Mom Is Improving Dramatically

[achilles]

Well folks, it's been a rough month and a half. My mother's health has been poor, and she had to be hospitalized for acute liver failure. After some tests, and a few days in the hospital, she was released to a skilled nursing home with a treatment plan for fatty liver disease.

I don't know how much everyone knows about hepatic encephalopathy. (hepatic=liver-related, encephalo=brain, pathy=disease). When a person's liver fails, excess toxins (especially ammonia) build up in the system and begin to negatively affect the brain, resulting in loss of motor control, slurred speech, memory loss, lethargy and eventually coma. My mom has had her ups and downs over the past month, and she came home on Saturday after having made some real progress.

Well, this morning she had another episode of H.E. The dementia and loss of motor control is frightening. Will we lose her? Can I handle being a long-term caregiver while losing her mind, who she really is? I don't know.

I imagine many of you have had experiences with similar things. I don't know why I am writing this, but I hope maybe I can get some advice or encouragement.

[Newme]

Hi achilles,
Sorry about your mom. I imagine it's tough to see your own mom go through something like that. I don't have the same experience, but I'll tell you that music can be powerful. Once, my sister & I went to play piano for an elderly home & were directed to the Altzeimer's unit. A lady sang as we played "How great thou art." Afterwards, a nurse said that was the 1st time she'd ever heard anything from her. I watched a documentary about how music (especially familiar and loved music) can reach patients like that.

I'll also share how at times when both of my parents have needed me or my sister, we've reached out to other siblings to share the burden - otherwise it can get overwhelming.

I hope the best for you & your family. I believe in medicine, but I also believe in the power of metaphysics (ie placebo Effect) and that very often with the right diet, exercise and mental & emotional health, amazing healing can and often does happen.
Ie: https://youtu.be/O5wzYNMHwn8
http://www.vitalaffirmations.com/health ... UfwyoGxXv4

[crossmyheart]

I lost my amazing dad to Parkinson's with Dementia. At the time it felt like an eternity, but looking back, the worst of it was really only a few months. Get a really good geriatric neurologist to stay ahead of the meds. They are usually only effective a short while and then you have to switch.

Cherish the moments of clarity and write it all down. Even the dementia moments can be enlightening. My dad was obsessed about his collection of guns near the end of his life. It made for some fun conversations and I learned more about him those last few months than I could have imagined. Dementia has a way of removing one's self-imposed filters.

My deepest sympathies.

[No Tof]

I lost my amazing dad to Parkinson's with Dementia.

Cherish the moments of clarity and write it all down. Even the dementia moments can be enlightening.

My deepest sympathies.

I love this Crossmyheart.
My mom had dementia for the last part of her life and you are right about the moments of clarity being rare but wonderful. Wish I had written it down.

Achilles, I think your mom is lucky to have a son interested in being there during what can be a difficult time. Hoping you have good support for your own well being. Respite for you is just as important as the loving care you give to your mom.
Best to you.

[SeeNoEvil]

Dealing with aging loved ones is a tough one. I'm sorry your family is going through this. I would talk to your mother's doctor and see what resources are available to her and to you in her care and support. There should be a local or online support group established where you can gain the support you need and valuable insights into how best to care for her. This is to much for one person to bear so don't be shy about asking for help. Rally up anyone able to help in her care. Above all make sure you take care of yourself in this process.

I had a friend who was an in home caregiver for a woman with alzheimers. She would keep a daily log of her activities. She would get her to talk about her childhood, how she met her husband, her children, etc. Anything she could remember and record it in a journal. She also did puzzles, sang songs, baked her favorite foods which she would help with when she could. Take them for walks, rides, whatever they are physically able to do. As suggested she played her favorite music. There have been studies done on the effects music has on alzheimers and the results have been amazing.
There are several YouTube videos up if you are interested in learning more. They need to feel they are still important, loved and not a burden.
Your mother is lucky to have you there for her. Please keep us informed on your mother. You and your family will be in my thoughts. I wish you and your family well.

[Enough]

Well folks, it's been a rough month and a half. My mother's health has been poor, and she had to be hospitalized for acute liver
I imagine many of you have had experiences with similar things. I don't know why I am writing this, but I hope maybe I can get some advice or encouragement.

The neuropsychologist in me wonders if there is more going on. How old is your Mom? Has she had a brain MRI or neuropsychological testing?

My advice/encouragement is This: Get a solid diagnosis & specific treatment plan. And, don't try to handle this -- more than you reasonably can -- yourself. Very often, patients with severe impairments & a progressive illness/poor prognosis require substantial skilled medical care.

[achilles]

The neuropsychologist in me wonders if there is more going on. How old is your Mom? Has she had a brain MRI or neuropsychological testing?

My advice/encouragement is This: Get a solid diagnosis & specific treatment plan. And, don't try to handle this -- more than you reasonably can -- yourself. Very often, patients with severe impairments & a progressive illness/poor prognosis require substantial skilled medical care.

So her ammonia levels have dropped dramatically, which is good news.

A few hours ago they discovered a blood clot in her brain (which is affecting her speech, motor skills, etc.). She broke her ankle in March and had a couple of months of bed rest, which is probably what spurred the clot. She has been on blood thinners for a while now, and now they have to get her blood back to normal before they can operate. I'll keep everyone posted.

I feel somewhat optimistic. We'll see what happens...

[Zack Tacorin Dos]

Achilles,

So sorry your mother's struggling, but I was glad to see some reason for hope in your last post.

I have no advice but want to express my moral support. Like others here, I'm rooting for you and your mom. She's fortunate to have you by her side.

Zack

[Emower]

I'm sorry. I don't have any advice, I'm a long ways off from that eventuality. But I do have encouragement. You can do it!

[Mad Jax]

I doubt I can give 'advice.' But you always have my ear.

The slow degradation of a parent's health and mental faculties is difficult no matter what form it takes. Part of you is grateful that they're still with you and part of you wishes their suffering would end, and if you're like me you feel like the worst human being on earth for thinking the latter.

And maybe this is going a bit further than necessary but... whatever you are thinking of the situation, it's only human. Worrying about costs, the time necessary to take care of them, the loss of sleep and freedom, the pain of watching them suffer, all of these are normal worries that if you feel guilty about thinking... I don't think it's outside the realm of normal thinking. But I don't know if this is what you're experiencing.

[achilles]

I'm sorry. I don't have any advice, I'm a long ways off from that eventuality. But I do have encouragement. You can do it!

I thought that I was too...

So good news: They've given her whole blood, three bags of platelets, and some plasma. Over the evening her coagulation studies have improved to the point where we may be able to go into surgery tomorrow. The cousins came over to show their support, and my mom got annointed and blessed. She is quite lucid most of the time, though she has trouble with her hands and sometimes slurs her words--a huge improvement over this morning.

The Ammonia numbers have come down into normal range. Thank heavens. The remainder of her metabolic panel studies indicates that her number are improving on all of the liver function tests. And we now know the the heart is not the problem, after two echocardiograms and a physical exam.

[achilles]

So I've had a look at her CT scan report, and it didn't indicate a blood clot, rather it was a subdural hematoma on the left side, putting pressure on her brain and causing the neurological symptoms. I feel much better about this than I would about a clot in her brain somewhere. Surgery also seems much less scary, since they don't have to even cut into the brain, or invade blood vessels.

[Fifi de la Vergne]

Thinking of you, Achilles. I hope the news continues to improve.

[document]

I'm ignorant when it comes to medical things, but my heart is with you and your mother.

[blazerb]

I have only seen dementia from a distance. I know it's hard. I hope for the best for you and your mother.

[Random]

Sounds stressful and scary. I wish the best for her.

[achilles]

My mom was transferred to U of U hospital, consulted with the neurosurgeon, and went into surgery. They drilled two holes in her skull to drain the blood and excess CSF. I guess everything went well (I'm watching the hounds while my dad is down with her). She will be in the ICU for at least one day, and then stay in the hospital for about a week.

I guess that the hepatologist came in before the surgery and scared my parents with the worst case scenario on her liver. They haven't seen all the data yet, since she has records at two other hospitals. We're much more optimistic about her prognosis, and have a complete treatment plan ready. It's possible she may need a transplant. I told her I would give her one of my liver lobes, but she is type O positive, and I'm A positive. People with type O wait longer than everyone else.

I think she may die in the next year. It will be very painful emotionally, but I feel peaceful about it. My father is going to have a very hard time, though. I hope to help her resolve any spiritual concerns she might have (she stopped going to church in 1980 and thinks she's evil, which is ridiculous).

[SeeNoEvil]

My mom was transferred to U of U hospital, consulted with the neurosurgeon, and went into surgery. They drilled two holes in her skull to drain the blood and excess CSF. I guess everything went well (I'm watching the hounds while my dad is down with her). She will be in the ICU for at least one day, and then stay in the hospital for about a week.

I guess that the hepatologist came in before the surgery and scared my parents with the worst case scenario on her liver. They haven't seen all the data yet, since she has records at two other hospitals. We're much more optimistic about her prognosis, and have a complete treatment plan ready. It's possible she may need a transplant. I told her I would give her one of my liver lobes, but she is type O positive, and I'm A positive. People with type O wait longer than everyone else.

I think she may die in the next year. It will be very painful emotionally, but I feel peaceful about it. My father is going to have a very hard time, though. I hope to help her resolve any spiritual concerns she might have (she stopped going to church in 1980 and thinks she's evil, which is ridiculous).

Your mom has been on my mind much since your first posted. How is she doing today? How are you and your family holding up? {{{achilles}}}

[achilles]

So...

My mom had her hematoma drained and immediately began to regain her motor and cognitive function (although she was very tired). Saturday she began to have trouble breathing, and by Sunday was in the ICU with pneumonia. Her lungs began to fill with fluid/blood. They asked her if she wanted a breathing tube. She agreed, and since yesterday has been under sedation with oxygen and the tube. They have taken fluid and are culturing tissue samples to identify the cause of the pneumonia.

I think she will die this week. The stress on her organ systems--liver, kidneys, heart--may be too great for her to overcome. If the organs begin failing, it's over. If she does recover, she will be facing difficult physical and respiratory therapy, which she won't want to comply with. She has been in a lot of pain for many years, I think she's tired and may be ready to pass into the eternities.

My changes in belief have complicated this situation for me. I don't know what happens when we die. I hope that we meet with our loved ones again. I hope that she will see her Aunt Gwen and Uncle Vince again. I hope there is a happy pack of hounds waiting for her (especially Zeke and Mindy). But I just don't know.

I think my dad may also be having a faith crisis. He told me the other day that he is becoming agnostic. I didn't pry.

[Enough]

Achilles-- I'm so sorry. This is such a difficult thing to go through. Much love to you. <3 whatever happens, I wish you & your family all the best.