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I live with and care for an elderly father, 82 years old. Apart from the usual hypertension and diabetes, he is physically ok. However, he is reliant on me to manage the household, take care of his needs and even for companionship. He rarely initiates anything on his own, has very few friends and has no hobbies. He has some "strange" habits that drove me crazy. My therapist suspects he may have undiagnosed high-functioning autism.



For the past few years, I have found myself taking on more and more responsibilities related to caregiving. First, it was just taking care of his finances and medications. Then it was buying groceries. Then with the pandemic, maintaining the house and so on. It just all added up.



Before, I thought that caregiving was naturally a role that a daughter should take on. I tried to help him improve his quality of life by encouraging him to meet more friends and bringing him out on leisure trips. Now, with all the caregiving responsibilities I need to do, I'm simply exhausted. I think I have reached my limit. I feel like people expect me to continue with this caregiver role, but I feel like an empty cup that no longer has anything to give. Is this just burnout or should I start setting some boundaries? If it's about boundaries, how do I go about it?

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A daughter who's a caregiver should always set boundaries down. Otherwise, dad will wind up taking over your entire life and not thinking a single thing about it! Elders become so self centered they can't see past the tip of their own nose, oftentimes, and the children get the short end of the stick as a result, especially if dad is on the spectrum.

There's a good book called Boundaries by Cloud and Townsend that may help you.

Also, look into getting in home caregivers to come in to help you care for dad, at least with cooking, cleaning and running errands. Dad should pay the costs. Look into Assisted Living also as a possible option for him.

Who cares what others expect you to do in terms of caregiving?? If you've reached the end of your rope with it, then it's time to make a change. Burn out and compassion fatigue are both real and no joke. Your father at 82 can wind up living another decade or 2, and then what??

My folks lived in Independent Senior Living, then Assisted Living and then mom lived in Memory Care AL until she died in February at 95. I was able to maintain my own life and care for them at the same time that way. If I had it all to do over again, I'd do it the exact same way. Don't sacrifice your entire life doing hands on caregiving when other options DO exist. Look into them.

Good luck!
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JasmineB Jun 2022
"Otherwise, dad will wind up taking over your entire life and not thinking a single thing about it" - This is so true for me and it's very helpful to see someone call it out. It's a wake-up call for me that I can't expect my dad and other people to be considerate about my needs because let's face it, most of the time, they don't. They are focused on their own needs.

Thanks for the book recommendation. I will look into this. I saw in the reviews that it was written with a Christian perspective. Perhaps this is what I need because my faith has been one of the factors which encouraged this continuous self-giving, but it needs to be balanced with self-care.
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I have nothing against hired in-home care, but good facilities offer a richer social component and stimulation to elders' lives. Your dad doesn't have to be buddies with anyone there, but at least there'd be opportunities for activities, events, outtings, clubs, etc. My MIL is in LTC in a great facility. She has short-term memory impairment and mild/moderate dementia. She's a very sweet lady and she really enjoys the interaction with the staff and being brought to the activities offered. She'd never get that in my home no matter what.

As your father ages and possibly has memory issues, it gets harder and harder to keep him entertained, or occupied with any meaningful activity. And you won't have time to do it as you orbit more and more around his needs. You may not be able to do it as his mobility declines and he's more difficult to transport anywhere. The caregiving arrangement needs to work for you as well as for him. You're not obligated to do it. Outsource it if you're burned out and don't feel guilty for doing that. But if you stay in it, identifying boundaries will be the only thing that preserves your sanity and a semblance of your life.
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Um.

Are you still getting the minimum one hour a week of downtime which you recommended to another poster back in 2018?

Physically okay - as long as you don't count hypertension and diabetes, i.e. the two giant red flag risks for heart attack, stroke, dementia, sight loss...

JasmineB, what changes in your and your father's schedule would you like to see happen over the next (say) three months?

Who are the "people" who you feel expect you to carry on regardless?

This is your fifth year (at least) of being housekeeper, bottle washer, companion and general factotum to a gentleman who is unable to provide you with any meaningful feedback. I should think you're climbing the walls.
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JasmineB Jun 2022
Thanks for the specific questions, Countrymouse. They help me clarify more concretely what I need and what I would like to happen.

The downtime I try to have weekly had been cut off during this pandemic. And working from home arrangements meant that I was often easily accessible to my father, who would often keep a stream of negative complaints and nagging.

But I'm slowly trying to bring back my weekly downtime. I also realized recently that I need more space away from my father, as in being physically away from the house.
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Have you worked with your therapist about how to go about setting boundaries?

During the early pandemic days, your sister ordered groceries and had them delivered. Is she still helping out in some way? And don't you have at least another sibling?

One of your previous posts also suggested that you have a full-time job. Do you still have that? Who takes care of your father while you are working? Do you work outside of the house or from home?

Maybe it's time for another caregiving scenario in which YOU aren't the primary and seemingly solo caregiver.
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JasmineB Jun 2022
Yes, you are right. I've been working with my therapist on caregiving burnout, but so far, it has been more about managing my own emotions and reactions. I will bring up the need to define more concrete ways of setting boundaries. Thank you!
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IMO boundaries should be put into effect as soon as one becomes a caretaker and added to as needed. Boundaries are there to protect us. Once a boundary is set it needs to be adhered to, if not, it is just crying wolf and is useless.

Caretaking is not a natural role that anyone should feel obligated to do, woman or man. We women stereotype ourselves.

When I was young, hundred years ago, and starting out my adult life, it used to be preset. I go to college to find a man, I marry, I have 2.9 children, I serve the family the rest of my life. If I do not marry, I work as a nurse or school teacher, I was to serve others that is to be my role as a woman. Never sunk in with me, I heard the beat of a different drummer, still do.

My brother and I share the responsibility to make certain our mother & stepmother are safe and well cared for, never living with them under any circumstances. Both are in homes and have a sustainable life, made friends and have activities to pursue.

There are many books out there on setting boundaries, search Amazon pick a few and read them, you teach people how to treat you, reinvent you, stop trying to live his life and fixing him, time to fix you!

Good Luck!
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MeDolly: "Caretaking is not a natural role that anyone should feel obligated to do, woman or man."

I love this! It should be one of the Ten Commandments of Caregiving! I see posters excuse others for not helping, to include not even visiting the elder ("They can't handle seeing them that way"). Too bad. It's hard for EVERYONE, including the caregiver.

NO ONE is obligated. I don't care if it's a certain cultural norm (as long as the person is in the U.S. -- won't speak as to what should happen in other countries). Daughters in a number of cultures seem to be browbeaten into becoming the caregiving slaves to elders.
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You can get your Dad out of the house by hiring a companion to take him grocery shopping. He will be getting out, have a person there with him besides you.

That will be just one step you can take which will also give you a break.
He may feel better bringing home the groceries and putting them away.
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Thank you so much for your replies! I truly appreciate the concern, the encouragement and the advice you all provide. It's one of the things keeping me sane :)
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