Who cares for the caregivers? | Toine Heijmans | TEDxAmsterdam
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- Опубликовано: 18 сен 2024
- 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
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.
Excellently put, you have said it all.
So true! Unless you have been or in this position- NO ONE understands what it is like to provide care for our loved ones. It is lonely with no reward.
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?
I’m hitting the 5 year mark now, and I’m just so ready to choose myself bc I deserve to be happy
@@christianbond5269 I keep thinking the same thing now that it’s been almost 7 years. I haven’t had a single day to myself, never any friend time or time to do things that I miss and enjoy then the guilt sets in. I try to remind myself that if she has to go through this horrible disease, then I should be strong enough to go through it with her.
Who cares for the caregivers?
NOBODY.
Nobody cares. Only criticism and guilt.
If they are family members tell them to go f themselves aka my siblings @@DouradaBambina
@@DouradaBambina This. Only criticism and guilt. It's almost as if it's our fault that they are the way they are, if something is not right we are always blamed.
I think there should be more help for the caregiver especially if they have to stop working because of this.
Agree!
Yes, I quit my job to care for my Mom in Law. My husband did Not ask me to do it. It was the only option. It is FT hands on demanding work
Who cares for the caregiver? Nobody
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?
@@MikeDragonetti-w1tI think I would be helped by respite care, and more support from family and friends. I’m getting better about reaching out with my needs, “please take him out this weekend for brunch.” Knowing he will come back and nap. Also I recently found a new therapist who has personally been a caregiver to her mother, and I’m seeing her weekly. Instead of every 2-3 weeks. It won’t stop being hard, but saying “yes” to any offers of help, however burdensome it feels, is necessary to avoid catastrophic burnout.
My mother currently has dementia. I love her, but now I feel more tired than ever.😞
The guilt is real, I love my mom most in this world but I am so exhausted, sick and tired of anxiety that I developed caring for her. When she's okay I am okay, when she is not, I am not okay. I just turned 30 and I found myself having guilty thoughts of just wanting my own life.
"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.
That's true...
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
Heartbreaking & relatable.
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.
🙏
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 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.
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 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.
You mentioned in your comment that you are not sure why you wrote it, but I want to thank you for putting into words what I am going through right now.
I have cared for my mother with dementia (in home) for 8 years now and her needs have consumed my life. I have a husband and minor children in the home as well that I care for so you can imagine the tole this has taken on me. I recently had a breakdown (2nd in the 8years) and have made the decision to try and have her placed in a facility. I have reached exhaustion and hopelessness, while trying to put on an ok face for everyone around me. It is not their fault so I don’t want to dump everything on them. I have a supportive spouse and sibling, but the needs of someone with dementia are all consuming. I feel guilt about the decision, but if I don’t do it I feel I will not only lose myself emotionally but also become physically ill.
Your comment really articulated what is like to be a caregiver and to have to also prioritize yourself before you fade away. I love how you mentioned that they (the one receiving the care) don’t mean to be so selfish but they can’t help but to be. Great insights!
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.
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
Excellent presentation of the situation caregivers of all types find themselves. Wish there was a Part 2: What can be done to help caregivers.
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.
Those of us who provide care are invisible. We provide 24/7 oversight alone- we are the PT; OT; Nutritionist; RN; Nurses Aid; Therapist; Housekeeper; Cook and Secretary, we assume all these rolls on no sleep and constant stress.
You were lucky to be in a 'we' with your mother and sister. I do not say this to make light of what you went through, as I know firsthand the deeply lonely, frightening and exhausting state that is all too often the nature of caregiving.
Many caregivers/carers are forced to go it alone because other family members are simply derelict in their duty. They give all manner of excuses; family commitments, work etc etc, as if the one who sticks around does not have a life too, that they are seeing turned upside down.
Or they do not give any excuses at all and simply absent themselves from any responsibilities. Leaving the one who cares to struggle on alone.
Of course all of these narcissistic family members often reappear when the ailing relative dies and there is an estate to be had. They are not too busy then, and of course never too busy to present themselves as grieving relatives, crocodile tears and all.
The only benefit to this shocking, lonely, heart breaking experience of family abandonment in the trenches is that if one is still young enough one has the time to make plans for old age and/or sickness knowing full well they will be going it alone. There are no delusions of familial support.
The American Alzheimer’s association has monthly caregiver support meetings in most towns and cities. For any dementia diagnosis. I joined a new group that only might have one or two other people. I am always glad I went. The information shared is worth it. It just started up in my town a few months ago. They have free on line seminars that anyone can watch about caregiving and planning for loved ones end of life needs and care.
nobody cares for we caretakers, very unappreciated
Nobody
we have to care for each other. Nobody else knows what it's like.
Cares... I know
And then there are caregivers who are giving care for many years because of non terminal issues- that is a very very very long haul
Thank you.
I am a boatman on the river Styx. My fear is living, for my death will be sweet relief.
@9:41 "lets do some meth!" 😂
💯💯💯💯💯💯💯❤️❤️❤️
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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.