Physically and emotionally exhausted from long-term caregiving
exhausted parent of an adult disabled daughter requiring constant care

Sometimes you can’t get help for caregiving, because no one is willing to step in. Even professional caregivers.

We are 68 years old and caregivers for our 40 year old Autistic daughter. She is high functioning and also obstinate and difficult to live with and work with. As we are aging, we are physically and emotionally exhausted and are unsure how our daughter will be cared for when we can’t do it.

She is a “behaviorally abusive” to us, making it very difficult to enjoy her. She can turn a good time for her (or should be) into a nightmare of hitting, swearing, pounding on herself and throwing objects. She is on medications to help, causing her to gain 60 lbs, making her tired all the time and not helping with her with her temper and outbursts.

Many things can trigger her outbursts, including not getting her drink filled to the top without ice. She will go into a rant and show her fists to restaurant servers saying they should be fired. She worries that someone will sit in “her seat” or “touch her stuff” as she works herself into an out-of control state. No words or actions seem to defuse the situation.

As caregivers we are constantly living in a state of foreseeing and correcting her environment to avoid a major outburst. We are emotionally empty and feel helpless. Other caretakers we have had help us will say, “how to you do it? You must have the patience of Job!”

Early on babysitters said our daughter can only be cared for in “thirds”. Anyone having to be with her more than that can’t handle her. Guess what? As parents we are in charge of her 24/7.

Feeling hopeless we are both very depressed. Others around us don’t see this as we don’t talk about it as we would quickly lose our friends.

We have had several psychiatrists and psychologists work with us and with our daughter, but none have been able to provide us with “long term” results. Let’s just say that many traditional methods do NOT work.

I could list many experiences we have tried, but I’d be writing a book. We have had many supportive people in our lives, but it doesn’t help as we face our aging future.
Desperate and tired parent caregivers!
Anita & Gary
Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

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33 Comments

  1. I take care of my husband and work in a nursing home. And it is very difficult and yes you do put your own life on hold. Because you have to because you love them.

    Reply
  2. The last 2 weeks he has woken me up anywhere from 1:30 am to 4:30 am screaming for me. When I get all the way down to his room he asks things like what day is it, how did I get here, the sheet is too heavy. My favourite so far is at 3am when he screams me awake to tell me he can’t sleep. I’ve been looking after him for 25 years now. I am not enjoying this new phase. Any suggestions?

    Reply
  3. THERE IS A GREAT NEED FOR “QUALITY” CARE FOR OUR SPECIAL NEEDS ADULT CHILDREN LIKE OUR MULTIPLE HANDICAPPE SON WHO IS 48 YRS. OLD MARK ,DISABLED SENIORS , VETS AND MENTALLY ILL ALL OVER THE WORLD, SO LITTLE IS DONE FOR THEM, ITS A CONSTANT CHALLAGE EVERYWHERE. IT TAKES A VILLIAGE. WITHOUT THE MEDWAIVER , MONEY, SPECIAL INSURENCE, IT IS DIFFICULT FOR US ALL. NOT SURE WHAT THE ANSWER IS…….BUT WE HAVE THE RESPONSIBILTY OF CAREGIVER AND BUT FOR THE GRACE OF GOD WE WOULD BE THE PERSON WHO NEEDS THE CARE ,SO ONE DAY AT THE TIME WE COUNT OUR BLESSINGS, FIND SOMETHING, SOMEONE, A JOY IN THE DAY AND KNOW THAT THERE IS ALWAYS SOMEONE THAT IS WORSE OFF THAN WE ARE. GROUP HUG FOR EACH AND EVERYONE OF YOU !!

    Reply
  4. A commitment I think not,you have your life,as have I looking after wife with dementia,I did not ask to do it still have lot of living in me hate being a carer!

    Reply
  5. Have 2 parents bedridden and live with me. I’ve asked the county area in aging and the va for help. None seem to offer respite care. I’ve worked for 35 years trying to get to the place I am now. Had to take of several vacation days to take care of them but that’s run out. Unpaid days are not an option. Nursing home not an option. My son needs help with his new family and can’t be there. It’s becoming a hopeless situation

    Reply
  6. I understand there is just no explaining unless you live with someone who has ASD. I have two and my almost 30 years as a caregiver never trained me for ASD 24/7.

    Reply
  7. Ditto, ditto, ditto. I too am 68 y.o. and ill and alone. Same situation with my son..been there, done it all. People do not have a clue. Pray for a miracle every day. God Bless.

    Reply
  8. I took care of my mom for the last 4 years of her life. It was the hardest thing I have ever been through. I put my life on hold. Now that she is gone I feel so lost. It has been 6 years since she passed. I’m just starting to get on with taking care of me…

    Reply
  9. Prayers for everyone going through this! I had zero support from my brother when my Dad was bedridden in the hospital for 6 months. He was a terrible son & brother. I don’t know how he sleeps at night. I’m sorry for your pain.

    Reply
  10. My cousin is autistic and he is in his 40s. He lives in a group home in Austin, TX and he loves it! Loves being independent. Of course, it is expensive and it might not be the right option for you.

    Reply
  11. I am very thankful for my son, Cali, who helps me with his grandpa. I am the caregiver for my Daddy who has Alzheimer’s. My son started helping me a lot when I was diagnosed with cancer. I thank God for blessing me with my son.

    Reply
  12. Many nursing homes offer respite care for a week or however long you need. We get the occasional respite patient and it’s usually very hard on the patient and the caregiver but by the end of the week the patient has adjusted and the caregivers guilt has alleviated. About half the time they stay longer, one stayed 3 months. I’m sure the caregiver went back to it refreshed and with new found patience.

    Reply
    • Just an idea for the caregiver who desperately needs a break. Medicare might even pay for it, I’m not sure.

      Reply
    • It is a great…..but sadly Medicare doesn’t pay.

      Reply
  13. Life revolves around your parent. That’s how it is here with Dad. We find little joys as much as possible.

    Reply
  14. My niece is a doctor at a hospital and she says people check their Mom or Dad in by saying they have caregiver exhaustion. I’ve never done it but it’s a last resort sort of thing.

    Reply
    • Makes sense. Im lucky to have the VA come in

      Reply
  15. Yes, there are a lot of sacrifice’s. I was taking care of two households and dad, rarely saw my kids or grandkids. Even though my husband was supportive, it did affect our marriage. Now that dad is in memory care, I have more time for myself although still have a lot on my plate with him.

    Reply
  16. When your a caregiver to an elderly parent it’s a commitment you make to be there till the end for them. At the same time you tend to put a lot of your own life plans on hold.

    Reply
  17. I LIVE IT EACH AND EVERYDAY. GOD BLESS ALL THAT ARE IN THIS SITUATION.

    Reply

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