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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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.
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.
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.
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 :-)
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.
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
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!
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.
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.
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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