Hospice Makes You Suffer

The entire time we’ve been dealing with Hospice, they have been very insistent on using drugs on my grandmother that she responds badly to. They make her suffer and they don’t actually address the symptoms that she does have.

The Suffering She Experiences on Those Drugs

  • Increased Anxiety
  • Increased Confusion
  • Increased Aggression
  • Obsessiveness
  • Heaviness

That’s only a few but it’s more than enough. She always responds this way and these bad reactions are always ignored and dismissed. My grandma hates the drugs and demands to get rid of them. She even throws them. She refuses them because they make her feel worse.

Incompetency and Negligence

That’s what you get with Hospice. Every time, with zero exceptions, the nurse’s records have been wrong. There was a computer error apparently….every single time. Regardless of the multiple excuses they’ve used, they’re just not able to get my grandmother’s information right. They always have the wrong drugs listed and the drugs she does need are not listed.

Which is very unprofessional and dangerous.

Am I confused? Isn’t it kind of important to be careful when using drugs and dealing with a human being?

Needless to say, I got so upset. I can’t take the incompetency anymore. I feel like I’m in war and I’m getting battle fatigue. We tried to clarify the records with the nurse and she got so upset with our conversation she was ready to run away. She asked me, “Will you let me go fix this?”

I responded, “Let you? I expect you to. This is your job. You’re getting paid. Yes, please get the records right. And please manage her symptoms so that we can reduce her suffering.”

She looked at me dumbfounded.

Symptoms We Need Managed

  • Excruciating pain caused by her handicap that increases daily.
  • No sleep. She doesn’t sleep. So, some kind of sleeping aid.

When she told us the doctor she was going to speak to my heart sank. Because this doctor LOVES anti-psychotics. She’s having multiple affairs with these drugs. It’s her go-to drug for every single ailment. I predicted that she would prescribe an anti-psychotic. And what did she do?

She prescribed an anti-psychotic!! FOR SLEEP! I’m not an expert on drugs but I’ve heard Insomnia by The Dirty Heads and there’s tons of options that aren’t anti-psychotics!

What Else Did the Good Doctor Do?

She reduced her pain medicine from every 4 hours to twice a day. And said to supplement with morphine.

So, for the past 3 days her pain as increased to the point where she can’t move.

  • She cries.
  • She whimpers.
  • She can’t sit up.
  • She can’t even speak.

I can’t help but feel we’re being punished. Or I just sound paranoid.

We called today to report it and the nurse told us to wait about an hour for the morphine to kick in.

Uuuhhhhhh….don’t you know how morphine works?!? A tolerance builds up and it becomes less effective over time and something needs to be changed.

They refuse though.

I don’t know what to do. I really thought that Hospice was supposed to help reduce suffering in a person’s dying days. I was wrong. We have told them she’s suffering so they reduced her pain meds. I just don’t get it.

This poor woman is being neglected by the same corrupt medical system who neglected her and made her bed ridden in the first place. I guess 83 year olds have rationed care no matter what, even in death.

It’s Just So Heartbreaking

And it’s infuriating. Our world is corrupt. I know it. You know it. The leader’s know it. Everyone knows it. I still haven’t gotten anymore donations on her Go Fund Me page. And I understand. You really have no reason to donate. You don’t know me or my grandma. I’m sure you have your own problems. You probably have your own family members who are dealing with some kind of corruption or mistreatment in our society.

And maybe donations just aren’t the way God wants to provide for us.

I think if she could be in a facility, they could go ahead and use their dangerous and inhumane treatment and get it done a lot faster. I personally can not knowingly put my grandma through that kind of treatment. But they can. And they are trained to do it.

Ultimately, I just need her pain and suffering to stop. I pray that God let’s her rest in peace and welcomes her with open arms. And I’m going to continue trying with the Go Fund Me.

The Power of Giving

Altruism is very powerful. It changes the world. And humans naturally feel good when they’ve done a good deed. I’m not Mrs. Popularity and I don’t have social media. I don’t know anyone. So, I am depending on the kindness of strangers to donate a small amount.

I am also depending on other Christians. We’re all apart of the body of Christ and it’s our duty to help each other in times of need.

I do.

I donate money and my time whenever I can. So, there’s gotta be some karma coming back to me. Thousands of small amounts can add up to the amount we need to get her the treatment she needs in her dying days.

Thanks for reading.

Please Share Donate & Pray

And if you don’t wanna donate to this cause then please find somewhere else that you can spread a little humanity to. Stand up to the corruption, the injustice, and just plain wrong treatment of human beings. I know we’re not the only one’s going through this in our sinking ship of a society.

She is my Grandma Again

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 right medicine 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.

Nit-Picky Concerns:

  • 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. 

Brutal Honesty

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.

Muchos Gracias

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. 

Not My Grandma Anymore

A Crazy and Wild Roller Coaster

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.

The Point of my Current Blog Focus

Living in a Surreality

Dorothea Tanning, Eine Kleine Nachtmusik, 1943 – I chose this surreal painting because it’s about confrontation.

Since the Winter Storm on Feb. 15, my life has been completely taken over by crisis after crisis. We lost power and running water for over a month. I didn’t complain. I was just happy that we had somewhere safe and close to go.

Then Feb. 18, my grandma had to evacuate when she lost her power. When our power finally came on, we saw that we had extensive pipe damage. And we couldn’t even get an appointment for 3 weeks.

Same thing at my grandma’s. The nursing home was determined to get rid of her, even though her insurance covered 90 days, which she did not get. We tried to appeal it since she still didn’t have water and we had to wait for the plumbers to be available.

We lost the appeal

The day she was going to be returned to us, the social worker at the rehab center yelled at us for not getting the plumbing done. She ended up calling the company and that morning we got it fixed.

Now, my life has completely stopped to take care of my grandma. When she came home she was so bad off that I thought she’d be dead in a week. We said our goodbyes and we helped her come to terms with what was happening. By the time our 5 day respite care arrived, we figured she’d die in their care. Especially, since they were very insistent on using black box labeled drugs.

But she’s still not dead. It’s just dragging on. And we can’t help but give life. We have life giving energy. So, she’s just trapped in a mind and a body that don’t work. And I can’t keep putting my life on hold. But I’m exhausted and I can’t find the concentration to work on art or anything productive like that.

Caregiving

I’m not actually a caregiver. I’m her granddaughter. But I have been forced into a situation where I am an untrained and unpaid Hospice worker. And it’s important for caregivers to take care of themselves. At first, I didn’t. I neglected myself, especially since she required so much care at first. Things have settled down a bit and she’s aware that we need to live our lives too. And she tries to let us.

That’s why I’m focusing on the GoFundMe Fundraiser. And I thought that maybe I could use my blog to help with that and possibly provide something productive. So, that’s what I’m gonna try to do.