Who cares for the caregivers? | Toine Heijmans | TEDxAmsterdam

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

Heartbreaking & relatable.

Nobody

I actually think they should be put down when they get that

Caring for a father or mother is hard. Just imagine care for your son since your 20s all alone

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

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.

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

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.

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 😢

Who cares for the caregiver? Nobody

💯💯💯💯💯💯💯❤️❤️❤️

Who cares for the caregivers?

NOBODY.

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.

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.

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

Thank you.
I am a boatman on the river Styx. My fear is living, for my death will be sweet relief.

Thank you.
I am a boatman on the river Styx. My fear is living, for my death will be sweet relief.

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.

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.

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

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nobody cares for we caretakers, very unappreciated

Thank you for sharing your story.
My husband has dementia.
Your description of the experience resonated with me greatly.

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

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

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.

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 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.

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.

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.

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.

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

Been a fulltime caregiver alone for my mom who is now 101 for 12 years. The past four years she quit walking. Is confined to bed. I have no family and no friends. No one, even christians, do not want to be called on to help, even in an emergency. Been isolated totally for most of this time. Have not been out in a store shopping since March, 2020. It is now September 2024. I say all of this to let you know MY TRUTH. JESUS IS THERE ALL THE TIME. HIS IS THE LOVE THAT NEVER LETS ME GO. I may cry a lot, get angry and yell at times, but He always always forgives, because He always always understands, a whole lot more than I do. I can not imagine anyone even attempting to be a caregiver without God, The Father, Son, Holy Spirit. Especially when all, all have abandoned you; family, friends, so called christians. All I can do is take one moment at a time, praising, singing, when I am free, studying His Word, and sometimes simply bringing to my remembrance, ALL HE IS. HE IS GOOD, KIND, FULL OF MERCY AND LOVE, AND HE IS ALWAYS SO FAITHFUL. So for anyone out there facing what I face daily, run run run to the One True Living God. Live as much as possible in His Word, and praise praise praise with thanksgiving daily. And remember, we have a tremendously powerfully wonderful future with Him in His Kingdom. DON'T GIVE UP. The reward is beyond imagining.

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.

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!

No one does and when the person they are caring for dies society still doesn't care about the carer

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

I’m 18 and I’ve been my moms primary caregivers for nearly 4 years she has an aggressive form of dementia called front temporal dementia. She needs constant 24 hour care and can’t really do anything by herself. it’s horrifying having to watch her suffer constantly.

My husband has had kidney cancer for 6 years. The last two he has been in imunotherapy. He has a lot of side effects. With new meds for each new thing, including prednisone. He has become angry. He says very hurtful things. He is 70, I am almost 68. It is a thankless job. He has become so mean that he is distroying my love for him. We have been married 45 years. Together since 1973. I feel like running away.