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I'm caregiver for my mother, am I wrong for going out for fun?

I’m struggling am only 35 years old, my mother has dementia. I’m trying my best to take care of her myself. My question is....am I wrong for going out and having a life? She makes me feel guilty for leaving every time I come home, even though she was ok before I left I really don’t know what to do anymore, I’m depressed about it. it.
Status: Open    Jan 23, 2017 - 07:40 AM

Dementia, Caregiving

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Expert Answers

Jan 23, 2017 - 10:32 AM

Caregiver burn out is a REAL thing. It is ok to try to have balance in your life - it's hard! You need to take care of you! One recommendation would be to set up a large calendar on the wall. If you had a calendar on the wall with not only daily activities, but also time that you will not be available. This way, you can reference this often and it is visual for your mom to see that you will be gone. This is easier than you telling her that you will be gone all the time and she forgets it. Highlight your days, make it easy for her to see.

Can she be alone? When you are gone, is there someone else that needs to come in? A lot of times, change is very hard for people with dementia, so you leaving may cause anxiety, which comes out as giving you a guilt trip, but you also need to put yourself first, otherwise you will not be able to mentally care for her in the long run. If she is alone, it might be helpful to set up some activities for her - puzzles, music, audiobook, etc. This way, she isn't focused on the fact that you aren't there. Not a permanent solution, but for many people, this at least helps.


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By linda_coe on Jan 28, 2017 - 05:57 AM | Like (1)  |  Report

I used respite care at an ALF for my husband, who had dementia, when I needed to be away for a half day or so. It is so important to get away and take care of yourself, so you can be the best for your mother when you are with her. If you resent not having time for yourself, that resentment will come through in your tone and actions even if you don't want to or mean to.

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Jan 25, 2017 - 09:54 AM

You are not remotely wrong for trying to maintain a fulfilling life even as you care for your mom. Indeed, it is absolutely vital that you do so. Family members caring for their loved ones with dementia are tremendously vulnerable to burnout: to psychological as well as physical illness resulting from the toll this labor of love can take on them. The best way for you to stay whole and be present to your mom when you are with her is to ensure that you retain your own, healthy sense of self and do all you can to preserve your own well-being. You will be a much better care partner for your mom by doing this.

If you start to suspect that it is not safe to leave your mom on her own (or even that she would be happier with consistent company), it may be time to investigate having a companion or professional caregiver come in a few hours each day. Adult day centers are another option, and good ones can be really revitalizing for people living with dementia, who have started to feel isolated from the rest of the world.

Make sure you leave energy and time to care for yourself as well as for your mom.

Jan 27, 2017 - 03:33 PM

Even though I'm an attorney and not a mental health professional, I have had some experience with caregiver stress. Self-care is so important and is often overlooked by caregivers. I would recommend you take time to care for yourself so that you can better care for your mother. If you do not, you run the risk of being too run down to do any good for her. It's why the airlines tell the adults to put on the oxygen mask first, and then help those in need. If you do not take care of yourself first, you will not be able to help anyone else. Good luck.

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Jan 23, 2017 - 10:32 AM

Caregiver burn out is a REAL thing. It is ok to try to have balance in your life - it's hard! You need to take care of you! One recommendation would be to set up a large calendar on the wall. If you had a calendar on the wall with not only daily activities, but also time that you will not be available. This way, you can reference this often and it is visual for your mom to see that you will be gone. This is easier than you telling her that you will be gone all the time and she forgets it. Highlight your days, make it easy for her to see.

Can she be alone? When you are gone, is there someone else that needs to come in? A lot of times, change is very hard for people with dementia, so you leaving may cause anxiety, which comes out as giving you a guilt trip, but you also need to put yourself first, otherwise you will not be able to mentally care for her in the long run. If she is alone, it might be helpful to set up some activities for her - puzzles, music, audiobook, etc. This way, she isn't focused on the fact that you aren't there. Not a permanent solution, but for many people, this at least helps.


Comments (1) | New Comment

By linda_coe on Jan 28, 2017 - 05:57 AM | Like (1)  |  Report

I used respite care at an ALF for my husband, who had dementia, when I needed to be away for a half day or so. It is so important to get away and take care of yourself, so you can be the best for your mother when you are with her. If you resent not having time for yourself, that resentment will come through in your tone and actions even if you don't want to or mean to.

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Answers

Jan 28, 2017 - 03:32 AM

You absolutely need to take care of yourself, and have a life you enjoy. If your mother didn't have dementia, she would want exactly that for you. It is true, as others have said, that she may be fearful when alone. She may also have a distorted sense of the passing of time, and it may feel like you are gone much longer than you actually are. Does she still have friends her age? Are there activities that she enjoys at home? Perhaps when you go out a friend that she knows well and recognizes could come over to spend some time with her. They could play simple games if she is able, or watch a movie and have popcorn, or just have coffee and chat and reminisce. Then your time away would be pleasurable for her, too, and you wouldn't stress about going out in addition to your very real stress about caring for your mother. Perhaps your mother could see this as her "fun night" rather than you leaving her.

Jan 28, 2017 - 10:34 PM

As others have said, you need to take care of yourself in order to have the energy to take care of your mom. Is it safe for her to be alone? Would she wander out of the house and not be able to find her way home? Has she ever tried to cook and left the stove or oven on, creating a fire hazard? Is her balance stable so that she is not likely to fall if alone? Can she use the bathroom alone safely? These are all things to consider. Is there an adult daycare program in your area that she could go to and enjoy herself? Perhaps you can afford to hire a companion for her from a personal assistance service one or two evenings a week if you need time away in the evening and it is not safe to leave her alone. Are you her only child or the only one who lives in the same town as your mom? Are there other relatives who could stay with her when you need to get a break? A good resource for you is the Alzheimer's Reading Room www.alzheimersreadingroom.com - a very extensive blog with hundreds of articles on various topics relating to dementia and caregivers. Bob DeMarco, the man who started it, cared for his mother for eight years and has gleaned a lot of information that he shares freely. You might also check oue www.alz.org for their resources. It is likely that your presence makes your mom feel safe and secure and that your absence makes her fearful and insecure, but she might not know how to tell you that so she tries to make you feel guilty so you won't leave her alone. God bless you as you do your best to honor your mother.
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