Elder Rage: How to Survive Caring for Aging Parents

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!

NOT ALL HOSPICE IS CREATED EQUAL

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.

FINANCIAL TRANSPARENCY

As I’ve discussed in several articles the discussion of money is a must but can also be a monster rearing its ugly head.   We’ve discussed having  Powers of Attorney in place for our elderly loved ones.  Most states require  one for finance and one for medical — two different trusted representatives should be chosen.  This allows for shared responsibility and shared communication.

Although the trusted loved one is normally fine and nothing happens, it can be a slippery slope which is why I recommend any financial moves to be as transparent as possible and shared among the siblings or trusted loved ones. The vast majority of family members rarely swindle or take advantage of their parents or elderly loved ones but it does happen and the idea of unrestricted funds can be a temptation.  This is why we recommend that there be an “informal transparency” to protect your elderly loved one and you.

Following is one system to implement – one trusted representative is a signatory on the elderly loved one’s checking accounts and a second trusted representative has access to it (i.e. – given the user name and ID).  When a separate account is created to pay for care, we suggest two trusted representatives on the account.

The other pitfall are the family members, friends and care takers who will try to manipulate your elderly loved one into private gifts, be it through money, credit card purchases, a car for their grandchild (we’ve seen this) or simply write them into the will.  Again, this is why financial transparency is a must.  If the monitoring is spread among many it is much more difficult for one to have undue influence.

The elderly community is rife with stories of hired “trusted” caretakers who steal little things — trinkets, jewelry, food and petty cash.  (See my column on hiring and monitoring Caretakers).  Again, anything valuable should be removed from the house and gifted to the different loved ones and/or trusted representatives.  If the family doesn’t agree we suggest outside assistance in the form of attorneys and psychiatrists.  I always hesitate to use either because  . . . they cost money!

The Expected is Still Unexpected

On July 28th, at 1:00 am in the morning my phone rang, it was the hospice nurse informing me that Mom had died at 12:28 a

Mom and her skydiving team – Frances, Jeff and Elizabeth

And yes, our hospice nurse had prepared us for this  . . . he said as nicely as he could that she was “leaving”, that “it was time”  . . . using gentle words to describe death.  Still, when the call came early Friday morning I wasn’t’t “prepared.”  Why?  Because no one ever is.

As you know if you’ve been reading my columns, the family had done all we could to prepare for death.  So the lesson learned was PREPLAN.  My brother and I had  hired a funeral home which allowed us to make our father the focus of our lives in the the immediate days after his partner of 63 years died. He insisted on seeing her one last time, my brother called the funeral home and they prepared her for Dad’s visit.  My father insisted on a small, familial memorial service — not a problem, we focused on the service and the reception after.  Caterers were hired, programs were printed and music abounded.

And yes, all this costs money but there was no “guilt money”.  We knew what we could spend and had done all the budgeting when hiring our funeral home.  In fact, we told the director that when Dad dies he wants his ashes placed in a military cemetery in Ft. Worth, TX – next to one of his best friends, our cousin General Akin,  “so they can pal around.”  The funeral home takes care of that, as well.

So, yes it all worked to our benefit.  Mom was cremated, some of her ashes placed in the ground at the nearby churchyard and the rest to be mixed with Dad’s when we take them to their final resting place.  What doesn’t go away, nor should it, is the grief.  it comes in waves.  At the service when I spoke I didn’t shed a tear.  Two days later, telling a ‘stranger’ the story, my eyes welled with tears.

Grief counselors tell you this is what happens.  I was shocked at myself, I knew Mom was close to death but when the finality happens it hits hard!  We even had time for last rites, last songs, last moments  . . . but death is final and no amount of preparation prepares you for it.

Revel in the memories, think of the good times and admire your loved ones for all they accomplished  . . . including you!  Yes, they do live on in our hearts.

Nursing Homes – Often the End Game

I am confident most of you heard the news about the eight seniors who died from overheating.  They were all in a licensed “nursing home” in Hollywood Hills.   ‘Nursing Home’ is a euphemism for a home for seniors who are at the poverty level and qualify for medicaid.

Nursing homes are like every other industry — they have to make money to survive.  In the case of nursing homes they’re paid by the state medicaid fund and it’s per pa

The nursing home visit

tient.  This fund is made up of state and federal dollars.  Obama Care expanded medicaid in the states who took the federal dollars but Florida is not one of them.

Bottom line, these are not the luxurious environments for either staff or residents.  In my parents case, Mom had been in a lovely residential facility where she was one of three or four people.  Her Long Term Care Insurance paid for it.  She outlived her two year policy and we had to place her in a Nursing Home.  It was our only realistic option as Mom’s care in an Alzheimer’s facility would be close to $7000,00 a month.  Mom and Dad couldn’t afford it and neither could the children.

In pursuit of the best we could find, I  went to several nursing homes and learned more than I needed to know.  All these homes are very austere and it’s a shock!  Bare floors, usually

formica, and waiting rooms with plastic chairs.  Almost all the receptionists were behind a barrier — some better designed than others.

The patient population is made up of mostly Alzheimers and Dementia sufferers.  All the residents are in a wheel chair, a portable bed or never moved from their beds.

Another surprise, the aides often use pulleys attached to patients to change their clothes, move them to the shower or simply change their diapers.  Depending on the home, these medical aides must change and clean about 19 patients each.  Some work in tandem others work solo — it all depends on the chore.

Further, most patients are only bathed twice a week, maximum three times a week.  During one of these showers their hair is washed.  Bottom line, it’s not how we envision our last days, weeks, months or years of life.

On the good side, the ‘better nursing homes’ have excellent care.  They hire a team of Geriatric Doctors that include Psychiatrists.  These Geriatric groups come to the Nursing Home through a PPO and the doctors physically visit once a month.  There is usually a Podiatrist group that also visits once a month (Medicare pays for podiatry services) and a dentist who comes once a quarter. The day to day care is with the Registered Nurses (RNs), Licensed Professional Nurses (LPNs), physical therapists and medical technicians.  They also have a contracted Hospice service.

Here are some tips when you need to look for a nursing home:

What is the turn-over rate of its employees

Needless to say, the less turnover the better the place.  If the staff is not leaving then something is going well — usually their paid above average wages

Is there a hair salon

If there is a hair salon then there’s a market for it.  This means the residents take pride in how they look.  People who take pride in themselves care about their environment.

Is it clean

As we all know, cleanliness is godliness

Is there a smell

Again, if it smells that means it’s really not clean – no matter how good it looks

Is there a smile on the faces of the staff

A smiling staff means a happy staff

Again, hopefully it doesn’t come to this but if it does, know how to choose the best one.