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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.

Karen
(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.
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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.
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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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frequentfliertx, shame on you! Get yourself some time off RIGHT NOW!
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I haven't gotten a break in 15...........................years. :-) W
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R U Kidding? Take advantage of the caretaker! Go out and LIVE your life.! My mother only wants my husband and I to care for her. We have not gotten a break in 3yrs... Go for it Dahlin"and enjoy your life. Don't feel guilty.
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It is great to hear your good news!!!!! Remember, guilt does not equal love.
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You are all absolute angels. I truly appreciate you all taking the time to help me. Partly because of all of your advice I have summoned the courage to call the caregiver today and asked her to do that one extra day. I guess if it helps me out it helps my mom out too because at least this way I am not one cranky nasty impatient person, but a more well rested more patient person. I truly don't know how to thank you all.

I need to see guilt as something that is NOT good. I used to see guilt as something that meant that I was a good person (guilt=caring and loving daughter). Guilt to me meant I had to do something I didn't want to do. But if it means I am resentful and angry, how does that do anyone any good, including me? Again, thanks for the enlightenment!
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Let a caregiver help you out. Enjoy your well-deserved break. Don't worry, your mom will still be there when you get back. :-) W
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By all means, let a caregiver help you out if that's what you need. Caregiving is a tough job, I should know, right? The fact that you thought enough of your mom to get a caregiver makes you a very special daughter indeed. Kudos to you my dear. :-) W Alles gute. :-) W
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Just how we work it here- mom has AD and lives with us. We used her assets to convert our garage into a aparment for her with bathroom bedroom and living area as apposed to the $$$$ for Assit living (all the caregivers etc... say it looks great and works well for her) so she can live with us. As for the repeating when it happens I just repeat to myself "it's the disease....it's the disease..... it's the disease......" and believe me I am repeating it constantly reminding myself she can't comprehend REALITY because she lives in her own reality as I presume all with any type of dementia not just AD. I too am sole caregiver with adult and teenage children who mostly avoid her so I attend support groups for AD to vent etc... any way hope some thing helps and YES take a break you really need to take care of yourself!!!!
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You've gotten some very good advice so far.

It sounds like AL might be a good option for her, or some other long term care facility. Dementia is progressive. It is unlikely she'll be able to live alone, without 24-7 supervision, indefinitely. What will you do then?

Yes, long term care is terribly expensive. Yes, she'd have to sell one of her homes to qualitfy for Medicaid (I assume -- I'm not an expert.) Yes, this would eat into your eventual inheritence. That is sad. But surely you want the best for her now. You don't owe her your independence and your sanity, and she doesn't owe you an inheritence of a certain size.

Now that so many of us are living longer and longer and needing more resources for our own care, it is becoming rare for a working class couple to be able to leave a sizeable inheritance to their children or grandchildren. It is sad but it is a fact of the modern world. I have told our blended family of 5 kids that they will share and share alike in any estate, regardless of who dies first. There will be no difference between the "step" and the "natural" children of the surviving spouse. But I've also told them not to expect there to be anything leftover from caring for dad's dementia and who knows what I might develop down the road. Old age is expensive. Sorry.
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If only I had a sister or brother or a family member? Many of us do and it makes -0- difference! If you can afford a trustworthy caregiver do not hesitate to hire one. I would do it in a heartbeat if I had the funds.
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Karen, I have a mother-in-law who has dementia/Alz and lives in asst. living. I'm the one that takes her places and entertains her on a regular basis. She has three sons, I'm married to #3 and we live the closest to her. Since I don't work outside the home, I've elected myself to watch out for her. The repeating thing is annoying but doable. She remembers probably 1 minute at a time, so I repeat myself a thousand times when we're out on one of our little road trips etc. It used to bother me, but not anymore. I just decided to stop being annoyed. I told myself that this is the way it is, I can't change it, I can't change her brain, I know she's going to repeat herself, so get over it Nancy. It sounds stupid, but I basically told myself off I guess. ha. There are days that I can't do the repeating thing as well, so I stay away till I can. Asst. living places are terribly expensive I know that, but my in-laws worked all their lives for money to take care of themselves when they got old right? So I'm so thankful that she has enough money coming in and some in the bank to live there. Otherwise she'd be living with us I know. And Gem is right, she won't remember that you came by anyway so don't beat yourself up about that ok? I took my m-i-l on a road trip to the coast recently. I brought us a lunch in a cooler, we drove through the woods on a road that's usually only for people only taking their ATV's and dirt bikes on so it was really narrow and hairy. We stopped and took pictures, We worried that I was going to come around a corner and see another vehicle and have NO place to pull over. She said it would be the ditch or the cliff that we had the choice of going over/in to get out the way. After all that, the next day she didn't remember any of it! But she and I live in the moment at this point. She enjoys what we do together at the time, so that's all that matters. Life is short.
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Wow, thanks for all of your quick comments!

lilliput, my mother lives alone. She lives about 15 minutes away from me. I am sure she would prefer to live with me, but I would go insane if that were to happen.

I checked into ALF's and they are ridiculously expensive. They start at like 4 grand per month. She does not have any long term care insurance so this would have to be paid out of pocket. She does not qualify for medicaid as she owns her own house (and the one that I live in). Sure, we could sell her house and then shovel out 4 grand per month and deplete her other assets and shell out 4 grand a month until she is flat ass broke and my dad's hard work to give her and me a better life has all been sucked up by the ALF, but that seems crazy. I did not realize how expensive the ALF's were. I just cannot believe it.

Thanks for the advice from everyone. I asked mom today if the caregiver came yesterday (she did). Mom said no. Well, if she can't remember when/if the caregiver comes, how on earth can she remember when I see her and when I don't? So I guess that leads me to think - hey, if she can't remember seeing me yesterday, then I really don't need to have seen her yesterday!

She truly lives in the moment. If I am not with her, she has to be with me. I think she honestly wakes up every morning and says "where's karen. Got to be with Karen. Have to phone Karen. Need to be with Karen today. All day. Where's my Karen?!!" You (hopefully) have no idea how frustrating it is to be the object of someone's total existence. It ain't fun.
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Sweetie give yourself permission to take a break, as you certainly sound like you need one. Your Mom has dementia so she will not even know that you are away. Tell her that you will see her soon and go off and relax and recharge your batteries. Dementia is a terrible thing, but in this instance you can use it to calm her. Do not tell her that you will not be visiting until X, just say see you soon Mom.

Take the break and enjoy yourself
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Karen, you are not your mom's mom nor are you responsible for emotional life to the point where how she is emotionally is how you are. The guilt sounds like something that your mother put in as a trigger years ago. That is not real guilt. It is emotional blackmail which also operates with a lot of fear and obligation. To put it bluntly, her emotional dependency upon you and your emotional dependency upon her together is what is strangling you. I suggest that you detach with some healthy boundaries and if possible see a therapist.
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First puhleezeee stop beating up on yourself. You are not selfish or unloving or you would have left your Mom without any help.
Second, everyone is responsible for his or her own happiness - even your Mom. She is choosing to isolate herself and I'll bet that started years ago.
Third, you have every right to protect your health and sanity.

You did not say where your Mom lives. Is she with you or in her own home?Regardless, she would really benefit from an ALF. She would get daily interaction with a variety of people, even if she does not participate in the activities, etc. Her focus would shift from you to her life there. She needs her own space and life. This is normal and what every person should experience regardless of age. The minute we depend on someone else for our sole support, no one is happy.
If you could find another living environment for her, her daily needs would be taken care of and you could go back to being the supportive loving daughter again.
It is unrealistic for anyone to become someone else's entertainment, caregiver, medical staff, and landlord. It is just too much....so release the negative thoughts. Start looking at ALFs and other adult living complexes in your area...many of them have memory care facilities now.
good luck
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