We at Parent Your Parents think this is a terrific “true experience” article authored by Jacqueline Marcell. Jacqueline is also the Author of Elder Rage @www.ElderRage.com. Check it out!
Jacqueline Marcell, Author, Elder Rage www.ElderRage.com
For eleven years I pleaded with my challenging elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, “Jacqueline, I just can’t work with your father. His temper is impossible to handle and he’s not going to accept help until he’s on his knees himself.”
When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his loud protests. It was so heart-wrenching to have my once-adoring father be so loving one minute and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house. I took him to several doctors and even a psychiatrist, only to be flabbergasted that he could act charming and sane when he needed to.
Finally, I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and PET scans. After ruling out numerous reversible forms of dementia such as B-12 and thyroid deficiency, and evaluating their many medications, he shocked me with a diagnosis of Stage One Alzheimer’s in both of my parents – something all their other doctors missed entirely.
What I’d been coping with was the beginning of Alzheimer’s, which begins intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own bad behavior of a lifetime of screaming and yelling to get his way, which was coming out now in intermittent over-the-top irrationality. I also didn’t understand that “demented does not mean dumb” (a concept not widely appreciated) and that he was still socially adjusted never to show his Mr. Hyde side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.
Alzheimer’s makes up 60-80% of all dementias and there’s no stopping the progression nor is there yet a cure. However, if identified earlythere are some FDA approved medications (more in clinical trials) that in most patients can mask dementia symptoms and keep patients in the early independent stage longer.
Once my parents were treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s volatile aggression, I was able to optimize nutrition and fluids with much less resistance. I was also able to manage the constant rollercoaster of challenging behaviors. Instead of logic and reason, I learned to use distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, I lived in their realities of the moment. I learned to just go-with-the-flow and let the hurtful comments roll off while distracting with a topic of interest from a prepared list.
And most importantly, I was finally able to get my father to accept two wonderful live-in caregivers and not drive them crazy and to quit. Then with the tremendous benefit of Adult Day Health Care five days a week for my parents and a support group for me, everything finally started to fall into place.
Alzheimer’s disease afflicts more than 5.4 million Americans, but millions go undiagnosed for many years because early warning signs are chalked up to stress and a “normal” part of aging. Since 1 in 6 women and 1 in 11 men are afflicted by age 65, and nearly half by age 85, healthcare professionals of every specialty should know the 10 Warning Signs of Alzheimer’s and educate their patients so everyone can save time, pain, money, heartache… and a fortune in Kleenex!
This is an editorial to the Miami Herald written by H. Frances Reaves, Esq., President of Parent Your Parents, in October of 2017. This was written after Hurricane Harvey and Irma and the mirror placed on Senior Services. As we suffer through a very cold winter these words are still prophetic.
IF YOU HAVEN’T SEEN the video of the residents of a nursing home in Houston, Texas sitting in waist high water simply search “video of seniors in waist high water” in your browser – the You Tube video comes right up. School children were evacuated, families were evacuated and who was left behind . . . seniors. Two weeks later, in the aftermath of Irma, 14 seniors die from overheating in a Broward County Nursing Home.
If these seniors had been children the outcry would have been much louder and punishment swifter. An excellent example is the most recent earthquake in Mexico. The school caved in on top of 24 children and four adults. The volunteer rescuers were there within minutes and the TV crews transmitted the entire search and rescue for more than three days. That would not be the case if this had been a senior citizens facility.
Fariola Santiago wrote in her September 24th column that “the elderly are like children, frail, unable to care for themselves, and vulnerable to abuse and negligence. Those who don’t have money or advocates and require round-the-clock care end up in places with deplorable conditions . . .” I agree with Ms. Santiago regarding the elderly but disagree that all nursing homes have deplorable conditions. We also need to remember that, with the exception of one “lonely soul,” everyone had a family . . . and the family did not take them from the ‘deplorable home’ even after they knew about the power failure.
Baby Boomers, Gen Xers and Millennials beware — you, too will be a senior! Seniors, are an older version of who we are today. We espouse the sentiment that, “I only want to live a long life if I have a quality of life” but legally we don’t have a choice once our mind collapses.
What we don’t discuss is that dementia does not take away your intellect, mental pain or physical pain. Dementia takes away the ability to communicate effectively. It also absconds with your memory – which allows we the children to believe that with memory loss there is a loss of all senses. That is not the case. The 14 elders who died felt pain and the first to die truly suffered because they did not have the benefit of hospice care.
No doubt, the staff at this nefarious nursing home was negligent, incompetent and uncaring and they were allowed to function as “caretakers” for years. It took a hurricane and power outage to bring it to light. Had this been a daycare center the negligence would not have been allowed to continue.
As the President of a company who advocates for seniors, finds resources, counsels families and assists in medicaid preparations, my experience shows that most of us face living in a medicaid facility. Unless you have a healthy pension or half a million dollars you will not have the money for dementia care in a private facility. Today that runs between six to seven thousand dollars a month. If you qualify for medicaid, nursing homes run about $700.00 and medicaid picking up the balance.
We must look in the mirror! let’s begin the process of treating our elderly loved ones as our children. Treat them as you treat those around you. Hold the Assisted Living Centers and Medicaid Facilities accountable and — START SAVING!!
What is Hospice? First, it is a type of care and philosophy that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient’s pain and symptoms, as well as attending to their emotional and spiritual needs. OK – so what is palliation? Palliation is a service that makes you feel better even though it can’t cure you.
Hospice is a positive addition to our medicare system because the focus is the patient. The goal is to keep each patient as comfortable as possible. This means additional care over what your loved one is already receiving. Between nurses, social workers and priests, there is someone there two to three times a week to make certain there is no pain or discomfort.
The other side of this service is that it is run by medicare. That means that Hospice is free if you’re in Medicare as most of our seniors are. This also means not all Hospice providers are the same. There are thousands of Hospice providers and you have to be certain that they are doing their job (much like those Medicare doctors I’ve described in earlier articles).
I’ve had two different patients in different facilities with different providers and the difference was night and day. One provider is in a nursing home that accepts medicaid patients, we’ll call it A for purposes of this article. The other provider was for a client who lived in an assisted living facility – one that cost $4500/month. This Provider is called F.
A little background – once a patient has been admitted to Hospice, its doctors, nurses and aides “rule” the care. If the patient is a diabetic he or she will still stay on diabetes medicine but perhaps be taken off non-essential medication depending on the comfort level. Yes, the facility still feeds and provides a clean environment but Hospice is in charge of the patients comfort.
In most nursing homes the patients are in full blown dementia but not necessarily at the end of their life physically. Therefore, it is much more difficult to qualify for Hospice in a nursing home. However, once the patient is accepted the care for my nursing home client was beyond great. Her nurse was Mark and I could call anytime to check on her (once the children had given their permission)
The other client was in an Assisted Living Facility and qualified for Hospice before the children asked. They had no indication he was in his last days, weeks or months. Once their loved one become uncomfortable and disoriented they started receiving a “run around.” Parent Your Parents was asked to intervene. Here’s what we found, the Assisted Living Center blamed it on Hospice and Hospice blamed it on the Assisted Living Center. We started calling the Hospice office daily to ask for more help. Hospice told the children that babysitters were needed (at $20/hour). That is when we went into advocate mode. I reminded the Hospice company that their job was comfort and they had to start providing real comfort, not advice to the children and Assisted Living Center’s employees! Remember these companies make money and paying people to babysit takes away from their bottom line. The end result, this Hospice company did what they advertised and found a bed in an extremely lovely location where the client passed away comfortably and peacefully.
Bottom line – not all Hospice is created equal.