March 25, 2017 at 1:16 am #94487marionsModerator
smarlow…..you have put everything in place. I can’t think of one additional piece missing for the care of your Mom, except that of Hospice.
I realize she refuses Hospice (as did my husband) but with their support your Mom would be tended too well. A nurse trained in end of life care will be able to administer medication easing your Mom’s discomfort. I don’t know how you will handle the end of life situation without trained personnel.
You mentioned emotional abuse increasing in the last 3 weeks. It’s likely she is suffering Hepatic Encephalopathy, because toxic substances normally removed by the liver build up in the blood and reach the brain.
Symptoms are those of impaired brain function, especially reduced alertness and confusion. In the earliest stages, subtle changes appear in logical thinking, personality, and behavior. The person’s mood may change, and judgment may be impaired. Normal sleep patterns may be disturbed. People may become depressed, anxious, or irritable. They may have trouble concentrating.
At any stage of encephalopathy, the person’s breath may have a musty sweet odor.
As the disorder progresses, people cannot hold their hands steady when they stretch out their arms, resulting in a crude flapping motion of the hands (asterixis). Their muscles may jerk involuntarily or after people are exposed to a sudden noise, light, a movement, or another stimulus. This jerking is called myoclonus. Also, people usually become drowsy and confused, and movements and speech become sluggish. Disorientation is common. Less often, people with encephalopathy become agitated and excited. Eventually, as liver function continues to deteriorate, they may lose consciousness and lapse into a coma. Coma often leads to death, despite treatment.
Does your Mom have a primary care physician whom you can reach out to? That would be a good and necessary first step.
MarionMarch 24, 2017 at 4:58 pm #94486lainyMember
Dear Cassandra, I am so very sorry to read about your Mom and what she has been going through. Is her Oncologist aware of all these things. There are MEDs she can take for pain, nausea and depression. Have you tried to get a 2nd opinion. Last but far from least I have a list of the 10 signs the journey’s end is near. I found it to be very helpful and feel the more you know the less scary it is. I will send them to you if you email me through this site. Just click on my name and it will take you to my email. Also has the Oncologist suggested Hospice? They will start coming in months before the end and would be of great help to Mom and you.March 24, 2017 at 4:56 pm #94485positivityParticipant
First of all, It’s incredible for your mom, and she is a survivor for having this condition so long. Perhaps it gives hope to others. Did she undergo surgery or chemo/radiation?
The will has to be in the individual to not give up and continue. What did she do all these years to make this as a chronic condition and not a cancer?
Can you encourage anything she enjoys in life? Can she drink healthy juices or small amounts throughout the day?March 24, 2017 at 4:10 pm #13147smarlow68Member
My mother was diagnosed in 2003 with 4 months to live and here it is 2017!! I will cut right to the chase. She is now 73, VERY ANGRY and at times acts like this is a new diagnosis. “How do you think it feels to be told you are dying?” The doctor just told her, “there is nothing more we can do for you and palliative care is the next step.”
My sisters and our families all got together to talk to mom about the next phase which she absolutely did not want to hear…..even putting her fingers in her ears like a 3 year old. She has super swollen belly, thighs and legs to the point of fluids seeping out of the thighs. Her hands are very red and she has sores starting on areas of her back. Mom fell and broke her pelvis 4 weeks ago. Mom also has had two days of complete lucidity and has even been pleasant to be around.
Does anyone know or have an idea of what we can expect next? She isn’t showing jaundice yet, though her liver is clearly failing. She had an episode last Sunday March 19th where her hands were blue which I read was a sign of death approaching…however it went away. She is eating anywhere from 3 bites to 10 bites of food PER DAY and urinates maybe once or twice. I flew out from another state and had to get back to my youngest child so I am not there to see her rapidly declining condition, but my sisters and dad are updating daily. Her abdomen is getting more swollen each day.
Thank you in advance for any information you can provide. It has been a long 14 years and while we are all sad about her demise, we are also very emotionally drained due to the verbal abuse she has dished out over the last 3 years which has become extreme in the last few weeks.
Oh and she also has had 3 moments (about 10 minutes each) where she starts crying, apologizes for her behavior and says she feels her mind is disconnecting and she is scared. Her hands shake and she says, “I feel I am dying and I just wants to lay down and die, but I can’t.”
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