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.