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

About Phil Chwalinski

Phil spent 25 years as a specialist in catering and special events in Arkansas, then Florida, and ending up in California for 11 years. He was a Catering Sales Manager at a hotel and as a Wine Educator at a luxury winery in Napa Valley, CA.

For the last 3 years he has been a full time caregiver for his mother who was diagnosed with Alzheimer's disease, back in Arkansas.

One thing hasn't changed over the years - Phil is also an artist.