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To be totally honest I'm somewhat amazed that Mom has made it this far, in fact health-wise she's probably as solid as she's been in the last three or four years. She's bed-bound and always will be, which presents its own challenges, but we've established a pretty good routine that's been working so far. Of course when you're FT caring for an 83 year old woman who's partially demented and bed-ridden it can get tough, but to be honest as hard as it's been IMO I've managed to hold things together fairly well.


For the first several months the biggest problem I faced was my inability to to find anyone to watch after her when I have to leave for any length of time. She has three granddaughters who lived close by but they've been less than useless. In fact, on the rare occasions when they have sat with her it was honestly more work for me than it was worth, as any little thing caused them to become totally unglued. BTW, we're talking about 28, 22 and 18 year old women here, not children. I'd leave and mere minutes later they'd be peppering me with text messages..."grandma is saying weird stuff", to which I'd reply "yes, if you visited more often you'd realize that's the new normal". Over the last few months they have scaled back their visits a lot, always giving me stupid transparent excuses but to tell the truth in a way I'm almost glad, as I don't really trust any of them in a crisis anyway. They'll regret not taking a more active role with their grandmother when the will is read, that's all I need to say right there about that.


I have someone who does sit with her on occasion and it's worked out well, although she isn't available all the time. Getting away from caregiving once in a while is vital IMO and although I haven't been able to take any sort of real break, even a long evening out does wonders.


I don't know if anyone else experiences this phenomenon but Mom almost seems to have a sixth sense that buzzes whenever I'm at my most relaxed or engrossed. For example, if I dare to take an hour nap or if there's something on TV I really want to watch, that's when she's suddenly too cold or too hot or hungry or thirsty or spills her water on herself or (shudder) "nature calls". For example, I'm a baseball fan and last season my favorite team made the playoffs. During every single game of a five game series she "had a movement" in the fifth or sixth inning like clockwork and on the off days, nothing. I swear it was like she knew.

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I can relate to the sixth sense you're talking about. It sure feels like that here too. :)
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It's been my experience after 3 1/2 years of caregiving that you're wasting your time waiting for family members to help. All it does is cause you a lot of angst. I'm not mad at them anymore, I just feel sorry for them. What goes around comes around. May be a little hateful but it's much easier to deal with everything. As long as you can get some break, enjoy what you can, sometimes I just have an hour so I sit at the coffee shop and read my book, pretend I am at the beach where I would love to be, and go back refreshed and ready to start another day. Doesn't always work, especially when family members are at the beach on vacation. Oh well, good luck, keep your chin up.
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dmanbro: I applaud you! No, seriously, you are one of those VERY rare individuals who've been able to keep it together. In all honesty, though, caregiving is an emotional rollercoaster ride, so don't be shocked or saddened when you need a reprieve.
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NY DIL, Your advice for involving the granddaughters is sound, although I would not necessarily characterize dmanbro's regard for his nieces as "vindictive". (Presumably his mother made her own decisions regarding her estate and will.) Rather, he may merely be describing them realistically and in matter-of-fact terms. My own beloved brother is of little to no help and could be described as "useless", I suppose, but I don't love him any less. He is simply not equipped to deal with the gradual loss of our mom. I think it's painful for him, and he doesn't know how to intervene. Some are not cut out to be capable or effective caregivers.
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You do deserve a pat on the back for these ten months. I do think you need to consider other poster's cautions about how long people can live even being bed bound. The average person with dementia lives 12 years.

You sound vindictive toward her granddaughters. You are being terribly harsh on those three young women who don't have a clue and neither do you. You're figuring things out and hardly know what you're doing and yet you expect a teenager and two twenty somethings to? I liked the suggestion from another poster about inviting them to do grandma's nails. They can also read to her or go through photo albums. It's hard enough for grown women to figure out what to do when the nonsensical babbling starts.

Teepa Snow videos are terrific. Everyone who visits grandma should watch at least one. Help the granddaughters now and they will be better women for it. You may need one of them later in your life. But if you don't help them acquire the skills you're complaining they don't exhibit, then they will always disappoint you.
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You have my admiration. We looked after my dad, but have had to get help. It becomes increasingly difficult as others here have said. They lose their ability to have a conversation and often in their own little 'selfish' world, they know, as you say, want attention. My dad would also have a movement when he is left alone for a short while, and he knew when either one of us were out. Eventually it becomes 'depressing' feeling tied down. Good luck to you, you sound so positive. Grandchildren are less empathetic and I put it down to their youth and lack of understanding, it is difficult enough for the older ones.
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Good to hear a positive about caregiving - am so glad you've been able to cope with the challenges. My cable TV has a "playback" feature that helps me loads...lol. My Dad is particularly good and starting a conversation just when the crucial movie scene is on....I use that feature a lot these days.

I know a lot of folks have commented about writing people outta the will - my view of it is to leave it be. The people in my family who haven't lifted a finger will have a couple of thousand dollars when it's all said and done,,,,they'll blow through that like it's nothing. I'll have my share too, but more importantly, I'll have peace in my heart forever that I did the right thing for the people I love. Karma, baby.

Pat yourself on the back big time! You're managed. It does get tougher, but you've made all the right moves to keep it from overwhelming you.
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I have compassion for your position and feelings because of similar experiences with my now 98-year-old mother over the past 12+ years.

And based on my experience I would caution against continuing such intense focus on others.

It's easy for resentments to pile up, perhaps added onto a stack of bad feelings from years past. The mind naturally is drawn to such concerns as your mother taking unfair advantage of your commitment to her. Even if it's true her granddaughters are fickle in their attentions to her, isn't that typical of young women in general?

The best caregiver for a mentally and physically disabled elder if someone who has previous experience with that type of challenge. Perhaps someone who cared for their own mother who since has passed away. If their heart is in the right place, they will have compassion not only for your mother but for you as well.

Meanwhile, train your mind to let go of resentments and focus on something which develops your own inner strength and peace. Pulling yourself away from the dark side is the best prevention for burnout.

Good luck and God bless.
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Dman, its called the Murphys LawOf Caregiving...that sixth sense. Alwau happened when i was watching tv or going down the narrow hallway...
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ferris1, not all kinds of dementia involve the loss of speaking ability. My husband spoke coherently until the day he died.
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Dimambro, Hopefully you can keep this attitude. I'm going on two years. I recent that out of 4 children its me. I was the oldest and the one who stayed in the same town. I have always done for my parents unlike my brothers who can't seem to call or visit regularly. My Mom goes to daycare 3x a week. If I didn't have this outlet I'd be nuts. Part of my problem is my house is not conducive to someone who has Dementia and slowly losing ability to get up stairs. Once Mom can't navigate the stairs (i have 3sets ) we won't be able to get her out of the house. Then, she will need to be placed somewhere. If Mom was bedridden she would not be here. Good for you that u took her in but...there maybe a time you burn out. It just comes with the territory.
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Ferris, Mom is like this now. Just can't get out what she is thinking. But, she was talking to her imaginary friend with no problem. She gets slightly frustrated but just says forget it. When you try to talk to her, her answers have nothing to do with what u just said.
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Does your area/state offer a Family Caregiver Support Program? There may be some additional resources for some respite help for you that might be more reliable.

I'm so sorry about the granddaughters--I'd call them clueless, but I think they are more ignorant about dementia and are responding the way many people unfortunately do. They don't like what is happening, they are frightened by it--so they stay away. And they don't understand it. I wonder if they would be willing to watch some videos by Teepa Snow on YouTube? She explains dementia so well, and with such humor, that maybe they'd respond better... If only they would realize that later they will have regrets for the things they didn't do more than for the things they did do.
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Wait until you've been a caregiver for 10 years. It doesn't get any easier with dementia, however, she will lose her ability to form words into sentences (like my husband now), and then she won't be calling you!
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Congratulations to you!! You deserve it. For me, caregiving was one of the most challenging but rewarding thing I have ever done. Once you have your routine down, it does make life easier. Maybe if you suggest to the granddaughters that grandmom would like her nails painted, hair done, this would be something that they could do. Might be worth a try. When I tried to watch a TV show at night I had the same problems. Instead of going to another room, I would watch in my moms room. Ask her to watch my show with me. She would usually fall asleep but I did get to watch what I wanted. Sometimes I think she just wanted me near her. I would do it all over again in a minute if I could. Take whatever help you can get even if it means you still have to stay in the house. Best wishes
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I am almost at the end of my second year living with my mom. I asked her if she would consider changing her will to reflect those who "cut her off while she was alive." I see nothing wrong there. Hope you stay with that good attitude. My only complaint is I feel resentful and stressed having it all on me and not being able to just take off and do things I would like to do.
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I'm 2 1/2 years in to caring for my mom who also has CHF and only mild dementia when she moved in. I'm glad things are going well for you but like the other post this is going to be a process and as the dementia advances you will wear down quickly. I too have no help even though I have 9 siblings all with grown children who could help but don't it has been a year since my husband and I had a break together keep a good relationship with your current respite care person because they will become vital to your sanity. I have made the decision that is what I am going to have to do instead of relying on my hit and miss assistance from my family You should be commended for taking this on because it is not an easy task. Hang in there :-)
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It sounds like the grandchildren are not yours, which means you have at least one sibling. I hope you have taken the time to be sure you have all the legal authority to make decisions for your Mom. You do not need meddling uninvolved siblings. You are doing a great service for your Mom, but take care of yourself.
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dmanbro, thank you for the update, glad everything is going smoothly :)

I remember your previous postings from some time back about your Mom and her rehab and how her Grand-daughters were clueless about the needs of elders.

Did your Dad watch sports? Maybe your Mom learned more about sports then she is letting on, and knew just the right time to interrupt. It's call revenge for not helping around the house if the spouse was glued to each and every sport event possible, leaving Mom to do housework/yardwork by herself, thus no time for her to watch her favorite shows.
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Well. I'm happy that it's going well for you and mom. I'm wondering if you have any long term plans, as this could go on for at least 10 years. My mom is 93, has CHF, dementia and is wheelchair bound. she is in excellent general health and we see no reason that she won't make it to 100, at least.

did your mom change her will, based on her grand daughters' lack of caregiving skills? That's certainly her right. but sad.

I hope that you've set up a caregiving contract so that you are compensated for your caregiving and not relying on mom's estate.
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