I'm a 36 year old, only child of a single mother. My mom has had two strokes this year and is now recovering at home with me. She pays the rent and, since I had to turn down a well-paying job to care for her 24/7, I am terrified about financial problems. She did not sign up for Social Security or Medicare before her stroke, so now I am trying to backtrack all of that. It is exhausting dealing with bills, endless phone calls, mountains of paperwork, and having to do it all alone because I really don't have anyone else (I have people who offer to help but those offers seem to disappear almost as quickly as they're spoken). I am an organized and efficient person but this is all a little much, and the never-ending hoops that the government makes you jump through to get anything done are ridiculous and frustrating.
Add to that, I'm really sick of being a caregiver already, and it's only been like two weeks (she was in the hospital for a week, came home for a week, went in for another week, and is now back home). I had no idea that burnout could set in this quickly or that I would be feeling the level of anger that I feel. My mom is a great person and was an amazing mother, but quite frankly as a care recipient she's a pain in the butt sometimes. She's always been stubborn and resistant to doctors and hospitals and all of that, but it's definitely been ramped up with the stroke. Tonight as I handed her her last pill of the day she literally slapped it out of my hand. I lost it a little and yelled at her, and I feel bad about it. I apologized, but it's hard to not feel like scum just the same.
I'm sick and tired to death of the gross side of things too. The bathroom/shower issues, the lack of interest in ever getting dressed or changing clothes, the poor dental hygiene and bad eating habits, I mean I'm dealing with it because I want her to be clean and healthy, but it's still gross and literally the last thing I hoped I would ever have to do. I'm tired of trying to force her to get up, having to put up with her hissy fits about basically everything, having to spend an hour coaxing her out of the house for doctor's appointments. I'm sick of the ingratitude and the childish arguing and mocking and selfishness. It is so hard sometimes to help someone who says they don't even like you. It brings out apathy in me sometimes that I'm not proud ot.
I'm tired of being trapped in this house, not being able to just go for a walk or do my yoga or drive out to a friend's house. I'm sick of having to arrange my entire life around her sleep schedule, and feeling like I'm herding cats when I'm trying to get her out the door in any kind of timely fashion.
I'm also just brimming with resentment. No one deserves a stroke or any other health condition, but my mom hasn't had a GP since I was born in 1984, she smoked for decades and chugged Pepsi all day and never exercised and ate an atrociously bad diet, and now I feel like I'm being punished for her bad decisions. I am certainly not the poster child for good health, but at least I take my meds and go to my doctor's appointments and I try to get exercise and eat a healthy diet. Mom never even tried, despite decades of myself and other family members encouraging her to do so.
The worst part about this is that I know I'm in for a long haul because she's only 65 and she will never go to a nursing home. And the thing is I wouldn't want her to, because in the moments that she has clarity I want her to feel safe and in familiar surroundings, at home with me.
So in summation I am trying to do my best for the woman who raised me on her own, who was a great mom and who I would definitely be turning to for help right now if she weren't the one who was sick. I'm trying to not feel crushing guilt, crippling anger and overwhelming stress. I'm trying to not feel like the worst daughter in the world.
But the burden is so huge, it’s essential that you find respite and support. Try to determine what finances, if any, you have that can be applied toward in-home care, respite care, day care for mom, etc. Other people have made great suggestions about contacting Agency on Aging or similar groups for resources. “Caregiver Burden” is a real social/psychological concern that must be managed, along with and despite your mom’s illness.
We all share your sufferings.
You are marvelous. Your mom would be, in all truth, very proud of you, if she could gain perspective.
-hugs-
Some of us caregivers caregiver quiet a while before those issues. You have been thrown into the deep end.
There’s a book called The 36 Hour Day that you may want to read. And this forum here will give you encouragement and at least show you these feelings of anger and resentment are actually normal. Not great, yet very common. Also, your mothers behavior is very common. Seems like she hates you…but the disease is messing with her mind. She doesn’t know up from down, real from fake - most of the time. Yet she does have her good moments and yes, cherish those.
What I’m finding out is caregiving is the most thankless job out there. It’s like you volunteered to be someone’s punching bag. Someone who used to love you, but for unknown reasons, now wants to make you miserable. However the reason for the caregiver is known…it’s the dementia. You know your mother does love you, she just can’t tell you/show you they way she used to. Her world is upside down and she doesn’t even know it.
For the long term, if there’s any support you can rustle up…a local support group, in person, online or phone. Forums like this one they will help take the edge off. Educate yourself with online reading about dementia, caregiving whenever you can.
For the short term, take a deep breath. Remember it’s the disease treating you like crap, not your mom. Get some fresh air. Put on some music. Splash some water in your face. Pet your dog/cat…pet the neighbors dog/cat…just one positive thing, no matter how small. It won’t seem like enough, but do it anyway. Go into another room and cry until you can’t anymore. Just know you are not alone and what you are experiencing all of us on this site have been thru or are currently going thru. Look into hiring help to take some of the weight off you, look into financial assistance. I totally relate to the red tape…that’s stressful enough. I blew off a Dr appt that we’d had for months because I had the time wrong! They sent at least 4 reminders…yet I still got the time wrong! At times I think I’m getting dementia! I have so much paperwork….it seems like I’ve been doing paperwork for 2 yrs now! However, if you can get some help, it’ll be worth it.
You are only human. You feel angry when not treated right. Who wouldn’t? Don’t beat yourself up for feeling normal. I wish I could make all this go away, but no one can. Find ways to get caregiver support. It’ll be your lifeline now that you’re in the deep end. Yeah, I’ve told you some things to do….as if you don’t have enough to do already. Do the best you can…you are only human.
Since Oct 5th it's 24/7 with no life for me. Lost my job and had to sell my car just to be able to afford food etc. Have to wait 3 months until I can prove to the state she's eligible for medicaid due to them wanting her last 3 bank statements. Then once she qualifies hospice will proceed to get her in a Long Term Facility before I'm totally broke at 65 yrs old. :(
The only help I'm getting right now is a Hospice aid that comes to sponge bathe her once or twice a week in her hospital bed and a nurse visits to see her vitals and order her meds.
It's time to take care of you and avoid what so many of us are dealing with.
Good Luck
You will get Burn Out!
You have to get Caregiver Help before both of you end up in a Nursing Home.
Check with her Insurance and see what is available.
You might could have her put on Home Health where she would have Aides coming 2-3 times a week to help her shower and a Nurse come 1-2 times a month to your Home.
You need someone to give you a 8 hr break 2-3 times a week Minimum.
You might check with Free SeniorAdult Day Care and see if she can go somewhere for a few hours in the mornings.
You must find a job, if only to earn Social security when you are older and to interact with others. Get mom on SSI and Medicaid. She is already eligible for Medicare. Care for her but don't die doing so. Btw, it's normal to feel like you're drowning. It takes a while before you can get the paperwork and schedule in place. Hugs to you. You are doing great!!!
Check out...
https://leezascareconnection.org/programs
It was fouded by Leeza Gibbons whose mother died with Alzheimers so she totally understands the stress of caregiving.
concern for your own health & wellbeing. Good luck:( I was in your shoes, but did not quit working until I was eligible for retirement) take care of yourself!
Let the hell I live inspire you to better your situation. You are still young, there's still hope for you to have a good life. Find a way to get out - away from Caregiving for her the rest of your life.
As an only child, over time you will wind up isolated with her. without help. At least you have other family members to speak to.
Call the Area Agency of Aging, find a Social Worker to help you with advice.
Talk to them, see how they can help you re-start your life before it's too late for you.
Do you have POA/HCPOA for your mother?
If your mother possesses no independence, then look at some care facilities to place her in.
Start doing this now. I'll tell you what will happen if you don't. Not what might happen but what WILL happen.
You become a slave of sorts and lose your own independence. Then because mom is paying the rent that will turn into her having to support you because you don't work and do nothing for her. If you think your life is a misery now, just wait. Let your situation continue until weeks turn into months and months turn into years. Then you become me. There is no joy or hope. You live as a slave and at the mercy and whim of the person you're forced to take care of for free. You can look forward to them grinding you down into dust because they're the one paying the rent and "letting" you live in their house out of the goodness of their hearts. This is what your life will become. You become a loser in the eyes of everyone you know including yourself because you've been discounted, devalued and abused for so long that it's become a way of life for you. Whatever love you had for mom disappears and turns to anger, resentment and guilt. You will beat yourself up with guilt because of the anger you feel because the love you had for your mom is replaced with resentment and dread. This is where your life is headed if you let this caregiving situation continue as it is.
Be your mother's daughter not her caregiver. You will both be far happier in the long run. Good luck to you.
You quit your job to care for her? Are you concerned about your long term finances? You cannot be very old, and probably have 20+ years still to work and save.
It is NOT your fault your mom ruined her health with poor choices. She should and could be living independently with some help and you could oversee that--all the while having your own life.
My mother also tells me about all her aches and pains and whatnot. I truly don't know what is REALLY wrong with her (aside from being 92!)..she plays a good game, for sure.
I'm sorry mom had strokes. But they're not your problem to fix, not can you. And as far as FT CG, it gets 'better' but not really. I think you just kind of sigh and give up.
How about you take an afternoon off and go sit somewhere that's NOT home and gather your thoughts. Is mom going to get 'better' enough that she will be able to live alone? Or do you need to start shopping for an ALF for her? Look at getting back into the workforce, maybe just PT right now, or even from home. Then when you leave, placing mom or not, you won't be totally broke. Do it slowly and tell mom as you go what you're doing.
Yep-the SS thing is a pain to navigate! I swear they make it harder and harder on people who have less ability to navigate it!!!
You have potentially 25-30 more years of the same old, same old. If you can handle that, good for you. Few people can.
Most of all--DO NOT LET GUILT GET TO YOU!! You have nothing about which to feel guilty!
((Hugs))
Consider what your own parameters of participation will be.
Also, treat this as a job. Outline your tasks for the day, work on them, take breaks when needs, especially when she's being difficult.
I do understand the immediate immersion into caregiving and how overwhelming it can be. But remember, you're caring not only for her, but for yourself. You're ENTITLED to have down time.
Please tell me (I'm genuinely curious) what your plan is for
1. Supporting yourself
2. Being able to retire
3. Having a social life
4. Being able to maintain your health, physical and mental?
It doesn’t seem like this is a viable caregiving situation for you OR your mom.
I think in your shoes I would reach out to the local Area Agency on Aging and get her a "needs assessment" and possibly case management. You leapt in to care for her during the "emergency" phase; now it’s time for a long term solution to her needs.
The long term solution cannot be you sacrificing the rest of your life.
After a stroke, if going home after hospital/rehab to live independant again is not possible, the options I can think of are A. live with family (if you have one & they agree), B. move into supervised living (AL or NH). or C. hire a fleet of aides (if financially & mentally able).
You choose A. as a gut reaction, to help - from love & duty.
But if A. doesn't work out to be a workable plan... what's next? What other options are available to you?
Maybe A. plus as much hire help as can be obtained & afforded? But the stress & financial insecurity for you will continue. Tell me why B. is off the table?
Sometimes, when elderly people have aches and pains, they want others to feel their pain.
It's very draining. Maybe hire a caregiver to help with mom. So you can ha e some respite.
Please take time for yourself too. Big hug.