Hi AC Forum,
I feel like I run the gamut of emotions on a weekly basis. I think that is a difficult side of this caregiving. Not being able to fully satisfy - or not being able to satisfy for what should be a normnal period of time. And on the same token know that each day you go down this path you just running to the finish line.
It's the craziest and horrible life as I am not able to live my life, yet I have a hard time thinking of my mom living with less. Also not being the face of which she says to at first seeing her and asking her how she is, "Better now that I see you!" Knowing that you are the comfort in their sight. Yet what it takes from one feels enormous - emotionally, monetarily, physically.
How are you doing?
Mum was discharged from hospital 9 days ago but she is still very unwell, under weight and reluctant to eat and drink, has been in various hospitals since Jan.
My dad broke his leg in December and is still recovering from that.
I am pretty stressed out, does not help I have nerve damage in my left hand abdomen and stress makes it flare up.
Some days I am taking care of him for no other reason than it is the least painful option.
I know others here feel this way too. I feel for you and know your pain and frustration AND the huge sacrifices you make for your LO. It's an amazing thing we're doing and I try to remind myself of that.
I have become exhausted at caring for her when she is verbally abusive to me all the time now. I have increasing health issues due to the stress. My mother not only verbally abuses me directly, she contacts every family member she can and tells them how I hate her and how abused she is in my home. And they believe her. We have had to put up cameras in our home and record our conversations in order to protect ourselves from her allegations. She is a narcissist and has dimentia along with other medical issues. She recently fell and hit her head. The hospital, thankfully, could not find any damage caused by the fall except for the giant goose eggs on her head where she hit the table.
She historically will be on her best behavior when my husband is home. Yesterday he had to go out of town and she started in on me at 9AM. She would make comments about her hosiptal stay and I would try to clarify anything she was confused about but if she had an idea in her head about what happened, there was no convincing her otherwise - even though I have the doctors reports to proove it. I try to let her have her delusion, but when she go so far off as to say she is "going under the knife and might die while she is under" I have to intervene. She's not having surgery. But all I get in return is that I don't understand and how much I hate her and I just don't know. I desperately tried to stay calm with increasing accusations being thrown at me but I drew the line when she yelled out "I even put YOUR son's name on money that was supposed to go to Rick's children!" She has set aside a small bank account for her grandchildren to inherit. But I guess, in her mind, my son should not be a part of that. After I calmed down, the lashing out and telling stories continued. She asks me for clarification on certain memories then tells me that I am wrong and I don't know anything. I try to bring logic into it but she has lost all sense of it...and she will not let the topic go. She keeps going over the same thing again and again and again. I am not sure if she is trying to get a different answer out of me or if she truly does not remember we discussed it 5 minutes ago. She does repeat things stated in the previous conversations which leads me to belive she is jsut trying for a different answer or trying to "catch me in a lie." One thing is that I will not lie. (I personally do not see that lying is hepful for anyone so I am known for being bluntly honest. If you don't want to know, don't ask me.) The conversation continued on and on and on... I tried to stop her inquiries multiple times but she continued. Toward the end of hour 9...I lost it! I yelled at her that I could not take anymore and I was DONE with it! She then lashed out with a personal insult and I apologized for escalating the situation by yelling. The last thing is that she insisted I call my son in front of her so she could prove me wrong about something I had said earlier in the day. She said she didn't want me calling him without her and telling him what to say. Which is something I have never done nor will I ever do that. Well, it did not go in her favor. She got quiet, then finally said goodnight.
Thanks for listening.
Mom hasn't been feeling well (more than usual), so she's had low energy, for which she (FINALLY!!!!!) made a doctor appointment to investigate. The last several weeks, it's felt like this increasing ball of resentment against me because she doesn't feel well.
My sister (who lives out of the country and takes NO responsibility for mom whatsoever) posted some article about chronic illness and how people who aren't sick don't understand what it's like - my mom read that, and now she's feeling worse about everything, but she won't discuss it because I'm not the one who's sick, so I couldn't understand....
She won't discuss ANYTHING. If I ask her how she's feeling, "fine." If I ask her if she had a good sleep, it's either yes or no; if I ask for any details, she either gives this hopeless "it's never going to be any better" response or she gets defensive about all the things she's tried. If I leave her to her thoughts, though, I'm ignoring her.
She was enthusiastic about going to church regularly, but lately, she hasn't had the same enthusiasm. She says she wants to contribute, but she either doesn't want to do any of the things they've asked her to do, or she finds the tasks boring. She didn't make the meeting before the last one because she wasn't up to it.
Now, she's trying a yoga class to see if she can get some balance and strength. We signed up for the local rec center, and she got the class for free, which was good. She did OK with the first class, but the last class she attended left her dizzy - that's kept her from the most recent ladies' meeting at church, but she doesn't seem interested in the ladies' meetings any more either.
The only ones she wants to talk to are my brothers - both of whom live out of state and have their own families/responsibilities. They stay in touch, but it's hard to do long-distance. When they do call, she's so grateful for the attention that it actually perks her up for a couple of days - then she has a let-down from that, and she's back to "Eeyore" mode.
I'm hoping that the doctor's appointment will figure out why she's feeling dizzy and not having a lot of energy - that might help with some of the other things - but until then, I feel like she has this giant pot of unspoken resentment and unmet expectations simmering, and it's all my fault that she doesn't feel good and that her life isn't what she expected it to be. :(
I am more of a homebody than most people, so staying home doesn't bother me. Plus, I have a work from home job,
I am very grateful Sam's Club ships and I really appreciate our delivery driver.
Staying with a somewhat steady routine helps a lot!
I try to get up between 5-6 am. Go to bed no later than 10p. If I do go to bed later I'm screwed up all the next day.
I have put some back up supplies in Mom's bathroom right near her toilet, on small shelves within her reach for extra panties and pads during the day.
This has helped her a lot.
To ease her confusion, I put clothes in both her dresser and chest of drawers, so she doesn't just pull her clothes out searching for stuff, and just leaving clothes everywhere.
I'm slowly getting rid of things she does not need --- A drawer full of unmated socks, as an example. I bought new socks - paired them and put them in the drawer in their place.
I have been using little laundry bags for bras, panties, socks, so none get lost in the wash - makes keeping her clothes more organized. I take just just few minutes to straighten her drawers out whenever I put her clothes away.
I wash her bath and bedroom floors with vinegar and Pine-Sol each morning while she is sleeping. Keeps her bathroom smelling clean.
So, I'm finding my stress level going down.
Oh! -- My crazy SIL and her brood have finally realized I am not going to let them bully me. They have learned to call before coming out because I will call the police to remove them.
I second anytown's emotion. I get you....and we have so much in common....my mom moved in and COVID started right after I lost my husband to mental illness. I have just recently found this forum and already think it's a Godsend and full of great people and good ideas. Much like my grief support group, it helps to know you're not alone and others understand.
You are in good company here. We are/have been caregivers and we understand all the feelings that a tired, burned out, lonely, angry, resentful caregiver can feel. Some of us wish for the end to come and feel guilty for thinking tthat.
Feel free to share your stories and feelings. We understand.
'Feel like I have lost myself, have no voice and so misunderstood when I try to share.'
You're not misunderstood by me, I understand what you're going through completely
Lost and Misunderstood
first of all:
definitely good to follow the saying, "better alone, than badly accompanied". and that applies not just to fake friends, but also to family members. yes, stay away (mentally, physically, any other way) from your siblings if you can.
regarding your siblings' recent last minute call to your mother, instead of to you: again, it's super disrespectful towards your time, your schedule. their excuse "it's controlling" to talk with you --- awful siblings will use any excuse. awful siblings lie to you, to others. they're not to be trusted.
regarding your mother not standing up for you against your siblings: i understand. and that double hurts. you should be heard, and she should stand up for you. 1 way is for you to honestly let out (i'm sure you already have) all the anger against your siblings (directly to them - for example by email, sms, or verbally on the phone), and then move on (if you can). i said all i wanted to say to my siblings. now i basically don't talk about them anymore, to others - i got them off my chest/heart/soul. but 1 way to get them off your chest, is also if your mother could do something rrrrreally positive (it's nice she folds towels) for you --- i don't know what, but something that makes the whole situation more right. anything she could give you, and only you (not the siblings)? if the situation is a bit more fair, your justified anger will also lessen.
your photography!! yes please continue!! :) :)
"If they were both in another state or I were an only child, I'd be 100% happier and it would be difficult but better if it weren't for their abuse and attitudes."
i totally understand.
and they're abusive -- so even more reason to get them out of your life, if you can. i understand they sometimes call your mother, visit, so you can't totally avoid them. but try. nothing positive comes from them to you.
"only child" --- i decided (i see others have too, on the forum), that I AM AN ONLY CHILD. they're not my brothers anymore. i've mentally completely cut them out of my family. i feel better. in fact, i even wrote down somewhere to myself, i'm not related to them.
"I wish I had siblings who were warm, open and caring. It would help in so MANY ways."
of course. but that's also like wishing:
i wish my elderly parent had perfect health right now, was independent, this way my freedom is back.
not happening. our elderly parents have their problems.
and our awful siblings are awful -- but bundle of joy will, as said, be kicking our siblings in the butt.
continue upwards!! jeanelf!! 1 step at a time, towards a GREAT LIFE. you can do it.
bundle of joy :)
Oh, my goodness, thank you for your most kind and caring response. It brought tears to my eyes, truly. I am not used to such kindness and to being heard. I thank you, too, for your encouragement about my photography. That is very inspiring to me.
Yes, I'm afraid my siblings are not the sort of people I need to be around. I wish I had siblings who were warm, open and caring. It would help in so MANY ways. Even with my grief. I am afraid after my mom dies, I will be totally alone and that is somewhat of a scary thought, but better than being with them--they are only an illusion of a family.
My mom tries to help me out in tiny was (I bring her the towels out of the dryer and she folds them for me (lol)) and she loves to use the shredder for boxes I've gone through and she doesn't complain about anything. She says she would help if she could. I love her and I just keep telling myself someday this will end and to enjoy her and our time together while she's here. Someday it will end and I will miss her so I try to keep that in mind. I only wish she'd stick up for me with the siblings but she never has and she never will. I think that, after all I do for her, is the loneliest part. But it's no use bringing that up to her, it serves no purpose and changes nothing. If they were both in another state or I were an only child, I'd bee 100% happier and it would be difficult but better if it weren't for their abuse and attitudes. This week after another last minute call to her to come over which she neglected to remember to tell me about (I've asked them to call me instead because she doesn't remember our plans--but they say then I'm trying to "control" them and say horrible things about me)--I told her perhaps she should go spend a month with them. That might show them what's involved and they may change their attitudes. But that would never happen--it would "inconvenience" them. I was told once before when my father was ill they couldn't help because "they have a life."
i just read your message (it's here below mine). hug!!
you really have gone through a lot. please:
1. finish that photography degree! you were so close. don't stop. find a way. it's important for lots of reasons - not just the title/degree.
2. there's an image i like (you can find it on the internet). a man who digs for diamonds and he stops. another man who also digs for diamonds and continues, and succeeds! the 1st man was sooo close; he gave up just before; if he had known he was sooooo close, he wouldn't have given up.
3. i bet your pictures are beautiful!
4. your husband's suicide...i feel sorry for him, i feel sorry for you. but also i feel he shouldn't have left you with a messy situation: poor you. things in the basement he didn't sort out, etc. some people, sometimes, think of suicide - but generally if one is really serious, one tries not to leave trouble for others before one does it. of course, he must have been in deep pain/depression. but I feel very sorry for you, having to not only deal with shock, grief - but also with mess (basement, etc.).
5. siblings helping 1.5 days total in the entire year! ridiculous siblings. and you asked "not in the last minute" and they ignored that, too. disrespectful of your time, your emotions, schedule. andddddd typical: when one has awful siblings, they're awful in every way, not just in 1 way. sooooo jeanelf, you know what that means? well, you might not know. but i'm a professional siblings-kicker. and your siblings will get kicked in the butt by me.
6. solution to your siblings? my opinion: have as little to do with them as possible. they're bad people. i have basically cut contact with my awful siblings (after i told them off; they deserve to hear my anger). is there anything your mother could give you, do for you (your mother has a sound mind!), to make this totally unfair, exploitative situation of you, right? at least a bit more right? as for your siblings, karma will take care of them.
7. you watch TV, etc...dear jeanelf, i wish you to be able to relax, be happy, flourish. find a way. there's always a solution ---- somehow. your life will rise up again. don't let anyone beat you down! not life! not anything, anyone!
bundle of joy :)
She had to leave assisted living because she is now wheelchair bound and has a colostomy and they told me they aren't licensed to do that because it's medical and she spends sometimes a half hour or so trying to do it herself and it literally takes 2 minutes. When my husband tragically died four years ago by suicide, I was in deep grief and shock for two years, which included taking her in at the end of two years and being isolated with COVID. I thought my way out of the deep depression that caused was to travel and "find my self, find my peace and place in the world" while I still had time--I am a cancer survivor, too. Instead I am here; my retirement is ruined, my finances are ruined. No good deed goes unpunished. I love my mom but I never ever should have done this. She does take it for granted and although she sees I now have insomnia and the house is falling apart because I cannot do the upkeep, take care of her everyday, work a full-time job from home, and I haven't even gone through my husband's things yet which take up the entire basement and 2 storage spaces (his parents died right before him and he brought everything here.) I am overwhelmed, overstressed and it's going to eventually kill me. I need to find a solution. There's no money left, so assisted living won't work (and it won't work because of the colostomy). However, her mind is 95% there (no dementia) so putting her in a nursing home would be horrible for her--sharing a room with someone who blares the tv, no activities, so many with dementia that she wouldn't be that able to relate to--that has been our experience in rehab with nursing homes. We can't afford the others. I just want to cry every day.
I try to tell myself I'm doing a good thing. I try to take a walk and engage in taking photos (I used to be a serious hobbyist). Photography has been proven to help with mental health and helps me to find beauty and is a good distraction. I was getting a degree in it when my husband died--a life dream. No more. Mostly I lie in bed and watch tv and the house falls apart around me. Between my husband's suicide, the trauma of the cancer and this, my life is definitely shortened. My only chance was to be free for a while from all of this and I blew it.
These decisions are often made with good intentions under perfect conditions.
It will make sense at the time.
In reality, watching your parent deteriorate with no boundaries or temporary exit will destroy your sense of self.
Working at home also makes sense until people realize your Living at Work.