My mother is 74 years old. I have seen her go in and out of the hospital since August 5, 2022 with 7 ER visits. All of her medications are new: 8 medications plus 4 insulins shots. It was changed during a recent ER visit to 3 medications and 4 insulin shots.
She had a surgery in September that left her unable to walk. Now, she is bedbound. She use to be a dialysis patient. That was for two 1/2 months: October, November, and December. They told her she is no longer a dialysis patient after treatment. During this time, she was going to the ER for blood transfusions and poor vitals.
My mother was diagnosised with an incurable disease: pemphigus vulgaris, which was changed to Phemgius bulloid just recently. She is given a "Nucala" shot which causes her entire body's skin to regenerate (nails fall off, and her skin bleeds and regenerates). I have seen my mother go through so much pain, everyday. I disagree entirely with her medical treatment. She has not gotten better. She has gotten worse.
As a daughter, I feel cheated. I know I am cheated. My mother has home health come out to her private home 1-3x a week for physical therapy, occupation therapy, and RN's for wound care. She is in a lot of pain. And, she has not gotten better.
There is no oversight for my family, a young family, who cares for a senior with so many hospitalizations, doctors, RNS, caregivers, and facilities. Its overwhelming. There's no outreach for questions, concerns, reports, etc on any topic that arises in this categories. The shortage of health care workers has effected RNs through home health to see my mother which has impacted her the last 2 months, 2 precious months lost without an RN to see my mother condition and care for her at home.
It's very painful to see my mother go through so much. I don't see her getting the best of care. And, her care at home with the caregivers is poor. She just watches TV, and there are 24/7 caregivers who are paid private pay, out of pocket, with my mother's retirement money from real estate. A lot of her money has been used for caregiver services without much oversight for the review on the care given, given the amount of money paid to them. I disagree with the caregivers influence for so long in the house, the lack of oversight on this area of senior care, and the way its been for us as a family with this impact especially with how its been effecting, driving, influencing my mother's health. For example, a lead caregiver overwhelms the house and influences my mother as if he were a RN for the last 4 months. This has effected my mother's decision making and care, level of care.
After that, there are no real social interactions, entertainment, group activities, etc for a senior at home with caregivers (and an RN 1-2x a week). I don't know what other go through caring for their senior mother, but for me, isolation, and lack of support has kept me from responding and tracking my mother's health in a strong, proactive way. I have had to rely on others to fill in the gaps on her ER visits, diagnosis, names of doctors, names of caregivers, expenses, etc.
The caregivers overwhelm the house. It feels like the house is turned upside down. I do not feel like I run my own home. The home I lived in my entire life. They dominate the house. There is just 3 females who live in the house including the senior. And, then there are 24/7 strangers in and out caregiving for my mother. Home health is at the house 1-3x a week and my mother's physical therapy goals have not been met despite 5 months now.
It has been difficult to navigate with the worries, sadness, grief, adult bullying, sorrow, and PTSD that I have developed seeing what my mother has gone through and what I have gone through as a daughter.
The public's unruliness with fighting on the TV, the news, pandemic, etc has caused and added to the worry in our private home with caring for a dying senior mother. It has been unpleasant, I have not been able to enjoy my mother's life right now. Our precious time together has not been safeguarded with more developed senior care at home.
I do not feel supported in most ways. With my mother's condition being incurable, seeing her in so much pain, and with no guarantee of recovery to walk and with her condition, it is a slap in the face with all the "help."
What else can I do to make it better in my mother's life and with my own life. I do not feel like I am surviving what Life has thrown at me with my mother's condition, the way it has been at home, and all of the things I have gone through as a daughter, and as a person.
My mother has a 2nd opinion on her condition, which I realize can change her medications, routine, prognosis, etc. It was almost cancelled today because my mother stayed up all night worried. I don't like what's going on in my life and her life. It is dominated by others.
The current health care system and health care is not holistic, it has been out of the hands of my family and me, its unknown (with no cure to my mother's condition), and motivation is dominated by "free styling" with whatever the doctor's decide. I disagree with it all.
Depression, Anxiety, and PTSD are effecting my life where I cannot see clearly and be with my mother in a present way. I am not able to respond to present situations faster. I feel overwhelmed. I feel exploited, belittled, harassed, set up to fail, by the health care system and figuring out how to care for my mother.