A caregiver can watch my mom for more days but I feel guilty for letting her. What should I do?


Mom is 79 years old, hard of hearing and has dementia. The ONLY people in our family are me, my 2 adult children and my mom. I am the only caregiver and it is wearing me out/making me hate my life and my mother. Of course I am a terrible person and lousy daughter for feeling this way.

Since my mother does not drive and has no friends and refuses to go anywhere without me, she has a very dull and lonely life. Her only goal every day is to see me. Yeah, I know, I should be grateful and happy and everything else, but I'm not. Every conversation has to be said twice as she refuses to wear the hearing aid and because she has dementia (and along with it a not so sunny disposition), it feels like torture every day I see her. It is quite easy for me to have to spend 25-30 hours a week with her.

Because of all this, I had to hire a caregiver. However, my mother still calls me when she is with the caregiver to see if we can get together. I hate myself for being such an uncaring daughter that I DREAD spending any time with her. How much fun is repeating yourself over and over again to someone who won't wear their hearing aid, then having to repeat it five more times because they keep forgetting because of the dementia and then having to figure out how not to piss off my mother as she gets very angry if my way of thinking infringes upon her (right) way of thinking? It ain't much fun.

I know she is my responsibility but I feel like I am going to explode under this weight. If only I had a sister or brother or a family member or she had a friend or if she would go to the senior center or invite a neighbor over, or... well, you get the point.

Sorry to ramble on, but I needed to give you the background info before asking the question, which is should I go for 4 days "off" instead. I am salivating at the thought of not having to shout loudly, repeat myself consistently, and listen to my mother's constant complaining. I made a list of advantages and disadvantages. There is only one under each, but it is a very strong approval/disapproval.

Advantage: I need a break
Disadvantage: Guilt.

This means that instead of seeing her on Mondays, Wednesdays, Fridays and Saturdays, I will instead see her on Mondays, Fridays and Saturdays (3 whole days inbetween there where she won't see me. Oh God). Truthfully though, no matter how much time I spend with her, it's never enough. She's never happy!

PLEASE HELP. I don't know what to do? I feel that my mother's happiness and what SHE wants is more important than what I want because she has no one else, but at the same time she is strangling me with her dependency.

(a very unloving, selfish daughter)

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Guilt is pointless. Give it up. Guilt is about you, not your loved one.
Guilt is totally appropriate if you've done something immoral or illegal.
If you haven't, then stop wallowing in the guilt and turn that energy into something you can benefit from. All you can do is your best. And your best is absolutely just fine.

If you have a loved one at home who is sweet, easy, and no trouble, I'm not talking to you. Count your blessings.

To anybody dealing with a complicated situation and is hesitant about letting help come in or utilizing a care facility, think about this:

== There's a reason airline safety tells us to put our own oxygen mask on first before helping others. You're of no use if you're gasping or passed out. Your oxygen mask may very well be the sanctuary of your home. If there isn't anywhere you can escape stress and get rest every day, you are setting yourself up for a really big problem with your own health. It's not "if", it's when.

== If it's possible to do this 24/7/365 for years and years, then why do nurses and staff at nursing homes work in shifts and get shift breaks? Even professionals get planned breaks so they can stay sharp and not burn out. What makes you think you're different?

==Care facilities are not what they were in the 1970s. If you haven't toured a facility, you should. Most of the ones I've seen look like a nice hotel until the spaces that have to look clinical because of the care level provided. They really do try to keep it as homey as possible.

==Care at home does not save anything. Count cost of supplies, cleaning, wear & tear on the home, washing machine/dryer/dish washer/hot water heater, carpet/flooring, and your time. Care at home comes with a steep price most people don't add up.

==If you feel obligated, why is that? Is this something you would expect your children to do for you or would you tell them to please live their lives?

==Look at the opportunity cost of turning home into a 24/7 care facility. Think about what you can't do anymore, and for how many years it's going to be. My grandmother lived in my aunt's living room at the end of her life, but that was only for a period of months, not 10-12 years.

==Look at the impact to others living in your home. They have a right to a quiet peaceful sanctuary from the world. Are you able to enjoy friends, hobbies, or even simply be a family who can spend time together in the current arrangement?

==What happens if you get hurt care-giving? What's your emergency replacement plan? How are you going to heal if there is a completely dependent person living with you at the same time? This might throw your whole arrangement into crisis very quickly. Who will make other arrangements? Who knows the details of the insurance, medicare, bill paying etc besides you? At my house, it would be nobody. At a care center, they can call somebody else in right away if a staff member gets hurt.

== Are you trained on universal precautions to protect yourself & the person you are caring for against infection? Especially during flu season.

==What is your plan to handle combative, violent, and out of control behaviors?

==If you're starting to feel like you're drowning, overwhelmed, exhausted, and about to jump in front of a bus, YOU NEED HELP. Do you find yourself getting short, abrupt, or hostile toward the person you're caring for? Is it hard to hold in your feelings anymore? This is not something you can just suck up and get past with willpower. Did you mean to run an amateur nursing home in your house? Probably not. These signs are of a dangerous problem emerging that MUST have attention before a really unfortunate crisis happens. When you're at this point, you MUST find some place to offer respite care outside your home. You MUST find counseling from someone who can give you support. Getting a respite break is crucial so you can gather your thoughts and make a plan for what's next. Going back to the way it is right now is NOT an option.
Helpful Answer (2)

Investigate Adult Day Care in your area. Mom pays $53/day from 7:30 AM to 5:30 PM. I pack her a lunch because she has a special diet. Otherwise, it would be $57. with lunch.

She gets all the "social" she needs. Bunch of people her age . . . they exercise, play games, gossip a little and, in general, have a great time. She comes home exhausted and ready to go again. I send her once a week now -- I'm considering twice. Much less expensive than having someone in your home and gives her the social time she needs. (Mom's occasionally incontinent; so if yours is, don't let that stop you. Most of them are geared for that.)

As to your guilt? I can't imagine why. How many daughters would do what you're doing? And remember. She only has eyes for her right now. That's what happens as we age. As dementia sets in, we don't care about another soul on the planet except us.

You already know you're basically doing a good job. Trade in your hair shirt and kick up your heels. ;)
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Everything I've read so far.reminds me of me and my mom. She lived with me until I could take it no longer.....but if I'd had some encouragement from my husband she would have lived with me to the end. But HE didn't want caregivers coming in. We found an adult daycare that was absolutely wonderful and for a few years she had a good time there. Now I'm faced with the dilemma of figuring out what to do with my husband....and he is a great deal more difficult than my mom ever could have been. He has alz...she had dementia. He obsesses over things...she only wanted love, reassurance and security. He wants constant entertainment and blames me for everything. I hate myself everyday for putting my mom in that shithole of a place where she resided till her death. I did it because when she was no longer able to enjoy the daycare and the daily grind of having to get there early in the a.m. and stay a full day (I was working).....my husband did not want strangers coming in to take care of her when I couldn't be there.....and between my siblings and all her loving grandchildren...no one could spare a dollar to help provide the care for the woman who had sacrificed so much for them. ..
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Find these two things first:
1) An Interfaith volunteer group
2) A caregivers support group
Now, use 1) to be able to attend 2).

Call the nearest Visiting Nurse Association for leads. Call your nearest state agency on Aging for more leads. Call the Alzheimers Association for even more leads, advice, and emotional support.
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I've been care giving for 4 years for my mother in law with out pay. i was put in a position without any knowledge of what i would be up against. i offered to "Help" but instead i take care of my mother in law 5 days a week and i resent it, my life has been taken away from me. i am depressed and my husband is in denial about my health and well being. i tell him all the time i cant do this much longer i walk around angry and we fight all the time I AM a zombie!!! our sex life has stopped completely for 3 and a half years. i have been put in a position of not being able to quit because of financial reasons. my sister in law has no idea of what i deal with every day. my husband refuses to bother his sister with the details of what i do every day for "her" mother she has not come to visit her mom once or even offer to help out. i realize she lives in Washington and we are in California not once has she come down to visit her own mother i am angry and i resent all of my in laws and my husband for taking advantage of me. financially there is no way out of this for us. but 1 week a year to give me some time off would be nice. she never calls me or texts me to even ask how i am doing. my marriage is pretty much over due to the position i have been put in and quite frankly i'm over everything and for anyone who is put in the position of a care giver i will pray for you. this whole situation has changed me forever I'm truly not the fun loving funny lady i used to be. i have shut myself off from all my girlfriends because I'm too bitter to be around I'm either crying or complaining about how much my life sucks! so it's best I just stay away. i am filled with guilt and shame most of the time because my heart is resentful and angry but its not my fault. sometimes i just want to walk out of my house and never come back and let them figure out what to do all by them selves but i cant. but i will ask for a divorce when my mother in law passes. there is no fixing this. Alzheimer's has ruined my marriage and my life.
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Kudos to you my dear. This just shows persistence DOES pay off. :-) W
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My mother is in the later stages of dementia (fourth quartile), but she has always been a social lady. I finally (earlier this past Spring) got her started going 2 days a week to Clelian Center, a local adult day care. Thankfully, because of a state program, we only pay 7% of the cost. At first she resisted, but I told her it was a senior center with lunch and other "kids your own age." It was hard at first but after two weeks she "remembers" that she does enjoy it. In truth she really does even though she does not remember doing things or even going. I take her in but a MyRide bus brings her home and even if she hates the bus ride she remembers having had a good day.

Dementia patients may not remember events but their emotional memory is excellent. So even if she refuses at first, try to get her to go to a good adult day care and see if she might, after a while, get to enjoy it.
Helpful Answer (1)

I know it is hard for you on all counts, (been there, done that) but try to be patient with her. Like naheaton (above) says She will not be with you always and someday you too will need patience from someone (God willing), so chin up as the saying goes. God bless you for seeing her when you can, but yes, give yourself some vacation from being caregiver in order to take care of your own health.
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I think we've all been in your shoes at some point during our caregiving time.
You feel guilty BECAUSE you ARE a loving and caring daughter. But like cmagnum said... "Guilt does not equal love".
You MUST take time off for yourself in order to recharge and refresh yourself from the added "guilt" that your mom puts on you. If you can't take care of your own needs, then you will be no good for anyone else, much less take care of your mom. All the pressure you are feeling from the guilt, dread of go there AGAIN, not being able to stand repeating things over and over or hearing things over and over will quickly turn into resentment and bitterness. These feelings could quickly make you snap or yell at your mom or worse. And no one wants to go that route, but it can be very easy to cross that line when you are feeling so overwhelmed and isolated. Even the best caregiver will have a bad day. The point is to know when to step back and actually do it.
So give yourself the much needed break and allow someone else to step in and lighten the load. You will soon come to see that hearing that same story for the “nth” time will put a smile on your face again even if you know the ending already.
God bless to all, whether your break is 30 minutes (if that) or days at a time.
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Hi Karen, boy do I feel your pain!! My mom has pretty advanced Alz she lives with me, my 2 kids, 1 great dane and my husband. She has a dog that pee's every morning (inside the house) and she is only happy when I am sitting down on the couch watching Tv next to her. My daughter, who has been very helpful in the last 3 years, is leaving for her junior year of college tomorrow. I have hired a CNA to help me and I am hoping the CNA will be moving in soon. That said, my mom battles with the CNA constantly and only wants me to do things for her (she is in complete denial of her condition). So, although I can leave the house while the CNA is here when I get home I get the guilt trip galore! (I hate coming home)

Don't feel too bad about not having siblings. I have 4 brothers, she has 2 brothers and she still lay's it on me. I have been told ALF's are covered by medicare so I am trying to muster up the courage to check them out. I feel EXACTLY the same as you do and I fear if I do put her in an ALF I will walk away and never look back due to the resentment I am developing. In addition to that my mom took care of her mom, at our home, until the day my grandmother died. I remember it was difficult for her but she just seemed more matter of fact about it. So, I have the added guilt of she did it, why can't I.......lol!! I guess we have to become like doctors and try to detach from the emotional, do our best and do no harm. As my husband says to me, "take it one day at a time". Good luck to all of us.
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