Who cares for the caregivers? | Toine Heijmans | TEDxAmsterdam

[singularity]

I have been a caregiver for my parents for 15 years. 8 for my mom with cancer and dementia before her passing. My father demanded I care for him the same as mom at the same time. While I was working full time before that became impossible. After 15 years being the ONLY caregiver my body, my mind, my future, basically my life is irreparably shattered. There is no real help for those of us who through fate have narcissistic entitled family members who want no responsibility in caring for the infirm but strangely still expect an inheritance as their "birthright".
Caregivers do this out of love. We do this out of compassion. Some out of a sense of obligation and others because our God says it is something we should ALL do.
There are many reasons why one becomes a caregiver, there are tens times more excuses people give for not doing so.

Statistics tell us that one third of caregivers die before the caree. Usually penniless and alone. Sure there are stories of caregivers who were not caregiving but instead exploiting the vulnerable. But those are not the vast majority of family caregivers. Caregiving as a whole alienates you from society and while society saves a great deal of money and resources because of the caregivers sacrifice society is rarely willing to even acknowledge their existence let alone support them in their efforts.

[debby]

So very sorry💔. I have been my moms “caregiver” for 5+ years, alone, 24/7 without a single day off. I’m physically, mentally and emotionally exhausted and also hate the word caregiver. Thank you for understanding and sharing your story. There is almost zero support for those of us on this journey. We lose our identity, who we are and living our lives. It’s such a long, cruel heartbreaking disease 😢

[hailmichigan]

I am almost 35 and have given up ten years of my life post military to take care of my grandmother. The more and more you seem to dive into their needs, appointments, schedules, the more seem to lose any sense of your wants and needs mattering.
Not sure why I wrote this but all I can say is from personal experience do not neglect own mental health. Coordinate time for yourself because they do not mean to be selfish with your time but that is how it plays out if you allow it.

[rick-rykj]

I took care of my father with his Parkinson's and developing dementia in his last years of his life, and let me tell you it was emotionally and phisically draining. I grieve his absence tremendously because he was my best friend. Love you dad, you are at peace now.

[marrianner.]

"Forced Labor" !!! That is the real definition of caregiver. No one does this by choice, and it can be cruel labor!

[judy]

I think there should be more help for the caregiver especially if they have to stop working because of this.

[Nothanks]

As a 24/7 caregiver I absolutely can not look at it any other way than serving a greater good. I look for everything positive, sometimes the search is difficult but….
If I pay too much attention to the struggles of caregiving I am overcome.

[evertonporter]

Carer's guilt is the worst. You either feel you are doing too much...or you feel you are not doing enough.

[FrankUnknown]

Who cares for the caregivers?

NOBODY.

[patriciamartin]

Surprisingly, the man I am with as A PTSD and panic attack survivor, is the very one that takes care of me when I get a panic attack or when I get burnt out. Three days ago, I felt I was stressed enough where I couldn-t take care of him anymore. I had been in the house with him for a month, cooking, cleaning, laundry, acting as his crisis line. I told him that my own panic attacks were escalating. I told him that I needed time away. With many misgivings, I went out. I felt refreshed after shopping and lunch out. I texted and asked him, was he alright. I got no response and rushed home, fearing the worst. I was pleasantly surprised. During my abscense, he had used the time to shop for food, clean the house better than me and had bought me several presents and food I really liked and even lit candles. I could hardly believe this was possible from a man that self isolates himself in the house everyday and wants nothing more than to be left alone. Maybe caregivers need to let the person they are caring for know how they feel when they are burned out

[Lift]

I am going through with now with my father. Me and my mother are struggling so much, it’s like being in the sea and constant waves coming and pushing you down. You’re struggling, tired and feel like giving up, you just have to make sure after every wave you get back to the surface. This video is so accurate, I feel so tired I mind and body, I don’t think I will ever recover from the trauma it brings

[gracecatz]

I'm taking care of my husband who has dementia and cant get around without my help. I'm not well myself. I dont want to live but I dont want to die either. My son helps me when he can and he has home health but that will stop before too long because of his insurance. Me and my kitty cats are here alone caring for this very difficult man. If not for the cats and my son I wouldn't be his carer

[penniewyatt]

Waste of time. Care about caregivers. Yet no one really does. Caregivers have their darkest moments when no one is available for even a phone call.

[AnonEtal-]

I have two daughters, @LuMaeInRealLife, who have an extremely rare generic terminal illness we've been caring for for the past 9 years. Things have started getting harder. Your video helped me feel seen. I'm sorry for the price you've paid to learn such valuable insights for the rest of us.

[shaylagoogle]

I see this all the time at work and I'm glad to help ppl out. If it's listening or giving advice on self care or a hug if someone needs it. Good Ted talk I think more ppl should listen.

[oscardaone]

My mother currently has dementia. I love her, but now I feel more tired than ever.😞

[ngonigriffith]

I am 51. I was a caregiver for my dad for 8 years until he passed away in January 2023. I took care of my sister for a month until she passed away in December 2023. I now take care of my mom who is 86 and my nephew who is 36 and disabled. I try to provide for them spiritually, mentally, physically, and emotionally. I thank God that for the most part they can take care of themselves like doing their own laundry, but I help with cleaning, cooking, transportation, medication management, health and fitness, socialization, and finances. I try to take time out for myself like going on nature walks, going to the gym, getting massages, manicure/pedicure, eating out every now and then. If I don't do those things, I would get burned out pretty fast.

[redjaystories]

I am honestly starting to get worried that due to the abnormal amount of stress, I at the age of 30 will go before my mom. My entire life is in hospitals, pharmacies, or dealing with her. To top it off, when my dad was alive he was completely wheelchair-bound, had two legs amputated, couldn't speak, couldn't move his right arm or hand, etc... And now I am dealing with my mom. She survived having a pulmonary embolism, and her organs shut down to the point that she was on life support, heart attacks, and she recently survived complete anemia, where she had to stay at the hospital and receive blood. May God forgive me, I love her the most in the world, but her will to live is stronger than mine.

[KrazyKats]

No one
Haven't been ever to move forward since my Parents died. Got what I need to get done.then there was another major loss. Feeling stuck. Trapped inside myself. Also have MS. Am so exhausted. Loss is almost 3 years and second one is 21 mos. No one needs me any more

[cheezehead]

I designated myself as my wife’s caregiver through her cancer treatment. I can relate to a lot of these comments. This is a tough and thankless job. I have never felt more mentally drained in my life. I wish there were more resources for caregivers. Heck I wish family was more responsive to needs. They don’t even have a clue! And it’s only been 3 months!