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I work 40 hours overnights at a residential home for disabled individuals. I am also my mother's 40 hour a week paid caregiver during the days. I can take care of all of her physical problems and help with ADLs and all that is required to keep her physically healthy. She is wheelchair bound and has some dementia. She's 84 and lives with me. I'm single and its just the two of us and a cat. When I get out of my overnight shift, I'm tired and need sleep. She has been lonesome all night long and wants to chat my ear off. If I do go to bed, she yells at me a lot to keep conversation. I am able to do both jobs well, and while I'm working overnights, I have a relative who's "on call" for mom, if there's a problem, so that's okay. But the issue I'm talking about right now is this: I am a quiet type of person who has my own hobbies and interests, which I like to engage in when I have any spare time. They alleviate the anxiety I have from working with mom. Mom only plays solitaire and does crossword puzzles, which are her only interests at all, unless she can get me to play games with her, which I really don't like to do. I don't like to watch much tv either, which she wants me to do with her for hours on end. We don't share any common interests. I feel guilty and end up playing the same games with her over and over and watching shows that don't interest me. If I spend time doing what interests me, she keeps asking me if I ever plan on coming out to the living room to be with her. I don't go out much with friends, because she wants me around all the time. She gets bored frequently and depends on me to keep her "entertained." I get tired and depressed a lot and don't feel like doing much more than what's expected of me, at times. I simply feel like without me, she is bored to death, and I even feel guilty for not wanting to play with the cat! Am I doing wrong? I try to encourage her to find things to do, but she only wants to do things with me. Help.

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I understand I'm doing same thing and seeking outside agencies for help to get some physical and emotional excersize with transportation. I don't think it's selfish to want your own life while caring for an aging parent. The yawning the boredom.I can't be an a care and activity director 19 hours a day seven days a week. Assisted living and nursing homes have several people working shifts. Where's the help?
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The only thing you are doing wrong is attempting to work 80 hours a week. Seriously, cut back on one job or the other, you are killing yourself.
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All good suggestions but your mother has to be willing to participate in activities and associate with other people. My mother wouldn't allow anyone else in the house and flatly refused to attend the local seniors centre because "it's full of old people" ... she was 85 at the time.

She spent the last three years of her life in a NH with wonderful staff and activities all day every day but she refused to participate, hiding in her room, moaning and whining, plotting her escape to some 5 star resort with servants, meals cooked to order and room service and screaming down the phone at me every day until, on the verge of a nervous breakdown, I changed my phone number and made it unlisted. There are so many interests and activities but you can't force someone to participate.

My gut feeling is that she's got you just where she wants you so why should she be bothered with anything or anyone else. If you can, you must try to change the situation now as, with the progression of dementia, it will only get worse over time.
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What about daycare a couple of days a week, it would give her something to do and allow you to sleep/focus on yourself.
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Pizza and dominoes sounds like a pleasant evening. Enjoy!

I am so very glad to hear that you are getting paid for some of the hours you care for your mom. Many people ask if that is possible. It is good to know it is in Maine. Is this part of an Elderly Waiver program, funded by Medicaid?

I do understand your need to work that other job. We all have to eat! I'm sure you do it well, and you have covered the possibility that Mom will need help. You are a highly responsible person. My main concern with that would be your 3 hours of sleep those days. All mothers of young children get by on 3 hours of sleep once in a while. All caregivers of persons with dementia get by on 3 hours of sleep once in a while. We all mostly survive it! But to have this recur on a continuous basis is taking its toll. Remember that sleep deprivation is a torture device. Lack of good sleep is especially hard on persons with depression. (I know these things from personal experience and from seeing a psychiatrist and sleep specialist.) You do need your job. I understand that. You need your sleep, too. Can cousin cover a few hours on those days? I don't know what to suggest, but if you do get some volunteer help, perhaps you can arrange it for days when you need a few hours to sleep.

A couple of us suggested day care programs. I had a wonderful experience with that for my husband. The program had a wide variety of participants. They also had a separate program for persons with dementia (my husband didn't need that yet.) The nurse read a chapter from a book every Monday, and that was my husband's favorite thing there. Also they put together slide shows of people's vacations. He enjoyed that, and was very proud when his pictures were featured. He did not like the crafts, unless they were making something nice he could give me, so he sat in the quiet room and read during those sessions. He enjoyed the outings -- to a restaurant, a ballgame, a zoo, etc. So when we suggest this option we are not suggesting a pre-school setting. If you do not have any adult day programs in your area that treat the participants as adults, that is too bad. It might not hurt to double-check. Perhaps there are some in addition to those you know about for your other clients.

I am thrilled to hear you are on a list for counseling -- not that you have to wait, that isn't such good news -- but that you are addressing this need. Good for you! You deserve all the support you can get!

When I said that your mom is being short-changed, I did not mean that as a criticism of you. Persons with dementia often do best when they do have a "social director" for part of their days, but that doesn't mean that you personally have to take on that role.

I had a volunteer visit my husband for a couple hours twice a week. Sometimes I slept those hours, and sometimes I went out. She was his social director for those days! The spent a lot of time looking through scrapbooks and my husband telling her stories from his life that I'd heard a million times! I certainly hope the economy improves in your area and volunteers once again become available to you.

Is mom being followed by a doctor who knows a lot about dementia? There is no cure, of course, but sometimes symptoms can be improved.

I wish you and your mom well. Keep in touch here and let us know how things progress.
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Goodness, I don't know where you live but here in Canada nursing homes are strictly regulated and inspected often. Some are not so nice but I was lucky enough to get my mother into one out in the country, family owned and operated for 50 years with wonderful staff who went above and beyond. If you do indeed look at NHs forget those owned by corporations as they only care about the money and look for a family owned and operated one.
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Wow. I was going to jump on board and say "I know what you mean!" until I read all the responses. BIG HUG liverlips486. Sounds like you're caught in a bit of a trap, and it never really matters how we get into these traps, it's more important to find a way out.

Both you and your mother deserve a good quality of life; when I took the course on caregiving here at the local Alzheimer's Society, all the advice for caregivers to look after themselves really resonated; most of us have a capacity for giving that can easily and unintentionally become unbalanced. For example, I can plan to curl up with a good book for an hour, but if either of my parents (who both have dementia) requires something from me, then my cherished "me time" is the first thing to fly out the window.

I had a mini melt-down last weekend because the one day I had planned for myself was usurped by the fact that my sister's husband landed himself in the hospital; she couldn't do the weekend shift and... well, we all know the sacrifices involved! But I took the opportunity to think about solutions, and that solution might be finding a person in the area who can take over from time to time. I don't even know if this is possible, but I'm going to look into it. Baby steps.

In any case, I often feel the same guilt as you are describing; I sense that my parents are not stimulated enough. My mother demands all of my attention, and I worry that my father is not getting more (he's the quieter of the two). I resent having to "entertain" her at times, because - like you - I'm very self-sufficient and never bored with my own company. I keep thinking, why can't she be more like me? But she's not perfect, and I'm not perfect, and nobody's perfect and we're all just trying our best.

It sounds like you're an amazing woman with a great deal of strength, who is just worn out. It's OK to be worn out. A few days off might be just the cure, if you can find someone to help out. It feels hopeless at times, as I've discovered in the last year. Now I manage my time carefully to ensure quality breaks, and this has made a huge difference. Once my batteries are recharged, it's like I'm a new person. I sincerely hope you can find a way to give yourself a break now, and come up with a plan for the future. Perception is everything!
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I know the feelings you have. I played this same role for seven years. It is difficult. Mom didn't want to go be around "old people" so the senior center was out ! I took her once and she was very impolite (to put it nicely) to the staff and "old people" She was in her 80's. People always gave the same old answers and so on and so on. I am much like you, except married and my husband stayed at our little condo for the first 5 years (no one thought mom would be able to live so many years with stage IV cancer) then he moved in to help as things got worse. I work and worked 60 hours a week as a special ed teacher while taking care of mom and gave up me. I resented it but still feel guilty that I didn't do more. How could I ? I don't know but it seems like I should've. There wasn't money to bring in outside help, and that is a precarious situation in itself. How to trust strangers in the home. Anyway. There are not any simple answers and no one here should be judging or criticizing. The truth is many of us have had to tough it up and out and work through all the anger and guilt etc. My best wishes for you. However, it certainly seems with so many of us older adult children caregivers there couldn't be some sort of co-op with other caregivers to share duties errands etc. socializing, with in our own communities. Like young mothers with little kids do. Hmm.
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I'm reading this question and all these suggestions and marvelling at what few crumbs of privacy and self respect we caregivers are willing to settle for.
I've moved beyond being my mom's caregiver in my home (10 years) and have had her settled for the past 16 months in a very satisfactory assisted living facility. Life improved for me considerably and though she would deny it, her life is as best a 94 year old woman with dementia could ask for.
But my life still revolves around her endless demands and needs. I manage her financial affairs and drive her to medical appointments. I bring her to my home for dinner every couple weeks. I call her every evening I am not at her side.
I visit her 3 times a week for at least two hours each time. (30 minute drive each way). I shop for and deliver snacks and new clothing. Do her nails. She wails each time I arrive how she has been waiting all day and begs me not to leave. I frankly am tired to death of being her personal slave.
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dear magdalana I hear you. As caregivers we compromise and sacrifice so much of our lives and still beat ourselves up for not being good enough at it. The truth is that most elders would take as much of us as they can get. I feel like my mothers entertainment team, accounts payable, chef, medical assistant, counselor, cheerleader, public relations, hairdresser, personal shopper, maintenance dept and yes, personal slave! 12+ years and I've exhausted my shelf life. Demands keep growing, I keep dying a little every day. There's no answer because even in LT, responsibilities remain to make sure they are properly cared for. Those of us with compassion and a conscious will not walk away but it will clearly be the hardest job we've ever undertaken in our lifetime. Never going to do it to my kids.
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