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.
Turning down a well paying job is not the way to go. You will need a job to pay taxes so when it is time for you to retire, you will have enough money in the system to get Medicare. Caregiving is hard on one person. Please check into home care agencies. You can do private pay. Your mom can pay for her own care or either get her set up with medicaid so that she can get home health care in the home.
Get a job. Get self-focused again and develop a life of your own outside of caregiving. There are some pretty good caregivers out there. If all else fails, get respite for a few days.
Has anyone suggested that you might be grieving? That you're grieving for the life you once had. Grieving for the simple things, the freedom to do things like take a walk.
If this resonates with you, perhaps you could write about how you're feeling. Do it in a journal where no one needs see it but you. Don't edit yourself, just write whatever comes to mind. You may find unburdening yourself this way to be helpful. I've also found a few minutes in the shower, crying as the water streams over me, to be therapeutic.
The only thing you can do is start planning now. You have to decide. If you are planning to keep her at home, you HAVE to try to get some sort of home helper, or else you will totally burn out. This period will last for a LOOONG time. Some people are caregivers for 20 years!
Or, you will have to find a care home. No one wants to place their loved one, but sometimes it has to be done.
So, be sure to get POA, get an Alzheimer's clock, an ID bracelet, and a room camera.
And, join the Alzheimer's Dementia Caregiver's FB Support Group. You can vent there without judgment.
He left as soon as possible to go HOME. FAMILY. PETS.
OK, well now it's a year later and he can't do anything that he probably would have learned at the stroke places. He is now more infirm as a result.
That makes you trained in care provision for a stroke survivor, does it? Up to speed on all aspects of physical and mental health impacts, skilled in managing the physical needs, able to find workarounds for all the challenges? Suddenly able to work 24/7 with no respite?
If there's one key problem, it's having completely unreasonable expectations of yourself. What support if any are you getting with this?
Well, you came to the right place because we will offer you as much support as we can.
To begin with may I suggest you get in contact with focus on the family ( check out their web site, yes it is Christian and has a lot of helpful recourses there and you can talk with a councilor for free)
Next, may I suggest you contact the local Salvation Army. They are another one loaded with great recourses.
After that may I suggest you contact the local Alzheimer's society. There are another one which will offer great help.
The one bonus for you is you do not have free loading relatives which makes the job all the more difficult.
Oh, and as for the emotional hell you are going through, may I suggest you go to the best councilor there is. His name is Jesus Christ. He is just a prayer away. Although this may sound corny it is not. He is real. He loves you, He cares about you. Everything you are going through, He has gone through so He does offer the best help.
I know because He is the best councilor I have gone to through extremely difficult times for the last forty years.
Consider the big picture. Your finances will be a wreck if you’re not working. You can’t keep this up. Your mental and physical health will really suffer. Her care will become more demanding and you simply won’t be able to keep up with it. What would happen to her if you became too ill to take care of her?
Contact your Area Agency on Aging. They will have a lot of options and ideas about caring for your mom, including how to get in home care for her. Red tape in applying for Social Security, etc simply is and you can’t escape it. Once it’s done life will be better. It’s overwhelming because it’s crazy making and you’re drowning in so many other tasks and emotions as a caregiver for someone who is angry and difficult.
Never say never about a nursing home. Don’t bring it up at this point. If it comes to it, search through Medicare website to find the very best one you can. Visit her a lot. When a facility knows family comes a lot and is involved, the care can be better because they know there’s another set of eyes on the loved one.
If you don’t have it already, do get Power of Attorney. Your life will be so much easier. You’ll be so glad you did when dealing with doctors, etc. The way I put it to my brother was “You know how I’m doing all this stuff for you? I need you to sign this giving me permission to take care of this for you in case someone asks”.
Don’t sacrifice yourself by doing it alone.
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.
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.
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 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.
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.
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.