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.
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.
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?
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.
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.
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))
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.
Do you have POA/HCPOA for your mother?
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.
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!
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.
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!!!
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.
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
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.
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-
Listen sweetie. I said the same things as you, about how I would never put her in a nursing home and how she didn't want to go anyway.
I miss my mom so much. I burst out crying yesterday because a memory came to me so vividly about her. But, there is so much CLARITY now that she is gone. I love her to pieces, but she would have been so much better off if at the age of 25, I put her in assistant living. Because at the time, she was at least able to walk with a walker and in the beginning, I only did things like laundry and cooking, and standby assistance for showers. Gradually, she got worse, took a few falls, messed up her back. Became bedridden during the last 6 years of her life.
I was her ONLY caregiver. She did have CNAs coming to bathe her 3 times a week, which was helpful, but even with that it was a burden. (Ask the doctor to order you this, if she has Medicare, she should be able to get CNAs to come bathe her). My mom was a fiery woman, used to be very independent and always got her way. Very sweet, though. She wasn't horrible, I'm just saying, she was a woman that knew what she wanted. It was... HARD. My brothers off in other states with their family. We had no family here. It was just me. I managed bills, her pills, her dressing, Hoyer Lifts, taking her to doctors appointments, her dentures, her voiding and bowel movements. The whole nine.
I still sometimes here a sound (probably my neighbors) that makes me think its her, and I have an urge to jump up and run to see if she needs help. The PTSD-like crap will get to you. I don't even know if it's PTSD. It's something.
Look. I joined a gym and MADE time for myself when I was taking care of my mom. You have to. You HAVE to go on a walk or do yoga. You matter, too.
But anyway.... I was saying before... that I have such clarity now. I would have done everything differently. And one thing that I learned... no matter how much your mom says she doesn't want to go to a nursing home, the fact is, she's just scared. Deep down, any sensible human would choose a nursing home over putting burden on someone they love. But she isn't sensible. She's knocking pills out of your hand and she has had strokes. She's sick. So she can't think logically about the matter, but you can.
You'd be able to visit your mom in a nursing home, even take her out shopping or out to lunch sometimes, come by and visit her and tell her about a new guy or job in your life. About your new yoga class. Have photos for her to look at. Grandkids for her to visit with. All these things, I wish I could have done with my mom, but can't, because I never gave myself a life.
You need to take care of yourself.
1 - Your mom's care will be overwhelming if you are the only person caring for her 24/7/365. Burnout is inevitable if you do not get enough "time off" to meet your own health needs and social needs.
2 - While I admire your dedication to your mom and her care, you are neglecting your own retirement. You need to secure your own financial state first and being with mom second. Nobody can secure your finances or retirement but you.
3 - Everything seems overwhelming. You need to sort out the issues and create a plan. Meeting with a social worker and a counsellor - even televideo meetings can help. The social worker can help you locate and access all the resources available for your situation. A counsellor can help you sort out the emotional overload and create a healthy plan for dealing with your mom.
4 - There are lots of ways that you can work, get enough time off, and help care for mom. You can not care for her 24/7/365 alone.
a - Ask for help from family, friends, community of faith, and paid help. Some folks will be OK with sitting your mom for a few hours weekly. Others may be able to help with household tasks: housekeeping, meals, yardwork, running errands...
b - if you can not get enough help to care for mom at home, then it is time to look at outside resources. Adult Day Care is a Monday through Friday daytime option; they care for mom in a nursing home of private home while you work. Home health aides can also watch mom in your home while you work. Assisted living usually consists of having a private room or suite with home health aides that assist throughout the day. Full care is for those that need frequent care by others. Check to see if mom's insurance and finances will cover any of these services.
c - If mom doesn't have enough finances, help her apply for Medicaid. Help her also apply for Medicare and any other public help. You can make an appointment with Social Service. It might help to review their websites and gather all documents needed. If your mom ends up in the hospital again, ask social services to help you with these tasks.
d - If mom needs to use Medicaid for help, she may be best served in a residential facility that takes Medicaid clients.
A good daughter or son makes sure that their parents are cared for... even if it means you can not do the hands-on care yourself.
I would suggest finding a geriatric psychiatrist. They are very hard to locate - but well worth it. They can offer medications that ameliorate many of the behaviors you describe. The behaviors you describe are intolerable for anyone - it is not a case of your lack of patience or love.
You are finding this hard because it is the hardest job anyone will ever do. Medicare should cover an aid 3 times a week to help with bathing and dressing. They should also cover a social worker to come to your house and let you know what services are available in your area.
I am so sorry you are going through this nightmare at such a young age. It will pass. The workforce you left will take you back. The patience, creative problem solving, organizational skills, communication and task completion skills you are honing now will enhance your value to an employer.
Best of luck to you.
Your mother would adapt too, but you are NEVER going to adapt to this level of care. The next time she goes into the hospital, refuse to bring her home. The hospital will have a social worker you can talk to. They will then fast-track getting you the help you need for placement.
Read the horror stories here of how this ruined other people who took this on and could not do it without a serious toll.
You have it much worse than I do right now, and I can so wholeheartedly understand your frustration and guilt. It will only get worse if you continue down this track. In the meantime, get help anywhere you can.
I recently put her into a memory care facility. Not every facility is perfect, but a lot of these places don't look like the traditional nursing home. My mom has her own apartment and the place looks like a hotel. I would try visiting a few places to get a feel for them yourself. My mom would still prefer to be in her own home, but I have peace of mind knowing that she is safe. I felt really guilty for about a month, but it really is better for both of us. Even some of her friends have visited and they can see that she hasn't been dumped in some awful place.
I've likened caring for my mom to being a lifeguard trying to save someone. You can't fight the person coming to your rescue lest you both drown.
Problems with long and short-term memory:
1. forgetting that's she's already asked the a question just 5 minutes later, repeats herself. Seems to come and go.
2.Often reintroduces me to those I've known for several years.
3.Showed up a day early to pick up friends for dinner, another day an hour early.
4. Forgets that she's ordered something online or orders an excess of items.
5. Has several piles of mail around the house.
6. Can't keep up with her emails (I have access to that and clean out the spam for her)
7. It's hard for her to make phone calls for things that need taken care of or fixed. Gets confused as to who's who with vendors.
8. She has items that should have been returned a year ago sitting on her desk.
The list goes on and on. I try hard to help her with all of it but she's resistant and stubborn. The caregiving has barely begun and I'm already frustrated and angry. Thank you all for the advice! I want to be her daughter, the sweet one that she talks about.