Caring for the caregivers | Frances Lewis | TEDxSnoIsleLibraries
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- Опубликовано: 11 янв 2016
- This talk was given at a local TEDxSnoIsleLibraries event and produced independently of the TED Conferences. Frances Lewis, university professor and researcher shares tips on caring for those who routinely give care at home or professionally.
Although Fran’s work is based in compassion and the desire to make things easier for people with chronic, life-threatening illness, she is known as a methodical scientist who thoroughly tests interventions that might be useful. The University of Washington professor of nursing has developed ways to measure how family members manage the impact of cancer on their everyday lives.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx
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I've been a caregiver to three family members within the span of 27 years. Im now taking care of my husband who has stage 4 cancer. After nineteen months of care, today I've made the decision to place him in respite care for five days. I'm grateful for videos like this one that focus on caregivers. We need the support, understanding and compassion that we so freely and selflessly to give those we care for.
Caregivers need love and support.
Anger, resentment, and frustration are conditions of caregiving. It doesn't mean we don't love those to whom we provide care; we have to recognize that these emotions are perfectly normal. Dedicating time to ourselves helps mitigate these feelings.
This comment was right at the top as I begin to watch this video. I have been a full time caregiver for my aunt for almost two years now. Your comment is on point. I need to remember to take better care of myself.
@@AF-ke9by Remember to do so. I, myself, take care of my mother (colostomate who won't get out of bed) and my father (mostly cooking for him). I was told to get out more and spend time away from the house. I think that piece of advice is useful to all caregivers.
30 yrs old and took care of both my grandparents alone until they both passed last year. Dad has had ALZ 5 years. I gave up opportunities and relationships. I loved them dearly and do not regret it, but i feel very lost and lonely. Lost all my friends in the process. I feel old.
I understand
Hugs
hang in there chelle ..i took care of my mom for 4 years and 9 months and that's only a short time compared to what you have already done. i am assuming you have no access to VITAS? you feel old because you are a 30 year old/young woman with years of wisdom that your friends have no way of understanding unless they had been were you had been... i know there are support groups out there some were but you might have to dig for them....no one tells us that the very hardest part of being a care giver is saying good by to our loved one ..you be strong and try to surround your self with any one or anything that brings you joy. any friends relatives or even a dog can be a great friend.
You are storing up your treasures in Heaven! This is what life is all about. Most people never realize this. It’s about caring! In Heaven, it is pure love and caring for each other. You must remember to live one day at a time and find the small joys of each God-given day. These joys are all around...just notice them and be thankful that you have discovered true *Life....in that you gave of yourself ....you’ve found what really matters for all Eternity! God loves you so very much.
I too am the sole caregiver to both of my parents and my siblings have offered zero help and only criticism and legal attacks. It’s been earth shattering, lonely and at times very sad and depressing. However, what I said above is true. God is VERY real and everything you hear Jesus say when you read His words is GOD talking to you! See Matthew 6:25 (all of 6, really)for God’s total reassurance! God bless you!
How are you doing now Chelle?
While I believe this woman is sincere, "actually" being a long, long, term caregiver is a different experience than observing. A caregiver needs more than 15 minutes to himself or herself and a lesson in listening.
I was my moms caregiver from the age of 12 - 22. My mom had stage Four Melanoma Brain cancer off and on for 10 years. It spread to multiple places in her body through the years. She passed away in October 2020. This has been very difficult for me. I have a lot of guilt, sadness, and anger. My mom worked full time sometimes two jobs while having cancer. She is the strongest badass person I have ever known. I miss her tremendously and just want to make her proud.
You are also a BadAss! Your Mom is so proud of you and her spirit lives on through you and with you.
Care givers die a slow and painful death. All the time waiting that someone will rescue them one day , but destiny kill them every second. It's really tough to get through this. I have been going through struggles, responsibilities, pressure all my life and ended up in care giver. My whole life has been stopped and I don't what how long I will carry on. I have lost all I had and I always want to do so much. Life is miserable.
My 55 year old husband who I have been married to for 33 yrs.had a major stroke in 2017 nd I brought him home because that just happen to be my line of work.Almost two years later I am at my wits end.I can handle the physical but the mental.OMG
Shelly, my husband had a Stroke in 2016. If you're on Facebook join me and other wives that are caring for our spouses in the Wives Helping Wives Support Group. Great support from other wives that are on the same journey.
Is there a group for husbands who are in the same position?
@@BailedOut2008 I lost my husband five yrs ago now. I don't remember making this statement. I can give you one very good piece of advice, or perhaps encourage you. Looking back a person who survives a major stroke will make it at the max two yrs bedridden. I was told that when I brought him home and it was true. You won't regret doing the right thing. I still mourn my husband and have decided I like being alone. There will be time for peace and rest later. You can live out your life no matter what you do knowing you did the right thing . God bless you for your journey. He's watching and knows your struggles. I used to tell my husband that if it were me in his place I'd be screwed 😆. He said that he couldn't do what I do but he would find someone who could. I pray that you have help in your life and God sends you help on the real hard day's. The difference in maybe men than women, my husband wanted me to treat him exactly the same with no pity. People with bad stroke damage do not realize that can't do as before. My husband couldn't walk and would curse me out for not going to get his hunting license. It's okay to get frustrated.
I am definitely an unpaid caregiver... i have paid more than 150k and made sacrifices.. and given up a lot of things.. and had to leave some relationships because their lack of love.. support.. understanding or just didn't get it.. it is extremely stressful...and i am glad this video show cases some of the stressors .. its harder than taken care of kids.. its a daily emotional roller coaster of emotions and not wanting to burden anyone with intense emotions.. and some of this video sheds light or what we go through.. not necessarily a daughter but its goes through various things we suffer through... but now i am getting more help with my mother.. hopefully this time it works and i will have time for myself.. I've been traveling and coping.. i appreciate all those who stayed with me when it was hard to understand my own feelings... and people being selfless and loving.. even some people in my past some that didn't get me I'm sure they understand me now.. so i hope everyone who is a caregiver to take it easy.. find someone who will love you through it all and be your shoulder and y'all just keep watering each other.. i am hoping they will try and get support groups for caregivers.. we need so much love and to be understood..
I know Franny as a very good friend. We both took care of our spouses as they battled terminal diseases. She has been a most helpful and insightful person in my life. Bless you Franny. You are a blessing to so many.
i take way more than 15 min for myself and i'm still burned out......exhausted and nothing left in me.
My alone time was after she went to bed...but then my anxiety was so high, I would binge eat late at night.
I feel you on this.
I am the other way..to tired to eat..not hungry. Just not getting time to shower, now I'm taking sink baths, because about the time I think I could jump in the shower, my husband would be calling me. I'm 68 years old and I have been taking care of my husband for 22 years, we have been married for 52 years. Over the years we have taken care of each other, both of us have had more then our share of surgeries. In the whole of the 90's one of us was hospitalized, the other care giving..we both have wore the pants and and a bra. I just have not been 68 before and my husband 72...
That's exactly what I am doing!
Reading this with my 1.5 qt of vanilla ice cream.... you’re in a solitary club of many.
Me too. Now that my father is in a home, I can't eat..so hard
I can't even relax in 15 min. I want my life back. I've been taking care of my parents for so long and i want my life with my husband. We've lost so much time together and now we are almost seniors. No end in sight.
And when caregiver has chronic severe pain from multiple health challenges it is even more difficult.
Agree with all the tools, she has suggested in addition, my experience is My God, The Great I AM-His Grace is Sufficient as I require it!
We had the misfortune to go through that with my mother who passed away and my grandmother with dementia. It feels like a never ending nightmare :(
I think this talk is really good because mostly when society talks about caregivers it's about people caring for elderly relatives or an elderly caring for the spouse - it's very rare to hear about how it is for middle aged or young couples caring for each other and there are a whole other set of issues.
I took care of my dad, my husband and now my mom. This is very very difficult But always, always MY PRIVELEGE! I do NOT Regret it at all.
That’s how I feel about caregiving for my husband. It’s not easy but it is a privilege as his wife to care for him, as Heavenly Father has blessed us that he can remain here on Earth for now.
Bless you, your loved ones, you have a beautiful soul.
I've had to take care of my mom for 12 yrs, with the exception of the college years. I wouldn't call giving up everything a "privilege." Giving up my 20s and seriously jeopardizing my chances at a career, marriage, and fatherhood is the opposite of privilege. Now, I would rather take care of my mom at this point in my life rather than say goodbye to her, but there's nothing great about any of this. If not for God, I would've killed myself sometime in the last few years.
I hope my future wife, kids, and in-laws (should I get married) are all healthy because I'm gonna have someone other than me take care of them.
I’m a spousal caregiver. I work full time, and I help spouse with tasks such as food, getting them dressed, helping them make it to the bathroom. Staying up all night to help with basic cleaning needs where needed. The stress has caused me to suffer from memory loss and delusions.
Being a willing caregiver to my wife, ( of 48 years) diagnosed with AD i feel that after 6 months I am becoming a Jekyll and Hyde having to live in two different worlds in real time. Now I am at the stage of exhaustion and losing interest in trying to slow the progression. Being totally exhausted each day, and having to plan for the tomorrows, along with producing meals, and still running our business, my main worry is that I will not be around to give her the love and care she needs as she progresses.
Im there too caring for my husband of 46 years with Parkinsons...im 10 years in in this care...im exhausted i need a lot more than 15 mins
I am a care giver for a 27 years old male that has gotten overwhelming, Every day is a chore...
I appreciate you personally my friend, Weldon!
Caregiving kills the caregiver way to early. Its absolutely not right for a married couple taking care of wifes grandmother because other family is nonexistent. It's not right to give up your house, life and putting marriage on hold to move in with grandma who can still physically do things but is used to things always being done by grandpa who passed. I feel so alone and worried about wifes wellbeing. We live to serve grandma and no longer live for us anymore. I'm tired of the people who get to live their own life in their own house say you're doing a good thing and it will be alright. It's a sentence to servitude and absolutely wears you down mentally and financially. I'm working to keep her retirement lifestyle going by using our future retirement . Just so sad for our life and what it has become.
Yes, there is a lot of need for caregiving.
im a state care provider. take care of terminally ill and fully disabled and it is very hard but rewarding. been fighting depression over 16 years and very high stress. it is really hard cause you become close to the person you're caring for then they pass. something needs to be done though. care providers are highly under paid. no matter what though, this is my calling. helping ppl that have noone and doing egerything i can to keep them home and out of a hospital and a home. one of many things i learned over the years is there is noone that has more fight and spirit than a person fighting/dying from cancer. i can handle my own but it would be nice if were paid more than $10 hr and have health insurance.
Amen
It’s been 10 days since I’ve been a caregiver to my mom who broke her arm & had surgery and I can’t imagine what other ppl feel who have been doing it for years. As an introvert who needs time for herself I feel like I’m losing my sense of self everyday slowly. I’m not complaining & I wouldn’t want anyone else to care for my mom but my God I feel so stressed out at the end of the day. I’m sleep deprived & hardly have time for myself or to pursue the things I love. Even though the situation is temporary but I now truly feel for caregivers.
Im there too caring for my husband of 46 years with Parkinsons...im 10 years in in this care...im exhausted i need a lot more than 15 mins ...people tell me take care of yourself and im like when? 15 mins aint gonna do it
Many thanks for your important work regarding caregiving. This is clear,practical and scientific information. It is also very timely as I'm caring for my husband with terminal brain cancer. As a psychologist I know your strategies work. Day to day thou I often forget to do them.I'll start each day reminding myself now.
Great job Mom, I will practice that in even normal life even if not for a caregiver role. May God bless you.
She's really good and should be at the *real* TED.
When my father fell ill, my mother did not want to take care of him! He was the best husband for 52 years and she simply did not want to take care of him. I became his main caregiver.
Enid Perez, I'm so sorry to hear that. I don't understand why many spouses chose not to care for their spouse when they become ill. Bless you. There is a reason for this and I'm sure you are doing a fantastic job.
for others who believe that a care giver should swallow there feelings ,to me that's just an easy way to distance them selves from your reality un till its becomes there turn.,,,,,
this woman knows what she is talking about
there is no way to do for yourself while caring someone else need 24/7. listening is always hearing how it is your fault they are sick.
Very helpful as I cared for my wife before she passed.
I wish I had seen this video before I became the caregiver for each of my parents.
At 7:00 , 15 minutes self care, and open ended questions in listening.
Sometimes I am angry at my husband. I blame him for this illness. I know its crazy. Sometimes I feel like running away....😢 😢
you took the words eight out of my mouth im the same way if my husband would at least treat me right,it wouldnt be that bad ,does your husband take it out on you?
ActuaLLY I RAN AWAY TONIGHT FOR 4 WHOLE HOURS BUT CAME BACK,but the same when i got back i get treated so badly.
me too its normal, I feel exactly what you feel
My wife has terminal brain cancer. It's been 2 years. I totally understand what you are saying.
I understand. I am 33 and my husband, 35 and we take care of my mother in law, who is 68 and has had 3 strokes. I mention my age because I feel we are still young to be dealing with this. Basically she never worked, when her husban died 12 years ago, he left her with a house she couldn’t afford and lost. She went back to work and she was so unhappy that she had her first stroke. Since then she has been dealing with debt, and many health issues (two more storkes that left half of her body paralyzed) the doctors said she could recover with some effort and the only thing she’s proven is that she is an entitled, lazy woman. My husband decided not to take her to therapy anymore because she just cried and cried and made him switch therapists at least 5 times and never saw any improvement. When I met my husband four years ago, he was dealing with the decision of just taking care of her himself because she was in so much debt and all of her social security income was going to an assisted living facility where her she was jot receiving good care. I encouraged him to do it to help her. We got married a couple of years ago and after I moved in things just became worse. She decided she didn’t want to walk with a cane anymore because she was afraid of walking and now we have to help her for everything. I even had to quit a job I loved to start working from home to be around for her. I love my husband very much but sometimes I just want to run away. I blame her for not taking care of herself, not saving for her retirement, for requiring so much attention and basically for trying to live through me. I am drained, tired, I just want a normal marriage but I feel so guilty every time my husband and I try to talk about a better solution for us, that I end up feeling worse. Not to mention ghe strain in our finances, because, again she didn’t save for any of this issues and she can’t recieve any more financial aid from the government in addition to what she gets already.
I think of my own parents now in their 60’s and they are healthy, happy, traveling and enjoying life and their grandkids and then I see my mother in law at 68 after 10 years of struggling with health issues and it just makes me sad. I want to run but I can’t do it because I really love my husband and we have so many plans....
It's bien an amazing talk, impressive. Thank you so much!
I'm a CNA I am doing in home private care. The tension between the couple is palpable. I'm trying my best to be a good caregiver for both of them because I know damn well it affects his wife so very much as well as the actual patient.
Her description of the myths is very accurate however the concept of 15 minutes a day for yourself is just not enough. Fulltime caregivers for seriously ill spouses/parents suffer severe burnout and and there's no way that 15 minutes a day is the answer. We need respite care, we need to separate ourselves for several hours at minimum several times a week and quite frankly a night away every other week would make the world of difference. Telling friends and other family members that 15 minutes would do the trick just just misleading.
I totally agree that caregivers definitely never more than 15 measly minutes.
Excellent review, extremely insightful
My spouse has unexplained memory loss (not long term memory thankfully). She is young. Only 30. Doctor’s can’t explain it yet and it has been a few months.
This is just our second year of marriage. I am in my 20s. We don’t know how long this will last.
She can’t work anymore, I am the sole breadwinner and I am just starting out in my career.
I am reading what older couples are going through and I feel for them and I can’t imagine what that must be like. It There is a still a part of me though that feels so mad and cheated by life that we are experiencing this so early in our lives.
Hi my name is Cristina I have just taken on a job to care for a lady terminally ill , I would love some important advice that will help me do the best job I can for her ,but I would love advice on how to help her husband ,who is depressed and has become introvert.
How do I help her to be possirive
Cristina how kind and brave of you. Wow.
I am no expert and have been looking after my husband with cancer for two years. Not sure where you live or what resources are there. Reach out to their family for help, contact their church, local hospice, hospital and their drs should have resources for sure.
Bless you for stepping in, don’t lose yourself and don’t beat yourself up over things out of your control. Get help for yourself if needed too!
Thank you Frances, for your encouragement word's and have a deeper understanding concerning a medical condition issues in my family... Challenges... Yes! It's so true how direct main points and agree what my partner Leonzio.Travelz😘🇮🇹 true facts he said too me his teaching, make a determined decision to draw closer too him every to and enjoy every day .. My comment is to realise the critical for making progress in all relationships including families struggling with motivation or discipline in this areas of well-being (health wise) to different age levels.... To study & be encourage too look into study plans we have, challenging, which can help me make this a daily habit....Tool boxz on aboard... So true indeed...
Supplication with thanksgiving...We don't have to be weighed down by Anxiety, worry or fearful thoughts.. Is our instruction manual like a road map... Yes A life changing power.. Wisdom.. Encouragement, comfort.. If it isn't a specific answer to a particular or problem, we find life principles that lead uz to it..
Wife Betty Rangiwai💕🇳🇿Aotearoa Warrior Waihine Toa.
Txs sister... yes Jessica Silva I love u ....
Great video on Assisting Aging Parents. At our law firm we have done over 100 videos to help kids with aging parents get advice from a legal standpoint. Would be great to collaborate on a future video.
"...words are the property of all alike, whereas such deeds as these belong only to Our loved ones. Strive then with heart and soul to distinguish yourselves by your deeds." ~ Baha'u'llah, Baha'i Faith
My husband died when he had the stoke that caused this demenia,, I lost him then!
I am so sorry for your loose my friend!
November is National Family Caregivers Month! Don't forget to take care of yourself Caregiver. Follow me on FB and IG for tips
What did the control group do in the study?
What about the daughter...the caregiver to their parent. What about, that, plus the fact the other 2 siblings abandoned her.
Why is there a focus on a spouse as caregiver.
I felt so alone and isolated, nobody understands how hard it was.
Bella I’m right there with ya
I feel that so much. I take care of my mother since I was 16 years old.
Hugs to you. I know how you feel.
This is important information for caregivers-
4 yrs in to demenia my husband is horrible,but nice to others,but not me,but he glady excepts everything i do for him,what causes the selfiousness?what cause this? I'm not going to make it I hate to see the way he will be even 2 yrs from now,any suggestions out there?
allison481959
yes, I can help, I hope. I’m 7 years caring for my mother(dementia) and one thing I know is that you are to take one day at a time! Don’t project into the future. That thing you fear may not even happen and what a waste of time all that worrying will have been. Just do each day what you can and tomorrow will be there, don’t worry! We can’t make others respond the way we’d like, nor make them care. Call your local office of aging or family social worker. They are great, for it is their profession and they want to put help in place for you. There are programs and help available when family and friends fall away. Google Matt 6:25(all of chapter 6, really)and let God speak to you about worry!
Another tip is....don’t take personally what a dementia person says that could bring you down. In later stages, you look back and see that you did get absorbed when you now realize they were not logical. It’s not their fault, nor yours. Just change the subject or kinda go along with what they say. In other words, don’t sweat it. You don’t have to be right, nor win. Ya know, sometimes I think the lessons learned through this whole ordeal is priceless for all of life! Let yourself grow in the most important way!
💙
So what should a care giver do if they’re caring for a person, and the family and patient expects you to do stuff that you’re not supposed to do? How can a care giver defend themselves without losing their job?
If you work for a company, refer to your supervisor, the company's policies and procedures, and regulatory guidelines. I'm a nursing home administrator and I am constantly defending my staff and educating residents and their families about what we can and can't do. They file grievances and I have to explain to them that we can't "make" the loved one eat/bathe/take medication/get out of bed/etc. You should not lose your job for following policies, procedures and regulations. On the other hand, if you work for an individual in his/her home, they aren't under any regulations so they may fire you for not following their instructions, even after you've explained that you can't do what they want you to do.
I feel like running away right now,I feel cheated,really cheated,It wouldnt be this way if my husband hadnt changed so badlym he lies and lies on me, he blames me for his demenia he hits me attacks me with screaming,and we are only 4 yrs into the onset of the dementia he is only 61 help?
I understand how you feel is 35 i am 34 i gave up everything to be his caregiver and he constantly screams at me. I do not know how long i will last
Hey! Allison. Sounds like you are in a very difficult situation and need to be cared for as well. If it is possible to find a support group of caregivers in your area, I recommend you find one. someone may have experienced a similar situation and got breakthrough. They can share with you. Alternatively, you can seek to see a clinical Social Worker available to you, they are better trained to help you through this difficult and trying time. may it be well with you
Try satvik food and constitutional homeopathy.
I am in that situation and we are not even related and I can NEVER get any caregiver support no matter how hard I try. ZIPPO.
sorry to hear that Bubbas :( ..I know its not much but try to get online and lose yourself in music.. watch comedies.. and see if you can get a bit of time-out SOMEHOW... we are a bit lucky here in Australia as we have about 10 counselling sessions we can take ..if go see the Doctor. and just talk to someone. If you are even remotely spiritual..either watch or visit spiritual churches or traditional churches for support ... and to get out of the house
The second advice doesn’t work with my Dad as he has dementia
Hello
Yes thousands are freely caring for those who freely cared for them, and then some are being paid money, rather than love.. question therefore becomes, who receives more?! Is it the one who only has money left to give for care or the one who isn' texpected to pay. What is LOVE??
Caregiving will kill the caregiver in the end, financially, mentally and relationship with husband or wife while taking care of grandma because mother in law wont.
What about daycare providers and the stress we feel? We get paid but that does not negate the stress of dealing with children and their families. I am tired of this only addressing caregiving for a family member. The symptoms are the same and abuse is happening because of it.
i hear you your job can be stressful but at least you get to finish your shift and go home. you don't have to deal with it 24/7..
I am guessing you have not had to care for a dying spouse. I can assure you it much different than a daycare provider.
I've worked in group homes for many years. I currently work very closely with daycare providers. Your job is not easy but caring for a dying spouse is different.
:(((