Thank God hospice kicked us out. At least the doctor said she’d still provide pain medicine. Apparently, my grandma was accepted into hospice because of dementia. Last I checked, hospice accepts you when you have 6 months or less to live. Dementia is not necessarily terminal in under 6 months. It’s called the LONG GOODBYE. You can live with it for a long time.
And when they refer to her handicap . . . they use air quotes . . . They say, “What ‘handicap’?”
No, it’s not “handicap.” It exists. She was born with it. Had it for 83 years. Walks with a limp and uses canes. And for an 83 year old, if it is left untreated as it was when she was in the medical “CARE” it becomes terminal.
It breaks down her digestive system. It causes her such intense pain. And all we asked was that they reduce her suffering caused by her handicap. Not to let us run out of medicine. Which they did over and over again. It didn’t matter how much we called or asked.
The aid who changed her diaper saw the pain. She was heartbroken. The weekend aid who isn’t apart of hospice noticed. She was crying. She couldn’t let it go. So, I don’t understand hospice.
Feb. 18 this woman who was walking and aware, only went to the hospital to evacuate freezing temperatures. And she was given a death sentence by this corrupt organization. They had their records wrong from the very beginning. She never fell. They thought her “handicap” was because she had fallen. And dementia became the ONLY thing they could see. They ignored the one and only reason she is now bed ridden. The reason we called hospice.
She barely even has dementia. She has all her long term memories. She wasn’t leaving her keys in the fridge. Or forgetting how to dress. Or anything like that. She couldn’t keep track of the days so well. She actually kept track better than she gave herself credit for.
Her panic disorder in addition to being in her 80’s would cause her to forget short term things. But how is that dementia? It looks more like mental decline due to aging and stress and confusion caused by her panic disorder. It’s not that hard to understand. Well, it is pretty complicated. She probably does have dementia.
But that shouldn’t mean her lifelong handicap just vanishes.
I struggle to stay quiet during injustice. Especially, when my family member is being harmed. And after being yelled at so many times by hospice nurses, I finally started yelling back and calling them out on their injustices. And I promised my mom when they showed up today, I’d stay quiet and work on my drawing. And I did. Until she came and asked my opinion. And then I went off on them. It’s injustice. It’s inhumane.
But, I did at least lay down another layer of Inktense on this mushroom piece.
First off, I’d like to thank my first donator. I hope you don’t mind me using your name, but Crystal Fuller got the ball rolling. Thank you so much for your kindness. I can’t tell you how blessed I feel by your generosity.
I also want to thank the people who have sent me messages through Go Fund Me. I appreciate your concern and prayers. And I’d like to alleviate any misunderstandings of why we can’t take advantage of the free Hospice facilities. We are using the Hospice of East Texas out of Tyler. She has been accepted into Hospice At-Home Care with them. It’s not very convenient because it takes over an hour for the employees to get to her home but we were told they’re the best.
A Little Background Info
In 1988 before my grandpa died from asbestos poisoning, he made sure that his wife would be taken care of for the rest of her life. It’s not much, especially since he died in the 20th century when the cost of living was so much less expensive than it is today. But it was enough to pay her bills until she dies, which are low. There’s also enough to cover some medical needs and her burial.
He didn’t prepare for this though. He never would have imagined that her Medicare insurance for the elderly wouldn’t be enough to take care of her elderly medical needs. We all know how complicated insurance is these days. And we all know how little it actually covers.
Why Do We Need Donations?
I want you to understand what you’re donating for. My grandma does not qualify for Medicaid. She’s not rich. But the preparations her husband made to take care of her after he died, stop her from being able to qualify.
We’ve had three social workers exhaust their options.
My mom has researched her butt off and ran into the same obstacles as the social workers.
We even spoke to a lawyer who also told us there’s nothing we can do to qualify.
She’s stuck in a Catch 22. Not poor enough to qualify for Medicaid, and not rich enough to pay for the facility. Without Medicaid, we just cannot afford the cost of a facility. In some locations the prices are a little lower and we wouldn’t be able to afford those lower prices either. In our area, we are looking at about $60,000 a year or more. I’m not sure how long she needs, but I’m guessing under 6 months.
What does Hospice Provide for Us?
A nurse visits once a week.
An aid visits only during the week once a day to clean her including the cleaning supplies.
They provide medicine.
We also get 5 days of respite care each month. My grandma gets transported to a nursing home, so that the family can get 5 days of rest. That’s what her insurance covers.
Paying out of Pocket
Since Hospice doesn’t send an aid out on weekends, we have to pay for that out of pocket. Just to give you an idea. We can only afford one hour for each day. At first, we were going to get 4 hours but we just can’t afford it. Maybe once or twice. But if we do that every single weekend we’re going to run out of money fast. So, we do the bare minimum.
If we pay for someone to give her pain and dementia medicine, we can’t even afford one time. Because she get’s it daily more than once and it’s over $100 for each time. So, that’s just not an option. It’s so important for her to be administered these drugs in a facility. We work hard to do it right, but we are not a substitute for trained professionals.
She also does not allow us to clean her up. She has incontinence and that is getting worse because it’s directly damaged by her handicap. Her handicap is located in her pelvis and legs and now her spine because the scoliosis is starting to spread.
Family as Caregivers
Her family is just me and my mom. The picture below was a gift my grandpa gave to his wife and daughter – a trip to Hawaii because she always wanted to go there. And they met Don Ho and had dinner together.
My grandma’s family is all gone . . . all of her siblings have died, except for one. But he’s elderly, out of town, and not available to help. She lost her younger sister who stayed in touch with her all the time through phone calls, mail, and she came to visit regularly.
She died the same year my grandma’s son died which was almost two years ago. Everyone knows how hard it can be for a parent when their child dies before them. And his children are dealing with his death and other health problems that just make it impossible for them to add more to their burden.
So basically our lives have stopped. We are doing nothing but caring for my grandma 24/7. I’ve abandoned my home. My work. My dad. My boyfriend. My friends. My godchildren. My own health and well – being.
My poor dog Sunny has been uprooted from her happy and stress free life in the country to being in town with loud town noises. She feels our stress and while she makes a wonderful therapy dog for us and for my grandma, it’s just taken a toll on her. And her breed is prone to getting a hole in the heart when they get older. The vet told us 3 years ago, because it showed up. I do my best to pray over her daily and always make sure she gets her walks and eats healthy.
I want her to live a long healthy life. But we are struggling to give her that extra love and care right now.
What Can You Do?
Share the link with everyone you can think of.
Donate what you can. $1, $5, $20. Whatever you can afford and feel comfortable with. Every little bit counts and adds up.
Pray. If you can’t donate, I understand. But we always appreciate prayer.
I hope that helps everyone know why we can’t afford the Hospice care in a facility. Thank you for reading, sharing, donating, and praying. Sometimes we have to help each other out in this world where so many people are struggling.
I’m sad to say that I haven’t been able to do any artwork. No drawing. No photography. No nothing. The only thing I am doing is caring for my grandmother 24/7.
I’m happy to help my family but this isn’t just helping. I’ve actually been helping my grandma for years now. I live in the country where high speed Internet isn’t available. So, I use the Internet at her house and I help her with things like cleaning, grocery shopping, and other stuff like that. We also help her with her bills and everything important. With our help she has been able to live independently.
Who is my grandma?
She’s a warrior. Her name is Mary and she’s 83. She’s a widow and all of her siblings and even her son has died.
She hasn’t had the easiest life but she loves God and she overcomes everything that she faces. She was born with a handicap called Hip Dysplasia and Shorter Leg Syndrome. The treatment for this handicap is daily exercise and physical therapy. And as I said, she’s been living independently. She is very active and makes sure that she uses her muscles everyday.
Long Story Short
Well, as short as I can make it. During the Texas Winter Storm in February my grandma’s power went out. She had two choices:
She could freeze to death as the temperatures dropped to 1 degree and lower
She could evacuate to the hospital
She thought she’d be safe at the hospital so she chose that. We even contacted her Doctor many times before we were able to reach her and she said she was in the safest place she could be.
That was not true
From day one we could not get a hold of the hospital. We called but no answer. When we finally got through, we were scolded for not being there. Even though Covid Restrictions would not allow it. Otherwise, her family would have been there to protect her. We asked for information about her, like is she walking. We informed them of her handicap which they completely ignored.
They had it recorded that she fell and was left alone. She never fell and she was not alone.
The miscommunication and unprofessionalism went on and on and on. We got her into a nursing home and then a rehabilitation center. Unfortunately, just one day of her not walking was too much. Her body was already deteriorating. They even yelled at us when we inquired about her walking. They said, “She was like that when she got here!” They lost all her clothes and her purse.
They even called on a Friday evening at 5pm to tell us she’s being released to our care the next morning. We managed to get them to extend it to Monday. Her plumbing still needed to be repaired from the storm damage.
It was a nightmare.
In Less than One Month
When she left our care she was walking, aware, and living independently. And in less than a month in the medical community’s care she can no longer walk. She needs 24/7 care. And she was accepted into Hospice. She has a ton of life in her but unfortunately she was given a death sentence because that’s the unfortunate truth of leaving her handicap untreated.
Go Fund Me
We like to work hard and take care of ourselves without begging for help. But my grandma doesn’t qualify for Medicaid. We were not prepared for something like this because we still had time to get prepared since she was in such good health. Her Doctor spent all of 2020 telling us she’s too healthy, which is why we couldn’t get physical therapy for her or even a prescription for a new walker.
She’s no longer too healthy.
I hate to beg. But we have gotten desperate enough to go ahead and create a Go Fund Me page. The prices for Hospice care are astronomical. If she can afford to go to a facility she will be cared for better than we can do for her. Even if we can hire in-home care for her, that is extremely expensive and will eat her money up in less than a month. Getting care for her is just not an option.
So, I am writing this blog post to reach out to anyone who has it on their heart to donate money so that we can afford to get her the care she needs and deserves. We are innocent victims. She doesn’t even understand why she can’t walk. She’s been diagnosed with dementia as well and it has increased in severity during all of this. She still tries to stand which only does more damage to her skeleton and increases her pain.
That’s another thing. Her pain is excruciating but nobody will acknowledge her handicap, so she has to be an even stronger warrior than she’s ever had to be and white knuckle it.
Thank you so much for taking the time to read my story and please do whatever God puts on your heart. I don’t want to be greedy but my goal is to get her enough donations to afford a Hospice Facility. She probably needs a few months at the most. I’m not quite sure, but anything we can do to help her will be appreciated.
My poor grandma would be embarrassed to know I am doing this. And the picture of her on the go fund me page is when she was screaming in pain while having her diaper changed. I’m so sorry to share something so bad.