Bruce Willis' frontotemporal dementia diagnosis reveals an uncomfortable truth

[babylonsister]

Opinion
Bruce Willis' frontotemporal dementia diagnosis reveals an uncomfortable truth
Americans would prefer to not think about what happens if our minds and bodies start to decline. Caregivers don’t have that luxury.
Feb. 26, 2023, 6:00 AM EST
By Linda Phillips, the director of research and innovation at the Arizona Center on Aging and Mindy J. Fain, co-director of the University of Arizona Center on Aging

snip//

Currently, more than 6.2 million individuals in the U.S. live with some form of dementia. These millions of Americans will all, slowly and over time, become progressively unable to perform even the simplest of tasks on their own. They will all eventually require care from others.

In this country, more than 80% of individuals with dementia receive care at home, which is provided by the more than 26 million informal caregivers. Without a doubt, a diagnosis of dementia is devastating for the individual, but we cannot lose sight of the profound and complex ways in which it touches the lives of those expected to provide care.

Caregivers are confronted with the difficulties of learning how to give care to a loved one, which entails managing symptoms, navigating the complexities of the health care system, finding resources and taking care of themselves too. Some might think the easy answer is to hire in-home assistance. But while some families — like Willis’ — are resource-blessed, the vast majority are not.

And dementia does not discriminate.

For those lacking adequate resources, the challenges of providing care are magnified and compounded by stress, difficult physical labor, out-of-pocket expenses, loneliness and worry. It is no wonder that caregiving, although rewarding in many ways, threatens caregivers’ physical, emotional, mental and financial health.

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https://www.msnbc.com/opinion/msnbc-opinion/bruce-willis-frontotemporal-dementia-diagnosis-aphasia-reveals-hard-tr-rcna72286

[Trueblue Texan]

1. Dementia is the most frightening condition I can imagine

And it's the caregivers and families that suffer the most. Without exception, caregivers of dementia patients are completely exhausted, holding nightly watch for their loved one wandering, preventing falls, even escapes from the home into the dark night. Then caregivers have to face day after day without restful sleep. Even when they get a break they are unable to relax due to anxiety about leaving their loved ones in inexperienced hands.

The scariest part for our nation is that the numbers are already staggering and escalating. Most people aren't even given a diagnosis until stage 4, the time when you've pretty much lost the ability to make good decisions and cannot live alone anymore.

It's never been more important to have an advanced directive and to set money aside to help your family carry out your wishes. If I ever get dementia, I do not want to hang around this world to be a burden to anyone. Dementia requires at least a ten-fold level of care and attention from caregivers. Caregivers basically lose their life to care for their loved ones and I do not want to put anyone through that.

[erronis]

2. Well said, Trueblue.

That's my hope also - when it's time I can remove my burden. But I fear it's hard to do, especially as our brain and our wills diminish.

[niyad]

3. Excellently said, True. There was an article posted here on DU recently about

the health consequences to caregivers. It was devastating. It, and you, addressed the stress and worry. That creates a form of PTSD, the need for hypervigilance, constantly being on the alert, never being able to relax one's guard. I spent many years doing memory care, thankful that I was quite comfortable with my already existing hypervigilance.

My friends know what to do if I ever get to that point.

[panader0]

4. My dad and brother both suffered from dementia. It was not easy to watch them fade away.

They both ended up in facilities, shuffling down halls, doped up like zombies to calm them.
My brother used to beg me to help him escape. There was no way I could take care of him.
I believe (hope) that I take after my mother's side of the family, all sharp witted until the end.
I try to monitor myself to see if I'm still with it. So far, so good. But if I ever get the diagnosis
I'll be checking out. Suicide is far more desireable than dementia. A person with dementia needs
constant supervision, and most places don't really give it to you. My brother had VA care, and the
halls of his locked up place reeked of bodily waste and the patients are blank faced.
I just need a few more years of clarity to straighten up my affairs and I'm good to go.

[exboyfil]

6. I agree with you

I am going out before I become a burden to my wife or children. 3 of 4 grandparents had dementia or delusional disorder (4th died pretty young).

[MontanaMama]

12. All of this!

My dad and grandad died of complications related to Alzheimer’s. It’s brutal for all concerned. It is my worst fear that I will also get dementia. I don’t want my husband and son to have to go through what I went through with my dad. The cost of care is unaffordable.

[AmBlue]

14. I was my mother's caregiver for 5 years

....and it was devastating to her, yes, but also extremely devastating to me and my family as we saw her decline right here, every day, as the center-piece of our home life. She had little awareness in the last year of her life, often having no clue who I (or anyone else) was. We did our best to make her last time on this Earth comfortable and loving, but it was a constant struggle as daily she lost the ability to do the daily tasks of living. I am so fortunate to have such a loving, supportive husband and grown (college age) children. I can imagine many marriages and families strained to breaking under this kind of stress.

So I have decided I never want to do this to my family. If I am ever diagnosed with this awful disease, I want the choice to check out early. There are ten states where physician assisted suicide is legal. This will be my choice. Google it if you are interested. It's sad that this is where we are in this country, but it's wrong that children and other family members have to give up their lives to care for a loved one 24/7 whose quality of life is long gone and there is literally NOTHING you can do to make it better for them, while it tears your own life apart.

Another major issue is that there is almost nothing available in the way of REAL support for family members taking on this gargantuan responsibility. Respite care is extremely difficult to find, and the cost of in-home care is staggering. Memory care facilities (by and large) do not give adequate care, but also charge exorbitant rates. Family members still end up at the facility often daily to monitor and supervise care. It's just an awful situation all the way around.

[leighbythesea2]

22. Yes and yes

Pretty much same feelings. I’m at 6.5 years of taking care of my mom. It runs on the maternal side. No way I’m going out like this, if I have the bad fortune of getting it.

[AmBlue]

23. My sincere sympathies to you.

It's just the hardest thing. I'm so sorry it's fallen on you. Hang in there.

[leighbythesea2]

24. Thank you

We are hanging in there!

[exboyfil]

5. I admire my mom (78)

She is fighting COPD and other health issues, but she does a lot to keep her mind active (which studies say helps with retaining cognition). Word puzzles, different types of computer games, and she plays cards (even learning new card games to play with the other residents in her elder apartment). She also mostly stopped the drinking.

Both my grandparents on my dad's side had dementia (they were also heavy drinkers all their lives - not sure if that contributed to it). My dad died young from cancer (65 and I am almost 60). My grandpa on my mom's side also died young from cardiovascular disease (early 70s). My grandma made it to 94 and her body gave out. She didn't have dementia per se, but she definitely had psychological issues including paranoia and delusional disorder.

My wife's parents are doing very well in their 80s. They play lots of games and have a very active social life. My FIL even continues his writing and publishing (he is a math educator).

[area51]

7. This country needs to get serious about healthcare, including long term care.

Healthcare is not a luxury, it's a necessity.

[JCMach1]

8. My father died with dementia in August. His last six months he spent near me

Along with my mom who was the main caretaker. It was horrific watching the strongest man I ever know slowly fall apart. This was especially hard on my mom as my dad was.one of those patients who lost impulse control and would become violent frequently.

What tore at me the most was his daily struggle to hold onto himself. He managed to do this until the very end and passed away with family around in hospice care.

[Ferrets are Cool]

9. "For those lacking adequate resources"

MOST of America is ill equipped to handle dementia. And the for profit health care system doesn't care.

[MontanaMama]

16. Indeed. The vast majority of Americans

will not be able to pay for care for a patient with dementia. It’s many thousands of dollars a month and conventional health insurance doesn’t cover it. Long term care insurance will cover it but it is also unaffordable if not purchased when you’re young. The cheapest care facility in my town is $7000 per month just to get moved in. The cost increases as the need for care increases.

[Ferrets are Cool]

19. Sadly, this is true.

[Omaha Steve]

10. I have FTD just like Bruce

I'm doing OK for now. I've had it for several years.

OS

[bpj62]

11. Picks Disease

My mother was formally diagnosed with Picks Disease which is a frontolobal form of Dementia. She had been showing signs of cognitive issues and decline for about 3 years before the formal diagnosis in 2014. It is a ugly but fortunately a quick Disease from onset to death.
With that said the stress that it put on me and my sister who were her main caregivers was enormous. I was also dealing with a marriage that was having troubles at the same time and I was completely unaware of the stress until after my mom passed. We were fortunate that my mom had a good insurance plan as well as an excellent retirement fund and we were able to get her into assisted living. The care she needed was beyond our ability to provide and we felt guilty for having to put her in assisted living.
I can also say that we had some humorous times with her during her decline which made things easier for everyone.

A lifelong Democrat she had the last laugh as she was born during the FDR Presidency and she passed on January 20, 2017 at 7:23am. She sure as hell was not going to hang around for TFG administration.

[flying_wahini]

13. I just started taking Lions mane mushrooms to help my brains health.

I’ll let you know if it helps.

I helped take care of both my in laws before they passed. 5 years. It was pretty awful.
I’m trying to avoid it anyway that I can to spare my kids the pain.

[MLAA]

15. I care for my husband. The great news is that it really hasn't effected his personality. He is

still sweet and funny. He can’t live alone, so I no longer take trips with girlfriends and he and I no longer travel. It deteriorated to this point a couple of years ago and seems to have stabilized to some degree. I do feel comfortable leaving him alone for a couple of hours in the afternoon to run errands or have lunch with a friend. His short term memory is very limited. For me one of the toughest parts is being alone in all decision making and worrying about what if something happened to me.

[MontanaMama]

17. That's a huge burden.

I’m sorry you’re dealing with this. It is so hard.

[MLAA]

18. Thanks for the kind words. I think it is easier for me than some. He is my favorite person on

earth and has been for many years so I have a level of patience with him that I don’t have for anyone else. I can’t imagine how much harder it would be to be a caretaker for someone that you didn’t feel that strongly about and cared for them more from duty than deep love or someone whose personality had fundamentally changed. I dream of a cure so that future generations don’t suffer this way.

[PlutosHeart]

20. You and I are in the same boat.

I also worry for myself. We have no family and I basically have no friends here in this red area.
Difficult as is am trying to figure out how to sell off things and have us move to a smaller more financially stable house as I have also have pets I worry about.Hoping my husband's long term care insurance will cover if he needs to be admitted.
His personality has changed sadly.

[MLAA]

21. It seems very wise to downsize to something more manageable with everything else on your plate.

I do have a sister in my town, but sadly she has serious neuropathy requiring a walker as well as other challenges (rehab, back surgery) so I’ve needed to care for her though those difficulties. I don’t feel close to her emotionally so no support there. But she can provide a little physical support if I ever would need her to drive us somewhere or sit with him for a few hours.