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I am losing perspective on what is reasonable or fair. It feels unsustainable and unreasonable to be caregiving 24/7 but I still feel guilty a lot. My mom needs more and more. Right now she needs someone to sleep in the same room as her. I am fairly introverted and even on a good day I need alone time to recharge.


How much time do caregivers (who live with their loved one) reserve for themselves?

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I care 24/7 for a 98 year old, they give me about 35 hours a week off for me time - and the family has other caregivers to pitch in as needed. Time away is crucial for your own health. God Bless you for doing this!
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Reply to ptbdutch1963
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Reasonable and fair? Without reading the other answers I'll tell you that a break every day, the ability to sleep uninterrupted through the night, one full day off a week and vacation time twice a year is what I would consider reasonable and fair and the minimum any paid caregiver would expect. But then I don't think that is what you are really asking, is it.

One thing I do know about intimately is burnout, and everyone's threshold for that is different and depends on so many factors. Get as much time away as you can, even if you think you don't need it. And be prepared with a plan B in case you need to make changes, sometime just having that in place can act as a pressure valve.
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Reply to cwillie
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razzle-dazzle Oct 13, 2018
Thank you.
Right now uninterrupted sleep through a night sounds like heaven :)
I wonder if many family caregivers manage to operate that way ...with vacation time and a day off each week. I guess its up to me to make it happen though. No one is going to set that up for me,
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Dazzle,
My mom lived with us when she was between Memory Care facilities. She was 94 years old and in stage 6 Alzheimer's. She had to be watched constantly (unsteady and confused). She had hallucinations at night and would scream at the top of her lungs at 2 am. She would get up in the middle of the night, take off her pajamas and diaper and urinate on the floor. She would wander, so someone needed to sleep in the same room with her. Hubby and I took turns sleeping on the twin bed next to her bed but I needed more rest so I could go to work 3 days a week. We hired a night time caregiver but I would still wake up when they went to the bathroom or were talking.

It got to where hubby and I were snapping at each other. We became very short tempered when mother would hit us or spit her food across the table. It became unbearable.
She has been in a Memory Care facility for the last year and seems better adjusted there. The doctor has changed her meds at least 3-4 times before he hit on the right combination to keep her calm yet awake.

You must educate yourself on the different stages of the disease, look toward the future and what facility you will want to use. Very few can care for a dementia patient at home until their death. Start applying for Medicaid (Medi-Cal in California) now. That way she will be all set when the time comes where she can no longer live with you and/or you can no longer take care of her. Don't feel guilty when you've had enough. Everybody's "finished/done/over" point is different. In our case, we lasted 3 months.

It is asking for superhuman, devine endurance to solely care for a dementia victim. It is a feat that should not be done alone. You've heard the phrase, "It takes a village to raise a child ?" Well, it takes a village to caretake an Alzheimer's patient too.

It IS unreasonable and unsustainable to be expected to care for someone 24/7. To answer your question, there is no exact amount of time for respite. Some people need very little "alone" time, while others go stir crazy after just one day. Take the time you feel you need OR you will suffer burnout and be no good to her or yourself. You will notice yourself getting more angry and resentful. Your attitude will change and it will show in your caregiving.

Can she afford a caregiver/aide for a few hours during the week? If not, can you?
Is there a day program at a local senior center that she can enroll in to give you the daytime hours alone?
Check out your local senior center for all kinds of resources for your particular situation.
Talk with her doctor if she is experiencing increased anxiety, agitation, aggression or fear, as there are good medications that can help ease her feelings. It may take some trial and error however, to get the right combination.

If applicable, have a family meeting and state how often others need to participate. Do NOT ask them to help you. Make a schedule of "their" time with Mom. Tell them YOUR doctor said not to do this alone for the sake of your health.

My caring concern is with you. Been there, done that, no fun.
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Reply to SueC1957
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razzle-dazzle Oct 13, 2018
Hi
Thank you for posting a response.

We are not at the same point you were (yet). My mom is 90 and stage 5 ( I think). She is changing very quickly though.
She also has other health issues so that is part of the problem as well.

I think I need 2-3 hours to myself every day ( even if it is just in another room !) and every other weekend off ( completely out of the house).

There aren't other family members who are willing to get more involved. There are some who will do certain tasks once in awhile but they will not take on any of the responsibility for even a portion of the caregiving or commit to do anything on a regular basis. I will need to hire other people.

A day program sounds wonderful but it seems every day she has some health issue cropping up and she would refuse to go. We rarely plan any outings any more because chances are she wont feel good that day. Its hard to get her out of the house even for doctor appointments.

I'm researching facilities. I thought i could keep things under control and avoid ( or delay) moving her out of her home but now it feels like within a year I will have to move her for both our sakes.

Im going to talk to the doctor next week about the anxiety.
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How old is your mother, what are her needs, and how quickly have they been changing? In fact, how long is this likely to go on for? People’s tolerance varies quite a lot, but from the sound of it you are in the same room as your mother almost all the time – or very close to her. Most people, whether introverted or not, would find this unpleasant or unacceptable. You don’t want to go on like this until you reach the stage where the whole thing is too much. Cracking up doesn’t help you or her, and ‘unsustainable’ is exactly how this sounds.

What options have you been considering? Some are workable (including affordable for you), some may not be. 'How much time' for you depends on what options you have available. You need to find ways to change, and there is no point in feeling guilty about it. You aren’t guilty about your mother’s health issues, and you aren’t guilty if you can’t put up with this long term. Some things are just the way they are, you need to accept it and get practical!
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