New to caregiving and need to vent.

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!

Learning to breathe has helped me a lot. Sometimes I'm anxious from a tough day and the breathing helps me to focus on driving so I don't get into an accident. My husband had a hospital stay which started with colitis and then ended up with depression. He lost over 20 lb and his anemia was so low he had to have B12 shots for 6 months. When he came home we had an aide for 4 hours a day who helped with meals and allowed me time to go shopping and have some time for myself. One big problem was insomnia, and he was given several medications for that. Recently although he was a college professor, he found himself unable to read, to watch TV shows for more than 10-15 minutes because he couldn't follow what was happening. He had trouble following conversations socially, but does better in small groups at our local community center. Music has been helpful as we play recorders, and our group plays concerts for the center's art shows. As we age, we all have problems losing our place in the music or forgetting where to go when a part is repeated. He is always threatening to stop playing saying he's not a good enough player, but the group is very supportive. Eventually, we saw a neurologist and he was put on Aricept to slow the progression. One thing that seemed to help was stopping an anti-depressant that seemed to make him very passive, laying in bed most of the day. His psychiatrist does clinical trials for various pharmaceutical companies, and we are about to start one soon. This is a medication, not yet approved by the FDA, but is supposed to STOP the progression. It's a bit scary to be a guinea pig when you read all the side effects, but we'll probably try it.

Welcome, Lesa, and vent away. My mother goes through spells when she does the same thing -- chatters and talks endlessly. It can get on the nerves. Today I was trying to read a follow-up on my tax return and she was talking in a low voice about something that wasn't important. I had to read the letter over and over, because I couldn't concentrate on what was written. I think I followed the instructions on the letter right. At least I hope I did. :)

I try not to stop her when she is in a chatty mood because I know she gets lonely. Trouble is that I start feeling rattled. But then I feel terrible if I tell her to stop talking. So I just let her talk and try to tune her out if I'm doing something. Sometimes I wish we had an on/off switch on our ears.

It sounds like you are a very caring granddaughter. Your grandmother is a lucky woman. She probably knows that.

my mother is similar-she is in her 80s and iam a single man in his 50s taking careof my mom since 2010-my dad died 2008, lost job in 2009, got rid of everything, moved in with my mom-was told it be more economical for the household than to pay for a person to come in and take over-used to go to ymca when i worked but i had to cut that out all together and just walk in neighborhood for an hr. and do stretching and abbreviated pushups-lost 13 lbs. dont have much strength like i used to-have to do a better jjob taking care of mom though-feel sometimes i have let her down-went to great clips to get her hair trimmed, washed and styled and then a trip to mcdonalds-i ttry to get her out of the house when i can=she will ask me if i have my headlights on -she will ask me that every few minutes-i was assuming that she was cleaning up herself when she went to bathroom, but i was wrong-she sometimes has poop on her leg and i have to get a pan of water and soap and rag and wash her-i am new like you to this-i dont know what was going on-my dad had cancer and was concerned about him and she was having memory problems then-i get frustrated in more ways than i know-i have help for 4 hrs. on tuesdays and if i feel like it on sundays-lately i havent been up to par-thanks for listening to me talk

Lesa,

Bless your heart.

I too am a nurse. I cared for my dad in my home for 5 years and other than knowing all about his medical conditions and what his blood tests revealed I was a daughter first and a nurse second. I think that's just the way it is. I was able to troubleshoot and clean and dress his leg ulcers but my emotions were that of a daughter, not a nurse. When I'm at work there's a professional distance we don't have with our loved ones.

And while I cared for my dad in the past 5 years I cared for my grandma in her home 17 years ago while I was in nursing school. I was there weekdays and my cousin was there nights and weekends. Reading what you wrote brought it all back.

The chattiness is from the dementia. As you know, dementia is a disease of the brain and while we have filters, your grandma may not have a filter anymore between what pops into her head and what comes out of her mouth. My grandma had Alzheimer's and I can't tell you how many times I cringed when we'd go out. She'd comment on the waitress or other customers. I had to ssshhh her all the time.

I think your grandma's in good hands with you. A busy, bustling house may elevate her mood and make her feel a part of the family. I know how hard it is and dementia would test the patience of a saint so don't be too hard on yourself.

You can hire a 'sitter' through an agency. This person literally comes over and just sits with your grandma and talks (or listens as the case may be). I don't know if something like that is in your grandma's budget but if it is it would be well worth the money. No, you can't sit and visit with her all day. I don't remember if your post said how long your grandma has been living with you (maybe I have dementia too!) but if it hasn't been too long give her and yourself a chance to get into a routine. She may be chattering away out of nervousness. The suggestions about finding something for her to do are good ones and there's nothing wrong with plopping her down in front of the tv if there's something on that catches her interest. You don't have to entertain her. Can she fold towels and linens? Just keep washing them over and over and bring them to her to fold. Can she cut up green onions? We did this with my grandma. She wasn't real capable of cutting up much but green onions were a snap for her and she felt needed. We had a lot of green onions! How about getting some Lysol wipes and asking her to wipe down the kitchen? A task like this would take my grandma an hour and that's how I cared for her, in increments. One hour at a time. And what might have kept her interest on one day may not have kept her interest on another day so we were constantly looking for things to keep her busy. Photo albums are always a good distraction.

My grandma was a talker too. I remember the day of the O.J. Simpson verdict. The entire country was on pins and needles, me included, and I was glued to my grandma's tv. She kept yammering on and on while I was trying to listen to the verdict. It's funny the things we remember.

With dementia you have to be creative. We can't expect our loved one with dementia to completely be a part of our world anymore so we have to crawl into their dementia with them. Oh! Junk mail! I would get my grandma's mail and give it to her and that would occupy her for a while (after I removed bills and things she could obsess over).

Good luck! I only found this site a few months ago and my dad died almost a month ago. I so wish I had found this site sooner. You're in good hands here.

Oh wow. I am overwhelmed by the support and encouragement. Thank you all sooo much for taking the time to comment on my venting post. I am taking all suggestions into consideration and I will try them all!
I am trying to think of things to keep her busy, and I would love if I could give her a chore (she says at least 5 times a day, "Is there anything I can do sitting that would help you?"). Along with dementia she also has pulmonary fibrosis and is attached to oxygen at all times, She can't take more than a few steps without becoming hypoxic. It's definitely a challenge.

Wow you know its dementia when you start reading what others are going through. My mom constantly asks me the same questions too. She also wants to be with me 24/7. I don't mind. But sometimes I wish I had time to run to the store without her and enjoy a short time away. Its very hard to get that in my family. Everyone is too busy. She is very sad that all her friends are pretty much deceased now. Friends and family are gone and my dad died in 09'. She misses my dad so much and gives up on life daily. I think if I could find her a friend her age it would help. They would have things to talk about from the past. I know how she must feel with todays world and not the things she is familiar with. We live in Garden City, Michigan. She is 85 yrs old. Would be nice to know someone that is exactly like her.

To Justv389 - thank you for such a wonderful response to Lesa - you are so right about everything! Especially regarding how we are often a lot harder on our own family members than 'strangers'. Thank you for your honesty. Much of what you said in your answer to her helped ME tremendously.
Take care - and be well - have a good weekend - enjoy the spring!

My mom has always been a non-stop overbearing talker since I was a child. I'm super shy cause I never got to speak. Now she is older meaner, wont stop talking for a minute. Accuses me of everything that goes wrong. And just complains about every thing. Everything. Dr's don't want to see her, She's only 75 and does not want to walk or do things.I just breathe and kiss her but and put a fan in my face, cause she's always cold from being obese. And Im always hot. Just venting again.

I have the opposite problem. I like to talk, and my husband no longer wants to listen. I guess it makes him uncomfortable when he can't follow what I'm talking about, but I need to have someone to talk to. He tries to shut me up sometimes, and I say, "Can't you just let me talk? I think I end up talking to myself a lot more lately. We try to get out to the community center so I can see some people who enjoy talking. It's great to have a place like this where you can vent when you're home alone with a non-talker.

booper37 I am just the opposite here, husband talks all day nonstop, when I try to tell him any news about family etc, he just cannot get it, what I crave is someone to converse with again on today's news, opinions, like dislikes, but I feel like I am being shoved down the bottom of a cone and sometimes a little fuzzy in my own thinking because I am so wrapped up in his world, where nothing else is important except what he is saying.

I thankfully can leave my husband alone for awhile (used to have an aide when he was just out of the hospital). I use this time to meet a friend for walking in parks and we're able to chat about things he no longer cares to discuss. We also visit my son weekly and I can talk with his wife while the men play pool.

Booper 37 I can also at present leave my husband alone for a bit, but my friends work so I ride a little in the car & talk to myself. he has one daughter a RN 25 minutes from here, she sees him 3 obligatory days a year, never calls him, so I do not have that outlet, but I have FaceTime on my Mac & my daughter calls 3 times a week to talk to my husband (she is currently in the UK) and then calls me early when she knows he will still be asleep to cheer me up & keep me going. And a friend who emails me every morning, so I am OK

twopupsmom that's what I mean my mom is the center of attention. She talks talks and when you do she turns her head, and then a day later, she says did u say something. She never stops. And the tv is full blast and she talks to it and I am running out there and saying are you ok. She's fine talking loudly to the TV. I really am trying to stay in the room a lot cause her dr. says she can do everything and is just lazy. so I'm getting skinny and she is getting bigger being by the fridge. She's still the boss though she tells me what to buy. I usually say they didn't have it if she wont go so that way she can loose weight.

Booper37 hang in there sweetie man it sound like it just gets harder and harder. I really did not want to spent my late 40's like this. But oh well. She gave birth to me. You sound like me though. I have no where to go also. no one to help me. And the constant complaining that is not true. Sometimes upsets me. I get 2-4 hrs of sleep while she gets 12-16 hrs. and she says she never sleeps. But you are doing a good job, always remember that. That's what I have to say, I could be in Hawaii but I chose this. There was no one else. And she said if she was in a home she'd haunt me for the rest of my life, that sounds scary.

What I don't understand is how you came to be the one taking in your grandmother and not your mom/dad or their siblings?!

Your mom says she feels guilty for not wanting to take her in....she should be ashamed that she has dropped her responsibility onto you! You should not have taken it on, but since you are, find out from your mother what she is willing to do to help out!

Lesa,
Sounds like you are doing a wonderful job!! It is so difficult when you are the only caretaker. YOU need to take care of YOU too!! This is very important! I would call your State or city , Center for Aging, Church or even the VA or VFW, American Legion. There are programs out there to help. To come in and sit with
her for a while. God Bless you, you are doing a great thing. These facilities, nursing homes do not treat our loved ones as well as we would. Hang in there.

Seabean61, My mom lives with her boyfriend and he said "no parents moving in". His mom is elderly too and needs help, so he decided neither, rather than choose 1. Plus my Grandma makes my mom crazy. I have more patience that way. I don't think it would have been good for either of them.
There is a bit of resentment too...Both my Mom and my Uncle's retirements have been postponed because they have been financially supporting my Grandma for the last 3 years. They set her up in a beautiful retirement community with a HUGE rent. Now that she is requiring more and more help, she was not using the facilitiy's amenities, AND they were having to pay more and more for a private caregiver to come in. It was totally draining them. My Grandma also wasn't thinking about the repercussions of some of her actions. She wanted a burger for dinner, so she didn't eat what the facility was serving, called her caregiver at 9pm and asked her to bring her a burger. That burger cost my mom $50. It also wasn't cheap when my Grandma was curious to see if her Life Alert worked in the game room. It did. $350.
Anyway, I am doing this for my Grandma and my Mom and my Uncle. They send me money to pay for a caregiver to come everyday to help with her shower (I do it on Sundays, I like to keep an eye on her skin and such). They said they will send me more if I need more help, but I am trying to hold out for a little while. I will ask for it when I need it.
Anyway, That is my story.

Who is taking care of your mother's boyfriends mother? Does he have siblings? It is difficult to care for an aging adult, but having them living with you is an added burden. I know caregivers in other states that take care of the elderly, then go home. They have said that they probably could not do it if they had to live with them. Someone needs to be appointed as a guardian to your grandmother who makes all the financial, medical, etc., decisions for her since she is creating problems like you describe. My suggestion around this selfish boyfriend of your mother's, besides dumping him, is if he has siblings, as your mother does, that they have a family meeting to discuss sharing "in-home" care of her for a certain amount of time and that way, no everyone gets a certain amount of time to continue have a life. If they are not willing to do that, then there are much more selfish motives behind the excuse of it's one or none. I can't help but wonder whether or not your mother has given any thought as to who will be taking care of her when she is in the same condition that her mother is in? You? If she is draining her savings and your uncle, then who will pay for her care? You? You are in a place that I don't think you should be placing yourself at such a young age when you need to be living a full life. These are things that the children have to work out, NOT the grandchildren. I think that you are remarkably self-sacrificing and I think that it will eventually start getting to you and cause some resentment between you and your mother and uncle over time.

Instead of trying to put blame and responsibility on others I think lesa1919 is doing one heck of a job. She is no different than most of us on here. She would rather take care of her Grandmother than leaver her in some facility where she knows she will not get the best care....but will pay a fortune anyway.
I have been in her shoes...no help no place to go. If your having a bad day, just remember...It is the disease. Try and think back to better days. :).. I treasure the days I have with my father, good or bad! Good Luck and God Bless