Caregiver frustration
caregiver overwhelmed by frustration of long-term caregiving responsibilities

No matter how rewarding caregiving can be or how much we love the person we’re caring for, caregiving is frustrating.

Frustration just comes with the package. We’re human and caregiving inevitably involves situations and tasks that are inherently frustrating. So many of us feel guilty for losing our cool, but it happens to even the most patient caregiver, eventually.

Frustration is a daily challenge. My dad’s other 3 children make no attempt to even call him to say hello. So there’s no real break or support when my dad needs to visit the emergency room.

Because I am also my 22 year old autistic son, frustration can magnify greatly. My son struggles when he must wait for something he wants to do. Like visit a very big mall about 50 minutes from home. He also struggles a bit with sharing me with his grandpa.

Frustration, too, to eke out some time for just myself.

Frustration is and, probably be a big part of my life for the next while. – Mimi

Frustration comes up a lot when we talk about the struggles of caregiving. Dorothy, BobGiselle, HarrietJudith, and Roz all talk about the frustration that results from difficult people and challenging situations, day in and day out.

What’s your biggest caregiving frustration?

Constant interruptions

My husband had a stroke four and a half years ago. He uses a wheelchair and needs assistance with any transfers. Also, his judgement is not always the best when needing to pick something up from the floor. My biggest frustration is not being able to complete a task such as folding laundry or doing dishes without having to stop and help my husband. I love him so much and understand his frustration when needing to ask for help. If I don’t respond right away, he will try to do things that are not safe. – Debbie

I’m maintaining a writing career while caring for my disabled husband. Often when I’m writing, I have to stop what I’m working on and help him. This interrupts my thoughts, my word flow, and my productivity. Still, I’m determined to keep on writing, and created a series for family caregivers. – Harriet

Isolation

In the end, it’s the frustrating/bitter/sad realization that this is a path you walk alone, mostly behind closed doors. No one has the history you do. Honestly, I do not expect people to understand, even the relatives. Friends and family do the best they can, really, most of the time; but everyone, EVERYONE, has life’s curve balls to deal with. – Melissa

Not having any help and everyone second guessing everything you do. – Dennis

Lack of sleep

My biggest frustration is losing so much sleep. I never know when he will get up early in the morning and trigger the alarm. After I wake up from sleep I can’t get back to sleep knowing he is walking around needing me. – Gina

Navigating the system

The process to obtain Disability Benefits for my wife diagnosed with PSP was the most frustrating ordeal I have ever dealt with!! Every time I think about it now steam still comes out of my ears. – Paul

It’s okay to get frustrated

I don’t care what other people think. My closest friends know I love my husband. But I’m human. Actually, I’ve circled the wagons, and keep in touch with only the ones who get it. The rest? I’m polite, but I don’t really hear what they say. – Melissa

Frustration is a normal, even healthy, part of being a caregiver. How do we cope with it?

If you can, take a break. You probably can’t take the day off or even get an hour’s peace. You can hopefully step into another space for a minute to take a deep breath and clear your head.

Focus on problem solving. Is there something you can do to make a situation easier to deal with? Sometimes there isn’t. In that case, we need to learn to accept things the way they are.

Think about the big picture. If you’re frustrated with a person, be it a customer service rep or the person you’re caring for, imagine things from their perspective.

Remember it’s okay to be upset. Being frustrated doesn’t make you a bad caregiver or a bad person. It just makes you human.

Part of it requires cultivating your overall resilience. The more resilient we are, the easier we can rebalance after something throws us off.

You might also find Iris’ tips for dealing with anger or Michelle’s experience learning to forgive herself helpful.

Remember, caregiving isn’t for wimps. Take a minute to recognize how strong you are to have made it this far!

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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109 Comments

  1. It’s like being a parent without the hope of seeing your ‘child’ grow up to strong and healthy adulthood. With a child, every mess, accident, or tantrum is a lesson learned, a strength gained, an experience tucked under one’s belt. Another brick in the edifice of preparation for life. But in the elderly, each incident is one or more of those bricks crumbling. A mean reminder that worse is yet to come. Another source of humiliation and fear that no amount of “Hey, it’s ok. Don’t worry about it.” will comfort. No wonder there is rebellion and resentment and schemes to regain control and lost dignity. We as caregivers can’t shake the desire for progress. We refuse to admit that no matter how industrious or scrupulous we are…well, there it is. Is our nagging, torture? What are our true motives? Did I do the right thing when I gave in or when I forced an issue? In the end, my biggest frustration is a vanity: Am I hurting or helping?

    Reply
  2. Not listening to me, not leaving things alone and just relying on my judgement and supporting me with it or somin like that.
    And heaven forbid I should repeat more than a hundred times

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  3. My frustration is, I need a caregiver, and I am the caregiver for my adult son, it’s an odd situation

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  4. That the system is really not helpful in ways we need help. It is a very scary walk to care for someone completely when you’ve never done it before. You should be assigned someone who is experienced with the type of care you need to give for support. When u love someone so much you hurt as much as they do.

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  5. That no one wants to help when your worn out. Hospice only does so much. My mom aged 10 years, helping my step dad live his final months. Dr’s told him in Nov of 09 that he had 6 months and he died in May of 2010. His own kids never came around, until the last couple of days, and all they did was criticize my mom.
    Nobody wants to see death coming, but it’s so much harder when your facing it by yourself.
    Even at the funeral, they wouldn’t sit by her and yet she took care of their dad when all they wanted to do was stick him in a nursing home and forget him. Sad, thoughtless, selfish family!

    Reply
    • Being alone has been very hard for me to deal with.
      I get angry when I see everyone else that has a partner and seeing them go out and have fun.

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    • Thanks, Bob, for understanding.

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  6. 1. Isolation.
    2. My mom becoming physically violent towards me.
    3. Not having enough sleep.

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  7. It WAS arguing with the doctors, nurses, insurance companies, etc. They both just passed away but my hair turned gray the last couple of years big time from that. I could have pulled all the hair out of my head it was so bad.

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  8. When I am doing all I can to help my mom in law to be safe and healthy. she doesn’t trust me. she reacts as if I don’t know anything .

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  9. The day to day things frustrate me being a caregiver to my mom as it is just me alone doing it and I live with her and basically I feel like a prisoner but I do Love her just wish some days were easier..

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    • I’ve been alone for quite a while. I lost 3 personal relationships, being alone is the worst part of this job.

      Reply
  10. My husband and I had no help caring for his mother with alzheimers. She died a year and a half ago. Neither of us has gotten over the overwhelming anxiety it leaves your with that feels like PTSD. the worst is the memory of the end stage in memory care and the hospital.

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  11. Putting my health on a back burner, his family not coming to help, him not wanting me to leave when he’s in the hospital

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  12. Our spouses would think my sister and I over-reacted with our Mum’s fragility and her needing us to survive.It was hard and our lives were on hold,this we have never regretted doing for her.We did what our hearts told us to do for our adored Mum.We have no regrets.Our Spouses will live with their feelings,they didn’t have the honour to nurse their parents and be there on their final journey.

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    • I myself have no regrets on being a full time unpaid caregiver to my parents.
      I never thought i would have suffered from depression from caregiver stress and was treated with Cymbalta for almost 3yrs.
      There’s times that I don’t leave the house for 3 weeks. I’ve lost 3 personal relationships. Being alone hurts the most.
      When my dad asked me to stop working to care for them, i instantly said yes.
      It’s been a challenge but what else can I do.
      From not working for over 21 yrs, I’m going to be in deep financial trouble when I’m eligible to retire. I’ll be working every day until I die.

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    • All you can do is know you did your best and take one day at a time..The stress and depression lingers on for a long time and we too will work till we die…God Bless.

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  13. A therapist suggested recently, “loving distance.” I can’t change her path or make her happy, but I can make sure she’s safe and fed and loved.

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  14. Not enough resources: help, money to get help.

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  15. People not doing what they said they would. Not that it’s a cakewalk but when you have to work and your loved one needs help getting dressed for dialysis the caregiver not showing up really screws everything up. Or setting up transport for PT and no one showing up. Etc etc etc.

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  16. The complete lack of close family and friends. I dealt with everything that came my way. Being on the outside of your own family for no particular reason is hard to take, not impossible but nonetheless hard. It upset me mostly because I felt my Son deserved to have tons of loved ones, family that doted and loved on him as much as I. Sadly it was never like that for my mikie. Still bothers me.

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  17. Myself. I’m frustrated with myself. You live with how you react to things, and that’s all there is to it. It’s not the others in the family, or the patient (my mom), it’s me. I sometimes forget how to exist as myself when I can’t deal with what is happening around me. It’s like someone took my brain and all you hear are muffled sounds of me.

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    • I understand this all too much…..This is what trauma does to your mind and heart.–Please try to give yourself some respite time, and allow someone to care about you, and care for you.–You matter, and you need to take care of you and not lose yourself in the process of caring for others. I personally know sometimes that is easier said than done.

      Reply
  18. I could not even read the whole article, or all the comments… the hurt is still with me so vividly after the passing of my Mom in August 2014. I felt like I was drowning during the last months that led up to her death, and I have been an emotional mess and somewhat paralyzed mentally ever sense. My family ran like roaches when you turn on a light… if they hurt in anyway, I have never seen it nor been told. I feel shame that I was absolutely doing my very best, but it was not good enough to help or save my precious Mother. This is a cure heartbreaking disease and “job”
    I would like to lift up a prayer to Jesus right now from Him to provide each one of you good people a sigh of peace and joy in the mist of your “war zone”.

    I pray to God I never develop this horrific disease, for I have NO ONE on this earth to care for me. I have found that their are only a few that will even try to care for someone, even their own Mother, that has this horrible disease.

    I pray Jesus will ease everyone of your yokes. God Bless You All and the CARE you are GIVING.

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  19. Lack of empathy and the physical/emotional toll.

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  20. Reasoning with husband (mind of 3 year old, has stage 5 dementia) in store as he is throwing a tantrum because he wants something.

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  21. No help or contact from my siblings, my mother has no contact with any of her other children or grand children and we just found out there is a new great grand baby and l hear her crying in her room, its so sad as her son , my brother passed away too.

    Reply
    • Please give Merle a hug for me darling xx

      Reply
    • The same with me no help from no one.
      My older brother was nothing but problems with his alcoholism and passed away from his drinking. Good riddence. He stole from me and my parents.

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  22. Long time ago I cared about many patients by myself.

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  23. The biggest frustration is not the service users but their bloody family members

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    • Could not like this comment more. I LOVE my patient. Her son, however.. No.

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    • Exactly we had 1 struggling to walk so we put her in wheelchair n daughter kept saying make her walk dont use the wheelchair only it turned out she had a broken hip.was livid its a good job we didnt listen to her

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  24. My biggest frustration was my mother’s denial and talking behind my back when I was helping with my dad. Also, the lack of help and the judgment from my older siblings.–Before my dad died my mom was in denial and overmedicating herself, and talking behind my back and triangulating. I stepped into care for my dad with the understanding they would get home care supports, but they never did.—I asked my older siblings for respite relief and for support and understanding. Instead they gave me harsh judgment. It was easier for them to fight with me and blame me rather than step in and help with ANYTHING.–They were accepting money and gifts from my parents, and they came to see my dad the week he died being dismissive and rude to me and accusing me of overstepping and verbally abusing my parents.–The day before my dad died I ignored them and their rude energy and I centered my efforts on my dad. I took control of the situation because he trusted me and relied on me to take care of him.–They left me with my dad and mom the night they knew my dad would die. The abuse and smear campaign started at the funeral home. They came and loaded up the household….And, talked my mom who is mentally ill and abusive into writing me out of the Will.–I have tried to talk with them, but they will not talk to me.–I lost my whole family when I lost my dad.–Was I exhausted, you bet. Am I hurt, you bet. Am I confused, you bet. Am I resentful, you bet. Do I now know the dirty truth about my siblings, you bet. Am I free now, you bet. Do I have more faith, love, and strength than all of them combined….You know it!

    Reply
    • I’m so very sorry to hear this. My parents gave me power of attorney for making life support decisions ,financial ect.
      The useless grandsons who don’t visit or call are now getting nosy as to who owns the the house, who controls their bank accounts and health care.
      When my youngest nephew was at a cousins house, he and his mom were asking about the house and bank accounts. My cousin said if they want to know anything that they would have to go through me. My useless nephew said that he would have to go to plan “B”.
      There’s no plan “B”. All the legal paperwork has been signed and recorded under my name.
      What is it with these people who think they’re entitled for doing nothing.
      I’m the one who has been an unpaid caregiver for over 20yrs yet my parents gave me the house and the accounts without asking for nothing in exchange.
      I have a cousin who is taking care of her uncle when her mom passed away. Before her passing she asked my cousin to care for him as a favor to her. After 3 years my cousin got tired and put him in a home because she said she was tired. That got me extremely angry. She should trade places with me. That BITCH. Yet she has never told me this or where he’s at. She just wants to travel and not bother with her uncle.
      Jeri Johnson, if you need to talk just hit me up on messenger.

      Reply
  25. Having to care for my mom with little or no help from family.

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  26. Mom usually rallied when family visited. She would be exhausted shortly after they left. Family and friends thought she was happy all of the time. They were not around to sit with her when she was crying and wishing that life would end because she was tired of the pain. People under estimate the time and effort to provide care.

    I love my siblings but I still experience anger toward family that took a vacation to Hawaii which was on Mom’s bucket list. I fully realize that she could not travel; however, they did not bother to learn any items on the list. Being emotionally up and supportive of family members because it is not their fault that they got to continue living their lives while I had put my aspirations on hold.

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    • I so relate! Although I have little contact with family anymore. I’ve been told no one wants to be around my house it’s too hard for them to watch.

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    • My siblings just don’t care. What really lights a fire in me is during the holidays or my parents birthdays none of them call or visit them.
      Yet everyone knows my dad asked me as a favor to stop working and to take care of them. I was just beginning my pre med studies at USC.
      I guess everyone thinks that Alzheimers and leukemia are contagious.

      Reply
    • Bob Hidalgo That anger will probably stay with you for a long time. I had a good consulting job with a major company working nights and taking care of my mother’s doctor appts and other care during the day. I refused to take a traveling assignment because of Mom’s care. During a major Reduction Action, my whole unit got released. Sucks. Bob, I hope you have time on your side to restart your career.

      Reply
    • Jaylene Soriano I have heard this same thing over and over from family and it’s so frustrating. They think just because we stick around 24/7 that we enjoy watching our loved ones slide down hill. We lost my dad last year on my mom’s birthday and since then mom’s been more needy. I have 4 kids, and a husband who thankfully put up with us hardly spending time together because unless someone steps up to be here in my place for a couple hours we don’t get to leave. When I would ask, I would get the ” it’s to hard for me to watch, I’m glad you can handle it ” speach, drives me nuts. Like oh yeah I thoroughly enjoy it, I don’t but I wouldn’t leave my mom for anything and I am getting all the hard crap but I am getting all the memories ( good and bad ) and time time spent.

      Reply
    • It is frustrating. This is hard work! And you’re right, you are getting the memories good & bad…sometimes it’s good. I don’t focus on the hurt from family anymore it affected my health. I painfully recognized the selfishness for what it is & have put boundaries now. I realized the family attitude broke my heart. (Blew a hole in the back side of my heart) I had to let go of trying to fit in when I don’t. My job is to take care of my husband & son because I love them. And my boundaries protect my health & attitude

      Reply
    • It’s by far the hardest job we do, to watch death come slowly.
      You are a lifeline for me!

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  27. Dealing with familues & not everyone on the same page

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  28. My husband acts like he doesn’t need anybody until he really gets stuck. He’s not doing all the things he’s still capable of either, that makes me frustrated and then I turn into his mother. He is stubborn and not in the way that it benefits him.

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  29. Mine was getting my dad to see and understand what was going on with mom. He pretty much had refused to listen​ to what was needing to be done. Now, that he finally went to an appointment with me for mom he finally gets it. Now that mom is on hospice care (stage 4 breast cancer along with dementia, refused to have treatment) dad and I have help. The help I needed many months ago.

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    • I’m glad you have help. Everyone knows how sick my mom is with stage 3 Alzheimers and my dad has leukemia.
      Yet there’s no help from family.

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  30. My clients just seem to get on my nerves so much with their neediness. I feel like I can’t have a life of my own!!

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    • Clients?!? You need a new job. Your clients feel your aggravation. Its unfair to them!

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    • Omfg thats an awful thing to say im a carer and if i ever felt like that I would give up but coz i have a heart i go above and beyond to help them

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    • give the woman a break..all caregivers are human..and sometimes our nerves get raw…Koren sounds like she needs a vacation and someone to make her breakfast and then do the damned dishes. Do not be to harsh on honesty.

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    • You are absolutely right Melody Mundy. My apologies.

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    • To all the people that replied, I’ve been doing caregiving for 35 years for family members and also complete strangers. It is a never ending cycle! I’ve been working lately 7 days a week, 12 hours a day!

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    • Well at this point it’s a job. You can choose to quit. Many of us on this forum are family caregivers so it’s a bit disturbing hearing your original comment. We, as perhaps you did at some other point in your life, have no choice.

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    • Koren L Stephenson Not bad. Most of us have to do it 7 days a week, 24 hours a day, and we don’t get paid.

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    • It’s very easy to get burned out doing this kind of work.

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  31. My mom is constantly hiding her soiled diapers and is becoming very demanding.
    It always makes me angry when people offer advice on what to do yet they have no caregiver experience just like a lot of these so called caregiver experts offering useless advice.

    Reply
    • Yes! Mom does that too. I go on a hunt every morning looking for them. I never shame her, and I keep a lined trashcan in her room within easy reach. Its the dementia.

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    • My mom is stage 3 Alzheimers, i always keep a bottle of extra strength fabreez in her room.

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    • Lol @ the Fabreeze. If I did that, it would be gone in a flash. She’d either spray it all or pour it in the bedside commode.
      (I have to laugh, or I’d cry)

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    • Laugh and cry. It’s a good stress release.

      Reply
  32. Trying to get from people that are selfish

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    • You can’t they are too self centered to see others needs.

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    • Sad when sometimes its family

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  33. I have to keep repeating myself, because he has short term memory, not his fault, TBI from cardiac arrest, been 10 yrs now 365, 247

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    • I’ve been a full time unpaid caregiver to my parents for over 21 yrs 365 , 24/7.
      My mom is stage 3 Alzheimers and can’t walk due to her stroke and my dad has leukemia and many other health issues.
      I’m FUCKEN TIRED!

      Reply
  34. How my Dad acts so weak & unable to even get out of the bed when I’m alone with him, but then a Physical Therapist comes in & is able to get him up. It makes me look incompetent when my Dad simply won’t listen to me when I give him the very same instructions the Physical Therapist did.

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    • My mom is the same. When I’m home she needs help getting up to walk but when I’m not in the house she can get up and walk on her own.
      This makes me very aggravated.

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    • This is so common that the patients will listen better to strangers. Don’t let it make you feel bad about yourself. It’s the dementia not your Dad.

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    • I’ve been a caregiver for a long time and I was my mom’s caregiver she recently passed away from Alzheimers. This is totally normal my daughter and my son and I figure this out it has to do with listening to different voices. It’s like listening to a song If You’re Going to same song over and over it doesn’t register. When they hear a different voice and see a different face it changes everything sometimes I would go put my makeup on and do my hair differently period and Mom and react totally different. She might not respond to me but then will respond to someone she hadn’t seen in a long time or heard it’s the pitch of The Voice against like a new song you have to step into their world they are not doing this to make you look bad it is the dementia hang in there

      Reply
    • Bob Hidalgo I think my husb might be a little bit more ‘able’ than he lets me believe, too. But then he falls 🙁 & then the guilt comes.

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    • Oh my gosh!! This is so frustrating! Mom does this all time!!! I think she is afraid they will make her move if they really saw how she normally is. The bad thing is after the nurse leaves, she is exhausted for days and that puts more on me!

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    • Joyce Vessell Pyle, when I have to pick my mom off the floor I get very angry.
      The last time I pick her up off the floor she urinated on herself and on me.

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    • That’s my Mom also….especially when it comes to bathing…with me she bitches and argues, saying she doesnt need one etc.
      ….then an aide comes in and she obeys and is a sweetheart to her…
      …as I sit in the other room clenching my teeth.

      Reply
  35. Not being well myself and Mom being so demanding with no help from siblings.

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    • I know exactly how you feel. I’ve been a full time unpaid caregiver to my parents for over 21 yrs.
      Everyone in the family knows how sick they are but it’s extremely rare that they offer to help.
      Otherwise I’m doing everything myself. Not even the worthless grandsons offer to help.

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    • Same here. There’s not one grandchild that offers to even visit, much less do anything.

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    • Right there with ya ! They only help when it’s convenient for them! Ugh!

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  36. Other people!!! Repeating he same information over and over again!

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    • Especially useless advice from caregiver experts that have no caregiver experience. Only what they learned in school.
      We are the caregiver experts. The so called caregiver experts need to live our lives to learn what they don’t teach in school.
      A few times i challenge the experience of these so called experts if they have been or currently are caregiver.
      Some admit they aren’t, some say yes but some have gotten angry and said if I want to know that I have to call this or that person in regards to their caregiver experience.
      I told them why should I call, just say yes or no.

      Reply
    • Very good point, unless you’ve been one or are currently in the situation, they just don’t know. Even each caregiving experience is so different! Best of luck to you!

      Reply
  37. turning taps on,putting my clothes on,hiding everthing,crying.

    Reply
    • Just the combination of EVERYTHING!!

      Reply

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