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**WARNING. This blog contains real life stories that deal with abuse, death, and strong language. We at Aging Well Partners have a commitment to share real people and real-life stories to better serve our aging population and educate them on how to age well. We can only learn when we know the truth of what’s happening. Below depicts a limited segment of the aging population, but regardless of the amount, even one incident is enough to raise the alarm on change. The names and identifying details have been changed to protect the real people in these difficult situations. By sharing their stories, we can help other families in the future know they are not alone. We are all in this aging journey together. Age Well.

HOME FOR THE HOLIDAYS
We’re getting ready to go into the holidays with Thanksgiving next week, and my phone will ring off the hook with abandon. Family will see their aging adults for the first time in perhaps months or even years and they are hit with the realization that all is not well on the home front. As one colleague stated this week: “everyone is going to go home and see how f**ked-up the situation is.” No words were ever so true.

The focus is usually on the aging adult who is experiencing cognitive or physical decline. That of course is important, but I’d like to spotlight the emotional and physical devastation of the family caregiver that is being forgotten. We hear the phrase “caregiver burnout” a lot, but it’s much bigger than your mom needing a few hours away from taking care of you dad.
As adult children we often don’t recognize the need to make a transition from passive child to adult child who must take a leading role to support or make critical decisions on behalf of a parent, who is the caregiver and can no longer navigate this path alone. The parent caregiver can be the most criticized participant in the aging process, specifically when there is steep cognitive decline in the other parent.

SIDEWAYS
Everyone has an opinion on what family caregivers are doing wrong or should be doing differently for dad or mom as their dementia is progressing. What’s really happening is that we’re all scared and freaked out that our parent has changed and is slowly dying…and dying a most difficult death. Our rockstar parent that we’ve known our whole life has disappeared and no one knows what to do.
I’ve had the most educated and successful people call me in absolute tears because they can’t control the situation with their parent(s) no matter what they’ve tried. They are in uncharted territory with no map. It’s this emotional assault that causes the most damage. It’s difficult to know when, as an adult child, to step in for the parent caregiver, or when it’s time to take a very uncomfortable stand on their behalf.


FAMILY TIES
There is no doubt we value the family caregiver in our society, but I challenge whether we understand the full spectrum of the caregiver’s needs. They are already innately givers. They are devoted to their family and willing to sacrifice their time and physical and emotional health to care for their spouse or partner. Family caregivers often shield adult children from what’s really going on to spare them the burden. It’s even worse when two parents are in jeopardy, and together they team up to hide the real circumstances of their disastrous daily living situation.

In my opinion, the rights of family caregivers are vastly forgotten. The person who has the disease is highly protected, as they should be, but our family caregivers need protection as well. To date, my experience has been that the courts have not protected the family caregiver well, especially the senior caregiver. The focus is entirely preserving the rights of the person with the disease, without regard to the safety both physically and emotionally of the family caregiver; and this has resulted in devastating outcomes.

ENOUGH
I received a call from an adult child (“Lana”). Lana’s stepmom, “Jennifer,” has had mental illness most of her adult life and two years ago a diagnosis of Frontotemporal Lope Dementia (FLD). Lana and her dad (“Tom”) have struggled with getting her care as she is not medication compliant, in denial and rejects any type of help. Bipolar left untreated combined with her particular type of FLD is an explosive recipe.
Tom, her family caregiver, has taken the brunt of her abuse, especially since the FLD symptoms escalated years ago. She was 5150 (In California this is a 72-hour psychiatric hospitalization hold) after she pulled a weapon on Tom one night. To everyone’s relief she was finally in a geriatric psychiatry hospital where she could get the proper help needed. Unfortunately, she was released within days, and deemed ok to go home on her own without treatment. The why is not for this blog, but understanding how often this happens, is what’s important today. This was devastating to Tom, who had been enduring the emotional stress and physical abuse from his wife for many years. The courts had failed him, the doctors had failed him, adult protective service who had been engaged had failed him…everyone he’d reached out to in the system had failed him.

Sadly, Tom’s story is not unique. Suzanne is a prisoner of her own home because her very strong husband has FLD and has become paranoid and violent if she upsets him. Laura’s sweet husband with dementia started to push and shove her. Eloise has been fighting in court for over a year to keep her abusive husband in secure memory care. They have worked through the proper channels and gone up the medical and legal chain to get help, and too often nothing changes their situation. They are left emotionally tormented with no end in sight.

HELP
Why don’t family caregivers tell their spouse’s doctors, get help from family, or do something? Many reasons keep the family caregiver from seeking help:

It’s hard for a doctor to see a behavioral problem in a 5–15-minute visit. Families report they hardly see a doctor once they are diagnosed with cognitive decline. It is not uncommon for families to say they haven’t seen their doctor in years. It is even more difficult to talk about your spouse’s abuse while they are in the same room.

The caregiver is embarrassed, especially if they are a male being abused by a female.

The caregiver feels hopeless, stupid, weak, alone.

Sometimes the caregiver doesn’t have the resources to make the change(s).

Caregivers don’t want to be judged. The number of times I’ve been told, “you must think I’m stupid for staying.” Heartbreaking statement. No, I think the system is stupid is my reply.

Caregivers think it’s going to get better, or they are just waiting for the right time to change the circumstances.

They’ve tried and places like adult protective services have done nothing.

Adult kids think mom/dad is overreacting or being selfish for not wanting to keep their parents at home. I hear this way too much. Placement into memory care is for the care and safety of not only the person with dementia, but for the caregiver they are abusing. Please remember this!

The caregiver is scared, tired, emotionally spent, physically sick.

They think things will get better or they can handle it on their own.

They have been in unequal and abusive relationships for a long time, and the cognitive decline has exacerbated it. They are stuck.

*All cognitive decline comes with the potential of massive personality change, and extreme behaviors. No families are exempt.

TIME’S UP
Tom’s daughter called me two months later to say her father had taken his own life….
I’ve thought of Tom every day since that call. Could I have done anything else? The answer is no. The family did everything they were supposed to, and the system failed Tom. Tragically, he couldn’t wait any longer for relief. Statistics say 30% of caregivers will die before the person they care for does; some report the number is closer to 70%. Regardless of the exact number, it’s just too high. The price is too high.

COMMITMENT TO CHANGE
If it wasn’t for Tom, I’d never would have had the courage to write this blog. Tom needed a bigger voice, and I intend to give him and all the other family caregivers out there the voice they need. So, this year when you sit down to Thanksgiving dinner, please pay extra attention to your family caregiver. Check that they are doing ok. Ask hard questions to get to the truth. Even better, spend 48-72 hours in the house to get a real idea of what it’s like to care for your loved one with cognitive decline; and don’t be afraid to take the reins and make some uncomfortable changes, if it’s apparent the family caregiver cannot. Push back and buck the system because your family caregiver’s life may be on the line. Age Well.

Jacqui Clark is a Certified Senior Advisor™ (CSA™) consultant with Living Coastal Senior Resources, and co-founder of Aging Well Partners. She is an industry leading living-and-aging well expert, and a respected communications specialist. She’s lived in San Diego for 35 years, much of that in Carlsbad where she and her husband live with their two daughters. Find Jacqui at www.agingwellpartners.com