New to caregiving and need to vent.

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We just moved Grandma in 1 month ago. I am so new to this. I am actually an RN, but nursing school was 20 years ago and we did not learn how to live with our elderly grandparents. Our geriatric rotation was 5 hours and then we got to go home. I can do anything for 5 hours. A 93 year old 24 hour confused room-mate is harder.
I feel like the only reprieve I get is when her caregiver is here in the morning for 3 hours (I escape to the gym), or when I am working, which is not all that much of a break!
It's the dementia that is making it so hard. She asks the same questions over and over, and she hardly ever stops talking!! Sometimes I just have to ignore her because I feel like I will lose my mind if I tell her one more time that yes, she did have lunch, would she like a snack? I don't remember her being this chatty when I was a kid. She wants to talk non-stop. If I leave her to do laundry, dishes, dry my hair, clean her room (you get the picture), she gets all weepy and tells us she is in the way and we should send her to a nursing home. She actually isn't in the way (and we tell her this over and over), but we cannot sit and visit with her all day. I have stuff to do! I did remind her of her crochet project and that helped for a couple of hours. And I had her help me with a sewing project I am working on (even that was hard, I asked her to rip out 2 seams and she asked me at least 10 times if I wanted her to rip out both seams. I finally wrote "rip out both seams" on a piece of paper but she was still confused). THIS IS SO HARD.
We know her days are limited and we want her to feel loved and wanted, and she was just wasting away in her retirement community because her mobility has become so limited. She wasn't leaving her room. She lost 30 lbs in 6 weeks. Every time I went to see her she was sitting in her pajamas alone watching TV. We take her out almost every day. Yesterday it was just a walk around the park in her wheelchair, but she got out. Today she got her nails done. I know for the most part she is really happy here. We have kids and a lot of activity.
OK, I feel better. Just needed to vent. I don't have anyone to vent to. My mom is racked with guilt because she didn't want to move her in with her, and my sister has a million kids. So thankful for this forum. And wine.

33 Comments

Welcome to the forums, lesa1919! It is a good place to vent.

You are absolutely right: It is the dementia, and THIS IS SO HARD!!! It is hard (in different ways) whether it is your grandmother or your father or your spouse, and whether it is Alzheimer's or Vascular Dementia or Lewy Body Dementia or some other kind. Caregiving for someone with dementia is HARD!

It sounds like you are doing an excellent job, in spite of how hard it is. I'm glad you get the 3 hour respite in the mornings.

This isn't going to last forever, but it could last a few more years. Pace yourself. Be sure to arrange to take some vacations.
Caregiving is never easy, especially with someone like that.

Would it be possible to get her active in some kind of senior daycare program? It would be a few hours each week that would allow her time to socialize with others her age. Another option is to give her a daily set of "chores" to do. My mom and dad both have severely limited mobility, but they both have chores they do on a daily basis. Dad gets the newspaper in the mornings, checks the mail and is in charge of making their morning coffee. Mom washes their dishes in the morning (usually just 2 coffee cups and 2 small saucers) and makes up a grocery list of anything they are running low on. (I do all the shopping, but for example, I don't drink coffee, so if they're about to run out, I wouldn't even remember to check it most days!)

It's not much, but it gives them both something to look forward to doing each day that they are both used to. Dad used to wake up early for work, and he loves being able to go take mom her morning cup of coffee, while mom loved clipping coupons and making the weekly grocery list.

Another option would be to look into a 'sitter' type person for her. Someone that could just come over daily or weekly and sit and talk with her, or just be with her while she watches tv or reads, or (if she's up to it) could take her on walks around the block while you get things done at home.

lesa1919
Just wanted to say "welcome to the board" and - I am only a part time caregiver to my Mom and by the end of the week I am ready to pass her back to Dad but I do have a teen with special needs and she LOVES to repeat things over and over again. (OCD-constant need for assurance) And it is hard and yesterday I locked myself in a room in the house and just bawled into a pillow and this is my daughter! I mean , I am her Mom and should have better patience than that but --it just gets to you!!!

TardisTT -gave some good ideas-- wish I could give you more. Just know you are not alone and this is a good place to vent. Good luck!! And welcome! (((hugs)))
Welcome lesa1919! First, even though you are a nurse, understand that caregiving is hard by itself but especially 24/7. And add Dementia and it's doubly hard. It's okay to get frustrated, cry, drink or whatever makes you feel better for a little while. You just have to keep reminding yourself that you're doing this for a good reason and you're doing a great job, and that your grandmother can't help it. She is not the same person she used to be. She sick in the mind now and can't control herself. If you need more help, get it. Try not to wait until you're ready to pull your hair out. And like it was suggested above - see if you can get someone to come play cards with her, watch tv, take her for a walk, read a book to her every so often, take her to the library. And think of something in the house that she can help out with - like setting the table, folding the towels, watering the plants (i.e. easy stuff but would make her feel helpful/needed). It's hard on you and her - but it's only been a month. You will get better at dealing with it - just be patient and remind yourself you're doing the best you can and it's much better than the nursing home she was in. Good luck!!
Oh Lesa U are doing a great job. I'm so sorry it does change your life. your doing great I just wish my mom would leave the building. But your getting her out and clearly it is the dementia. I'm a pediatric nurse. Don't know a thing about older people. I had to buy a book. It's called "How To Care For Aging Parents" take care sweetie
God bless your sweet heart for doing what you do. until now I thought I was the only one that goes through the constant excessive talking all day, my husband starts when he wakes & only stops at night when he finally goes to sleep, I just do not know what is causing this, if it is a phase of dementia but I know at times it just drives me crazy & I am on meds to keep me calm. I read all this " give them something to do" does not work for me 45 minutes of describing how to put the new garbage bag in the trash can is overwhelming to me, and every little chore is like that, he will no longer read use the laptop not a thing to keep him busy even for 20 minutes. we must go through 50 different subjects, that mean really nothing all day long. I think they just do not want you to forget they are there and want your constant attention, and God forbid if I do not answer his question immediately, it becomes catastrophic - even while I'm trying to swallow a bite of toast without chokeing on it.
Lesa -one thing that should definitely help you is this website! It's so incredible to have a "cyber-support group" that you can check in with anytime, 24/7 - I have found so much loving advice and commiseration about being a full-time dementia caretaker right here. It's been extremely helpful. I've also been amazed at how many of us there are out there! We're everywhere! There's something a little bit comforting about knowing that so many other people are going through exactly what you're going through, and that they're so willing to answer your questions and be supportive of your efforts. I think this is probably one of the most challenging things I've ever done in my life, but once my mom passes I know I'll feel so good about having done it. One thing I've found that helps is to keep some low music on in the room - like soft 'new age' type music, or light classical. Even if the tape repeats a few times it won't matter. And don't forget to breathe! Good luck sweetheart.
Oh, wow, twopupsmom, that sounds tough. I am trying to think of something that could help you. Maybe give him an old fashioned sand timer and tell him he needs to practice being quiet until the sands run though. Tell him the doctor ordered that he take time out from talking to give his voice a rest. Maybe this will help him learn how to be still and quiet for a bit. And then you can push it to two passes of sand.(a flip) If nothing it may help you get some food down without choking. I would say it is doctor ordered. This could be a totally ridiculous suggestion but what the heck, just thought I would throw it out there.

I am sure you have tried music.

There is a toy parrot that mimics your words. It is fun to play with. Maybe get him one and see if it will amuse him long enough and perhaps fill the need for constant talking without having you right there --again-just throwing it out there.

Good luck!!!
I thank God every day that Mom can, and loves, to read. I set her in a cozy spot, with water,tissues,the phone, and her book, and that's my time to get things done and get a little rest. The rest of the time she just wants to sit and chat (and smoke). Everything I say must be repeated at least 3 times, and then she will forget it and ask me again, an hour later. Sometimes I wish I could borrow her hearing aids, just so I can turn them OFF.: )
Dear Lesa,
I understand the frustration and you came to the right place!
My Dad had dementia and he had a limited ability to focus on any one activity and was obsessed with checking his watch and stating what time it was. I found his impatience annoying in the beginning but I eventually found things he liked to do for short periods of time...we used water colors and painted, played a lot of card games which would start off as a game but would end up with him making up his own game. This drove my Mom crazy and she would scream at him. I found it funny and played along with him letting him take the lead. It took awhile to be able to accept it was the dementia that caused the repetitive questions and frustration for him when he couldn't verbally express what he meant to say. I think remembering that they are losing themselves makes it easier to be patient. I once told my Mom to think of him as a stranger she just met because long ago I learned we are often harder on our own kids then we would be on a visitor or someone else's child.
You will find peace within yourself and really let yourself enjoy the time because it goes quickly. Find your inner humor and find her humor if possible. Crazy little faces and exaggerated gestures would make my Dad laugh. He was not one to laugh very often so when it happened it was awesome and a memory I will never forget.
You need to take breaks when possible without guilt! We all have lost our tempers and yelled and wept with exhaustion it is ok. If you focus on a positive moment each day I found it gets easier.
Hang in there and venting is critical so you won't lose your mind!
Hugs and prayers to you and your family!

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