Almost ten months not burnt out yet!

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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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