The Meeting
I don't even know how to begin how to describe what happened. My dad ended up showing up at the minute because there was some problem with my sis' inspection. As we met, I could see my mother outside the room (there were curtains though on the doors so she couldn't see us) pacing around with boredom.
Basically, it was as I pictured it would be - the floor coordinator didn't say much. She admitted a couple of problems - offering to try to fix some and saying that some others are just the way they. For example, the staff number is just going to be what it is. She claims that there are 5 people working on the floor 7am-11pm, which is just outrightly untrue, and I pointed it out that this isn't what I see. She admitted that well one of these is the med tech, who she claims helps out with other stuff when they finish with the meds BUT they don't have time to help out. [Lie #1] She also admitted that there's a problem with the evening shift because most of the people who apply for the job are students and there's a high turnover - - - - WELL maybe if they'd pay better, then they'd get better people.
I understand that to some degree that her hands are tied on a lot of this, but I just feel so frustrated. I found out from Mom's neighbor's son that the director of Mom's facility is going to be promoted to area supervisor.
So, I made some phone calls: The Alzheimer's Association referred me to the KS Advocates for Better Care who referred me to the state ombudsman for long term facilities. I left him a message and did the initial paperwork, but the intake person told me that this needs to get referred to the KS Deptarment of Aging. But filing a report with them means that the facility will know that I filed it and the facility will get in trouble. I'm worried that they'll retaliate against my mom, even though the intake person told me that this is against federal law and that they can be shut down if they do that. BUT, what's to ensure that the law will be enforced?
I spoke with my dad about hiring a "companion" type person through Jewish Family and Children Services to just go be with Mom and maybe put her to bed at night. I think I'm going to have to just pay for it, and screw it, you know, I know that I'll inherit the money back from Mom. Why should I fight with Dad about him paying for it when its the same money that I'll be inheriting anyway...or I'll inherit it when my grandmother dies. I figured out that if I pay for someone to come every night for 2 hours, its only about $1000/month, and if this is just supposedly going on for another year. If for $10-20,000, my mom can get some better care, then screw it. Its so ridiculous though. My dad has plenty of money, okay, like a LOT, and he starts giving me this spiel about how he can't spend money now because after Grandma dies, that my aunt might have set up her will so that he'll have to pay a bunch of estate tax, and he has no idea how much, so he better just be prepared. It makes no sense to me; what people can pay more tax then they inherit? I don't quite believe this.
3 Comments:
I am so sorry to hear how things went. You're reliving my nightmare. It's absurd that you should pay the facility a lot of money, then have to pay extra to have someone actually look after your mom. I understand it though. The concern about retaliation hits home too. Alzheimer's creates a unique situation. The resident most likely wouldn't remember to say anything and if they did, who would people believe?
Hiring a companion sounds like a good idea. Having a set of eyes and ears there when you can't be there can give you some peace of mind.
Promoting the director is just icing on the cake.
Good luck.
The thing is that my dad controls all of my Mom's finances. But, it probably is a good idea. I'm curious now about your story. Did you find some way to get better care? I'm so appaulled and frustrated tonight; thanks for comiserating.
Dear Karma,
It's really, really important that you remember, right this minute, the way that you feel. Don't ever lose that feeling - the anger, the rage - you'll need it for fuel to get through your nursing home experience.
Here is the problem in a nutshell. The nursing homes are paying their staff minimum wages and asking that staff to do an incredible amount of work, more than is humanly possible. Taking care of a Alzheimer's person is a LOT of work, I did it for years. No matter how much you pay this institution, it will not improve because the money will not bring in more staff, instead it will be used to improve the bottom line of the nursing home. Paul Ormond, the CEO of HRC Manor - one of the largest nursing home conglomerates, personally made over $14 million dollars in compensation in 2004. (Find out who the corporate officers are of the nursing home your mom's in and then look them up at http://www.aflcio.org/corporatewatch/paywatch/
Things aren't right in nursing homes all over this country. You are absolutely correct. The nursing home situations you've blogged are being played out across the nation, day after day, night after night. Nursing homes are our national shame. They can't be stopped, they can't be leashed, they are incredibly powerful. They are the fourth largest industry in the US. They have flourished for a number of reasons, but most of all for one all important reason - as a society, we've let them. They financially benefit from the suffering of our elders and parents and aunts and uncles. I repeat, they benefit off the suffering of others. And we let them.
They get away with it for a number of reasons. Nursing homes don't have the same market constraints on their product/service that normally controls and expels failures in the free market. The free market is awesome - it sucks when it comes to nursing homes because it can't expel the failures - we keep right on using them. Think about it, we will use a nursing home ONCE in our life - for either our mother or our father but usually not both and when the average life span of a nursing home resident is 2 years, they know the "problem" - (vocal daughter raising issues, wanting to change things - YOU) goes away when the patient dies. On average, in two years, advocates are gone and a new trusting daughter is wheeling her mom in the front door as you're exiting the back. If your mom wasn't in this nursing home, can you imagine yourself reacting like you are right now? No, you use a nursing home once, and when it's over, we don't go back, no repeat customers to worry about. God, they're brilliant really, but they can be beaten with good old competition. What can crush the nursing home industry is a better working model. Competition. We need a great nursing home, set up to cater to our elders with love and compassion, with the money going back into the institution and not into the pockets of the owners or their shareholders. We can't do it cheaper than it costs, it's expensive to care for the elderly, but we can do it so much better. And it's going to be this generation that does it because none of us can live with ourselves if we turn the other way when we know our parents are being abused, neglected and worse.
My dad had Alzeimer's for eleven years. It was challenging to keep him at home the whole time, but we did it with a LOT of family, help and luck. But due to really tough circumstances, he spent the last seven months of his life in a nursing home and I became a rabid advocate, just as you are becoming. I brought in the state, I brought in the ombudsman, I brought in everything but the cavalry and no matter how hard I fought I never was able to get my father's teeth brushed. He took no medication, was practically comatose, couldn't scratch an itch on his own face. He needed very little attention, and even that - just brushing his teeth - was too much for them to handle. I loathe nursing homes.
I also want to give you with four important words that helped me tremendously - don't ever give up.
Patty McNally Doherty
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