In my last rant on Life with a Parkinson’s Parent: Laundry Style, available here, I talked a little about interrupted sleep and the need to have respite care available. Allow me to double down on this idea.
As I write this, I have just spent the last two nights with very little sleep. Last night it was like my mother had a timer built into her. At twenty minutes past the hour it was time to call for me. Starting at 9:20 pm and ending at 7:20 am I was called down the stairs. Sometimes to take her to the bathroom. Sometimes to cover her up or take the covers off if she was too hot. At times she would be in a half dreaming state. She would talk about the man who raped a woman, and we needed to call the police.
My favorite was waking up suddenly at 3:20am hearing noise downstairs. I went down to find my mother in the bathroom and all the lights on downstairs. She was walking around without the aid of her walker, and she was walking quite normally. She tends to just shuffle her feet when she walks, which threatens to trip her constantly. After retrieving her walker I walked her back to bed and she moved with no stiffness at all. Despite the hourly wakeups it is still better than the night before. My sleep time was limited to five or ten minute increments that night.
Why Not Put Your Parkinson’s Parent In A Home?
If you are caring for a loved one with Parkinson’s, you likely get asked this routinely. I get that one all the time, and even more so now with people reading these posts. There is a multitude of answers which apply.
The first and most obvious answer for me is love. When you love your family member you don’t want them out of sight and out of mind. You want them close at hand. When this all began, I talked to my mother. I promised her I would keep her in her own home as long as I possibly could. It hasn’t been easy, but if it was everyone would be doing it. That said, I will again remind you that while in my opinion neither nursing homes or assisted living facilities are ideal they are essential for you. My mother and I visited assisted living facilities and nursing homes in the beginning.
Assisted Living or Nursing Home?
The assisted living facilities were very nice. They tend to come across as very nice mini communities. You walk in for a tour in the morning or mid afternoon. You will see residents going about their lives with a plethora of staff around. I witnessed a host of activities being organized and a very positive, supportive environment. The building was decorated and furnished to feel very homelike. They feature small apartments for the residents. The cost was certainly significant; however, it certainly seemed worth it. My mother became fixated on one such facility. She made it clear that was where she wanted to go. We had their staff do a preliminary evaluation where they would determine what level of care she would need. This very much affects the price. As days went by and I drove past that facility on a daily basis a trend began to emerge. The parking lot was always very full until around five in the afternoon. After five the parking lot was nearly empty. Nobody had mentioned the staff only worked until that time. After five there was only a single person working at the desk through the evening and night. This was curious with nearly fifty apartments full of seniors.
The nursing homes we looked at were very institutional feeling. I felt like I was walking through a facility run by the department of corrections instead of a care facility. There were no private rooms. Each room featured two hospital beds and a very worn-looking nightstand and dresser for each bed. Some had a small wardrobe either free standing or built locker style into the wall. There were lots of staff going about their day at all hours of the day and night. I watched the residents wandering aimlessly in the hallways, staring at televisions running old black and white movies. it felt like dumping ground. For me this had to be a last resort.
Show Me The Money
Another reason for being my mother’s care giver is financial. The least expensive assisted living in my area was over four thousand per month. This is just to live there and that didn’t include any care options. Adding little things like dispensing medications, helping with bathing, etc. could add thousands per month. Other facilities wanted around ten thousand per month. Keep in mind, Medicare only covers about twenty days per year in a living facility. The rest is private pay. The general idea is basically the facility drains your money below a threshold. Roughly two thousand dollars left in savings then you can apply for Medicaid. Note the word apply. You aren’t guaranteed to be accepted into that program. If you are then all your income goes to the facility and Medicaid covers the rest. They leave the individual around sixty dollars per month for themselves. Keep in mind the rules can vary in different states. Generally, your loved one is allowed to keep their house. They can have one car and up to two thousand in the bank.
MERP Impacts Families of Parkinson’s Patients
You might think well it may not be much in cash but some assets will be inherited. Think again. I learned that Uncle Sam treats Medicaid more like a loan. Sure, it will keep them in the facility until they die. After that, Uncle Sam expects to be repaid. To that end we have the Medicaid Estate Recovery Program or MERP. According to MACPAC or Medicaid and CHIP Payment and Access Commission, more than $700 million per year is reclaimed. For more details see the report here. That house, car, prized family heirlooms can all be taken and sold. Life insurance proceeds paid directly to a recipient is usually exempt. Irrevocable funeral trusts are also usually exempt. In both cases the rules vary from state to state.
I’ve had people tell me they would just start siphoning money out of their loved ones’ accounts. They would hide it accounts for the kids and grandkids etc. That might work if you start early enough. The mandatory five year look back that Medicaid uses to determine eligibility is meant to find that. I’ve had others say they made sure their parent’s home was jointly owned in the name of an adult child. That may not help. Some states allow that property to be taken if the deceased had any claim to it. I hope your deceased parent didn’t cosign your mortgage on your house.
If You Will Indulge Me
Normally I try to keep my rants separated into categories. I like to keep clear distinctions between the material. In this case I am going to make an exception and cross over a bit into a current event rant.
Do you follow the news at all? If so my sympathy to you. You may have heard about President Trumps Big Beautiful Bill. Depending on the media outlet you tend to follow this may be reported a couple ways. It could be touted as a great bill. A means to push those murdering, rapist, illegal immigrants off the public welfare system. Conversely, you may see it reported as a monstrous bill. A way to put even more money in the pockets of billionaires. All while kicking hard working American’s off their health insurance which will result in the deaths of many people. The Republican party line has been we are only going after those who are illegals and scammers. People pointing out innocent Americans will likely die as a result of these cuts get interesting responses. Iowa Senator Joni Ernst made the Republican position clear when she said “Well, we are all going to die”. For more context on her statement, you can read about it from the Associated Press here.
You can agree with Senator Ernst. You can think she should go f*** herself, I’m in the later admittedly. This bill is significant to the Parkinson’s Parent caregiver. The significant cuts this bill enacts will make it harder to get Medicaid benefits for your Parkinson’s Parent. For those who have a loved one already in care they may lose that support. You may find yourself acting as a caregiver yourself.
I Have A Parkinson’s Parent What Should I Do?
My recommendations are to be proactive. Start looking for an attorney who specializes in elder law as soon as possible. If you are like me you may find those options nearby are limited and have to look further away. The sooner you take steps the sooner you have peace of mind.
I would also encourage you to contact your state’s representatives in both the house and senate. If you don’t know who they are, congratulations you are likely an American citizen. You can look up your representatives here. Reach out to your legislators and make it clear to them that you support Medicaid funding. It couldn’t hurt to mention that Medicare should also be expanded to include long-term nursing care. If you stay silent you lose the right to complain later.
Do your research about the types of care available in your area. Conduct in person visits to see what they are really like. Don’t just rely on the Google reviews page. Services like A Place For Mom can be helpful. In my experience it is roughly helpful in the same way a Google search would. There is nothing wrong with using them. Just keep in mind they have listings without a lot of contexts so check the places out for yourself.
Think outside the box. Do you have a college nearby with a nursing program? You might find a student in that program who can help provide in home care. This gives them experience and money and might save you as they will likely be less expensive than other services.