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.
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…. : )