We Need to Do Better

It’s definitely past time to take the plunge back into blogging. As with many of you, the past two years have thrown my life into a spin, and it seems that it might finally be time to get back to pre-pandemic life. While my blog is called “Grandma Runs”, and I still run, albeit not like I was a couple years ago, I find that I have much more to write about than just running and fitness. Today, I have something else on my mind. It’s a problem that desperately needs to be addressed, and one I don’t have any answers for.

Simply put, we do not properly care for the elderly in our country, and we make it difficult for family members to do so. For about four years, I helped my mother navigate healthcare. In 2017 she was diagnosed with Myelodysplastic syndrome (MDS), which is a cancer of the blood. A healthy person’s red count should be 12+; mom’s hovered around 6.4-8.0 while she received monthly injections. She was tired, but was still able to make the trips to her doctor and go out to eat. She had a goal to attend my daughter’s wedding, and she was not only there, but she was able to meet her great-granddaughter, who also happens to be her namesake, a year later. This summer we could see Mom getting weaker and sleeping more. By fall, she slept far more hours than she was awake, and the simplest tasks wore her out.

We knew we needed to begin to get her affairs in order. Our original plan was to move her and my step-father to an apartment near my siblings and me, so we began gathering all of the required paperwork. That’s when we learned just how difficult things are for the elderly. So much is done online, and like many seniors, our parents had no computer, nor any knowledge of how to use one. We had to set up their accounts online, which isn’t exactly legal, but there was no other way. Social security was a nightmare. While setting up an online account, which we had to do in order to get a letter of benefits, we were met with threats of jail and large fines if we were not the person for whom the account was intended. How else were we supposed to help our parents? We tried to schedule an in-person appointment, but because of covid, they weren’t scheduling any appointments. I finally decided to take my chances with Mom’s account and got it set up, but then we had to wait for a confirmation letter in order to get the required benefits letter.

We also needed to get the same information for my step-dad. Again, the threats of jail and heavy fines flashed on the screen. He was also in the beginning stages of dementia, and was throwing away some important mail, so we were concerned we’d never see his confirmation. We didn’t, so we had to call. I initiated the call with Wally next to me. He, like many senior citizens, doesn’t hear well and has no patience. We had to listen to four-minutes of “information” before we could even begin making selections so we could talk to a human. My parents could not have done this without help. They would not have waited through that four minutes because they wouldn’t have understood. So, they can’t set up an online account, and they can’t call and talk to a human. What were they supposed to do? We got through it, but it took weeks to get the paperwork. I understand that there is a lot of fraud, and that security is a huge issue, but there has to be a better way. Many of our elderly do not have children living nearby, and therefore have no one to help them.

We also learned during this time that our step-dad had not been paying his bills. My mom had asked me to help him get organized in the early fall, but at that time, he became angry when I tried to help. He told me it was none of my business. I bought him a planner and tried to create a schedule, but that was not enough. By November, I just took all of their paperwork, and began to organize. I found that he was way behind in payments, and had incurred debt that even my mother was unaware of. He continued to fight my help, and continued to get further behind. Our hope was that once we moved them closer, we could help more and get their finances in order.

Once we had our paperwork in place for an apartment, our plans had to change. Mom became very ill, and we learned her injections were no longer effective. By the end of November, her red count was 4.3. It was time for hospice. My husband and I moved her in with us, and she lived her final three weeks in our home, with my siblings and I spending as much time with her as possible. She died January 1, 2022.

As we mourned the loss of our mom, our step-father continued to decline in both his mental and physical health. We knew he needed nursing home care, but had no idea how to pay for it. This is where our government really fails our seniors. One has to either be rich or poor to be able to afford long-term care. Some manage to have long-term care insurance, but it’s quite costly. In order for Medicare to pay for nursing home care, a person has to be hospitalized three days, and then Medicare will pay 20 days. 20 days. And what about the rest of his life? My sister and I took turns going to check on our step-dad, making sure he ate and was managing daily functions. Again, we found unpaid bills, but he was adamant about our not touching them. We finally had to just take everything and take his checkbook when he was out of the room. His gas and electric had to be paid, no matter if he was angry or not. In hindsight, we probably should have insisted back in the fall, but being step-children makes things a bit more complicated, and our concern at that time was caring for our mother.

As terrible as this sounds, we had to wait for a reason to take Wally to the hospital so we could then get him into the nursing home. Two weeks ago, my husband and I went to check on him, and he had fallen. He could not get up, so we called an ambulance. We explained that our goal was to get him into long-term care, and the nurses and doctor knew that he needed a three-day stay. In the ER, they did a chest x-ray and CT scan of his head to make sure he hadn’t suffered any injuries when he fell. What did they find? Lung cancer and a brain tumor. Did I mention that the last few months had been stressful? Because he is 86 and has dementia – which we now realize was exacerbated by the tumor – we made the decision not to treat. The doctor believes it is too far advanced anyway. We spent the next couple of days working on getting him into the nursing home. We had 20 days paid for, but then what? We were worried no one would take him because of his inability to pay. He has no money; he has some equity in his home, and a very inexpensive car. We had to apply for Medicaid, which is another paperwork nightmare. Again, what do people do if they have no one to help? My sister and I spent hours and hours gathering everything they needed. We still don’t know what is going to happen. No Medicare supplement that I have researched covers long-term care. If he is approved for Medicaid, we will still be required to give them all of his income (social security and a small pension), minus $56 they let us have to cover his utilities. Have they looked at utility costs in the last 20 years? We also had to put the house up for sale, and if we sell his car, they will take that. People work their entire lives to have a home and maybe some savings, and then lose it when entering a long-term facility.

I have no answers for this problem. I feel like we should make sure our elderly citizens are cared for. I see all of the discussions about student loan forgiveness and all the money the US spends helping other countries, yet we aren’t helping those who worked their whole lives and contributed to society. We have to start the conversation.

If you have elderly parents, start planning early. Don’t assume they are okay. My mother had always been very independent, and she continued to take care of her finances until her final month when she asked me to pay her bills. We had no idea our step-father was unable to do the same. Ask questions. Make a list of their bills and help them organize. My step-dad had bills and statements everywhere. Either get your name on their accounts, or go ahead and get a POA so you can get information when the time comes. Don’t scramble at the last minute. Set up online accounts with them so that you can see their benefits, pay their bills, and get important documents. Do this before they are unable. Have those tough conversations about end-of-life decisions. Protect their assets. Had we had their home put in our names years ago, we would not have to worry about losing it. The nursing home can go back six years, so even if we had transferred ownership a couple years ago, they could still take it. We now know that planning should have started long ago, and I hope to make things easier on my own children. I also want to learn all I can so that I can help others who are in similar situations with their parents.

Let’s do better. Talk to your representatives and brainstorm ideas. Advocate for the elderly in your community. Plan for your parents.

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