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!
It’s not easy to parent your parents — it’s not a pleasant role — it means Mom, Dad or both are getting weaker and none of us want to admit the role reversal has begun.
When I consult with clients I hear time and time again — Mom doesn’t want to leave her home, Dad is not going to allow any one else to pay his bills, There is no need to force anyone — the name of the game is to persuade in an assertive, caring and respectful manner. For their sakes and yours, embrace the role!
After Mother’s decline into Alzhiemers, my brother and I were thrown into the role reversal with little or no direction. Here’s what we learned:
Accept Your Role. No one else can do it with your love so embrace it and consider it an honor. But for them, you wouldn’t’t be here.
Be Assertive. Yes, at times you will have to tell Mom or Dad (or both) what to do. Of course Mom doesn’t’t want to move from her home — you have to tell her (gently and politely) that she must. You explain the reasons, answer her questions and, as she did with you, persuade her that “this’ is the best way.
Pay Attention to the Basics. Are your parents showering regularly? Are they having regular meals? Are they taking their medication on a timely basis? If not, see above — it’s time to be assertive and decide how best to move them forward.
Insist. Or, if you prefer, be firm. When your parents resist keeping on insisting. “Dad, we have to do this, we’ve gone over it a million times – let’s not fight about it.” Again, no yelling or shoving – just gently insist.
Prepare all the financial and legal documents. Taking the helm of your parent’s finances is a daunting but necessary task. Make yourself, or your sibling, a signer on their checking accounts then have them sign a Power of Attorney for both financial and medical decisions. This must be done before they lose their mental capacity. If you don’t do this it will be much more difficult and costly when they lose their ability to make decisions.
At the end of the day, here is what you have to remember – when it comes to parenting your parents you have three choices:
- You care for your parents yourself
- You hire someone to care for your parents
- You allow them to enter a Medicaid facility
These alternatives all have pluses and minuses. Most of the decisions are based on finances and nothing and no-one is perfect so after you’ve been assertive, and insistent forgive yourself – your parents did!
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. 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 that fell down on top of 24 children and four adults had rescuers there in minutes with TV crews transmitting the entire search for more than three days. I fear that would not be the case if this had been a home where senior citizens lived.
It is this dichotomy that led me and my partners to found Parent Your Parents (PYP)(parentyourparents.com). How could anyone allow their “charge” to drown or die from overheating. Yes, these Assisted Living Centers and Medicaid funded nursing homes are negligent but isn’t that also the case for the families who left them there? Would they have ever done that to their children??
There is no criticism here — simply a look in the mirror. If your parents or grandparents are in one of these homes today the chances are EXCELLENT that you will be as well. Yes, we can buy Long Term Care Insurance but today’s policies don’t cover you for the duration of your life. We are living longer and unless you have a minimum of $5 million there is a very good chance you will use all your money in the last five years of your life for healthcare.
As a child of an aging parent or loved one there comes a time and you must take charge. It isn’t easy and it wasn’t easy for them when you were a cute kid begging for a kitty and they said no. But, if it’s time – face it .
First, honestly asses where they are mentally and physically. Discuss options with your siblings and present a united front — just like your parents did when you were a child. You must have a Living Will, you must have a Power of Attorney – one for finance, one for medical. You must go to the doctor with them and make certain they are receiving the best medical care. The doctors MUST know that you are on top of their health. (Remember, I fired my parents doctor, see Article 2 – How to Get the Best Care Through Medicare),
Secondly — ask them what insurance they have . . . is it life insurance, supplemental health insurance, burial policy, Long Term Care —- and, the most difficult question — what is their financial status? None of this is easy but none of it takes financial acuity — it takes emotion, love, tenderness and hand holding. Remember when you were a kid and your parents took you through some of life’s trials with the same skills?
Disasters like Irma, Maria and earthquakes bring out the best and the worst. Now is the time to be the best.
During the journey many of us will take with an older family member there will come the juncture of whether to have in-home care, a move to a smaller place or a move to an assisted living facility.
On an emotional level, we all think it’s better for everyone if they stay in their home with in-home care. That works if family members are within a 15 minute drive. If this isn’t the case then one must really begin to think about “the best care.” Best care means the best for everyone concerned. These are tough issues and we tend to put off these decisions until you need to make them. That is the wrong time — you’re under an amazing amount of pressure, emotions are swirling and not all family members agree on the definition of “best care”.
My father always said he was going to die in his home. That he would only be taken out “feet first”. The children always went along with him because there was no need to rock the boat. Mother, whose dementia was getting worse, would agree with Dad. In order to accommodate Dad, we hired a caregiver to come in three times a week to “entertain” Mom. The bad news – caregivers don’t stay forever. (In this case 6 months which is a long time in the caregiver world.) We hit the jackpot with our first one but then the next three simply didn’t do the job. They were late, wouldn’t’t show up . . . all the usual employment issues.
In our opinion, several questions must be asked:
How many family members living in the home?
Do both need care?
How mobile are they?
Does anyone drive?
Do they need 24hr care or will 4 to 6 hours 3 times a week suffice?
Does anyone have dementia/alzheimer’s?
Once these questions are answered then it’s easier to come up with a solution. Following are some practical things to think about:
How much money is there?
Is there Long Term Care policy?
Does one need more care than the other?
Is it only one family member?
Do you need to be “medicaid ready”?
Are there other benefits for which your family member is eligible?
In the case of Mom and Dad we had a catastrophic event and we had to move them from their home to a totally new location (see my first article). This experience is how I know that asking your parents what they want done in their ‘final chapter’ is easier said than done. It’s an extremely difficult conversation and we tend to avoid it. DON’T! If you don’t think you’re capable of having this discussion, hire someone to assist – sometimes our loved ones hear bad news better from outsiders. If you’re emotionally wrung out because you’re in the middle of the “journey” — you are not alone.
Parenting Your Parents has mental health professionals who are skilled in family matters as well as move managers (a person who manages the entire move — from sitting with the person and deciding what to keep, to selling/giving away the surplus and hiring and managing the move) — all of whom assist in making any transition as easy as possible . . . and none are easy.
That dreaded phone call — the one where you don’t know the person at the other end of the line and he or she says, “we’re calling about your Mother.” In this case, Mother, suffering from dementia, had pulled the fire alarm and the locks on the “locked facility” had released. She walked out onto a busy street in Atlanta, GA and tried to flag down a car and escape. Luckily, a concerned motorist called the Police who called the facility. They walked two blocks and found my mother. Until that moment no one knew she was missing. That was a wake-up call.
Dementia does not mean stupid — it simply means that the mind is forgetting. Mother, a summa cum laude graduate of American University, wanted out! She took a look at her surroundings, saw the fire alarm and pulled the lever. The problem, as you can see, is that her “protectors” are not as smart. Needless to say, we moved her out and found another place for her to live. That was three years ago. Today, she has forgotten how to walk, cannot move her wheelchair and is no longer a flight risk.
If one of your family has dementia/alzhiemers it is incumbent upon you to visit the facility regularly — this alerts the staff and the person receives better care. It’s the old axiom — the squeaky wheel gets the oil. Mother is now in a Medicaid nursing home and we are more vigilant than ever. The stories we hear of horrible abuse might be rare and extreme but they’re true. I check her legs, arms, feet, cut her nails and toenails because no one else does. Mom always has new scratches and I ask about each and every one. She can barely communicate so she is at the mercy of those who attend her.
Inform the nursing home of any issues verbally and follow up with a written document. I always email what I stated verbally.
Dad is in an assisted living facility. He has his wits about him and can communicate his needs to the staff. Still, we’ve had to watch the little things — are they washing his clothes on time, changing his sheets weekly, doing the deep cleans in his room and treating him with respect. As Dad has aged he has also lost motor skills, he is a fall risk and weaker – hence the heightened vigilance. If your parents live together this becomes much easier. They watch out for each other. However, this is an exception, not the rule.
In conclusion, the workers at these facilities care about their residents but are human. It really becomes an issue of time. In a nursing home each attendant has 16 to19 patients a day to bathe, dress and feed. The private-pay locations are more vigilant than the Medicaid nursing homes BUT they also have more employees and better paid employees. I do my best to be “understanding” but, at the end of the day, it’s my Mother and Father and no one messes with them!
NOTHING prepares you for your parents aging. Our company can assist with the financial scams and pitfalls but you’re the one who has to watch Mom, Dad, Grandma or Grandad age and weaken. It’s heart wrenching! I write this column as a daughter who has a demented mother (87) and a weakened , non-driving father (93).
Mother is in a nursing home. This nursing home has an excellent reputation and a low employee turn over rate but it’s still one of those places where the halls are filled with moaning people in wheelchairs or portable beds.
This home charges close to $7000.00 a month but accepts medicaid. This means we had to impoverish Mom. By “impoverish” I mean I had to do the paperwork to make her medicaid eligible. We now pay a little over $700.00 a month. I do not have the words to detail the pain . . .humiliation that I felt in using my legal education to make my mother poor enough so she could live with other poor people in her old age. This is not what she wanted nor is it what we wanted. However, Dad is lucid, Mother is not — we couldn’t afford both and neither could they.
Each time I visit Mom I cut her nails, take off the old nail polish, pay for a weekly hairdresser. rub Lubriderm on her skin and place vaseline on her lips. It kills me to leave her although I know in five minutes she won’t remember I was there.. But, there is a silver lining, Mom and I were oil and water as I grew up. We simply didn’t get along. Today however, it gives me great joy to minister unto her — to do little things that allow her to feel special and loved. She always has tears in her eyes when I say goodby and so do I BUT (and this is important) I know when she dies I’ll have done all I can. For that I’m grateful.
I am a “Daddy’s Girl” so watching him weaken is difficult. On one hand I’m so grateful that he has a quality of life that allows him to live alone in an assisted living facility but I still have to cut his nails, hire a barber, and cajole him to use his walker. I accompany him to the 3:30pm weekly Happy Hour when I’m in town but I see his failure to thrive. Who can blame him? He lives in place with lots of old people all of whom are simply trying to get through the day. I know Dad is ready to leave us — I don’t want him to but I know he’s tired of growing old.
And let me end this column by stating that as hard as it has been for me I am once removed. My father chose to live in Atlanta where my brother and his family reside and Matt has had to deal with the day to day. Matt is more stoic but he’s also the baby of the family — and this is a true role reversal for him. He does a phenomenal job and I’m grateful.
To make it a bit more personal I’ve added a photo of Mom and Dad before dementia took hold and we had to take over.
Long Term Care Insurance (LTC) is, without a doubt, the most complicated to collect. This is intentional — they do not want to give up any of the money you have been paying them for the past 20 or 30 years.
First, the company hopes you die before you collect. Often the children don’t know their parents have the policy and find it in their belongings after death. The other big mistake is that the seniors or their children call the company assuming there will be assistance . The companies have a name for this group: customer service (an oxymoron). No one in customer service has your best interests at heart. Every person you deal with will give you a different answer and, remember, this is after 45 minutes (minimum) of holding.
Here’s how it works, the parent must have lost 2 of the 7 Adult Daily Living (ADL) activities (place a link listing ADLs). 2 that are common are loss of balance and incontinence. At this point, you call, state you’re unable to perform 2 ADLs and the company will open a claim. Next you have to prove your claim which means that a “nice person” (NOT) from the insurance company comes to ask you questions and asses whether you “really need” LTC. If you’re denied there is an appeal process and it’s cumbersome. If you are approved there is a 90 to 100 day waiting period in which the family has to pay for the treatment. The insurance company will never reimburse you for this and it is not cheap.
You’ve now done the “waiting” period . . . in so doing you have wasted hours finding a care provider, documenting the care and overseeing who they sent. Now, it’s time to collect! Well, LTC doesn’t’ pay until after the treatment is rendered — so the waiting period is actually 130 days (131 if it’s the wrong month). Then there are all the reasons they cannot send you the payment and, no, they don’t accept emails, only regular mail or fax. Every phone call is sent to Bangladesh or the Philippines where the English is difficult to understand and on and on and on. The most appalling part is when they quit paying without notice because they miscounted the days or money or . . . does it matter??? Our company has collected monies for our clients from these insurance companies because of this error — in one case $15,000.
Bottom line – LTC is a must but like every insurance company it must be monitored! These companies do not care about old people or sick people, they care about the bottom line.
And now . . . onto emergency rooms and hospitals.