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.
We spent a little more than a month raging against the machine until we were finally heard and they took her off the bad medicine that the FDA says not to give elderly people with dementia. And they put her back on the treatment she had before she went to the hospital.
First Good Day April 16
Last night was the first good night where she got a few hours of sleep. She’s an insomniac and hasn’t slept during this entire debacle. And this morning was the first truly good morning. She was in pain and felt some anxiety but she got control of it fast and worked with me. The confusion has decreased so much and her symptoms are being managed better.
She’s having her first good day where she can manage her anxiety with the rightmedicine that has worked for decades. And she’s using her behavior techniques that always work for her and should always be accompanied with medicine.
Trial and Error
That’s what the nurses say when we don’t want to use dangerous drugs. “It’s trail and error…blah blah blah.” They’ve been attempting their trial and error drug experiments for a long time but my mom protects her by accompanying her to her doctor appointments.
One doctor told my mom she was being “Nit-picky” when she gave reasons for not accepting these drugs.
What if she falls?
What if she responds badly to them because she always has when tried in the past?
What about the Black Box Label that says not to give to elderly dementia patients?
I don’t know why they wanted her to be treated for dementia sooooo badly and prescribe such dangerous treatment. Are they trying to increase mortality rates? Or are they that stupid and dependent on using drugs?
One Hospice worker said we should just mix the medicine into her food because my grandma was rejecting the bad drugs that didn’t work and made her feel bad.
Are you freaking kidding me?
She trusts us and we have to show her respect. There’s no way we were going to do that. My grandmother does show signs of very early dementia but most of her behavior is based on her Panic disorder, which just get’s ignored by these people.
And she’s so aware that even while being drugged by them, she knew which pill was her pain medicine.
She Needs a Nurse Aid
I don’t want her going back to a facility where they mistreat human beings.
A better choice would be to pay for more at-home care so that she can have a trained professional change her diaper and keep her clean. They can be here to help her with medical needs 24/7 and we can be here as her family to protect her. We can also have an easier time leaving and running errands and taking care of our daily demands. And she can stay in her home where’s she been for 30 years.
But she needs a Nurse Aid who is trained to deal with her incontinence care and physical handicap. It’s also less expensive than a facility.
So, I am going to continue her GoFundMe to pay for that in specific. That’s all we need. We don’t know exactly how long we’ll need it. Could be up to 6 months. Even if we only have 12 hour care during the night, that does add up and is going to be too expensive for my grandma or us to afford.
You might be wondering why we can’t just pay for it. Over the past two decades we’ve been hit hard by the economy. Our family home needs repairs we can’t afford. We have two classic cars and a truck that we can’t afford to repair. And a variety of other things that just keep building up. And my identity was stolen and that hurt me pretty bad. We pay the bills and we buy the groceries but we can’t afford the medical care for my grandma. And we’re not going into debt to pay for it.
I want to thank everyone who has been praying. We’ve had neighbor’s stop by and other people telling us how they’re praying. I know that God and all the prayers are what’s getting us through this.
One of the hardest things about this situation is that she just isn’t my grandma anymore. With the dementia symptoms increasing and the different drugs they’ve put her on, she has gotten worse and become different.
They stopped the treatment she had before all this started, so those symptoms are just not being dealt with.
The doctors and nurses are convinced that her dementia is so bad and all they can offer are drugs. Every time we call about symptom management their response is, “Have you given her the drugs?”
She reacts so badly to some of them that we have angered everyone by fighting against using them. But our persistence finally got through, and they were able to prescribe something that she responds ok to. At least for a short time. Drugs never last long once tolerance builds up.
And I’m scared that the usage of drugs has just compounded problems. She has more lucid moments than they want to believe. They think we don’t know what we’re talking about. But we know her.
But, that’s all they can offer.
We’re looking into discontinuing them and trying to go back to her previous treatment. We haven’t even been allowed to speak to her doctor about finding the appropriate treatment. What if they’re wrong? It could be dementia…or drugs…or a third factor…or the treatment she needs that they refuse to give her…or maybe a combo platter…
Nursing Home Neglect and Abuse
And aside from that, her handicap just makes me cry. I saw her emaciated body today when the aid was cleaning her. This was the first time I saw her whole body and she looks like a starving Ethiopian, minus the bloated belly. She’s so bony. And she has no muscle tone in her legs or arms. She’s not starving though. It’s just the result of being left in a bed for too long. That’s what happens when the elderly don’t receive the proper care they need.
We were speaking to my grandma’s neighbor yesterday and found out that his wife’s mother was abused at the exact same nursing home my grandma was at. So, it’s not just us who had a bad experience with them.
I wish there was something that could be done before they harm more people.
Getting Better in Hospice
I’ve been told that people can improve in Hospice. I got confused one night because she actually stood for 3 seconds. And I got scared and wondered if we weren’t listening to God.
Can she get better?
Should we be trying to exercise her?
I figured there was no hope since she was in a Rehabilitation center for weeks where they weren’t able to exercise her. And that’s where she was when Hospice accepted her.
So, I wasn’t expecting it. There was one night when she tried for a whole hour to stand. She thought she was just too afraid so she persisted. And for the whole hour she didn’t give up. Until she finally got so tired she was forced to quit trying. I had prayed over her earlier that day because I kept feeling confused about the situation. And I guess she heard my prayer and tried to stand up in faith.
But no. After I saw her body today, I am convinced that she will never walk again. She’s too old and too tired. Nine years ago she had to go through some rehab physical therapy. With the physical therapist and her daughter on her daily, she recovered and regained her strength in about three months. It was almost impossible for her then, but she did it.
Now, there’s just no way she can do it.
Waiting for God’s Timing
I don’t know how much longer God is going to make her wait before He let’s her rest in peace. He’s taken so much from her. Her ability to walk. Her mind. Her protection from drugs. Her enjoyment of truly living. Most of her family.
She still has life in her. I’ve always said that she’s got a lot of Qi…more than people in their 30’s. And she’s still got that Qi, because I don’t think it’s actually her time to go. But everything has been taken from her. All that’s left at this point is the breath of life.
And she’s ready to go rest with Jesus and her husband. It breaks my heart every time she cries out to God, asking why he won’t just take her. If you’re reading this, I ask that you keep my grandmother in your prayers. Whatever God’s will is for her. I don’t even know if God wants her in a facility, but just in case, here’s her GoFundMe.
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.