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. 

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.