For those of you who are caregiving and living with the person you are caring for 24/7, how are you coping?

I am looking after my mother and father in the uk.
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.

I’ve only been caretaking (part-time since my mom is carrying the full-time responsibilities daily). There are ups and downs for each of us. Thought I’d share a “win” for the day. I’ve been struggling to organize finances and medical appointments while helping my parents settle in after a cross-country move. I’ve been winging it trying to find services and information that is helpful. Today, I found several free classes for caregivers specifically relating to Alzheimer’s and Dementia at our local Community College. I didn’t even consider the local colleges would be such a good resource. I went ahead and enrolled myself and my mother in several.

I am not sure how I cope, but I do. Day to day, sometimes one task to the other. I try to find some good every day. I think about life after all this, a lot of time. Knowing this wont last forever.
Some days I am taking care of him for no other reason than it is the least painful option.

taking it one day at a time. saving my sanity with in one ear out the other. getting on treadmill to let out rage. excessive journaling

Not very good. New here and appreciate reading the messages and knowing that I'm not alone. Caring for elderly parents, 95 and 98 yos. One on hospice care, the other one extremely difficult for me to handle (triggers, etc.). Especially when a sibling calls and says "well, aren't you supposed to be caring for them?" "I thought that's what we have you there for?" I work remote and honestly it's gotten to be too much but it's easy for uninvolved siblings (who pop over once a week) to just assume you will do everything. Depression has been great - not having social interaction, missing my friends and support from where I moved.

Not coping well at all. Major depression. The constant feeling that my life is barely worth living if this is all it's going to be (and this is with therapy!). The best way for me to handle it is a day at a time. Looking into the future for myself usually doesn't make me feel good at all so I avoid that. I just try and get through the day until it's time to go to bed again and I can escape into sleep for a few hours.

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 can relate to so many stories on here. Being a 24/7 caregiver to my mother and getting constantly yelled at and complained about to other family members who did not want spend even a couple of hours with her. When she ran out of things to attack me for, she launched into talking about various slights by her neighbors and family members. She's had a victim mentality all her life but now it's through the roof. Everyone wronged her. She asked me the same questions over and over and over, probably both because of obsessing and memory lapses. She refused food. She refused medications. The arguing, the non-ending arguing about how she does not need help (while she fails at 99% of daily basics, like feeding herself and basic hygiene), how she'll refuse the caregiver that I worked hard to set up to come in to help her every day (after being completely fine with her when the arrangement was made in person with both of us)... the "threats" like "I'll call the ambulance to complain if you tell me to eat".

Seeing only neverending breakfasts lunches dinners snacks drinks, medications, toilet times, diaper changes, baths, clothes changes, position changes, bedtimes....all day every day...all with an argument over how she doesn't want to do any of it. Well I don't want to do it either. I've decided within 6 months she's going to memory care. I found a nice place close enough. It's set in motion. It feels liberating just knowing there's an end to this drudgery.

Im doing not too bad at the moment but every day can be different. Mum can be a ***** some days, I think she gets bored lol. I have to just walk away. Now shes under hospice care at home(for comfort management), Im finding some family are finally showing some interest, I know the interest will be brief and they still dont really understand and havent offered an ounce of support in any way.

How am I doing?I'm just doing what's expected of me here.And that's not even enough.I have really been thinking a lot lately and I'm considering leaving my mom's home.3 years straight of cooking cleaning running here there and anywhere she needs.The petty arguments she starts.I honestly just can't anymore.I love her but reality I did not think in my wildest thoughts it would be so hard on me and overwhelming.😒😒😒

Not so well recently. Backstory: I quit my job 3 years ago to be a FT caregiver for my then 90YO mother. I am the last of my siblings. Both brothers were older and her favorites. My mother treats me like a hated stepchild. But I am her blood. For example, at one of my brothers funerals she told me I was not allowed to cry because it was her son who died. (The other brother died during COVID so there was no service.) My oldest brother had 3 sons and I have one son who is the youngest although he is only 6 months apart from his cousin. My mother constantly refers to her 3 grandsons. After several months of this I finally told her "you know you do have 4 grandsons, my son is your grandchild too." All she said was "I know 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.

Right now, I'm not doing so well - I had a goal of "winsome tenacious courage" for this journey, but today my courage is flagging, my tenacity wants to just let go, and there's no smile left...

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 not coping. Does that answer your question.

I posted a long rambling thing here and just deleted it. I just want this to end. I just want it to end; it's very hard. I'm invisible, unappreciated, abused by siblings and I just want it to end. I pray I get a life before it's all over and I can be free. My mother also doesn't appreciate me and is never wrong. Never. Always been a bit of a narcissist and I see it so much more now that I'm here all the time. Never apologizes. Now I get where my sister learned it.

I think what I find hardest some days, is the people who come at me with 'good intentions', who don't understand how important having SOME boundaries is. I have felt this week a few times like I've been expected to explain myself completely to people, and sell them on the fact that while things are precarious, I do maintain a delicate balance, and that things will probably be fine AS SOON AS THEY GET THEIR WELL INTENTIONED NOSES BACK OUT OF MY BUSINESS!!!!! And quit taking up what little time I have to spend not thinking about all of this for a short time. There are days I think people with good intentions are worse than those with bad, because they're so damned sure what they are doing is 'helpful'. I've always tried to sense 'will stirring the pot do more harm than good', when involving myself in other people's matters, and I get frustrated with those who are clueless on this and don't take polite hints. While I've often needed help, I've never needed a pointless interrogation.

I find it difficult some days. Even though I accepted what is happening. But some days anger emerges so strongly I feel like raging at this senseless disease. Then if I focus and remind myself, whatever happens happens, qe sera sera.

Actually, I'm feeling pretty good right now. Some days are harder (emotionally) more than others.

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.

@abethdl

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.

abethdl, welcome. So glad you found this forum. It's a life saver for many. It was for me for 5 long years taking care of my Alzheimer's mom.
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.

Thanks @anytown

@abethdl

'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

I am new to this forum, although I have been a caregiver for awhile. I have been encourage by a friend to reach out to a forum to help me cope. I am not just new to this forum but new to forum in general. I am a sibling to 1 sister and 4 brothers and I was married over 30 years with 2 adult daughters and lost my husband to depression and alcohol, now a widow for the past 2 years. The same week I lost my husband my dad became bed ridden and COVID began. For the past two years I have been assisting my mom with my dad and required me to move in the last 3 months before he passed away in January. My mom has had heart issues, mobility issues, depression, and diabetic, among other health issues and asked me to stay with her after my dad passed. Three out of the five siblings live out of the area and the other 2 siblings have addictions and are needy. One lives with her and me now and the other has a home and comes in and out on a regular bases. My 3 siblings that live out of the area, offer no support and think it's only my job since I am a widow and live in the area. They are busy with there families and don't have time. Any time I reach out to my sister who I think can relate to me, she states that I just need to suck it up and deal with it. I work full time in an office with limited people and work with the door closed for the past two years due to COVID. Feel like I have lost myself, have no voice and so misunderstood when I try to share.

Lost and Misunderstood

hugs, jeanelf!! :)

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!! :) :)

you wrote:
"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.

you wrote:
"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 :)
(professional siblings-kicker)

@bundleofjoy

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."

dear jeanelf,

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!

hug!!!!

bundle of joy :)

I would say I am surviving, certainly not thriving. I love my mom but am stressed to the max, getting resentful and lose my patience a lot. I barely can leave the house and as I've written before, the siblings are MIA as far as any support but cause trouble and are downright hateful. They wouldn't dream of asking if they can help and on the few occasions I have asked I've either been turned down or the limit was a day and a half in the entire last year. I've asked if they take her for the day to not do it at the last moment. That's ignored because it's all about them, all the time.

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.

That’s very true about not being able to live your life because you’re a 24/7 caregiver, but then we feel guilty for feeling this way. My dad is living with my hubby and I and he’s pretty self sufficient up to a point as he can shower alone, get his breakfast and lunch together. I cook his evening meal, do his laundry, take him to Dr appointments, get his medication but at the moment that’s all I do and he’s very grateful. It’s safe to say that he has mild dementia and will get worse as time passes. We don’t really go anywhere except shopping or out for someone’s birthday. We have needy dogs who bark if we’re not home. So that’s not easy either.

I highly recommend against 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.

Louise4 - echoing what bundleofjoy and Ireland said, it sounds like you and your husband are doing all of the right things, and may God bless you for it!

I want to thank you, Ireland and bundleofjoy, for your insightful and kind words. I really appreciate your taking the time to comment.