmap for people to follow when these issues come up. Do this. Do this. Do this. Don’t do this. Get everybody on the same page, speaking the same language, helping resolve problems. I believe this is possible. Instead we have systems of individual programs, departments, and families.

Maybe that’s my roadmap for you.

Sword fighting with windmills

Sword fighting with windmills

Today I got a late certified letter from the end of June that the Medicaid appeal for backdating decision is denied. The date was June 26, after the June 23 appeal hearing. So maybe the nursing home already knew the decision on July 10 when they asked for full payment by August 10 or mom will be discharged home.

I finally spoke to the State Ombudsman, Kathie Gately, and she wasn’t much help except to say to send a letter appealing the nursing home’s decision to discharge. Done. And she is sending me a list of all the nursing homes in Arkansas who have Alzheimer’s wings to choose from. And to go to her website to ‘compare’ facilities. She also said Federal law prohibits nursing homes from discharging patients into dangerous situations. So why did the nursing home say they were sending mom home and not to another nursing home? They are playing hard ball…. Granted I was not a southern gentleman with her on the phone, however when I asked her if she ever had someone with ALZ, her reply was that when her son was 5 she ‘had to forgo her personal needs’ and send him to a facility 2.5 hours away. The implication being that I’m not doing enough for my mom, and should think of her needs above my own. I wanted to spit in her face, but that wouldn’t be helpful.

I called Shanee Birl in Miller County who ‘handled’ mom’s Medicaid application and she said the nursing home has to fill out the hardship waiver, not me. So why haven’t they even offered? I have to ask them.

I have asked the AR DHS Office of Appeals and Hearings for a ‘Reconsideration’. Apparently that’s a thing, too. I can also appeal Wayne Davis, Hearing Officer’s decision through the Administrative Procedure Act with a judicial review by filing a petition in the Garland County Circuit Court. Too bad it can’t wait until August 3rd when I’m there for Vivian’s 2nd guardianship hearing…. I am tired and wondering if this train wreck will ever stop. it just keeps on going, and going, and going!

One more phone call to the Office of Long Term Care and if I can stand it one to a lawyer, if I come up with $1600 retainer fee. To pay a bill or not pay a bill, that is the question. Drowning, here.

Oh, and by the way, my visit with mom on Sunday went badly, as expected to happen sooner or later. Word salad from her as her thoughts were all jumbled together. She drew me an unrecognizable picture of a house I am supposed to design for myself and her, then she walked out of her room as I was drawing a picture of mountains (at her request). She went to the dining room for dinner. She usually eats in her room when I visit. I left without saying goodbye.

100 hours’ worth

100 hours’ worth

Two and a half weeks work. Just to pay one bill. No groceries, no utilities, no gas. Just to pay one bill. Homeowner’s insurance. No choice. Well, maybe I could cancel the policy, but then what? Not a better solution. Next up is personal property tax for the house, due in October. 222 hours’ worth. 5 and a half weeks work. Just to pay one bill…

Backdating Medicaid is still up in the air, and I haven’t heard from them. But the nursing home still wants their money. I already have the letter stating if I don’t pay they can ‘involuntary discharge’ mom. They can do that. I hope not. Even though mom has Medicaid and Rx paid now and in the future, it’s cheaper on them to move her to another nursing home, if there is one, and it may not be in the area where we live, than to keep her. That’s what they said. I asked them if they were solvent…. It does not make sense to me to move her to a strange new place, away from familiar faces, where she has lived for over 20 years. And they know she has Alzheimer’s and the damage that can cause.  Can I get a home equity loan they asked? Really? Who is going to give a person dying of Alzheimer’s disease and with major debt, a loan? The house is in her name per the Medicaid application process, and even though I have POA over F & M, I haven’t worked in over 3 years, so I am not a good risk either. I’m working full time hours at one job for now, which will end when the season is over, and still part time hours at another job. And that’s at half the pay I was making, but not in the management position, so I get that it’s not the same. So why would anyone go through this much trouble to care for a parent who has Alzheimer’s disease? It’s too much. I’ve haven’t seen mom in over 2 weeks. I’m working 50 hours a week in 2 jobs, and have less time for myself than when she was at home. How can I help her hold on to what ALZ is taking away from her, when I’m not there? The nursing home doesn’t. Her family doesn’t. I don’t have time to waste on pity, guilt, or anger. I know that won’t help. I went to visit my niece, and then spent a day with my father (who is 83 and has not gotten his future plan together) at the farm. They are helping me with some financial support, which is amazing. Mom’s ex-husband, and her grandchild are helping me get through this.

How can I help her hold on to what ALZ is taking away from her, when I’m not there?

There is no happy ending here. It will surely end the way it does for everyone with ALZ, 100% fatal. But it’s not quick or painless. It’s a slow and lingering death. Little by little it chips away at your brain (to use an old phrase), until you are bedridden, immobile, and just an empty shell. I wonder if Nancy Reagan had not been so private and told her story, where we’d be right now with research and a cure? More and more people are coming forward as this disease has touched them or someone near and dear to them. And you know that helps. That 300 million dollar budget increase is on the table right now. The major piece that is missing is a network of communication and cooperation from all parties involved. None of the government agencies I deal with talk to each other. Not the IRS. Not Medicare. Not Medicaid. Not Social Security. Not local, state, or national government agencies. And you can bet the private companies: retirement benefits, insurance companies, pharmaceutical companies, hospitals, nursing homes, oversight agencies (both government and private) don’t either.

I wonder if Nancy Reagan had not been so private and told her story, where we’d be right now with research and a cure?

What bothers me the most in this situation (other than mom having ALZ) is that this is not a new disease, it’s growing leaps and bounds, and still, it’s like a new day for everyone involved. Everytime. Where is the game plan in place the minute anyone is diagnosed with ALZ? There should be steps in place for every stage, and take into count for every action and decision, what is going to happen in the future. Every decision made by a government agency employee, or private employee affects the future. Why are they not working together specifically for Alzheimer’s disease? Why do you have to deplete your assets to apply for Medicaid and then not be able to pay the IRS income taxes, or any major bills that will be coming? I know there are lots of diseases and causes out there that deserve just as much attention. I hope someone is out there advocating for those. This is my disease and this is my cause. I may be swimming in the middle of the ocean, but I will not stop. I will not shut up. I will not go away.

A letter to my mom on Mother’s Day

A letter to my mom on Mother’s Day

Dear Mom,

If you remember the mom you were, you don’t show it now. But I remember. That’s why I’m still here with you, and will always do the best I can for you, but it is hard. Hard to watch you decline, hard to watch the care you receive, or don’t receive, and be helpless to make a difference. But I keep trying. It is not the natural progression of age that caused you to be this way, it is Alzheimer’s Disease, and I know you are scared. Scared to be alone, scared to forget, even scared to live, but maybe not so scared to die. When your quality of life is diminished, you don’t want a feeding tube, and I agree. What’s the point? This life is done, let it go.

I will try to be strong for you. You were always a survivor, and even your grandchild learned that from you. You did what you had to do and were unapologetic about it. You got your divorce, and without alimony or much child support you got us through it. You almost didn’t make it when cancer arrived and changed your body forever so long ago. Funny, your ex-husband, my father, has finally started helping you (and me) a little financially. I am grateful for his help, or anyone’s help for that matter. My neighbors across the street invite me over for dinner a couple times each week. I appreciate that as well. We watch ‘Wheel of Fortune’, like everyone else, and try to guess the phrase.

I want to rewind the last 4 years and so badly change the outcome, and wonder what life could have been without this thing happening to your brain. I wish my 3 siblings were helpful and caring but they aren’t. Sometimes I wish we had a little more ‘normal’ in our life. I wish you had found a partner to share your life with, and especially now, someone besides me to love you. To care for you. To hold you when you are scared, or sad. Or mad. It breaks my heart every day to see you like this. You tell me to slow down and be patient with you. Every task is a challenge and you are trying to remember what to do, even with the simplest of tasks.

Maybe you understand when I tell you our life is so different now. Maybe you don’t understand why you can’t call up the doctor, or go get your hair done, or go for a drive in the car. Or why I’m not there 24/7 like I used to, because I have to work more. I know what you need to have ‘your best life’ right now, such as it is. It is the same for all the residents there, and everywhere who are suffering from this disease. You don’t want to be alone. In a bed. In a dark room. That time will come soon enough, when you can no longer move your body or communicate with the outside world. What then? No happy ending…

So until then, I will be here for you, love you, hold your hand, and give you a 20 second hug, because that’s what it takes to make it real. Happy Mother’s Day. I love you every day. And maybe some candy and flowers!

Your baby boy,

Phillip Edward

April’s fool

April’s fool

When I started this journey over 3 years ago I thought I had a noble purpose: to take care of my mother. Caregiving is supposed to be a gift. Countless people said what a ‘good son’ I was, and how fortunate my mom was to have such a son to help her. And now we get to the part I was in no way prepared for. Not by the books I read or the so called experts out there I listened to. We had a 3 year plan and almost made it but stumbled before ‘making it home’.

I thought I was doing the right thing, taking care of life business, pushing that rock uphill over and over. Then it rolled back over me.

All along no one would tell me what would happen after. For instance, when you apply for Medicaid your assets are limited to $2000 cash, a house, and a car. No one could answer my question about how to pay bills after the money is gone. Her Social Security check is supposed to go to the nursing home, except for $40 dollars she gets to keep. For some reason her Social Security portion is billed at a greater rate than she actually gets. How is that possible? Sounds like another error. Her prescriptions and colostomy supplies are over $300 a month.

What about supplemental insurance? Forget about it. No outside doctor visits, no dentist, no eye care, no hearing care, or hospital visits. And why would a person with Alzheimer’s Disease confined to a nursing home have to sign an ‘intent to return home’ document in the application process, when that is not reality. And a car? Really? I did say Alzheimer’s Disease. BTW: she was denied Medicaid benefits April 1. But I will get to that.

Guess what else happens in April, say on April 15? Taxes! Her State and Federal taxes due are $5000. And that is because we had to spend down her assets prior to January 1, 2015 making them taxable in 2014. Sorry Uncle Sam, mom’s broke. Sorry credit cards, mom’s broke. Sorry doctors and lawyers, mom’s broke. Sorry nursing home, you can have her whole Social Security check, but how will I pay for her prescriptions?

So let’s talk about Medicaid fraud from the inside. What do you call it when it happens from the inside of Medicaid? And throw in a few mistakes on top of that. My Medicaid application case worker is in Miller County. She doesn’t answer her phone, and it’s a desk job right? The Garland County DHS office is right down the street from where I live. I pass it every day. But they don’t handle applications in their own county. Too personal. What could be more personal than Human Services. I can’t stop in and ask questions, or drop off documents because why? So I get it. Their job is to see you don’t get Medicaid for whatever reason they can find. That’s the inside Medicaid fraud: that you don’t get it.


Way back in December I requested 5 years of bank statements at a cost of $300, getting ready to apply so they could go back that far. Don’t give anything away for the last 5 years. Record everything. They didn’t ask for that. She can’t have a trust and apply for Medicaid either, so we got the house out and her retirement out. New deeds, and bank statements covered that. Our Miller County case worker asked for a full copy of the trust, anyway. $20 dollars later she had one. When I questioned her on it, she said she didn’t really need it after all. She asks for monthly bank statements which note her balance, but not the last one. Not March. So on April 1 she denies mom her Medicaid benefits because of ‘assets over the limit’. Had she or her supervisor in Little Rock, checked on April 1 they would have seen that her assets were well below the limit. Seems like another random mistake to me. A very costly mistake which puts mom back on private pay at a rate of $170 per day, going back to January, in a nursing home where I have a Federal complaint and a State complaint registered.


I’m still not over that shock and it has taken me several weeks to even act on it, and I am working 2 jobs now to pay my own bills. I replied to the Miller County case worker that I would need a hardship waiver, and would appeal of her decision. I haven’t heard back from her, or her supervisor or the assistant director of DHS in Little Rock. Next I am closing mom’s checking account and signing over her Social Security check to the nursing home. I am slowly erasing my mother’s life. Bit by bit. Not only will Alzheimer’s Disease take her identity, but real life is doing it to her as well.

Yep, I am April’s Fool for trusting the people in charge to do the right and true and fair thing. So what is this Fool to do? Backed up against the wall again, but this time really more like being put in a cage and dropped into the river. So much for this caregiver. So if I survive this, I might be a little different from now on. Not so nice…

Standing up for my mom and everyone with ALZ

Standing up for my mom and everyone with ALZ

Growing up I was surprised to learn not all State Capitals looked like the one in Washington, DC. Ours did in Arkansas. It looked like our US Capitol building. My mother worked there in the Secretary of State’s office. She wasn’t the Secretary, or the secretary. I don’t remember what she did, but it was cool. We’d go there at Christmas and see the lights and the big tree in the Rotunda. The miles and miles of cold white marble and the warm golden oak wood was, and still is such a contrast. You know if those walls could talk what they’d have to say, and not all of it good.

But here I am, almost 50 years later, going back to tell her story to a bunch of Legislators, and both State and National Alzheimer’s Association people. It’s Alzheimer’s Advocacy Day at the Capitol and we are painting the town PURPLE. Accidental good timing brought me here, to this event, as I was going it alone to ‘protest’ with my big poster with my mother’s picture on it. I called the Secretary of State’s office because they are in charge of what goes on in the building, and I didn’t want to get arrested. I went on the ACLU website, just in case, to learn my rights. Always a good thing to know. And I have someone in mind for my one phone call, just in case. One person can go just about anywhere, as long as you are polite, and don’t block traffic. They called back and weren’t sure what I wanted, and I said I wasn’t either, but this is my story and I asked what are my options, not wanting to get arrested, and all. She said I could set up a press conference on the steps of the Capitol at a later date, but in the meantime, there is a luncheon for Alzheimer’s awareness coming up real soon. I jumped at the chance to attend and immediately got on the phone to RSVP. I didn’t know what it was, but I was going to be there, with my picture of my mother, and butterflies in my stomach.

arkansas state capital

It was a typical busy day, I guess, with lots of protesters on the front steps. The Governor was supposed to sign the REFRA bill, so I thought our message might get lost in the fray. Maybe that’s the way it always is. I can believe there are daily bombardments of lobbyists plying for attention for their important issue. So how do you get heard? That’s what the D.C. person was for, to show us what to do and how to get heard. It was a lot like getting hired. You have your 30 second speech and if you get more time you add more points and tell your story. And then ask for a call back. Ask them what can be done next. What will they do? The pre-planning meeting and the lunch were in the Capitol Hill building across from the Capitol. The best thing I found out was there is a State Plan for Alzheimer’s Disease, and while other attendees were reluctant to tell their story, I wasn’t, and took my chance to tell my story. Lunch started and a few Legislators came and went. I was waiting for mine to show up, although I had old information from the internet, I missed one of mine who came in early, but have connected with her on Facebook since. Of the two I was looking for, one of them came in late with another Legislator who is on the Medicaid Oversight Committee. I pounced, and nothing happened. Oh, well, at least I got his card and have since e-mailed him my story. I’ll follow up with him in the future.

Phil and his purple bow tieSadly, the other Legislator killed the conversation by talking about Medicaid fraud being a budget stopper. I didn’t know how to respond, but now I have an answer: who is allowing Medicaid fraud to happen? Don’t just tell me it’s a problem, tell me what you are working on that is a solution. I’ll be asking him that question as it’s so important to him. It was a classic case of smoke and mirrors, and I just turned on the fan to clear the air. Apparently this ‘game of chess’ is quick and you have to think quickly to stay in the game. I may not be quick on the draw, but I am relentless. After lunch we walked up to the State Capitol and up to the House of Representatives into the observation Gallery to watch the proceedings. The first checkpoint is at the entrance to the Capitol. I lost the stick handle for my poster. No problem. I took it out, and still had my sign. They kept the stick for me to retrieve on my way out. Up through the gauntlet of protesters and news cameras on each side of the wide marble steps was quite intimidating, but I went up anyway. I had my sign, too.  At the entrance to the Gallery, I lost my sign. LOL. Ok, fine. But I was there, on the front row, plainly visible, sitting next to a Beauty Queen. You gotta know where to sit. In my blue overhauls, long sleeved white shirt, and red bow tie, I was quite the dapper country gentleman. So next time I’m there, in the same outfit, they will remember me. It’s my job to tell them my story.  

Since then, I’ve read the State Alzheimer’s Disease Plan, and found it lacking in the second half of caring for someone with ALZ. There is also a State Plan On Aging [PDF]. Need to read that. I’ve e-mailed my story to the Arkansas Times as an alternative view of the recent caregiving articles in the press. And I’m reading the Minimum Care Standards for Long Term Care put into law by Ronald Reagan in the 1987 OBRA. You may remember he died after suffering many years with Alzheimer’s Disease. I bet he had great care. So the Republicans know about this problem, and the Democrats also know. That makes it bi-partisan. That makes it everybody’s problem. No one is immune. I’ve also bought a purple bow tie.

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Brutal truths: Family and Medicaid

Brutal truths: Family and Medicaid

Still waiting… like in an elevator, before the doors open.

When you are forced to deplete your funds to apply for Medicaid, they (the enforcers) don’t tell you how to pay your bills after that.

As long as you don’t have any money you can apply for Medicaid. Mom gets to keep $40 of her Social Security check every month. Her prescriptions are almost $300 a month, her new insurance premiums (both Rx and Med) are $270 per month. Her real estate taxes are $600 a year (I’m supposed to pay for everything other than her healthcare, by the way). I made a grand total of just under $4000 last year. If you can’t afford it, you don’t buy it. If you look at it that way, she won’t have prescriptions or supplemental insurance. No drugs and no healthcare. Just Medicaid (if she gets it) and Medicare A&B, and maybe D at some point. Wow. Is that how it’s going to be? Why is it that when you apply for Medicaid, and have a lot of prescriptions, not to mention Alzheimer’s Disease, nobody hears you? Nobody answers the obvious question? Now what? They look at your finances through a microscope (hopefully they have good vision), and are supposed to have done this before and should be able to tell you what lies ahead. But they don’t. I should have kept mom’s last $10,000 dollars to help pay for her future expenses instead of giving it to the nursing home. But that was not what I was told to do. I should have given the nursing home the part of mom’s Social Security income they get and kept the rest. But I didn’t. I wasn’t allowed to. It all had to go, but $2000. If I had done that, told them to go to hell, where do you think mom would be? Think she would have gotten Medicaid? I doubt it. The rules say she cannot have more than $2000. Who set that up? I can’t wait to find out who set that guideline in place. I bet their mother didn’t have Alzheimer’s Disease. So I ask again, now what?

The rules say she cannot have more than $2000. Who set that up? I can’t wait to find out who set that guideline in place. I bet their mother didn’t have Alzheimer’s Disease.

Some people, a lot of people, ok, almost everybody wants to ignore the facts. The facts of life. LOL. I made a joke. It’s too hard for them. I bet in training, they teach them to not become emotional attached. What could be more important? They ignore the fact that my mother is a human being who had a life, and 4 kids she raised mostly on her own. She survived colon cancer 40 years ago when most people didn’t. And melanoma 20 years later. Another big one, she survived. She is a survivor. This she will not survive. She will lose her memories, her friends, her children, and her life in the end. Really, she already has. This is not funny. This is her life. So, I ask you, why is it so hard to get decent, respectable, caring people to help her. To them she is a piece of paper. Flat. 2 dimensional, and easily put away and discarded under a pile of other papers. I get that people are overwhelmed and confused, and poorly trained to handle all they have to do. But they aren’t trying to make it different, to make a change, to make it easier to deal with. They aren’t even recognizing her as a human being. I don’t care if it’s just too much to handle. I don’t care if you have 20 or even 100 cases. Or 1000 cases. Or a million. That is your job. Believe me I know it sucks, because I’ve had jobs like that. However, I was not dealing with people’s lives and deaths. Just weddings and birthday parties. But even that, I took personally. It sure was to them. If it’s not right and you know it’s not right, do something about it. Take a stand. Raise a red flag. Say and do something. And do not stop. Keep pushing. Make change. People can do that. Our numbers are growing. We haven’t even gotten to the crest of the wave of people who are caregivers for aging and dying parents. And then what happens to all those caregivers? It’s a gift, right? I do love and appreciate when people send happy thoughts, hugs, prayers and words of advice and encouragement to me. It helps me and everyone it touches. But I want more, I want them to send my story out to people they know, people who may be able to start making a difference. Do that for me and my mom, please. Do that for someone else who is not being heard. I have opened the book on our lives, not keeping it private. The good and the bad parts are out there. I’m telling our story to whomever will listen and to a few who don’t want to listen…

Wait a second, don’t I have siblings?

Didn’t I say mom had 4 kids? Yes, yes, I did. They all live in Arkansas. But remember, I moved 2000 miles and gave up my life in California because I loved my mother more than I love Napa Valley. Two of them are useless and causing problems. They aren’t helping. They are making this worse for mom and me. My oldest brother is actually the helpful one. He helps me, so he doesn’t have to deal with mom. He helped me, in a big way, moving me back to Arkansas. BTW: he’s done that before after I graduated from college, and needed to start over. He’s helped with work on the house. A lot. He stayed with mom when I needed to get away for a few days. He’s done that 3 times in 3 years. Mom never unpacked her boxes when she moved in here. Never put out her décor, much less her kitchen stuff. She never did any work on the house except fixing the roof, which took years. Ugh. She still had the cats in the basement ‘kennel’ and the washer and dryer down there. The steps down were a big safety problem for her. I took that space over as my art studio and the cats moved upstairs into their own space. So did the W&D. Mom is not a hoarder. Her house was mostly clean and orderly. She folded her plastic grocery bags for reuse. Or made her great-grandkids do it. Mom did cat rescue for over 20 years. She would adopt the un-adoptable ones and give them a better life. After she retired from AT&T that’s all she did. And take care of her grand- and great grandchildren as she could. When my mother could no longer take care of everything in her life my niece took over, but she had a family of her own and worked full time. She pleaded with me a year before I moved back home.

So now, 3 years later, her full time caregiver/son for 3 years gets kicked to the curb. Hopefully I will survive. She won’t. I should be able to get a job and take care of myself. But even my hands are tied behind my back. I have to stay here, in this house, in this town, in this State, because my work as a caregiver is not done, yet. And now, I’m a little angry, and just crazy enough (thanks to familial genes) to take everybody down with me when I fall. That was the ‘jumping off the cliff’ point for me, back in January. I’m on the edge of the cliff and the ground is crumbling… What am I supposed to do? What are my choices? Fall or jump? There is a slight difference between falling and jumping. Not that I would ever really jump off a bridge or out of a perfectly good airplane. When you jump, you are making the decision, you are pushing off. When you fall, you give up. You drop. But when you jump, you take the courage from wherever it comes from and leap.  I grew a pair of wings that day.

What I have learned since then is there are people all over the world who have my same story.

They have lived my life, or they are living my nightmare, right along with me. So this is not just about me and mom. Our story, our future, is about a lot of other people, too. An artist friend of mine, who is very intuitive, said she saw me as a guide helping people cross a bridge. I wasn’t sure what that meant until now. I see it for myself. The encouragement I have received recently, and the responses to these letters, keeps me going. That and the letter writing campaign I’m on. Everybody is going to know my mother.

The elevator doors haven’t opened yet, so I don’t know what floor I’m on, and I don’t know how slippery the floors are going to be this time? The bills keep piling up, and I don’t have any money to pay them. And when I get a job, to pay my own bills, am I supposed to pay her bills, too? I have lived both well and poor. I know both very intimately. This is the poor side. I make a little over $9 an hour at Old Navy, part time, but that is not paying the bills. And for me to get a job that pays the bills costs money: clothes, grooming, gas, internet, time. I know the drill. Whether I get that job here, or someplace else is still in question. And until I get that job, what else am I doing? Going to the grocery store last night after work, was a humbling experience for a foodie who has lived and worked in Napa Valley. I’m all about ‘Senior Discount Day’ at Kroger and coupons, already. This time, I went to the dollar store first to see if they had what I needed at a cheaper price. I am not going on a rice diet. Not because I have any dignity left, but because my metabolism is such that I need to eat vegetables and protein, not starches. I splurged on Kroger brand EVOO. But I had to think about it, and every expense I made to justify in my head (and budget) for that purchase. The black-eyed peas were still in the clearance section since New Year’s. Now they’re marked down to .99 cents. I’m still waiting for our good fortune.

Phil Chwalinski

Son & Caregiver

P.S. It’s 3am (I hope to go back to sleep shortly) and I wanted to update my situation and mom’s. I went to see her yesterday (March 6) after talking to the ‘complaint department’ of long term care units. Lo and behold the DHS person in charge of the regional Medicaid applications sent my letter on to the ‘complaint department’. This was in December. They investigated the nursing home and saw some deficiencies. Then closed the case. WTF? Never contacting me. Never sending me notice. BTW: if the case is closed you cannot reopen it. You have to have new problems, because those past issues have been resolved…. I asked her why they didn’t contact me and she said it was because it was a 3rd party e-mail and they didn’t have an address to send the letter. They didn’t bother to find out my address, either. I gave it to her and explained my displeasure, frustration, mistrust, and anger in this situation where few people are doing their jobs. And that I’m not going away, not giving up, not stopping. Who’s your boss? And their boss? And their boss? I finally got up to the Governor. Already working with his office and having the same issues with them…. What do they say: when you assume you make an ass out of you and me? Follow up people! Do not just assume it’s taken care of. I have to contact the guy in the ‘freedom of information’ department and go through a long process to get the report. Ok, you could have made it simple, but you didn’t. Now I want all the documents on this nursing home. All of it. I am that one mosquito you can’t swat away. Ignore me, and I just get bigger.

You know what? No one in any of these departments has asked ‘How is your mom?’ Some days are better than others. She was fine yesterday, thanks for asking, except she has a new pain in her leg and can barely walk. But nobody seems to care about that at the nursing home. I’ve been asking for over a month for the doctor on duty at the nursing home to look at her leg. Nothing. I asked the nurse on duty (who I like) and she said they did nothing about it. What exactly are they waiting on? Her to fall and break something? Talk about negligence. I am not going away. I am not giving up. I am not stopping. On a good note, she is doing sit ups in her bed. I kid you not. She showed me. Better than I can do…. : )

A nursing home nightmare

A nursing home nightmare

This is my second open letter. You can read the first here.

So I sent that letter telling of my Mother’s plight (and mine) as an attempt to raise a warning flag, and focus awareness in an area of what I will call ‘aftercare’. There is a black hole into where this issue falls, never to be heard from again, because caregivers and resources are exhausted, and depleted. The caregivers are just glad it’s over. They are also suffering from their own lack of care and must focus on healing themselves, both physically and mentally. The resources, and I mean the nursing homes, associations, and healthcare system are so over booked they cannot stop and think about what is wrong and attempt to create change. Everywhere I turn it’s like they have never dealt with Alzheimer’s disease before. Or, they’ve never heard of this policy or request for documentation.

I also wanted to see who would respond to my letter, and who did not. I’m naming names and naming agencies that are helpful and those who are sorely lacking. If you’ve read anything you know this disease is increasing at an alarming rate and our healthcare system is not prepared for it. Even now without the home caregivers, the system would be overwhelmed and collapse. So you want to ignore the problem and hope it goes away? I won’t let you.

I’ve read the books (Frank Broyles’ being the best), and attended the meetings, and support groups and gone to all the agencies for help and information (The Caring Place in Hot Springs is the best). I know more about Alzheimer’s than I can stomach. I can tell you from someone who is in the middle of the end that I was not prepared for the carelessness, lack of accountability, unethical practices, ignorance, and outright mistakes on the part of the people in charge of even basic needs and requests. It is rare to find anyone who is caring and helpful. The process of, day to day care, health insurance, retirement benefits, prescriptions, Medicaid and other applications, and medical care handled is truly an impossible task. I have been blocked at every stage by policies, incompetence, and paperwork. I have to prove this or prove that. Or, they expect that I am lying, so they aren’t even attempting to help. Some questions are so un-thought out that it doesn’t apply to Alzheimer’s. But you still have to jump through that hoop. It doesn’t make sense, and sure isn’t logical to consider Alzheimer’s care and issues simple, and be callous towards the caregiver or the victim of the disease.

I was also not prepared for the ‘minimal care’ given to patients on Medicaid or even private pay, in nursing homes with ‘memory care’ units. My job for the last 3 years was to take care of my Mother. I had to learn pretty quickly what Alzheimer’s was and what could be done about it. I kept all her doctor’s informed and tried to keep her informed, on track with their advice, healthy and somewhat happy. We had a 3 year plan. The first 6 months were great. She improved dramatically. She went from a weak and bent over ‘old crone’ to a happy, healthy, tall and vibrant senior citizen. Then one of her doctor’s made an off-hand remark about her improvement, stating that she ‘could live another 10 years’. She went to bed and didn’t get out for 2 months. She didn’t want to live with this disease for 10 more years. She got more depressed and gave up. Her reaction threw me for a loop. I had worked hard to get her to a decent level of health and she just quit. I know it’s her right, but I struggled with this and still do. I was angry for 6 months and needed assistance for my own healthcare.

All along this doctor allowed time for me to talk, for which I am forever grateful. He helped me get through my issues with this situation. I’ve had counseling before when my parents were divorcing, and knew the benefits. Like I said, I’ve read the books and knew where this was going. There is no happy ending here. But my job was to take care of my Mother and I took that very seriously. I asked questions and when I didn’t like the answer, or the care she was given, I demanded better. And I got it. Until the end.

Then it went downhill from there. CVS Caremark Pharmacy, who handles AT&T’s Employee Retirement Prescription Benefits, flat out accused me of lying and made me feel like a criminal for asking for her necessary pain and Alzheimer’s meds be filled on a timely basis. Her primary care physician, whom she has had for decades, started working with another company (Renaissance Healthcare in Little Rock) and even though her PCP was great, and the remodeled clinic nice, their attention and care of my Mother was not. Their care and attention was cold and callous, and their excuses, lame.

Not to say I did everything right, either. I argued with my Mother and her healthcare providers about her situation, all along trying to make it better for her. I tried to keep her healthy. I repeated to her over and over ‘stay as healthy as you can now, for as long as you can, because the alternative will be long and painful’. I don’t think she believed me. We had a 3 year plan. That’s what she wanted. Knowing about the Medicaid application process coming in the future, her care providers and I made this plan so she would be ready when the time came for long term nursing home care.

The time came knocking last fall. She got a really bad UTI and noticeably more disoriented and confused. That’s what a UTI does to senior citizens. I didn’t know that. I took her to the emergency room. They were supposed to help her. What they did was give her an antibiotic that is known to make senior citizens ‘crazy’. They asked me if she was sensitive to antibiotics. I didn’t know, but usually not. She was to this one. Even more than before with just the UTI, she was out of her mind. So now my Mother has 3 strikes against her brain: Alzheimer’s, a UTI, and an antibiotic, all working against her. That was a Friday overnight. Her confusion and disorientation did not improve. At 6AM on Sunday morning I saw that she was in the bathroom with the door closed which is not unusual. At 7AM she was still in there, so I knocked on the door. I found her naked from the waist down, clinging to the sink, in a very hot room, and totally out of her mind. I don’t know how long she was in there, but I got her dressed, and out of the hot bathroom. I gave her the morning pills and made breakfast as usual at the kitchen table. She couldn’t find her mouth with the fork.

I dialed 911. They came. They helped with advice. We put her to bed. An hour later when she needed to go to the bathroom, it started all over. More confusion and disorientation. She couldn’t figure out how to go to the bathroom. I called 911 and this time we took her to the emergency room. She was in the hospital 4 days. Then, because she was going to be discharged, I demanded extended care for her and not at home. She went to a wonderful place (Lake Hamilton Health and Rehab) 5 minutes from our home. She was there 6 weeks or more. She had a semi-private room without a roommate right next to the nurse’s station so they could hear and watch her. She had alarms on her bed and wheelchair.

I was there every day. Visiting her, helping her walk, eating a meal with her ($5). She had physical therapy, speech therapy, and occupational therapy almost every day. I brought a big cake on her birthday and everyone, including the staff, got some. She got her hair done there every week, just like always. All along Medicare and her insurance was taking care of all the bills. We also had membership in the ambulance service. I have since gotten bills from all three places: Mercy Hospital, Lifenet Ambulance, and LH Health and Rehab. I was surprised by the bill from the ambulance service. What does paid membership mean exactly? I thought it was insurance for when we needed it. I was surprised by the bill from LH Health and Rehab, too. I was told her Medicare and insurance would pay for the first 90 days 100%.

Again she improved. They took the alarms off her bed and wheelchair. She was using the walker on her own and getting around more. Then they took the walker away from her, and put the alarms back on the bed and wheelchair. Why? I’m still not clear on that. Then she stopped getting better. She ‘plateaued’ as they called it. Not getting better, but not getting worse. So they said they would re-evaluate her in a week and possibly release her a week after that. And that’s what they did. I had to find a nursing home that would take her in a memory care unit. I had 2 choices and flipped a coin. One was slightly ahead because the woman who does my Mother’s hair has two relatives in there. That’s when the real nightmare began.

Admission to Village Springs went smoothly, as I’ve done that before recently with LHHR. I signed a bunch of papers and got her in there. It sounded good enough what she said they did in the memory care unit. I paid for the partial month with the understanding I would be applying for Medicaid for her. We also took her month’s pills to be used from LHHR. Over $13,000 later I am waiting for it to get better. I wish they were as good at taking care of my mother as they are at getting their money. They do that really well. They want their money, regardless of the service, or lack of service. And they add late fees, just like a loan shark. The first problems I had were so alarming I had a meeting with the administrator, head of laundry, head of nursing, and one of her attendants on November 17. The issues in a short list were:

1. Security

I explained our family’s difficult situation and signed a privacy note, not to relate any information about mom being there. They were careless and let that information out to the first person calling about her. Their excuse was ‘it was a new employee’. Think about that for a second. In that statement, they are admitting staff turnovers, poor training, careless staff, and poor management. In the medical fields, privacy issues are just like in the hotel industry, which I am very familiar with. You don’t tell anyone, in person, or on the phone who is there or what their situation is.

2. Clothing missing, not labeled, and wearing other people’s clothes

The first time I saw her wearing other people’s clothes, I freaked. I was told her clothes would be labeled by staff if they weren’t already labeled. Nobody checked. What she was wearing was clearly labeled as someone else’s. When I went to the laundry, it was a mess of disorganization. I couldn’t get through all the hanging items stacked 2 deep to try and find her clothes. During the meeting they found some of her missing clothes. I was told not to leave anything of value with her. The $20 she kept in her purse, in a coin purse, was taken. Along with her perfume.

One hearing aid disappeared and the staff didn’t even know. This was after I found her hearing aids put in backwards, and talked to the administrator. He made a note and put it above her bed. Then the hearing aid case disappeared. And finally the other one disappeared. They blamed mom. So they don’t help her with them, and don’t check the trash before they dump it? Really? Some residents spend their whole day wandering into other rooms and going through other people’s stuff. These are medically necessary items. The last time I met with the former administrator he offered to replace her hearing aids.

3. Dog is not a therapy dog

The dog was afraid of me and mom, and barking and cowering. Every time. Even to the point of barking at me in the front lobby. A scared dog is a dangerous dog. Who set this up? The dog is no longer there.

4. Activities for residents

I don’t see much going on for them to do. The attendants spend their time with minimal care and not helping them maintain the best health possible. I don’t blame the staff first, I blame the management. Understaffed, overworked, over stressed, the staff barely take care of basic care. In my mother’s case she still walks around with other people’s clothes on, bad teeth cleaning, and a full colostomy bag. How fast would you decline if you had this happened to you? If this was how you were taken care of, how would you feel? It’s not like she can come home. She can’t even go to the bathroom on her own, anymore. Her sleep habits are also affected, as is expected, by Alzheimer’s. The most activity she gets is pacing the hallway, and because of that she is labeled ‘a wanderer’. What else is she supposed to do? That’s all she can do by herself. I know her. She is trying to hang on with all she has left.

5. Dining room is an unorganized, difficult to maneuver around, mess

I explained how it should be set up. They moved the tables apart, and keep the food carts out of the room, now. It still needs improvement to be more efficient.

6. Back porch and outside space is poorly maintained

Indoor furniture and chairs were everywhere. Nightstand drawers were on the table for weeks. Old décor still displayed. Dog poop in the grass. Weeds everywhere. I can say the new administrator offered that his wife and I can redo that area in the Spring.

7. And last but not least: I have yet to meet the Doctor in charge

We’ve had appointments, ‘he’s in the building’, but nothing. I met the nurse once, but not the doctor. Makes me worry about her medical care. It’s been months…..

So I worry about her day to day care, her long term care, and what happens after that. I worry about me too. It’s just too much for me to handle. Bills are piling up, insurance issues, and I worry about getting a job that pays all the bills, that will take me away from here. How can I take care of her when I can’t take care of myself? How can I take care of her, and take care of myself at the same time? People and organizations say ‘being a caregiver is the best gift’. I disagree. It’s the worst gift.

Phil Chwalinski
Son, and caregiver

This was originally published on our Facebook page.

Where’s help for caregivers?

Where’s help for caregivers?

Open Letter to Everybody,

It should not be this hard to die from Alzheimer’s.

If I had known how hard the end would be and how little and conflicting help I would get, I would have taken being crazy in California over crazy in Arkansas. I chose leaving California to take care of my mother in Arkansas because I thought I could make a difference in her life and it would keep me from completely going crazy with worry about her. I was wrong. Not that my life in California was perfect, but I had a job(s), and sort of a life.

It’s like driving on a freeway in rush hour, with everybody going in the same direction. Hard to get on, hard to change lanes, and harder to get off the freeway. No fast lane and you have a lane for car-pooling, that you can’t get into if you are single. You watch for signs and what is going on around you, and give it your best shot. Then there’s a pothole. And a detour. And an accident stopping traffic completely. It’s amazing you get anywhere at all. Or even try.

You want to go places and do things with your life. Do something. Leave a mark that’s not a blood stain. I set up my life to be mobile, in the beginning of my career. I could pack and close the door and be gone for days or weeks, depending on the task. That’s what I wanted to do: troubleshoot. And I did that, for a while. Then you get sent to places that can’t be fixed, or don’t want to be fixed. Other people’s agenda. Brick wall with land mines in front. Hard to swallow when that’s what you love. Fixing things. It was fun until it wasn’t.

I’ve taken the leap off tall buildings before, that’s how the best stuff happens. Fearlessly with blind faith that it would happen. As planned. Pothole. Land mine. Brick wall. Stop. So I was ready to take another leap and move back to Arkansas to start over. Regroup and reorganize. And take care of my mother. How’s that working? Not well….

January 28th marked my 3rd anniversary here in Arkansas. Mom is in the worst nursing home she can’t afford. She has to be broke to apply for Medicaid. Not get it, just apply for it. She keeps the house (intent to return, like that’s going to happen), and a car (which she doesn’t have, and couldn’t drive anyway), $2000 in the bank and $40 of her SS check every month. Her last $13K went to the nursing home for minimal care. $5K a month for minimal care in a lock down unit. That’s all they have to do. They don’t even brush her teeth. I took her for her 6 month checkup at the dentist and the hygienist said why don’t I brush her teeth then? Helpful, no? No. Not even. These rules and guidelines just don’t make sense. I have spent so many hours on the phone and in person with unhelpful companies and people. It’s a nightmare, really. Who would go through this? I am sick of it. Want to drop everything and go somewhere else. Let somebody else pick up the pieces. It would be easier if she just died. They are killing her faster. How terrible is that?

This system is a mess. It’s not like she’s the first person to have Alzheimer’s. Where are the guidelines for help? I read all the books, and talked to all the agencies. They say they will help on paper, but when it gets down to it, they are just people. They make mistakes, and have hundreds of people just like me beating down their door. It ain’t right. This is a sad story. What is happening to her is not right. She had cancer early on and wouldn’t qualify for long term benefits. She will not recover from Alzheimer’s. Nobody does. This is not a 50/50 chance. It is a certainty. It is hard enough to care for someone with Alzheimer’s. But it is made impossible to maintain by all the red tape. When someone has this disease, they should go on a fast track when they are diagnosed. Like a flow chart: one question leads to another and then another. But it doesn’t.

I was called a liar by the pharmacy plan she has after pushing them repeatedly to fill her necessary prescriptions. They have the recordings. They can look it up. They didn’t bother. Not their agenda. Her insurance benefits are changing in the middle of all this, and they stonewall, and make it impossible to comply. Then they cancel you. They dump you. Like trash.

Where is the help for catastrophic healthcare? Why did I work so hard for 3 years to now let the professionals screw it up? And where is the help for the caregiver? Nowhere. I have to trudge along and accept poor outcomes and accept that I’m only human, too.

A son, and caregiver,
Phil Chwalinski