Where to Start?

My twin sister and I (we will be referred to as H and M throughout this blog) should have started this far sooner than now. There is a huge chunk of this real life story that isn’t documented. We will try to catch you up so please bear with us through this unusually long post. Our grandma, Nee Nee, is in the late stages of Parkinson’s disease. She was diagnosed when she was 30 (long before we were born) and is now in her mid-70’s. We have watched as she has slowly lost each part of her former life to this disease. All she has left are pictures, memories, and two pieces of furniture. And honestly, since we are being honest, those pieces of furniture are too big for her room. One room. That is all the space she has, and it isn’t even really hers either. She has been forced to live in an assisted living facility because we, her family, cannot provide the 24-hour care that she requires in order to keep her at home. But we are skipping too far ahead already; we are trying to catch you up after all.

Nee Nee is divorced, and their kids (our father and aunt) were fortunately already in their late teens when it happened, so she didn’t have to be a single mother. She persevered as a strong independent woman and made a great life for herself. She had a wonderful job that she loved thanks to her lofty Master’s degree, a beautiful house, and an exciting social life that included bar-hopping with friends. We have even heard stories of fights in bar parking lots! I don’t know how old she was when she took us in, but she opened her home to us without question; and so begins the story of our life together.

Our parents split up when we were five years old, and our dad moved to live with Nee Nee. Eventually we moved out of her house, and into a home with an awful drug-addicted woman who, along with her kids, abused us. Nee Nee took us back into her home to raise us, where we experienced an idyllic childhood and were raised impeccably. She was a teacher by profession, and made sure that our tiny minds were always being enriched. She taught us to be good people, to love the world, and to always do the right thing. Our parents and our aunt and uncle helped to raise us, and we don’t want to diminish their efforts, but this is not their story so we will focus on Nee Nee’s part in our lives.

When we were teenagers, we moved back and forth from her house to the houses of our parents. Thankfully our dad’s evil girlfriend was long out of the picture at this point. We gave Nee Nee hell and we treated her in ways that she never deserved. At the time, we didn’t realize what we were doing, but she has forgiven us and we have learned from our mistakes. Her disease was prominently visible at this point, and we started to have to help her drive and do more around the house. Her disease was progressing as Parkinson’s will do, but it was still manageable with medication and she was still able to live her life normally. There was one thing about the medication that was hard to handle though; the side effects. The pills made her hallucinate and have a shopping addiction. And so began her descent into the darker recesses of Parkinson’s disease.

These are the symptoms that you read about, but can never fully understand with the minimal information that you can research on the internet. She hallucinated that the room was filled with spiders, but you never knew it, because she hid it so well. When she was driving under a bridge or overpass, it would appear to her that she was going to smash right into it, but she never told us that until she had stopped driving. She was paranoid that someone was hiding in various bushes along our street who was going to break in to our house and kill us. We knew about that, because it manifested as anxieties that she verbalized often. Perhaps that is where we developed our generalized anxiety disorder, although it is probably also genetic, and our aunt tells us Nee Nee always had mild issues with anxiety. And her shopping addiction, while ensuring that we never went without, also ensured that she would lose her house when we were in our early 20’s.

She could no longer afford the house, had taken out a second mortgage on it, had already filed bankruptcy once before, and was again in credit card debt. It was time to downsize. Her disease was beginning to greatly affect her daily life anyway, and she needed to be able to reach everything more easily and have less to be responsible for. We kept as much of her things as possible, divvying items out among her kids and ourselves. We tried to make sure she could keep as many of her things as possible in the apartment as well. That got more difficult as her disease progressed, and she had to move to a handicap accessible apartment in the complex, which was smaller. Bye-bye more stuff (she had way too much stuff due to that shopping addiction anyway).

The disease continued to progress and she was losing her ability to take care of herself. But there was hope in the assistance that we received in the community. She was going to a local non-profit adult daycare (we refer to it as going to “work”) a few times a week where she received some physical therapy. They sent someone to her apartment to help her bathe and tidy things up a bit a few times a week. We, along with our aunt, ran all of her errands for her and things seemed bearable for a while. The doctor had adjusted her medications several times over the years to help diminish the nasty side effects and the combination of medication at the time was helping her symptoms as best as possible.

Then her disease attacked with great vengeance. Nee Nee was stuck in a power-chair and couldn’t do much on her own anymore. She couldn’t even get out of bed to use the bathroom at night. She needed help everyday, more than what the adult daycare could provide, and poor M took on most of the duties.  M worked from home as an independent contractor for a website, and unfortunately, was the only one who could jump every time Nee Nee called with some want or need. Things got so bad that M spent almost 48 hours awake helping Nee Nee one weekend, who was then doctor ordered in to respite care. She couldn’t stand, she couldn’t walk, she couldn’t talk, and her body was completely exhausted. The doctor, realizing what we had already come to know, had finally decided that it was a safety hazard for her to live alone.

We wanted to make sure she was safe in her apartment, but we all worked full-time and had homes and families and what-nots that we had to devote most of our time to (priorities, right?! Ugh.) so we could not be her caretakers. We also couldn’t afford 24-hour care for her. Have you SEEN the costs of that? It is a travesty! The doctor decided it would be mandatory for her to live in an assisted living facility. Again, that would cost money, but fortunately she was already setup with the adult daycare system and Medicare, so they were able to take care of arrangements to find a place for her to live. It was a miracle that they found her a place in the home that they did.

Most Medicare funded facilities are understaffed with too many residents. The residents are not treated as nicely as they should be, personal relationships are not developed between staff and residents, and many of the “caretakers” are thieves. We know this because Nee Nee experienced theft while in respite care in one of these facilities for just one week! Sometimes there is even gross neglect and abuse.

We got so lucky that she was able to move into a small facility with just 8-10 residents and many employees working during the day. It is like a real home with a real family, which Nee Nee needs. We just refer to the facility as home. She is a social creature, who can no longer go out with her friends, and whose family doesn’t visit often enough, so the relationships with her caretakers are key to her mental health. But even this miracle isn’t enough to ensure that Nee Nee’s quality of life is optimal. Parkinson’s disease patients require much more in their care plans than would be expected for the “average old person”. Late stage Parkinson’s disease patients should really be living in a nursing home, or most ideally, a Residential Care Home. But we cannot afford it.

While we love where our grandma is at, and are dreading the day when she must be moved elsewhere, there are many issues that affect her daily life that need to be rectified. M and I are at a loss about how to fix these things. At night, there is only ever one lady working, and none of them should be forced to physically lift Nee Nee the way they have to transfer her from chair to bed, to the bathroom, etc. This is effort more suited for caretakers working in a nursing home. We have complained on behalf of the poor ladies who work the night shift, to no avail.

Parkinson’s medication and the disease require a healthy diet with modifications at times. For example, she is often unable to eat on her own, and requires someone to feed her. Certain foods are too hard for her to chew and swallow. There are also some medications that cannot be taken with a high protein meal. The menu at home can be compared to what I call bachelor-pad food. One day dinner was frozen fish sticks, sliced tomatoes, and toast. Ew! Not only is that inappropriate for wise elderly people like Nee Nee, who was like a gourmet chef for us growing up, but it is lacking essential nutrients that any person needs. We complained about this, and while the caretakers have taken some great steps towards making better meals, they are still not the  nutrient dense meals that Nee Nee really needs.

Rejoice now, as we are nearing the end of this introductory post for our new blog. If you have made it this far, we commend and thank you! Nee Nee has now reached what we believe to be the last stages in her disease. While it took 40 years for the disease to slowly progress to late-stage, it has now taken only a few months for it to progress to its worst. She broke her toe and almost her foot in a power-chair accident, and is now confined to a normal wheelchair, which she is not strong enough to move around in on her own. She has lost the ability to hold herself up, and is hunched over in the fetal position in her wheelchair most of the time. If not in her chair, she is bedridden. She can barely write, can no longer paint or craft the beautiful things she was once famous for, and has no social life.

She cannot use the restroom or bathe by herself. Once, when in the hospital for a stroke scare, she had to be lifted, naked, by a wonderful nurse, but a complete stranger to her, onto a portable toilet. She has no privacy left. The last shred of her dignity that she has been able to hold on to, her highly intelligent mind, seems to be going away slowly now, and we aren’t even sure if she really knows it. She is struggling to remember what day it is, that she has already told us something an hour ago, or what she ate for lunch the day before. We took her to Walmart a couple of weeks ago (a tiring three-hour ordeal) and when she got in my truck, she had forgotten that she had even been in that truck several times before; she thought we bought a new one.

The main point of this grossly long post is that Parkinson’s disease is awful. In late-stage, a person can no longer function. They have nothing left. And you will hardly ever read about these truths on the internet. I have searched endlessly for tips about fun activities for Parkinson’s patients, and all I can find are child’s activities for Alzheimer’s patients. That is degrading for her. People don’t understand that she is only physically disabled, not mentally, and speak to her as if she is a baby. If you search for anything about late-stage Parkinson’s you will be hard pressed to find any information about the raw facts of life. Most brochures and pamphlets show happily smiling people dancing, laughing, etc , making it appear as though Parkinson’s disease is hard but not unbearable. It IS unbearable. While there are good times in Nee Nee’s life, this blog is here to shed light on the truths about Parkinson’s disease, and to help support anyone who is looking for information, companionship, and assistance about living life with this debilitating disease.


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