For almost three years I have been practically "living" at hospitals and nursing homes until I recently got my mother home with me. I have tons of documentation to fill a book over how our healthcare system is not there for our elderly loved ones. I have had positive and negative experiences. For starters, my first exposure to a nursing facility was tramatic. I slept in my mother's room for three months and took off work. It was horrible. More recently I discovered that an RN at a chronic care facility falsified records and lied about giving my mother her medications. I have seen healthcare workers not wear gloves and practice safe infection preventive measures. I have been to nursing homes that I would not place a dog. Insurance manages care in our country. We are told that our loved ones are ready for discharge often times prematurely. We then have minimal time to place them elsewhere. Don't get me started on inept discharge planning. My mother was discharged to my home with a trach and in need of oxygen. I took off work the day of her discharge. I asked the discharge planner could we please go over the plan that morning. She made it clear that this was the last step. So she quickly sat down with me right before my mother was taken to my car. I was not familiar with all of the questions I should have asked. So I get my mother to my home only to find out getting her oxygen was a big issue. No one properly trained me on trach care. I was give like five minutes of trach care training right before my mother left. I go to pick up her medications and two needed prior authorization. I could go on and on about this issue but I won't fill up this post. Suffice it to say someday I will make these issue known but in the meantime if we caregivers would together raise our voices to the highlest levels of govenment perhaps someone will hear us. Life is precious. We only get one. I have spent so much time documenting my mother's care and intervening with health care personnel that this is time I should be able to enjoy being with my mom. Much of my stress is attributed to having to try to move mountains to simply have my mom's needs met. After being ventilator dependent for two solid years, they discharge my mom on a trach and not one person helped me make sure oxygen was available in my home. She could have died had I not intervened and found a great internist. The home physicians group that the facility arranged for me was useless. All I am saying is the people on this forum love their family and we need to get together here and see what can be done so that others don't need to suffer. I wish I could do more to have my mother have a quality of life but I do my best. I am party of one. I will never forget the experiences this has taught me.
While I was employed as a caregiver, we unionized. Our union got us a raise, and health insurance and we have worked together as a group to prevent cuts in hours for our clients. Maybe family caregivers could somehow join with the union groups when they do such activities as letter writing and telephone campaigns to make our needs known to legislators, marching on the capitol and having one-on-one meetings with the legislators to tell our stories.
I realize that the unions aren't likely to be able to help family caregivers in any substantial way, but they do at least have a system set up to make the plans and then get the word out to give people the opportunity to participate. They might welcome additional participants to make their demonstrations more powerful.
The union I was part of was Service Employees International Union (SEIU). I'm no longer a member since I'm not doing that work any longer, but I still keep up with the activities and lend my support when I can because I know how great the needs are.
I hope things go well with you and your mother.
What I think we are going to see – this is going to really, REALLY, affect us (those of us in the age group of 40 – 70) – is the change of the medical classification of dementia to a terminal disease. This is going to be more important than your Medicare eligibility age raised to whatever or getting worked up about the Medicaid look back period or dealing with bottom of the barrel employees.
Right now dementia’s tend to be treated for the “presenting symptom”.
Example: dad isn’t eating = feeding tube & Megace;
mom has pneumonia = hospitalization, respiratory tx & antibiotics.
System now does things based on curative therapy to treat dementia’s and illnesses that happen to a person with dementia no matter where they are on the level of dementia. This costs $$$ and the person still has the underlying terminal disease. A lot of what caregivers &/or as family of elderly deal with will be a moot once dementia is considered a terminal.
In 2000, the AMA’s Diagnosis, Management and Treatment of Dementia: A Practical Guide for Primary Care Physicians states: “Many physicians are used to thinking of cancer, congestive heart failure, and chronic obstructive pulmonary disease as conditions for which palliative care and hospice referral may be appropriate; most do not think about dementia in the same way….Alzheimer’s disease and other progressive dementias are life-altering and eventually fatal conditions for which curative therapy is not available. Thinking of dementia as a terminal illness from which people are dying over years instead of months allows one to focus explicitly and aggressively on a palliative care plan.” This is a BIG deal & HUGE change. After the AMA guide came out in 2000, we started to see more hospice created in anticipation of the increased #’s of terminal diagnosis for dementia. And more doc’s suggesting hospice which Medicare pays for.
Then in 2009, the Mitchell study came out. It’s a very detailed study on dementia, especially advanced dementia. Mitchell concludes dementia is a terminal illness best served via palliative care in advanced stages.
IMHO what the Mitchell study (and others too, but Mitchell is significant) is going to do is to enable systemic change of what happens with dementia patients
based on data. In turn, this will limit what is done TO and paid FOR with advanced dementia patients. Eventually dementia, as a terminal disease, will all be about palliative care after a certain stage is reached:
Example: dad isn’t eating = comfort care, no feeding tubes;
mom has pneumonia = comfort care, no hospitalization.
This change is already happening. On April 19, 2011 NIH released new clinical diagnostic criteria for Alz. The emphasis is now on biomarkers, scan/neuroimaging and cognitive testing to evaluate and diagnosis dementia into 3 stages. The last diagnostic guideline on dementia was back in disco days of 1984.
The Mitchell study and NIH guidelines will guide what changes are made for advanced dementia care (stage 3). It will be radically different from what most of us expect from health care – which is all about “cure” and doing whatever might bring about a “cure”. It will be about palliative care ONLY in a hospice based setting (either at their home, NH or free-standing hospice) for advanced dementia.
In a way, it is kinda similar to what happened with the Kinsey studies and how homosexuality has evolved within the health care system and the general population because of that. Prior to 1973/75, being gay was considered a mental disease. But because of the Kinsey & other studies from the 1950’s – 60’s, homosexuality was removed as a mental illness to a “ego-dystonic” symptom in 1975 (this only because of the politics of the time). Then in 1986, it was removed completely from DSM classification which hospitals & insurance companies all follow. So if today, you wanted to “cure” your kid of being gay, your health insurance company won’t pay for it as homosexuality it not a disease.
Once dementia is viewed as terminal and a person has reached a certain level of advanced dementia, the only thing the insurers, Medicare and Medicaid will pay for will be hospice and the very limited comfort care within hospice guidelines. So if you wanted to “cure” your parent or your spouse of Alz, and they have advanced dementia, you will have to do it ALL via private pay as the others won’t since it’s a terminal disease.
I think the numbers are 4.5M + people with dementia in the US now and it is expected to triple in 40 years, then hospice based care is the only financially feasible way for families, Medicare, Medicaid and the health insurers to deal with advanced dementia and have the resources for health care for the rest of the population. It’s not pretty but reality often isn’t.
Dementia as a Terminal Disease.