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I often wonder if I'm not spending enough time, but frankly, I'd lose my mind if I spent more than a few hours a day with my mom. She lives in my house (in her own apartment), but she's in stage 6/7 of Alzheimer's and she sleeps a lot of the time, and gets mad and very agitated when anyone tries to help her - which visiting her requires, as she needs help with most things. She doesn't wander, her stove is unplugged, and she has plenty of things to eat without any help - cups of applesauce, protein bars, cookies, granola bars, cheese sticks, etc..., and I make her things she can eat without having to use utensils on the weekends. She gets fed M-F at daycare, where she spends about 5 hours and I spend about 2 hours later in the evening with her on weeknights. On weekends, she gets about 4 -5 hours of my time split into 2 visits, once in the morning and once in the evening. She has cats, so she's not completely alone when I'm working or cleaning or running errands, all the stuff I'm doing when I'm not with her. Am I spending enough time? Am I awful not to spend more time with her? I'm trying to get her care organization to send home care people to her to help her in the mornings (when I can't), but they're cheap as hell and resisting doing anything extra for her. I can't afford to hire anyone.

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Laurie you are outstanding!! No one could ask more and you have no need to feel guilty.
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Laurie, you are doing a phenomenal job. Make sure you have enough time to recharge yourself and your family.
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My mom has early mild dementia and I think it's going into mild-moderate. She doesn't wander either. She can bathe, take care of her hygiene, even cook and do the dishes and care for her little maltese dog. But we repeat the same conversations, she is forgetting everything, she is lonely, very naive (she has been her whole life, like a child in some ways) and she can't write her bills very well anymore or divvy up her pills. She gets confused now easily. She lives across the street from me in a 3/2/2 home. I will say this much; I take her out shopping (she loves to shop) which also gets her walking, about 6 days a week, for 2-3 hours each time. I'm running my own house here as a single mom basically taking care of 2 teenagers, the properties (both of them) and thank God for child support or I would have to work, and mom threatens to move away from me if I get a job! lol. So No, I think you are doing great. It is taxing as hell and then the guilt starts when you think you shouldn't be feeling like she's a burden. I know when my mom passes away I will feel like an orphan; who loves you like the mother who gave birth to you? But by the same token, it's very hard, and I know if I spent every day like 6-7 hours a day with her I would be very irritable and agitated. I understand and think you are doing a lot. My mom won't allow any other companion, as she says, "I have YOU!" Sometimes I think at this age with the dementia they are self-absorbed and cannot or will not see anyone else's situation...
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Bless your heart! You are doing a great job! Take care of yourself. Prayers to you!
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Wow! Bless your heart! I would not be able to keep up!
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Laurie, you are amazing. Please don't feel guilty. You are doing a great deal. Your mother has day care, as well as your attention. It sounds as though you have the situation in hand.
Take care of yourself, too.,
Carol
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yes you are doing very good, but to answer your question it's basically 24/7 as my husband is mid stage I either have to sit & converse, and if I leave the room, he is right behind me, my refuge, the bathroom, after 5 minutes he's knocking wanting to know if I'm OK....
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Yes, Nikki99, I agree that as the dementia progresses, they become even more self-absorbed. My mom is now in AL, but she still thinks that I should be there more often and for longer periods of time. She doesn't remember (or care?) that I have a job and a household to tend.
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My mom has fallen 9 times since last March. She doesn't use her walker as much as she should. What should I do?
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I understand the guilt. My MIL lives with me and most of my time with her involves actual caretaking - bathing, turning, feeding, clean up, etc. She also sleeps a lot. We don't spend "fun time" together because she constantly says "leave me alone." Yes, I still try... but my attempts are not successful. I try to hug her etc but it really is hard to hug a porcupine. Evenings are spent in the same room with the tv on but she stares into space and I try to comment on tv shows etc as best I can but it sure feels like I'm talking into space.
I still feel guilty when taking time for myself........but I must. Otherwise, I will go crazy. at this stage our relationship has become more "clinical" that I would have ever expected. You are doing way more than me and you are to be commended.
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At the stage you describe, we can not leave my mother in law alone. Because of hygeine and safety issues..... she lacks the ability to clean up after herself after accidents and would not know what to do in an emergency. My mother in law does not have cats, but my dog would not know how to help her if she needed it. As Alzheimers progresses people can choke from problem with the brain that controls swallowing..... just some things to consider..... I am big on trying to think ahead though you can't always prevent every situation which may arise. Maybe a nanny cam could put your mind at ease when you can't be there.
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I struggle with the same concerns. I've given this LOTS of thought; in my case i see being 'next' in line and my kids having to deal with me.(I'm totally fine, but so were my folks at my age!) I try to approach balance what I would want from my kids and apply to caring for my mom. I remember when my parents went through it with my grandma and how they always said they didn't want to impact my marriage/family etc. This helps me some. "Do untu others..."
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I must admit it hadn't occurred to me to add up, exactly - I get quite irritated with official forms that ask "how many hours per week etc." I dunno! As many as it takes.

But my mother has always liked her own company, and it sounds as if yours does too. There are such fine lines to tread, aren't there? Are you giving her privacy or isolating her? Are you helping or intruding? And that's before you even ask "how much time can a person of sound mind reasonably be expected to spend with someone who's not before she herself goes round the twist..?"

By virtue of the fact that you've given it thought, and you're doing a brilliant job of looking after your mother, I'd say the situation's fine as it is. If she were lonely or anxious, you'd hear about that instead of her getting annoyed when you help. I'm sure you'd know if she were unhappy.
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Laurie, it is a wonder you have any time for yourself. Spend as much time as you can without causing yourself harm. No one can expect anything more of you. I may have some issue with what you are feeding her, but you do what you feel she wants. At this stage what difference does it make? Keep up the great caregiving!
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I would say you are doing enough, maybe more than you should. Don't feel guilty at all. I have respite care for my mom and even though I talk to her everyday, I'm not there physically much at all. She is in mid stage Alzheimer's and repeats things non stop. I have to stay away because how many times can you answer the same questions in the course of a few minutes? And there is nothing to talk about anymore. She never gets a story straight or the people that I'm telling her about right, and gets all confused. It's better not to tell her anything because she gets it all wrong and then won't remember 5 minutes later. Our attempts at conversation go nowhere, yet she keeps asking me what's new.

I'm married with my own house to keep up and 4 pets to take care of, yet she wants me with her all the time. What am I supposed to do, just sit there and not talk? Mom needs help with almost everything and I pay her bills, take care of her checkbook and take her garbage out and go shopping for things she needs plus she comes to my house once a week for dinner and another day we go out to dinner, but she orders what I order because I don't think she can make sense out of a menu. I have one lady who cleans her house twice a week and another lady offers respite care a few hours a week. Sometimes I do feel guilty about not spending more time with her, but for my own sanityi just can't. I do what I can, because as this disease progresses, she does ger more self absorbed and if I spent time with her 24/7, it still wouldn't be enough. You are doing all you can. Get some relief, you deserve to have your own life as we all do. Good luck.
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Are you sure your Mom is stage 6/7? I am so surprised to read all of these posts. It takes me 4 hours to get my mother up, bed, give her crushed pills, prune pudding, miralax, pureed eggs, thickened coffee, 10 oz of thickened tea, yogurt, bathed, de-bm'd dressed, and shampoo'd. I then hoyer her into her relcliner where is is rests while I get maybe an hour to shower, throw food int he crock pot, unloads dishes and throw in laundry, etc. Then she is babbling to her music all smiles and I feel so guilty I go in with her and we have good laughs over much of nothing, but its priceless. I might fold laundry or wetwash her floor, etc while I am in there and within another hour we start the process all over again for dinner. Feeding is 2 hours, changing her, lifting her on and off the toilet is a chore as she doesnt walk. I let her food go down as my husband and I eat and then we hoyer her to bed , maybe change her again, and put on her music for a couple of hours until we go to bed.I consider this stage 7 but its been like this for over 3 years. I hire a morning cna to help me cut that 4 hours down, when she bathes her, its a godsend. Of course she is in Florida now on Vacation and is out here and there, but wonderful when she comes. Where am I going wrong here, I spend 14-20 hours daily with my Mom,I am a bit jealous I guess, but wouldnt use a nursing home because although its hard, its also what my heart tells me is right, if reversed my Mom would do it for me, am I nuts? lol
Any Time given to your parents is priceless, somegive none, I have heard it from the many cna's I have interviewed from nursing homesso pat yourself on the backand follow your gut, its always right.
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I don't know how much time I spend with my mother. I go in and out of the living room many times a day, spending 20-30 minutes on some trips. I would go buggy if I sat there and watched Game Show Network or the religious channels for too long. Staying too long also invites arguments. Often I think she starts arguing so that I'll leave the room. I often feel guilty for not spending more time with her, but I know that I have to take care of my work and self, too.
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you are doing absolutely great my dear but don't forget you have fun time with friends and family xx
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Laurie, you planned well. I think it is an example of working smarter not harder. There may be a time later that you need to spend more time with her, but that is probably the same time she would need a nursing home or hospice. If this is working, and it sounds like it is, just keep doing the same. If she wants more of your time but is still safe, try a phone call at the same time each day. It is important for her to be as independent as she is able, and for you to not feel bad about letting her be. Kudos to you.
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Laurie, it sounds as though you are doing an amazing job. As long as you are taking care of your mother with the right spirit, that is what matters. Don't even look at the clock. It is a difficult job and don't beat yourself up if you feel you haven't given enough. I had to learn that when caring for my dad. I suspect you are a wonderful caregiver. I buried my dad one week ago after caring for him for eleven years but very hands on for the past year. I would not trade one second of the time I spent with him. Yes, I got tired and yes I stayed anxious for him all the time. But I can look back and know that I did my best for him. You will, too!
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Thanks, everyone. I appreciate the assurances that I'm not doing too bad a job - and I appreciate it all the more because I know you're all dealing with the same thing - or worse. I don't know what I'd do if she followed me around and even knocked on the bathroom door!!

I've started making her sandwiches for dinner (she eats them now - before she'd refuse because I made them) and I just got her some frozen dinners I can cook for her over this snowy 4-day weekend (we're supposed to get a foot of snow starting Wednesday night, so there'll be no daycare Thursday or Friday), and she's got lots of granola bars & applesauce for snacks. She's going through the Depends like crazy because she wads them up, closed, inside her pants - they absorb nothing, but get soiled and have to be tossed. It's ridiculous. If I try to help her put a pair on properly, she yells and shoves me away and tells me to leave her alone. The other night, I found her sitting on her kitchen floor (she must've fallen, but was unharmed), and she screamed at me for trying to help her up. I called my husband down, who can just pick her up like a doll and put her in a chair, and she wailed at him, too. After that, she seemed to forget the incident, and we watched the news and Jimmy Kimmel Live (she likes him) and things were pleasant enough.

Today, she's been alone since she got home from daycare at 2:30, and now it's 8 pm (I just got home from work and then shopping for supplies to get us through the snow days) and I'll be heading down to her apartment as soon as I put the groceries away and make her a sandwich. I cleaned her apartment on my lunch hour today - she thinks she's still cleaning it because it's clean and she never sees me clean it (so it must be her, right?). I just say, "Oh! That's nice!" when she describes a day filled with chores around the house that she performed.

I have a meeting coming up with her care organization (they take her Medicare/Medicaid in exchange for daycare and allegedly, home care when needed, but so far they've denied all requests for that), to talk about what we'll do when she needs 24/7 supervision - which given her recent fall and increasingly wobbly gait, is coming soon. I have 3 jobs, 2 of which keep me out of the house for hours at a time, so I can't sleep in her apartment or spend all day with her. My husband works, too - and I would never ask him to spend time with her that could require helping her change her Depends. That would freak both of them out. I hope the care organization "gets it" that I can't become a 24/7 caregiver AND keep a roof over our heads. It's all well and good to help keep seniors at home, but at some point, it's not what's best for the patient (so much time alone!) not to mention impossible for me as a person who works at least 50 hours a week.

There's got to be a better way. Thanks again! I look forward to any further feedback!
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Laurie, you are doing a great job! I think guilt is just part of the job. Nobody wants to be tied down...and nobody wants to have to tell their loved one what to do. Sounds like we are all living the same life...my MIL has Alz., and kidney disease. Even though I am home most of the time with her, there isn't much talking going on. She is hard of hearing and barely responds most of the time when I try to get her attention. And when she does have something to say, it's always sarcastic. Since I am not her favorite person, my husband tries to take over most of the time. But there are those times when I have to help her with her shower and that is always stressful. I try to give her privacy, but I have to stand outside the shower door and coach her to wash or she turns off the water after she sticks her toe in. She doesn't like to be told what to do, but I have to or she would wash her arms and call it quits. She usually ends up swearing at me during the process. I just have to be matter of fact and ignore the outbursts. After a while, the hygiene issues get worse and you have to deal with the Depends and the messes. Who would want that kind of life? Should we feel guilty for not wanting to deal with it all? Yet, we do. We are doing the best we can. We have had her signed up with daycare 3 days a week since she got here. She probably gets out more than I do. She really enjoys it and it gives her something to look forward to. When she is at home, she sleeps a lot while she is in her recliner and a lot of times she just crawls into her bed. Then we have to wake her up for meals so she can eat and take meds. I think as they get older, they just get worn out and want to sleep. Their bodies are just starting to shut down gradually. Everyone has a different situation and different family dynamics. There is no right answer to how things are done. With your situation, it sounds like you are working hard to do the best you can and that's all you can do.
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Laurie I spend 24 hours a day almost 7 days a week with my mother. Occasionally I leave for several hours on a Saturday or Sunday to spend time out with my daughter. I live in my mothers home so there is non stop care of Mom, the house the property, finances, etc. I work harder now than I did when I was employed. My mother is able to take care of her own personal needs but I basically do everything else. She is probably considered to be moderate in the world of dementia with a 10-15 minute memory. We have zero outside help and both of my sisters work.
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Well! Laurie I have to say that "daycare" agency sounds like it's pulling a fast one - what exactly are they doing to fulfil their contractual obligations? Person-centred care is supposed to be the name of the game, isn't it? And if they have the contract, they also have the responsibility for assessing and meeting her needs. Cheeky sods. You give 'em hell at that meeting!
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Depends: Just unwrap them, put the diapers or diapers with pads, where she usually goes for the depends. Ditch the underpants if she is still using them, and just have diapers (the Depends are good, have colors). Given no other alternative, she will probably adjust quickly. A Friend of mine struggled with his mom, as soon as they took away her panties and replaced with diapers, she just simply started using them. No fuss. (No fuss sounds unlikely for you, but she forgets quickly).
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What Carol and everyone else said... :)
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Big high five Laurie! Sounds like you've got it under control. My dad lives with myself, husband and daughter. I used to feel guilty watching him sit for hours at a time, but am learning not to. I've still got a home to maintain, laundry, yardwork, meals, on top of dad's hygiene needs, meals, pills, doctor visits, he can't drive, etc. Conversation is repeated topics (dementia,) or almost none as he likes to talk about everyone's life's except his. Add 100% fall risk (it finally happened last month, the parent child role reversal, Wheel of Fortune, and 3 feeds of Channel 9 News every day! We're all there in caretaker land rooting for each other! Cut yourself a break, you are doing a super job. My dad pouts when I am not driving him around or sitting on the couch with him and Vanna White, but I gotta take some time for me. Please reward yourself with you time : )
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Thanks again, everyone. I'm relieved to know I don't suck. :-D Today was a snow day - my class (I teach) was cancelled, and her daycare wasn't picking up. I took her the lunchtime meds and microwaved her a pizza and gave her applesauce for dessert at around noon (she has lots of things to nibble on for breakfast). Someone called and she went to answer the phone, and it took too long for her to get there - so whoever it was had hung up. When she didn't come back to the living room, I went to find her - and she'd gone back to bed. I'd been dreading her being annoyed that I wasn't staying when I had to come back to my part of the house and get some work done, so that worked out well. I'll take her food again later and give her the pm meds (which include melatonin, so she sleeps through the night). We'll watch the Olympics until she gets sleepy. Back to work...
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I think you're doing a great job! Don't feel guilty; even caregivers needs breaks. A word about the cats. I know she loves them and they help her pass the time but make sure they are not underfoot so she doesn't fall. I brought home a puppy last year and that was what my sibs were concerned about. Turns out, we didn't need to be concerned; the dog is a wonderful companion to mom, and is very aware when mom uses her walker to move about the house.
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