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.
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.
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.
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?
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.
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.
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.
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.