Who cares for the caregivers? | Toine Heijmans | TEDxAmsterdam
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- เผยแพร่เมื่อ 11 พ.ย. 2019
- Alzeimers is different for everybody. No one knows what will haven for any person. They were told his father could change quickly or slowly. ‘This talk is not about him; it’s not about my mellow dad that turned into an angry man. It’s not about my stubborn dad who wanted to be the director of his own life. This talk is about my mother, my brother and myself. When my dad was diagnosed, we were diagnosed too.’ For Heijmans and his family, the doctors couldn’t answer many of their questions. ‘What will happen, when will things start to change?‘ They didn’t know. It depends on the person. Toine tells us about how he and his family acted as caregivers and warns us that that anti alzheimer's yoghurt drinks definitely do not help, contrary to what doctors recommend. Heijmens explains how he grew to hate the word caregiver. It is not a friendly and light hearted term like it sounds. But it is instead cruel, hard work and horrible. Caregiving is not easy. Sadly, it is not always like ‘care’ it is more like labour. No one can prepare caregivers for what’s in store. But what can be told is the certainty of the situation; stress, death, preparations and needing to stick together. Take care of the caregivers too. Toine Heijmans, the multi award winning columnist, editor and novelist who’s made a credible stamp with his input writing for Volkskrant will take the stage at this year’s TedxAmsterdam. A writer who’s work is heavily infused by the experience he’s gained from writing and reporting in different sectors and mediums. From weekly columns to television scripts and travel journalism to news reporting. Heijmans allegiance lies writing around the topics of immigrants and those seeking asylum. He is also the first Dutch writer to win the French Priks Medicis Etranger Prize for his book Op Zee. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
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Who cares for the caregivers?
NOBODY.
Nobody cares. Only criticism and guilt.
Who cares for the caregiver? Nobody
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.
Exactly. Everyone says, "Thank you for all you do" but they wont put any skin in the game, nor do they fight for legislation that will acknowledge and support caregivers in our society.
Indeed.
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 😢
Me too!
Do you have any ideas on what would help?
"Forced Labor" !!! That is the real definition of caregiver. No one does this by choice, and it can be cruel labor!
@marrianner.1682
Thank you for putting it that way. You are right. It’s something that just falls into a persons lap and before you know it you’re buried in it. I spent my 20s taking care of my mom who had Alzheimer’s young. I didn’t have the chance to get on my feet. My dad was not a very nurturing man and worked long hours. I couldn’t just leave her to him and none of us could have bared to leave her in a nursing home even if we could have afforded that. In between a rock and a hard place is where the caregiver is wedged.
Yes that is right. And also forced imprisonment as well when you feel you can never leave the home.
@douglaswilkey488
Yeah, I was so thin an fit in high school. I put on so much weight looking after my mom. I was no longer able to have my exercise routine. I’ve only just now begun in the last several months start exercising and sliming down again. It’s an illness that takes so much from everybody. As you know.
I think there should be more help for the caregiver especially if they have to stop working because of this.
Agree!
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.
🤧I'll be going through the same road with my father who's pushing 80 who's mentally and physically declining with arthritis and moderate stage of dementia periodically verbalizes off the wall bizarre stuff against me. He just sleeps,smokes pot and buys and collects junk from Thrift Stores that he doesn't even need or use.
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.
@penniewyatt9391
It’s one of the hardest tests a person can be given and I’m so resentful of it.
Yes, it is a thankless task that we will never be paid. Sadly, we don't even get thanked for the sacrifice. Most of the time we are belittled. I often wonder what I did to deserve this. And to top it off, the fact that nobody cares for the caregiver is gut wrenching.
I know this feeling caring for my daughter. What do you think would help?
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
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.
You’re not a martyr
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
Please know that you are not alone; including the feelings you describe. I, My sister and 82 yr old mom are struggling to accept and care for my 82 yr old father. On top of seeing loved ones this way the care and daily demands are tiring and depressing. You don't want to live or die. It's just this existence. We need to promise ourselves and each other that we will get through this.
🙏
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
Thank you for sharing your story.
My husband has dementia.
Your description of the experience resonated with me greatly.
There is not only a lack of supportive services for the caregivers but also a reluctance of Dr's to even talk abt it.
I've found no help from Dr's.
I have found connection in online groups and I listen to webinars to educate myself.
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.
Heartbreaking & relatable.
Caring for a father or mother is hard. Just imagine care for your son since your 20s all alone
No need for competition
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.
My mother currently has dementia. I love her, but now I feel more tired than ever.😞
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
Those are tough cards for anyone to be dealt. If being a caregiver to my daughters shown me anything, it's that we all need eachother. Your comment alone may be helpful to others. I know it was for me
Thank you.
I am a boatman on the river Styx. My fear is living, for my death will be sweet relief.
💯💯💯💯💯💯💯❤️❤️❤️
Nobody
we have to care for each other. Nobody else knows what it's like.
Cares... I know
@9:41 "lets do some meth!" 😂
nobody cares for we caretakers, very unappreciated
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I actually think they should be put down when they get that
At what point?
I am in favour of voluntary euthanasia when it’s personal choice but people should never be purposefully killed by others.
I am a caregiver in a dementia care home and in the early to mid stages of their journey they have a perfectly decent quality of life. You mustn’t be too quick to write people off.
@@joosiej85 Yeah But when it gets to a certain point it is very difficult Some become psychotic My friends father corned him in the kitchen with a knife
Thank you.
I am a boatman on the river Styx. My fear is living, for my death will be sweet relief.