Saturday, January 10, 2009

caregiving - a daughter's point of view

I was caregiver and I had no rights. Mom denied her illness, outright lied to people, and she was not in her right mind. Many caregivers are in the same position. Without a geriatric assessment, and a determination of dementia or delirium, family are powerless to assist a loved one through the maze of health care. A Google search, however, gave me 13.8 million hits. We are a new market. Not that we have time to read and attend support groups!

I had to look after myself - put on the oxygen mask first, as on they recommend on the airplane. Mom fought my brother and myself, demanding we do certain things, and simply took advantage of volunteers, friends, and church friends in her desperate bid for survival. She didn't understand the impact of what she did on herself, her family, me & my family, her friends, the community and society. I am adamant that this story needs to be told for many reasons. My generation reads, researches, and questions.

Hindsight is 20-20, but I was homeless, and frustrated and Mom & I fought for most of the last 6 weeks. She was adamant about many things, and was too ill to make informed decisions. She had chemo when she was beyond being able to tolerate it. She determined dad should have radiation, when he wasn't able to make the decision himself, and it was contraindicated. Tumours are deadly at his age, and kill 80 % people within 5 years. It reduced the quality of life. I could have stayed home with dad and helped him pass peacefully. Instead, he was tortured with radiation that caused him infections, polypharmacy that induced delirium, and ensured that his quality of life was beyond what any of us could endure emotionally or support physically. I had to have him put in Long-Term Care. I could not lift him or meet his ADLs. I was on antidepressants for 18 mos., and dad was belligerent, angry, frustrated, and had a horrible time of it.

I wrote my book, and post on this blog, for family members and professionals. I hope to make a difference, you will see my conclusions and suggestions for the government.

I am still angry. I know that the neighbours covered up and enabled Mom and Dad to live here beyond what they could cope with. Community members assisted Dad in doing his banking when he was physically, socially and emotionally unable to do so. I should have demanded an assessment at this time and enacted the Power of Attorney in had in my possession.

The impact on family and society is horrible. If you could see what happens around here, the filth in which people live (this house was AWFUL), and how families are not informed, you would be appalled.

How ridiculous that we cannot name a patient advocate, and entitle them to be there. We know that the poor are the least able to advocate for themselves. Busy doctors are not giving much time to many and the worst ones believe in the pop a pill philosophy. The poor are not eating properly, and must endure more chronic disease than the rest of society. They are the least able to advocate for themselves. Researcher Claire Heslop of the University of British Columbia said, people from low-income neighbourhoods may suffer from disparities in overall health care that contribute to other diseases, especially cancer. Even in a country with a universal health care system.

The medical profession doesn't get it. PHIPA precludes FIPPA when it is a safety issue. You know, the first things they ask, when discharging someone, is do you have a caregiver, neighbours, family to care for you, yet you cannot have them there in hospital. We must allow single people, those without close family members, to be able to name a personal support person to help us through this maze. It is criminal what health care does to those alone.

We are putting ailing and frail seniors on medications that are contraindicated. I knew Dad shouldn't be having Risperdal (risperidone), but had no authority at the time to advocate against it. He needed pain killers. "NAMI's Fact sheet on Risperdal® (risperidone). ... is not approved for the treatment of patients with Dementia-Related Psychosis". I read this and did not have the heart to speak truth to power.


lyzzydee said...

Things are as bad in the UK. My husband is a carer and works in the community. A very important job, a person who is in direct contact with the client and able to see deteriation and changes, BUT they are at the very bottom of the pile when it comes to having any input. Frequently the staff are not trained and unable to deal with the strains of their job, the pay is terrible and the pressure to 'fit in as many as possible' is immense.
When my father was in hospital with a ruptured aortic anuerism he was operated on by marvelous surgeons who saved his life, he had horrible complications and we were told if he survived it would be unlikely he would walk again or have his mental abilities. My brother and I decided that we would put in the time to assist him and we made a difference. Once out of ITC and back on a regular ward, he could not get out of bed, but was expected to magically feed himself from a tray left out of his reach. Even though he was in a medical facility he was only give physio once a week. we had to fight every step of the way to get what he was entitled to. Every day my brother, my son, my sister in law , my husband and myself went into the hospital and gave him physio as directed by the experts twice a day. That made the difference between him being in a wheel chair and walking. The man in the next bed with the same diagnosis did not have any family help and is still in a medical facilty three years later.
Dad is now doing well, and I am still angry with the authorities that could spend goodness knows how much money on a 12 hour operation and subsequent intensive care only to leave himn to starve once he was back on the ward. How is that right???
Sorry to ramble, its a very sensitive debate for me, traveling along a similar path to you, feel free to delete if I have over stepped the mark!!!!

Jennifer Jilks said...

No, Lyzzydee, these are the stories that are meant to teach us lesson. Hopefully, if we document them, they improve the system.

The health care system in many countries depends upon family members. The research shows it is having a big impact on caregivers.